tag:blogger.com,1999:blog-13430672798704962012023-12-24T19:58:14.872+13:00The IPWSO BlogNews, views, thoughts from the International PWS Organisation.Tui Chizownhttp://www.blogger.com/profile/11362569853162067460noreply@blogger.comBlogger205125tag:blogger.com,1999:blog-1343067279870496201.post-85347069968623253572019-10-06T10:51:00.000+13:002019-10-06T10:51:19.677+13:00There's nothing like it<div dir="ltr" style="text-align: left;" trbidi="on">
It has been a while since I posted anything about my daughter. She has just celebrated her 35th birthday. She was diagnosed when she was 2 yrs, so that's 33 years of my life dedicated to, dictated by, and marked out by PWS. I have survived, her sisters have survived, our marriage has survived, and she has survived albeit with a few brushes with the law including a one-year remand in a lock-up facility which is a deviation from being in prison for those with mental disabilities. It's a whole other story. We've survived a lot, as I know so many other families have also.<br />
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I look back on those 35 years and often wonder how we did it. I think it would have been almost impossible without the help and support of various agencies and Salisbury School (a special residential school where she went for 4 years), not to mention the residential care she now receives. I know that many families have not had this privilege and many more face basic educational rights as they advocate year after year for their child's rights.<br />
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My daughter did not receive growth hormone treatment as it wasn't available here at the time she needed it most. However, here in New Zealand our PWS Association fought the medical agency that controlled all drugs and their subsidies, and petitioned the government and didn't stop until we gained recognition for PWS. Being a small country, it was easier for us to trace nearly all families and visit all areas to provide help and support, knowledge and training. It was not easy, but I look back and think we were lucky to have the energy and determination as a parent group to do this and get results.<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgPPTfLEvDC0fy3qi0F4huLB4YpJMJx0akR1z5SPkE3t1xyMlMRv5ixHgosg7iMdkWAkQp-pOosu58whgW7A0FvifmcDGaSVjG_LgnX0ek2W9uxqU-_p8B0VrHyXNkDqMqHN1c6gVzSpe4/s1600/secret+santa.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" data-original-height="279" data-original-width="241" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgPPTfLEvDC0fy3qi0F4huLB4YpJMJx0akR1z5SPkE3t1xyMlMRv5ixHgosg7iMdkWAkQp-pOosu58whgW7A0FvifmcDGaSVjG_LgnX0ek2W9uxqU-_p8B0VrHyXNkDqMqHN1c6gVzSpe4/s200/secret+santa.jpg" width="172" /></a>Meanwhile, at the age of 35 my daughter has gained confidence, learned life-skills and I can see huge improvements and accomplishments achieved. She is still, of course, naieve and child-like in many respects as she has just demonstrated when our large family decided that a Secret Santa might be the way to go this Christmas. She sent a text to both her older sisters, "I would still like presents as I am a special adult. I'm kind of a kid in a adult's body. I would love a voucher for some books/I need a cotton duvet cover, queen size, at least 500 threads." You might say 'naieve', you might say, "pretty much got that covered!"<br />
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She, like so many of our kids with PW, is warm-hearted and generous. To a fault. Her nieces and nephew are always getting presents from her - and she is a very skillful present-shopper. I rely on her to pick the best presents for the grandchildren as she just knows what's in and what's out. On the other hand, she phoned me recently to tell me about a man she'd 'met on the internet' who needed help. "He's been to social services and they won't help. He's been kicked out of his home. He's hungry and needs food. I've got food that I don't need (!?) and I've said I will meet him and give it to him." I'm pleased that she phoned me first. With some good explanations as to why this might not be such a great idea, she has agreed not to meet him. However, she did suggest she gave the food to the police and they could go and find him... Probably not such a great idea either, I countered.<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi8YDoEkytLmMcGLczEFqHBkIAdMdLhWcB79YElL9S25mVwVxsgytyfTDZ3RM5izRzxtWRRhq6tcFAQmsrig0K-bI5zSKZzBXVrmzU0vcDe2AH-AlLMpz9dY2pWLlX61emeWNFp_NLY0Yg/s1600/reborn.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" data-original-height="981" data-original-width="736" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi8YDoEkytLmMcGLczEFqHBkIAdMdLhWcB79YElL9S25mVwVxsgytyfTDZ3RM5izRzxtWRRhq6tcFAQmsrig0K-bI5zSKZzBXVrmzU0vcDe2AH-AlLMpz9dY2pWLlX61emeWNFp_NLY0Yg/s200/reborn.jpg" width="150" /></a>All her life she has loved animals and dolls. As we've always had animals from donkeys to chickens, I'm not all that surprised. I'm not unduly surprised by the dolls, either because many girls and women with PWS have a grand collection of dolls. But this year it has been a challenge because she wants a 'reborn' doll (no, I didn't know either, but they are dolls that are the same size and weight as newborns and are so realistic it's unnerving). These dolls - the best ones - are hand-assembled, painted, with real hair implants... you get the picture. They also cost nearly $1,000 in our money. Her heart was set on owning one, "it's the closest I'll ever get to having my own baby".<br />
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After trying to dissuade her, I gave up and decided that if she could save up until she had enough money, she could have one. I thought this would teach her the benefits of saving, plus patience. All went well until the woman she was texting about her reborn asked for a deposit. That was not part of the plan, I said, we agreed to buy one when you had all the money. All hell broke loose. There was an all-day and most-of-the-night tantrum. The only way through this was to write down the cost, time it would take to pay off, likelihood of disappointment, the cost of custom's tax, insurance, etc etc. Finally she settled on a less expensive doll that she could purchase outright - but wait! She had enough money by now to buy two... so, as I write this, we await the arrival of two new-borns into the family. I only hope they come up to expectations.<br />
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There are so many different things about PWS - and I'm not talking the scientific genetic stuff - I'm talking the human differences, the unexpected behaviours - good and bad - the insights you get into an unfiltered mind, and the learnings about human nature. It's not what any of us asked for or expected; it's a struggle, at times an absolute torment and misery. You are kept on the alert, seldom fully relax, trying to be one step ahead and skating on ice at the same time. There is constant negotiating, phone calls, bargaining; I've never known anything like it... for 35 years. But, when the sun shines and the birds sing and all is quiet, you can sometimes imagine the world to be an ok place...</div>
Tui Chizownhttp://www.blogger.com/profile/11362569853162067460noreply@blogger.com0tag:blogger.com,1999:blog-1343067279870496201.post-8798791986989285512019-06-02T10:01:00.002+12:002019-06-02T10:01:33.988+12:00My Double Life!<div dir="ltr" style="text-align: left;" trbidi="on">
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<br />
<div class="MsoNormal">
<span style="font-size: small;"><span style="font-family: "verdana" , sans-serif;"><b><span style="color: black;">MY DOUBLE LIFE AS A SWEDE/ENGLISHMAN WITH PRADER-WILLI SYNDROME</span></b></span></span><br />
<br />
<span style="font-size: small;"><span style="font-family: "verdana" , sans-serif;"><span style="font-size: x-small;"><i><span style="color: black;">(Anders' mother, Jean Phillips Martinsson, was IPWSO's first President from 1991 to 1998 and the founder of IPWSO - ed.)</span></i></span><b><span style="color: black;"><br /></span></b></span></span></div>
<div class="MsoNormal">
<br /></div>
<span style="font-size: small;"><span style="font-family: "verdana" , sans-serif;">
</span></span><br />
<div class="yiv7922906027aolmailaolmailwestern" data-mce-style="margin-bottom: 0cm;" style="margin-bottom: .0001pt; margin-bottom: 0cm;">
<span style="font-size: small;"><span style="font-family: "verdana" , sans-serif;"><span style="color: black;">My name is
Paul Anders Martinsson and I live in Sweden. I'm now 48 yrs. old and have
always loved my double life!</span></span></span></div>
<div class="yiv7922906027aolmailaolmailwestern" data-mce-style="margin-bottom: 0cm;" style="margin-bottom: .0001pt; margin-bottom: 0cm;">
<br /></div>
<span style="font-size: small;"><span style="font-family: "verdana" , sans-serif;">
</span></span><br />
<div class="yiv7922906027aolmailaolmailwestern" data-mce-style="margin-bottom: 0cm;" style="margin-bottom: .0001pt; margin-bottom: 0cm;">
<span style="font-size: small;"><span style="font-family: "verdana" , sans-serif;"><span style="color: black;">My father
was Swedish and my mother is English. I wasn't diagnosed with PWS until I was
14 years old. It was then I decided that I wanted to learn English and follow in
my mother's footsteps by going to boarding school in the UK. On arrival I spoke
no English but, after 2 yrs there, I was completely fluent – contrary to
advice given to us by the Swedish specialists, who insisted that my parents
should only speak the one language to me – not both. </span></span></span></div>
<div class="separator" style="clear: both; text-align: center;">
<span style="font-size: small;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEidM-EUXvITcmJFYRBwtT4ReNrRUfbyNbT53DAjeg_RfyuHcIhnrDQcHd6grcQ1fStbysv1a2fI553ZRDMbpH8VIZPp157oaY9xGR_TPRol9z0h06X1MhxH2Ruf97bVRORVvFENKLHDVak/s1600/anderswithanaward+%2528002%2529.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" data-original-height="1600" data-original-width="1200" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEidM-EUXvITcmJFYRBwtT4ReNrRUfbyNbT53DAjeg_RfyuHcIhnrDQcHd6grcQ1fStbysv1a2fI553ZRDMbpH8VIZPp157oaY9xGR_TPRol9z0h06X1MhxH2Ruf97bVRORVvFENKLHDVak/s400/anderswithanaward+%2528002%2529.jpg" width="300" /></a></span></div>
<br />
<span style="font-size: small;"><span style="font-family: "verdana" , sans-serif;">
</span></span><br />
<div class="MsoNormal">
<span style="font-size: small;"><span style="font-family: "verdana" , sans-serif;"><span style="color: black;"><br />
I shall never forget those 2 years, especially when I joined the ATC Air
Training Squadron and was awarded a Flying Certificate!</span></span></span></div>
<div class="MsoNormal">
<span style="font-size: small;"><span style="font-family: "verdana" , sans-serif;"><span style="color: black;"><br />
The only thing I missed during those 2 yrs in the UK were my judo
classes. I started learning when I was 8 yrs. old. Today I still
have Solveig, the same teacher, masses of gold, silver and bronze medals and a brown
belt.</span></span></span></div>
<div class="MsoNormal">
<br /></div>
<span style="font-size: small;"><span style="font-family: "verdana" , sans-serif;">
</span></span><br />
<div class="yiv7922906027aolmailaolmailwestern" data-mce-style="margin-bottom: 0cm;" style="margin-bottom: .0001pt; margin-bottom: 0cm;">
<span style="font-size: small;"><span style="font-family: "verdana" , sans-serif;"><span style="color: black;">Since I was
22 yrs. old, I've been living in a group-home with six others who have PWS. We
all love it and have our own 45 sq.m. apartments, with balconies and our own
garden plots. We go to work every day, and have been living together for
26 yrs. </span></span></span></div>
<div class="yiv7922906027aolmailaolmailwestern" data-mce-style="margin-bottom: 0cm;" style="margin-bottom: .0001pt; margin-bottom: 0cm;">
<br /></div>
<div class="yiv7922906027aolmailaolmailwestern" data-mce-style="margin-bottom: 0cm;" style="margin-bottom: .0001pt; margin-bottom: 0cm;">
<span style="font-size: small;"><span style="font-family: "verdana" , sans-serif;"><span style="color: black;">Beside these 6 friends, I have many others, without PWS, whom I've known since I was born. I
still have regular contact with them. We go to the cinema, concerts, musicals,
and work on computers, smartphones and tablets together. They always come
to my annual birthday party, where I invite them all for fruit salad, light
ice-cream and alcohol-free cider. I also have a wonderful Ethiopian girl-friend!</span></span></span></div>
<div class="yiv7922906027aolmailaolmailwestern" data-mce-style="margin-bottom: 0cm;" style="margin-bottom: .0001pt; margin-bottom: 0cm;">
<span style="font-size: small;"><span style="font-family: "verdana" , sans-serif;"><span style="color: black;"></span></span></span></div>
<div class="yiv7922906027aolmailaolmailwestern" data-mce-style="margin-bottom: 0cm;" style="margin-bottom: .0001pt; margin-bottom: 0cm;">
<span style="font-size: small;"><span style="font-family: "verdana" , sans-serif;"><span style="color: black;"><br />
</span></span></span></div>
<br />
<div style="text-align: left;">
<span style="font-size: small;"><span style="font-family: "verdana" , sans-serif;"><span style="color: black;">
<span style="font-size: x-small;"><i><b><u>Photo:</u></b><b> </b> <b>Anders receiving his award for
participating in IPWSO's 6th conference in Romania, with one of his own
paintings on the wall depicting his holiday in Burma with the Orang-utans. </b></i></span></span></span></span></div>
</div>
Tui Chizownhttp://www.blogger.com/profile/11362569853162067460noreply@blogger.com0tag:blogger.com,1999:blog-1343067279870496201.post-3568884233355958442019-05-02T14:01:00.000+12:002019-05-02T14:02:50.884+12:00The forgotten face of PWS?<div dir="ltr" style="text-align: left;" trbidi="on">
<div style="text-align: left;">
May is PWS Awareness month and every year we bring the world's attention to this syndrome. </div>
<div style="text-align: left;">
<br /></div>
<div style="text-align: left;">
Our syndrome. </div>
<div style="text-align: left;">
<br /></div>
<div style="text-align: left;">
We write positive and uplifting things about PWS; we write of successes and great support. And all this is fantastic - after all, 40 years ago very little was known about PWS and management skills were basic to say the least; residential options were minimal and diagnosis at a young age was still done at a clinical level according to physical characteristics. If you were lucky.</div>
<div style="text-align: left;">
<br /></div>
<div style="text-align: left;">
So, I feel heartened to see the young faces of today, to know that GHT is well-known treatment for PWS and I am happy when I see the positiveness of specialists and professionals who treat PW with an awareness that was very limited in days gone by.</div>
<div style="text-align: left;">
<br /></div>
<div style="text-align: left;">
But. </div>
<div style="text-align: left;">
<br /></div>
<div style="text-align: left;">
Today I saw a man with PWS whom I've known for many years. He'd be in his late 30s. His family chose to place him in 'supported living' and it was what he wanted if he wasn't allowed to live on his own. Supported living equates to a few hours a week when someone comes in to help him. Otherwise, he's on his own. He looked terrible. His skin was yellow, he was barefoot (it's winter here), he had severe conjunctivitis in one eye. He is way, way overweight and can barely shuffle along with a walking stick. I asked him how he was. He said "I'm ok after Mum's funeral on Monday". I had known his mother and I did not know she had died. I gave him a hug. My thoughts were - is this the real face, the forgotten face of PWS? </div>
<div style="text-align: left;">
<br /></div>
<div style="text-align: left;">
I thought about all the older generation who did not have the benefit of the early diagnosis that children have today, and how the parents struggled for recognition of this challenging syndrome. I thought about all tears we have shed over the years. At that moment I wanted recognition for the rivers we have cried: tears of frustration, sadness, despair, madness, self-pity, and yes happiness. </div>
<div style="text-align: left;">
<br /></div>
<div style="text-align: left;">
So these words are for you - parents, sisters, brothers, grandparents - we are in this together; we share a rare life but for all the pain, it is still a beautiful life. Take care of yourselves.</div>
<div style="text-align: left;">
<br /></div>
<div style="text-align: left;">
With love</div>
<div class="separator" style="clear: both; text-align: center;">
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Tui Chizownhttp://www.blogger.com/profile/11362569853162067460noreply@blogger.com0tag:blogger.com,1999:blog-1343067279870496201.post-83224561616417853622019-04-05T18:55:00.000+13:002019-04-05T18:57:13.838+13:00Sexuality in PWS<div dir="ltr" style="text-align: left;" trbidi="on">
<br />
<br />
I often hear the question about whether women with PWS can have babies. The answer is, yes, they can, but it is not common. Babies to women with PWS have been documented in Scandinavia, USA, and New Zealand.<br />
<br />
IPWSO's Clinical & Scientific Advisory Board has written an article on sexuality and fertility in PWS which you can see on our <a href="https://www.ipwso.org/fertility-sexuality-sex-hormones" target="_blank">website</a>, which has the technical explanation, but it is important to understand how sexuality might be interpreted by the person with PWS.<br />
<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: right; margin-left: 1em; text-align: right;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiEgCFqRZuJlUPsOksWhyphenhyphen4zg65kSxLV_DUoVLuQrg0JMNiD7Ave37ybdnoDbMvxyOR2k772nKjk1LvuzT5P7gwro53ThX4bS7IDJ9CXqzc9Y4W_ndcGlOqX6Kmn8fn5GxE2sqe7COvcF10/s1600/Melisa+%2526+Crystal.jpg" imageanchor="1" style="clear: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" data-original-height="1382" data-original-width="970" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiEgCFqRZuJlUPsOksWhyphenhyphen4zg65kSxLV_DUoVLuQrg0JMNiD7Ave37ybdnoDbMvxyOR2k772nKjk1LvuzT5P7gwro53ThX4bS7IDJ9CXqzc9Y4W_ndcGlOqX6Kmn8fn5GxE2sqe7COvcF10/s320/Melisa+%2526+Crystal.jpg" width="224" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Mother (PWS) and baby (AS)</td></tr>
</tbody></table>
<br />
<br />
The CSAB article says,<br />
<br />
"Romantic relationships may be perceived in many different ways by
persons with PWS, and it is important to discern fantasy from a more
actionable situation. Some may claim to be engaged to be married and
indicate that a marriage date has been set, even though they have
minimal contact with or personal knowledge about the identified person.
Others may have a real girlfriend or boyfriend and describe a dating
relationship of variable intensity; they may be content to display
affection through hand holding and kissing without actual sexual
contact. A few may enter into what can be described as a serious
relationship that might include sexual intercourse.<br />
<br />
"First, it is
important to evaluate their level of understanding of sexual function
and “where babies come from.” Second, their understanding of the rules
and responsibilities, boundaries, and personal safety around sexual
behaviour must be explored. Finally, their knowledge of the risks of
sexually transmitted diseases must be assessed. "<br />
<br />
Equally important is the
need to ascertain whether sex is being exchanged for food or whether
the person with PWS is being taken advantage of sexually. If this is
discovered, a referral to the proper agency for investigation is
required. Finally, individuals with PWS often display interpersonal
conflict in their relationships. They may have difficulty sharing,
meeting the expectations of others, or making empathic connections.
Their level of emotional maturity may not be conducive to the level of
judgment, commitment, and intimacy necessary in a marriage, even with
the help of parents or guardians.<br />
<br />
Many young adult men and women with PWS will express a desire to have a
baby. In most cases, this idea comes from an earlier psychological stage
of the family romance, such as playing with dolls. This wish can be
acknowledged, discussed, and addressed through counselling. It is often
managed through substitution, such as caring for a pet, being involved
in the lives of nieces and nephews, being directly supervised in
activities with small children, or accepting that not all adults in
society have children. When the desire for a baby is complicated by
actual fertility, it may be difficult for the woman with PWS to accept
the use of contraceptives. In these cases, anticipatory guidance
requires the involvement of the parent or guardian. Family, religious
and social values should play a major part in these discussions. At
least one abortion has occurred.<br />
<br />
Articles and narratives of the five pregnancies in women with PWS
suggest that the gestations and deliveries were uncomplicated. Three
babies were delivered by planned caesarean sections. All of the mothers
were unable to breast feed and bond with the children, and the infants
were cared for by others, most often relatives. Common for all was also
an incapacity to put the needs of the child ahead of their personal
needs and desires, especially about food. As described in one case “As
long as the baby didn’t cry or want to be fed when the mother wanted her
own meals, all was fine”.<br />
<br />
"<span style="font-family: inherit;">The genetics of the children born to mothers with PWS has varied.
Theoretically, the chances of a fertile woman with PWS having a healthy
baby depend on what genetic type of PWS she has. A woman with maternal
uniparental disomy (</span>UPD) is likely to have a healthy baby, everything
else being equal. A woman with a deletion has a 50% chance of having a
baby with Angelman syndrome.<br />
<br />
There are no known cases, yet, of a male with PWS fathering a child."<br />
<br />
Studies have also shown that in spite of hypogonadism being a major feature, sexual interest and activities are common. Treatment with sex steroids may increase this. A low level of testosterone and inhibin B (produced by the testis) and an imbalance in other hormones (LH and FSH) mean that fertility in males is very unlikely.<br />
<br />
In women with PWS the same hormonal pattern was found, but in a few women the hormones were normal which indicated fertility was normal. The Israeli study went on to say that "treatment with sex steroids in both genders would decrease fertility further.<br />
<br />
There are many women and men with PWS who have very affectionate and caring relationships with each other, or with a person without PWS. Many of these relationships are long-lasting and very important to them. Some people with PWS marry and live with support from carers, and many are just content to be able to say they have a "boyfriend" or "girlfriend". There are many who have an active sex life, both males and females. Our job is to support them in their choice.<br />
<br />
<br />
<br />
<br />
<br />
</div>
Tui Chizownhttp://www.blogger.com/profile/11362569853162067460noreply@blogger.com0tag:blogger.com,1999:blog-1343067279870496201.post-53936936306985959952019-03-28T16:22:00.000+13:002019-03-28T16:22:49.103+13:00Blind Rage<div dir="ltr" style="text-align: left;" trbidi="on">
<i>Contributed by Dr Janice Forster</i><br />
<i><br /></i>
<br />
<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: left; margin-right: 1em; text-align: left;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhRsuI-URpMYtmTUKECi1oon8Uf187e3b9O8SiQTkedSkvai0vev-JTP6LT06ChNY7W5l_gtYpGiDETgpQle690l7UW4exP_3CdWQ0vCU74180Jufn-3mY_706qxs8wxBmy4BSNHvc4OIw/s1600/Jan+Forster.jpg" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" data-original-height="225" data-original-width="225" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhRsuI-URpMYtmTUKECi1oon8Uf187e3b9O8SiQTkedSkvai0vev-JTP6LT06ChNY7W5l_gtYpGiDETgpQle690l7UW4exP_3CdWQ0vCU74180Jufn-3mY_706qxs8wxBmy4BSNHvc4OIw/s1600/Jan+Forster.jpg" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Dr Janice Forster, Pittsburgh Partnership</td></tr>
</tbody></table>
<br />
<div class="MsoNormal">
<span lang="EN-US">PWS is known for hyperphagia and temper
outbursts.<span style="mso-spacerun: yes;"> </span>Researchers have discovered
that temper tantrums precede the typical food related behaviors in early
childhood.<span style="mso-spacerun: yes;"> </span>For all children, including
those who have PWS,<span style="mso-spacerun: yes;"> </span>tantrums occur when the
reward centers of the brain begin to mature.<span style="mso-spacerun: yes;">
</span>The reward center enables all children to learn from experience and to
form expectations about things that happen in their world.<span style="mso-spacerun: yes;"> </span>When a child wants something and does not get
it, a tantrum occurs.<span style="mso-spacerun: yes;"> </span>Or, when something
occurs that is different from what the child is expecting, a tantrum
occurs.<span style="mso-spacerun: yes;"> </span>Among children who have PWS,
this tantrum behavior differs from typical children in 2 important ways:<o:p></o:p></span></div>
<div class="MsoNormal">
<span lang="EN-US"><br /></span></div>
<div class="MsoNormal">
<span lang="EN-US"><br /></span></div>
<div class="MsoNormal">
<span lang="EN-US"><br /></span></div>
<blockquote class="tr_bq" style="text-align: left;">
<ul style="text-align: left;">
<li><span lang="EN-US">It is more intense</span></li>
<li><span lang="EN-US">The biochemical braking system to stop the tantrum is broken *</span></li>
</ul>
</blockquote>
<div class="MsoNormal">
<span lang="EN-US"><br /></span></div>
<div class="MsoNormal">
Each tantrum is unique to the child, but in
PWS it is usually very quick in onset and may appear to occur out of the
blue. If one looks carefully at the
antecedents of the situation from the perspective of the child, often the etiology
can be determined. Once a tantrum
begins, there is nothing that can be done to stop it, other than to keep
everyone and everything in the environment safe. The tantrum will run its course. After the tantrum is over, some children will
be exhausted and require a nap. Other
children will get back on track fairly quickly and resume their daily
activities; they may or may not acknowledge
their behavior. </div>
<div class="MsoNormal">
<span lang="EN-US"><span style="mso-spacerun: yes;"><br /></span></span></div>
<div class="MsoNormal">
<span lang="EN-US">The cortex of the brain not only governs
reward, but it is responsible for thinking and reasoning behavior.<span style="mso-spacerun: yes;"> </span>Another part of the brain is involved in
behaviors such as tantrums and shut downs.<span style="mso-spacerun: yes;">
</span>The amygdala directs brain mechanisms associated with survival (fight,
flight or freeze); it is responsible for emotional expression, aggression, and
impulsivity.<span style="mso-spacerun: yes;"> </span>For this reason, the cortex
has been referred to as the ‘baby sitter’ of the amygdala.<span style="mso-spacerun: yes;"> </span>Although neural connections to the reward
center of the cortex begin around age 2, the thinking and reasoning behavior is
slower to mature in typical children and takes even longer to develop in
children with PWS.<span style="mso-spacerun: yes;"> </span>Using the analogy of
a computer, when a child has a full blown tantrum, their thinking and reasoning
ability in the cortex goes “off-line”.<span style="mso-spacerun: yes;">
</span>This is why children with PWS appear to be in a ‘blind rage” during the
tantrum; they are literally behaving in survival mode, acting without thinking.<span style="mso-spacerun: yes;"> </span>In PWS it takes a while for the brain to
“reboot.”<span style="mso-spacerun: yes;"> </span>After they recover, they may act
as if nothing has happened (brain reboot), and they may or may not remember what
has occurred.<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
<div class="MsoNormal">
<span lang="EN-US"><span style="mso-spacerun: yes;"><br /></span></span></div>
<div class="MsoNormal">
<span lang="EN-US">A tantrum is a learning experience for the
caregiver.<span style="mso-spacerun: yes;"> </span>The keys to successful
behavioral management are<span style="mso-spacerun: yes;"> </span>determining what
the trigger is, redesigning the daily plan to avoid it, and developing coping
strategies to deal more effectively with it.<span style="mso-spacerun: yes;">
</span><o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div style="mso-element: footnote-list;">
<!--[if !supportFootnotes]--><br clear="all" />
<hr align="left" size="1" width="33%" />
<!--[endif]-->
<br />
<div id="ftn1" style="mso-element: footnote;">
<div class="MsoFootnoteText">
<a href="file:///C:/Users/Linda/AppData/Local/Temp/Blind%20Rage%20in%20PWS.docx#_ftnref1" name="_ftn1" style="mso-footnote-id: ftn1;" title=""><span class="MsoFootnoteReference"><span lang="EN-US"><span style="mso-special-character: footnote;"><!--[if !supportFootnotes]--><span class="MsoFootnoteReference"><span lang="EN-US" style="font-family: "calibri" , sans-serif; font-size: 10.0pt; line-height: 115%;">[1]</span></span><!--[endif]--></span></span></span></a><span lang="EN-US"> GABA (gamma-aminobutyric acid) is the major inhibitory
neurotransmitter in the brain; it regulates muscle tone and provides the
braking mechanism for behavior, allowing a person to “stop and think” before
acting.<span style="mso-spacerun: yes;"> </span>GABA receptors are reduced in
PWS, resulting in decreased GABA action in the brain that may also contribute
to epilepsy, anxiety disorders and depression.<span style="mso-spacerun: yes;">
</span><o:p></o:p></span></div>
</div>
</div>
<i></i></div>
Tui Chizownhttp://www.blogger.com/profile/11362569853162067460noreply@blogger.com0tag:blogger.com,1999:blog-1343067279870496201.post-82714929579636654022018-11-12T22:41:00.001+13:002018-11-12T22:48:07.159+13:00From Ireland to Munich<div dir="ltr" style="text-align: left;" trbidi="on">
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Name="table of authorities"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="macro"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
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<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="List"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
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<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
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<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
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<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
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<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
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<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
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<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
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<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
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<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
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<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
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<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
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<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
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<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
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<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
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<w:LsdException Locked="false" Priority="10" QFormat="true" Name="Title"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
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<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Signature"/>
<w:LsdException Locked="false" Priority="1" SemiHidden="true"
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<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
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<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Body Text Indent"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
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<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
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<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
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<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
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<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
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<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
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<w:LsdException Locked="false" Priority="11" QFormat="true" Name="Subtitle"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
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<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
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<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
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<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
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<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
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<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
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<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
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<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
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<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
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<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
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<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
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<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
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<w:LsdException Locked="false" Priority="22" QFormat="true" Name="Strong"/>
<w:LsdException Locked="false" Priority="20" QFormat="true" Name="Emphasis"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
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<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
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<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
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<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
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<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
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<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
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<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
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<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
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<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
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<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
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<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
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<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
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<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
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<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
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<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
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<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
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<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
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<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
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<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
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<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
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<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
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<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
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<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
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<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
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<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
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<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
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<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
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<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
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<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
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<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
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<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
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<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
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<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
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<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
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<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
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<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
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<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
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<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
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<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
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<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
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<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
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<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
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<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
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<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
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<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
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<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
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<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
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<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
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<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
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<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
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<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
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<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
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<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
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<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
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<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
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<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
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<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
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<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
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<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
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<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
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<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
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<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
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<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
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<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
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<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
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<w:LsdException Locked="false" Priority="39" Name="Table Grid"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
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<w:LsdException Locked="false" SemiHidden="true" Name="Placeholder Text"/>
<w:LsdException Locked="false" Priority="1" QFormat="true" Name="No Spacing"/>
<w:LsdException Locked="false" Priority="60" Name="Light Shading"/>
<w:LsdException Locked="false" Priority="61" Name="Light List"/>
<w:LsdException Locked="false" Priority="62" Name="Light Grid"/>
<w:LsdException Locked="false" Priority="63" Name="Medium Shading 1"/>
<w:LsdException Locked="false" Priority="64" Name="Medium Shading 2"/>
<w:LsdException Locked="false" Priority="65" Name="Medium List 1"/>
<w:LsdException Locked="false" Priority="66" Name="Medium List 2"/>
<w:LsdException Locked="false" Priority="67" Name="Medium Grid 1"/>
<w:LsdException Locked="false" Priority="68" Name="Medium Grid 2"/>
<w:LsdException Locked="false" Priority="69" Name="Medium Grid 3"/>
<w:LsdException Locked="false" Priority="70" Name="Dark List"/>
<w:LsdException Locked="false" Priority="71" Name="Colorful Shading"/>
<w:LsdException Locked="false" Priority="72" Name="Colorful List"/>
<w:LsdException Locked="false" Priority="73" Name="Colorful Grid"/>
<w:LsdException Locked="false" Priority="60" Name="Light Shading Accent 1"/>
<w:LsdException Locked="false" Priority="61" Name="Light List Accent 1"/>
<w:LsdException Locked="false" Priority="62" Name="Light Grid Accent 1"/>
<w:LsdException Locked="false" Priority="63" Name="Medium Shading 1 Accent 1"/>
<w:LsdException Locked="false" Priority="64" Name="Medium Shading 2 Accent 1"/>
<w:LsdException Locked="false" Priority="65" Name="Medium List 1 Accent 1"/>
<w:LsdException Locked="false" SemiHidden="true" Name="Revision"/>
<w:LsdException Locked="false" Priority="34" QFormat="true"
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<w:LsdException Locked="false" Priority="29" QFormat="true" Name="Quote"/>
<w:LsdException Locked="false" Priority="30" QFormat="true"
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<w:LsdException Locked="false" Priority="69" Name="Medium Grid 3 Accent 1"/>
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<w:LsdException Locked="false" Priority="72" Name="Colorful List Accent 1"/>
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<w:LsdException Locked="false" Priority="72" Name="Colorful List Accent 2"/>
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<w:LsdException Locked="false" Priority="72" Name="Colorful List Accent 3"/>
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<w:LsdException Locked="false" Priority="72" Name="Colorful List Accent 4"/>
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<w:LsdException Locked="false" Priority="72" Name="Colorful List Accent 5"/>
<w:LsdException Locked="false" Priority="73" Name="Colorful Grid Accent 5"/>
<w:LsdException Locked="false" Priority="60" Name="Light Shading Accent 6"/>
<w:LsdException Locked="false" Priority="61" Name="Light List Accent 6"/>
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<w:LsdException Locked="false" Priority="64" Name="Medium Shading 2 Accent 6"/>
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<w:LsdException Locked="false" Priority="72" Name="Colorful List Accent 6"/>
<w:LsdException Locked="false" Priority="73" Name="Colorful Grid Accent 6"/>
<w:LsdException Locked="false" Priority="19" QFormat="true"
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<w:LsdException Locked="false" Priority="21" QFormat="true"
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<w:LsdException Locked="false" Priority="31" QFormat="true"
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<w:LsdException Locked="false" Priority="32" QFormat="true"
Name="Intense Reference"/>
<w:LsdException Locked="false" Priority="33" QFormat="true" Name="Book Title"/>
<w:LsdException Locked="false" Priority="37" SemiHidden="true"
UnhideWhenUsed="true" Name="Bibliography"/>
<w:LsdException Locked="false" Priority="39" SemiHidden="true"
UnhideWhenUsed="true" QFormat="true" Name="TOC Heading"/>
<w:LsdException Locked="false" Priority="41" Name="Plain Table 1"/>
<w:LsdException Locked="false" Priority="42" Name="Plain Table 2"/>
<w:LsdException Locked="false" Priority="43" Name="Plain Table 3"/>
<w:LsdException Locked="false" Priority="44" Name="Plain Table 4"/>
<w:LsdException Locked="false" Priority="45" Name="Plain Table 5"/>
<w:LsdException Locked="false" Priority="40" Name="Grid Table Light"/>
<w:LsdException Locked="false" Priority="46" Name="Grid Table 1 Light"/>
<w:LsdException Locked="false" Priority="47" Name="Grid Table 2"/>
<w:LsdException Locked="false" Priority="48" Name="Grid Table 3"/>
<w:LsdException Locked="false" Priority="49" Name="Grid Table 4"/>
<w:LsdException Locked="false" Priority="50" Name="Grid Table 5 Dark"/>
<w:LsdException Locked="false" Priority="51" Name="Grid Table 6 Colorful"/>
<w:LsdException Locked="false" Priority="52" Name="Grid Table 7 Colorful"/>
<w:LsdException Locked="false" Priority="46"
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<w:LsdException Locked="false" Priority="48" Name="Grid Table 3 Accent 1"/>
<w:LsdException Locked="false" Priority="49" Name="Grid Table 4 Accent 1"/>
<w:LsdException Locked="false" Priority="50" Name="Grid Table 5 Dark Accent 1"/>
<w:LsdException Locked="false" Priority="51"
Name="Grid Table 6 Colorful Accent 1"/>
<w:LsdException Locked="false" Priority="52"
Name="Grid Table 7 Colorful Accent 1"/>
<w:LsdException Locked="false" Priority="46"
Name="Grid Table 1 Light Accent 2"/>
<w:LsdException Locked="false" Priority="47" Name="Grid Table 2 Accent 2"/>
<w:LsdException Locked="false" Priority="48" Name="Grid Table 3 Accent 2"/>
<w:LsdException Locked="false" Priority="49" Name="Grid Table 4 Accent 2"/>
<w:LsdException Locked="false" Priority="50" Name="Grid Table 5 Dark Accent 2"/>
<w:LsdException Locked="false" Priority="51"
Name="Grid Table 6 Colorful Accent 2"/>
<w:LsdException Locked="false" Priority="52"
Name="Grid Table 7 Colorful Accent 2"/>
<w:LsdException Locked="false" Priority="46"
Name="Grid Table 1 Light Accent 3"/>
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<w:LsdException Locked="false" Priority="48" Name="Grid Table 3 Accent 3"/>
<w:LsdException Locked="false" Priority="49" Name="Grid Table 4 Accent 3"/>
<w:LsdException Locked="false" Priority="50" Name="Grid Table 5 Dark Accent 3"/>
<w:LsdException Locked="false" Priority="51"
Name="Grid Table 6 Colorful Accent 3"/>
<w:LsdException Locked="false" Priority="52"
Name="Grid Table 7 Colorful Accent 3"/>
<w:LsdException Locked="false" Priority="46"
Name="Grid Table 1 Light Accent 4"/>
<w:LsdException Locked="false" Priority="47" Name="Grid Table 2 Accent 4"/>
<w:LsdException Locked="false" Priority="48" Name="Grid Table 3 Accent 4"/>
<w:LsdException Locked="false" Priority="49" Name="Grid Table 4 Accent 4"/>
<w:LsdException Locked="false" Priority="50" Name="Grid Table 5 Dark Accent 4"/>
<w:LsdException Locked="false" Priority="51"
Name="Grid Table 6 Colorful Accent 4"/>
<w:LsdException Locked="false" Priority="52"
Name="Grid Table 7 Colorful Accent 4"/>
<w:LsdException Locked="false" Priority="46"
Name="Grid Table 1 Light Accent 5"/>
<w:LsdException Locked="false" Priority="47" Name="Grid Table 2 Accent 5"/>
<w:LsdException Locked="false" Priority="48" Name="Grid Table 3 Accent 5"/>
<w:LsdException Locked="false" Priority="49" Name="Grid Table 4 Accent 5"/>
<w:LsdException Locked="false" Priority="50" Name="Grid Table 5 Dark Accent 5"/>
<w:LsdException Locked="false" Priority="51"
Name="Grid Table 6 Colorful Accent 5"/>
<w:LsdException Locked="false" Priority="52"
Name="Grid Table 7 Colorful Accent 5"/>
<w:LsdException Locked="false" Priority="46"
Name="Grid Table 1 Light Accent 6"/>
<w:LsdException Locked="false" Priority="47" Name="Grid Table 2 Accent 6"/>
<w:LsdException Locked="false" Priority="48" Name="Grid Table 3 Accent 6"/>
<w:LsdException Locked="false" Priority="49" Name="Grid Table 4 Accent 6"/>
<w:LsdException Locked="false" Priority="50" Name="Grid Table 5 Dark Accent 6"/>
<w:LsdException Locked="false" Priority="51"
Name="Grid Table 6 Colorful Accent 6"/>
<w:LsdException Locked="false" Priority="52"
Name="Grid Table 7 Colorful Accent 6"/>
<w:LsdException Locked="false" Priority="46" Name="List Table 1 Light"/>
<w:LsdException Locked="false" Priority="47" Name="List Table 2"/>
<w:LsdException Locked="false" Priority="48" Name="List Table 3"/>
<w:LsdException Locked="false" Priority="49" Name="List Table 4"/>
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<span lang="EN-IE" style="font-family: "times new roman" , serif;"><i>Gina Mullis is a Kiwi, living and working in Ireland. This was her first experience of a PWS conference and she writes...</i></span></div>
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<br /></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0cm;">
<span lang="EN-IE" style="font-family: "times new roman" , serif;">I was very
fortunate to be given the opportunity to attend the IPWSO 5<sup>th</sup>
International Caregiver’s Conference in Munich this year.<span style="mso-spacerun: yes;"> </span>It was my first time attending and I was
unsure of what to expect.<span style="mso-spacerun: yes;"> </span>Having had
little direct experience of working with individuals with Prader-Willi Syndrome
(PWS) and their families I hoped to get a broad understanding of the syndrome
from a clinical perspective and insights from others already working in the
field with respect to evidence-based best practice approaches to providing
therapeutic supports and interventions.<span style="mso-spacerun: yes;"> </span></span></div>
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<br /></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0cm;">
<span lang="EN-IE" style="font-family: "times new roman" , serif;">The two group
workshops I attended on Early Intervention and Aging in People with PWS did give
me the broad understanding that I was hoping for at the outset by providing
valuable information on the ways in which clinical staff can best support the
social, emotional, and cognitive development of individuals with PWS throughout
the lifespan.<span style="mso-spacerun: yes;"> </span>However, the greater
insights came out of discussions with parents and care staff working with and
caring for individual’s with PWS, all of whom were incredibly generous in their
willingness to share their own personal experiences.<span style="mso-spacerun: yes;"> </span><span style="mso-spacerun: yes;"> </span></span></div>
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<br /></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0cm;">
<span lang="EN-IE" style="font-family: "times new roman" , serif;">Resilience
Care are in the process of setting up a residential home here in Ireland
specifically for individual’s with PWS and I feel confident and enthused about
my role in this enterprise as a result of the knowledge gained and the
relationships established at the IPWSO Caregiver’s Conference.<span style="mso-spacerun: yes;"> </span>I look forward to developing the professional
and personal relationships we established at the conference through ongoing <i style="mso-bidi-font-style: normal;">dialogue</i> (thank you Norbert and Hubert
for the word) and sharing of information and experiences, and can’t wait to see
you all again next year in Cuba.</span></div>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEisB269LzOLA2heNJN89LoLJlqT-hny3DvXKTZ6hAYVZpb3T8tUL5oTIHDKIF-m9D55wkt37izd0Tl4CskhgxQ5aK7Uy7F2mIqP2-oWCVq0ESVd5N2VeVWeLOx1PIjeIHx1hpJZPRXnn9Q/s1600/IMG_20180829_132834.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="1600" data-original-width="1200" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEisB269LzOLA2heNJN89LoLJlqT-hny3DvXKTZ6hAYVZpb3T8tUL5oTIHDKIF-m9D55wkt37izd0Tl4CskhgxQ5aK7Uy7F2mIqP2-oWCVq0ESVd5N2VeVWeLOx1PIjeIHx1hpJZPRXnn9Q/s320/IMG_20180829_132834.jpg" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Kiwis may be flightless birds, but these two found their way to Munich from opposite sides of the world!</td><td class="tr-caption" style="text-align: center;"></td><td class="tr-caption" style="text-align: center;"><br /></td><td class="tr-caption" style="text-align: center;"> </td></tr>
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<span lang="EN-IE" style="font-family: "times new roman" , serif;"><span style="mso-spacerun: yes;"> </span><span style="mso-spacerun: yes;"> </span><span style="mso-spacerun: yes;"> <span style="font-size: x-small;"> Linda Thornton & Gina Mullis</span></span><span style="mso-spacerun: yes;"> </span></span></div>
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Tui Chizownhttp://www.blogger.com/profile/11362569853162067460noreply@blogger.com0tag:blogger.com,1999:blog-1343067279870496201.post-3531262067686650502018-10-09T10:06:00.001+13:002018-10-09T10:06:28.258+13:00Our friends in Slovakia<div dir="ltr" style="text-align: left;" trbidi="on">
<i>Maria Benekova, our IPWSO representative from Slovakia and recipient of an educational grant to attend the Caregivers' Conference in Munich (August/September this year) has written a report telling us a little about life in Slovakia and how, by attending the conference, she is managing to cope just a little better!</i><br />
<br />
<i>Slovakia is a landlocked country with a population of approximately 4.2 million. "</i><i><span>It is known for its dramatic
natural landscape and many castles. Near the Austrian border, capital
city Bratislava features a pedestrian-only Old Town with a lively cafe
scene. Rising on a hill above the Danube River, Bratislava Castle houses
a branch of the Slovak National Museum, with displays ranging from
Roman artifacts to 20th-century arts and crafts." (Wikipedia)</span></i><br />
<br />
<div class="separator" style="clear: both; text-align: center;">
<i><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgzi8qL9ZZ6Jwl8BSIlAoVKpWpwCGTmy4NdeS6fMU-JnCZfqEsQc0gTTRNpmUr3N9BFYjBKoOOCqMxEJGF5tiiwZMICT1qxOU7dhF7FAWYm-wQEjRDSWUkIutbRhWPT0qHmbT8fwPklQyo/s1600/Slovakia.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" data-original-height="480" data-original-width="640" height="300" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgzi8qL9ZZ6Jwl8BSIlAoVKpWpwCGTmy4NdeS6fMU-JnCZfqEsQc0gTTRNpmUr3N9BFYjBKoOOCqMxEJGF5tiiwZMICT1qxOU7dhF7FAWYm-wQEjRDSWUkIutbRhWPT0qHmbT8fwPklQyo/s400/Slovakia.jpg" width="400" /></a></i></div>
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<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
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<w:LsdException Locked="false" Priority="72" Name="Colorful List"/>
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<w:LsdException Locked="false" Priority="19" QFormat="true"
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<w:LsdException Locked="false" Priority="39" SemiHidden="true"
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<w:LsdException Locked="false" Priority="52"
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<w:LsdException Locked="false" Priority="46"
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<w:LsdException Locked="false" Priority="52"
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<w:LsdException Locked="false" Priority="48" Name="List Table 3"/>
<w:LsdException Locked="false" Priority="49" Name="List Table 4"/>
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<w:LsdException Locked="false" Priority="46"
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<w:LsdException Locked="false" Priority="52"
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<w:LsdException Locked="false" Priority="52"
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<w:LsdException Locked="false" Priority="46"
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<w:LsdException Locked="false" Priority="48" Name="List Table 3 Accent 3"/>
<w:LsdException Locked="false" Priority="49" Name="List Table 4 Accent 3"/>
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<w:LsdException Locked="false" Priority="52"
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<w:LsdException Locked="false" Priority="46"
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<w:LsdException Locked="false" Priority="47" Name="List Table 2 Accent 4"/>
<w:LsdException Locked="false" Priority="48" Name="List Table 3 Accent 4"/>
<w:LsdException Locked="false" Priority="49" Name="List Table 4 Accent 4"/>
<w:LsdException Locked="false" Priority="50" Name="List Table 5 Dark Accent 4"/>
<w:LsdException Locked="false" Priority="51"
Name="List Table 6 Colorful Accent 4"/>
<w:LsdException Locked="false" Priority="52"
Name="List Table 7 Colorful Accent 4"/>
<w:LsdException Locked="false" Priority="46"
Name="List Table 1 Light Accent 5"/>
<w:LsdException Locked="false" Priority="47" Name="List Table 2 Accent 5"/>
<w:LsdException Locked="false" Priority="48" Name="List Table 3 Accent 5"/>
<w:LsdException Locked="false" Priority="49" Name="List Table 4 Accent 5"/>
<w:LsdException Locked="false" Priority="50" Name="List Table 5 Dark Accent 5"/>
<w:LsdException Locked="false" Priority="51"
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<w:LsdException Locked="false" Priority="52"
Name="List Table 7 Colorful Accent 5"/>
<w:LsdException Locked="false" Priority="46"
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<w:LsdException Locked="false" Priority="47" Name="List Table 2 Accent 6"/>
<w:LsdException Locked="false" Priority="48" Name="List Table 3 Accent 6"/>
<w:LsdException Locked="false" Priority="49" Name="List Table 4 Accent 6"/>
<w:LsdException Locked="false" Priority="50" Name="List Table 5 Dark Accent 6"/>
<w:LsdException Locked="false" Priority="51"
Name="List Table 6 Colorful Accent 6"/>
<w:LsdException Locked="false" Priority="52"
Name="List Table 7 Colorful Accent 6"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Mention"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Smart Hyperlink"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Hashtag"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Unresolved Mention"/>
</w:LatentStyles>
</xml><![endif]--><!--[if gte mso 10]>
<style>
/* Style Definitions */
table.MsoNormalTable
{mso-style-name:"Table Normal";
mso-tstyle-rowband-size:0;
mso-tstyle-colband-size:0;
mso-style-noshow:yes;
mso-style-priority:99;
mso-style-parent:"";
mso-padding-alt:0cm 5.4pt 0cm 5.4pt;
mso-para-margin-top:0cm;
mso-para-margin-right:0cm;
mso-para-margin-bottom:8.0pt;
mso-para-margin-left:0cm;
line-height:107%;
mso-pagination:widow-orphan;
font-size:11.0pt;
font-family:"Calibri",sans-serif;
mso-ascii-font-family:Calibri;
mso-ascii-theme-font:minor-latin;
mso-hansi-font-family:Calibri;
mso-hansi-theme-font:minor-latin;
mso-bidi-font-family:"Times New Roman";
mso-bidi-theme-font:minor-bidi;
mso-ansi-language:SK;
mso-fareast-language:EN-US;}
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<![endif]-->
<br />
<div class="MsoNormal">
<span lang="EN-US" style="font-size: 12.0pt; line-height: 105%; mso-ansi-language: EN-US;">Dear friends, </span></div>
<div class="MsoNormal">
<span lang="EN-US" style="font-size: 12.0pt; line-height: 105%; mso-ansi-language: EN-US;">My name is Maria Benedekova. I would like to
share with you my impressions from the 5<sup>th</sup> International Caregivers´
Conference that was held in Munich, Germany, in August this year. </span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-US" style="font-size: 12.0pt; line-height: 105%; mso-ansi-language: EN-US;">I am the mother of Tomas Benedek (16y) who has PWS. We
live in Slovakia and are member of the Slovak PWS association (<span class="MsoHyperlink"><a href="http://www.pwsyndrom.sk/">www.pwsyndrom.sk</a></span>).
Our association has been an IPWSO member for several years. I have represented
our association in IPWSO for about 10 years. I also attended several
conferences organized by IPWSO, the last was the International Caregivers´
Conference held in Munich this August.</span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-US" style="font-size: 12.0pt; line-height: 105%; mso-ansi-language: EN-US;">For me this has been the best conference so far,
because I as a mother am at the same time also the caregiver of my son. In
Slovakia we have no homes, not even day centers for PWS, our children go to
school for children with special needs, usually they are in class with children
with Autistic Spectrum Disorder. After they complete their education, they
either go to a day center where they spend a few hours with other adults with
disabilities or they stay at home with their parents, have no job, get
frustrated, put on weight, have behavioral tantrums, etc. That’s why, we as
parents are also the caregivers at the same time. </span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-US" style="font-size: 12.0pt; line-height: 105%; mso-ansi-language: EN-US;">The topics that were discussed during the conference
were very interesting, I took part in two workshops focused on
self-determination and relations, friendships and sexual education. The fact
that the attendees worked in workshops gave us the opportunity to speak about
our problems, think of behavior management methods and ask questions related to
life with a young or adult person with PWS.<span style="mso-spacerun: yes;">
</span>I asked many questions, received many valuable answers that I am
applying into my every day life routine with my son Tomas. </span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-US" style="font-size: 12.0pt; line-height: 105%; mso-ansi-language: EN-US;">I want to thank the conference organizers for giving
me the grant to participate in the conference. I met lot of people I knew
already from other IPWSO conferences and I made new contacts with caregivers
from countries that are not so far away from Slovakia (Austria, Switzerland)
who work in day centers where they look after persons with PWS. I hope to visit
some of these centers in the future and maybe get an inspiration and know – how
that our Slovak PWS association can use in the future when establishing a home
or center for people with PWS.</span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-US" style="font-size: 12.0pt; line-height: 105%; mso-ansi-language: EN-US;">Maria Benedekova</span></div>
<div class="MsoNormal">
<span lang="EN-US" style="font-size: 12.0pt; line-height: 105%; mso-ansi-language: EN-US;">Slovak PWS association </span></div>
<div class="MsoNormal">
<span class="MsoHyperlink"><span lang="EN-US" style="font-size: 12.0pt; line-height: 105%; mso-ansi-language: EN-US;"><a href="mailto:benedekova@pwsyndrom.sk">benedekova@pwsyndrom.sk</a></span></span><span lang="EN-US" style="font-size: 12.0pt; line-height: 105%;"> </span><span lang="EN-US" style="font-size: 12.0pt; line-height: 105%; mso-ansi-language: EN-US;"></span></div>
</div>
Tui Chizownhttp://www.blogger.com/profile/11362569853162067460noreply@blogger.com0tag:blogger.com,1999:blog-1343067279870496201.post-73161927000957903352018-07-23T14:33:00.000+12:002018-07-25T11:10:19.789+12:00Thinking about autism and PWS<div dir="ltr" style="text-align: left;" trbidi="on">
<div class="font_7">
<i>by Linda Thornton</i></div>
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<br /></div>
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<div class="font_7">
I think today it is recognised that many PWS behaviours fit into the autistic spectrum. As far back as 2007, a study “Autistic Symptomatology, PWS and its Derivations for
Treatment” looked at the PWS diagnostic approaches that
are also found in autism in order to make a therapeutic connection. The
results reported problems in PWS which represent three major clusters
also found in autism: </div>
<ol class="font_7">
<li>Socialisation (alteration of social development, especially interpersonal development and ranged from loneliness to excessive sociability with strangers.</li>
<li>Verbal and non-verbal communication</li>
<li>Restrictive and repetitive parameters of conduct (rigid aspects and limited interest)</li>
</ol>
<div class="font_7">
Other studies have looked at the genetic subtypes of
PWS to see whether one might be more prone to having autistic-like
behaviours than another with a prediction that those with the
uniparental disomy (UPD) diagnosis would have more autistic-like
behaviours. From my own personal observations throughout New
Zealand, I have seen children with the imprinting diagnosis to show more
autistic-like behaviours than the other two subtypes. </div>
<div class="font_7">
<br /></div>
<div class="font_7">
Prader-Willi Syndrome is listed as one of a large group of disorders
associated with autism and looking at the three areas of comparison above, we can start to see where they connect: </div>
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<br /></div>
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<b>Socialisation</b></div>
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<br /></div>
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"People with autism are
kind, sensitive people, but they may not read signals or know how to
respond." This is also the same as people with PWS</div>
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<br /></div>
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"Often a person with
autism becomes anxious and depressed, has low self-esteem and becomes
angry because of this." This can be noticed in PWS</div>
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<br /></div>
<div class="font_7" style="margin-left: 17.25pt;">
People with autism are
sensitive to sensory things like sounds, smells, touch. Quite often
they cannot stand to wear certain clothing against their skin. Often
noted in some people with PWS</div>
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<br /></div>
<div class="font_7">
<b>Sensory</b> </div>
<div class="font_7">
A lot of people with autism can not tolerate loud noises.
They actually hurt the person. High pitched continuous noises such as
hair dryers, or small motors are annoying. Fire alarms, sirens, loud
shrill voices, there are many noises that can not be tolerated. Could
this be a reason for sleeplessness at night? Could there be a
noise-intolerance level that we are not picking up in PWS?</div>
<div class="font_7">
<br /></div>
<div class="font_7">
Because of their sensitivity to touch, people with
autism do not like to be cuddled, petted, tickled. However, many of
them do like to be held closely (not necessarily be another person). Dr
Temple Grandin (one of the world‟s most celebrated people with autism)
recognised the sudden docility of cattle when held in a crush. As a
child, she wanted the same feeling, so built her own “squeeze machine”
which held her tight, safe, and secure. She could control the amount of
pressure and release when necessary. This is now recognised as a form
of treatment in autism – “sensory integration therapy” – the deep
pressure (rather than a cuddle or pat) allows comforting relaxation.
Could swaddling a baby when going to sleep be part of the same feeling
of relaxed safety and comfort? Could it help our children with PW whose
sleeping patterns are disrupted?</div>
<div class="font_7">
<br /></div>
Sensitivity to taste and
texture of food – many people with autism do not like their foods
muddled on the plate, can not bear to have more than one taste in their
mouths at a time, find the mixture of flavours so obnoxious that they
even vomit. I know that this isn't a common characteristic in PWS, but I
have witnessed a person carefully take off all the parsley flakes from a
portion of rice on her plate. And I know some with PWS who have an
absolute objection to the taste of some foods.
<br />
<div class="font_7">
<br /></div>
<div class="font_7">
Sensitivity to smell will often cause a person with
autism to go right off another person because they may have, for
example, bad breath, or be wearing a perfume which is just not tolerable
to the senses of the autistic person. I know that many people with PWS
are sensitive to smells and can sniff out a fish-and-chip shop at 100
paces, or hear the sound of rustling chocolate paper through deep sleep!</div>
<div class="font_7">
<br /></div>
<div class="font_7">
<b>Routine and consistency</b> </div>
<div class="font_7">
People with autism do not like change. They need
consistency and routine. If you tell them you are going to the library –
that is exactly what it means. It does not mean stopping off at
grandma's on the way there or back. It's not what you said. Do not
automatically expect a person with autism, or with PWS to be able to
cope with change or surprise. Surprises can lead to panic attacks.</div>
<div class="font_7" style="margin-left: 18pt;">
<br /></div>
<div class="font_7">
Using pictures to tell the sequence of an activity is
the best way you can help a child with autism. It's also a way that
works in PWS. This is a way of reducing anxiety, introduces a routine
that can be relied upon and teaches sequencing. </div>
<div class="font_7" style="margin-left: 36pt;">
</div>
Children with autism find
it difficult to share their toys. By sharing, they lose control. As
it is important for the child to retain control, the concept of sharing
does not make sense. A sense of control is important to any child with a
disability. Making sense of their own world (control) is the only way
they can start to make sense of the real world
<br />
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<br /></div>
People with autism can be seen as being self-centered. This is essentially recognised in PWS as well
<br />
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<br /></div>
<div class="font_7">
<br /></div>
<b>
</b><br />
<div class="font_7">
<b>Verbal and non-verbal communication</b> </div>
<div class="font_7">
Behaviour is a form of communication. This includes
all behaviours whether we regard them as socially acceptable or not.
Body language is an important signal for communication and often relates to the need for calming down. In autism
this may take the shape of “fingering”, or “stimming” (stimulatory
behaviour, for example, spinning a lid, flicking a twig, flicking
pages). Many children with PWS will "stim‟, or appear hypnotized by
repetitive movement.</div>
<div class="font_7">
<br /></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhSTpgkxFoIHqe99SE3-ItG0MngRylScPManrGnv-hCZCfEHiV4PKcBKH8N59UEibU7-87bSdKrF9aNmDdbX7OW5OXYoYchic64NjXOg6zcy6vp_mXvn3pNd2GOD4ZDyJ9eVKKyoIbtasc/s1600/stimming.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" data-original-height="186" data-original-width="271" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhSTpgkxFoIHqe99SE3-ItG0MngRylScPManrGnv-hCZCfEHiV4PKcBKH8N59UEibU7-87bSdKrF9aNmDdbX7OW5OXYoYchic64NjXOg6zcy6vp_mXvn3pNd2GOD4ZDyJ9eVKKyoIbtasc/s1600/stimming.jpg" /></a></div>
<div class="font_7">
It may mean that stimming behaviour portrays anxiety, or may be anticipating
an unwelcome surprise or change in routine, it may be that the person
is not coping with the noise or things surrounding him/her and so turns
to “stimming” in order to put a form of control back into their
surroundings.</div>
<div class="font_7">
<br /></div>
<div class="font_7">
A person with autism interprets language in the form
of pictures – almost like a video playing over in their mind. It is
difficult to grasp the concept of words (squiggles on paper) but easy to
grasp a visual image. This is a particularly good way of teaching a child with PWS as well. </div>
<div class="font_7">
<br /></div>
<div class="font_7">
Repetitive speech in autism is called “echolalia”.
However, to a person with autism, this can be a normal communication.
However annoying it might be to another person to hear someone repeat
the same phrase over and over, the repetition to an autistic child is a
reinforcement of the whole concept of the word. For example “Mummy"
comes to mean "Mummy" because of the whole of the experience, that is,
the smell of Mummy, the house where Mummy lives, the shape of Mummy, the
sound of Mummy, etc. Most children begin their language acquisition by
using this gestalt form (ie a word that is more than the sum of its parts) but quickly change over to an analytic form when the recognise that "Mummy" is a word that can represent other
things besides the whole of their experience with their specific
"Mummy."</div>
<div class="font_7">
<br /></div>
<div class="font_7">
Repetitive questioning as PWS communication is very
common. Usually we treat it as a difficulty to comprehend the message.
We generally answer the question and tell the child to repeat our
answer in the hope this will stop the questioning. More often than not,
it doesn't work and the repetitive questioning goes on and on. </div>
<div class="font_7">
<br /></div>
<div class="font_7" style="margin-left: -0.25pt;">
<b>Repetitive Behaviour</b></div>
<div class="font_7">
Being aware of a repetitive behaviour that might lead
into further agitation will give the parent or caregiver a "heads up‟ or signal. </div>
<div class="font_7">
<br /></div>
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<div class="font_7">
People with autism like order, predictability and
perspective. Many of them love to watch model trains, and when they're
older, become train-spotters. Getting down to ground level to watch a
model train go round and round on tracks allows the child to become part
of the ordered predictability. They are almost mesmerized by this and
seem to be in another world. Although a person with PWS may not become fixated by
this repetitive movement, they do like order, predictability and
perspective. Some of them are completely happy in an environment of
rules and regularity. Some are very tidy – and some aren't!</div>
<div class="font_7">
<br /></div>
<div class="font_7">
At an International PWS Conference I heard a paper
given on behaviour where it was suggested that a child with PW might
become so fully absorbed in the task at hand (in this case it was a
jig-saw puzzle) that they appear to be “in the flow” or “at one” with
the object. This was to be encouraged as a time of well-being and
wholeness, and could be used as a reward. Being “in the flow” might also account for the
serenity of the child with autism when stimming or
absorbed in their "special subject‟. A person with PWS can also become
absorbed in their "special subject‟, appear more serene and "in the
flow‟.</div>
<div class="font_7">
<br /></div>
<div class="font_7">
Taking away the stimming object (which may be seen as
inappropriate) will always be replaced by something else of their
choice. Be careful in taking away something considered inappropriate as
it might be replaced by something even more inappropriate. </div>
<div class="font_7">
<br /></div>
<div class="font_7">
When a person becomes terrified of a world full of
scary sensory experiences, they become almost shell-shocked and need a
coping or escape mechanism. They can become mesmerized by a repetitive
action or sensation and will do this repetitive action over and over in
order to allay their fear and anxiety around what will be their next bad
experience. Often the person will spin, or flap hands. </div>
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This is a
clear signal for sensory overload. This is similar to the experience of a person with PWS
whose world becomes out of kilter, a sense of loss of control may erupt
with challenging physical behaviours.<br />
<div class="font_7">
<br /></div>
<div class="font_7">
People with autism like neatness and order. Some
people (not all) with PWS show similar need for order and can tell
immediately if something has been disturbed, replaced, or is no longer
there. For a person with autism this can mean more than just
“something"s gone”, it can mean if a detail is changed, the whole
picture becomes different. It is no longer the same. For a "normal‟
person this can be difficult to understand, and words of platitude will
not help. </div>
<div class="font_7">
<br /></div>
<div class="font_7">
I have witnessed this many times in PWS. If a stitch
is out of place, the garment is ruined, useless; if a toy has a blemish,
it is wasted, imperfect,</div>
<div class="font_7">
<br /></div>
<div class="font_7">
Obsessive compulsive disorder: this seems to be the
main area where people with PWS gain the label of having autistic-like
behaviours. What does it mean? In autism, obsessive compulsive
behaviours are a means of reducing anxiety; the behaviours themselves
become almost irresistible in their repetitiveness and therefore an
obsession. Often these obsessive repetitive behaviours are done to
reduce a negative experience, to allay anxiety or what could go wrong
(eg handwashing), or a fear of contamination. In their extreme,
behaviours take over from language and the ability to speak reduces. </div>
<div class="font_7">
<br /></div>
<div class="font_7">
Having identified behaviours where PWS and autism
cross over, the next question is how to manage the behaviour in a way
that is win-win. Some of the strategies offered at the autism seminar
were:</div>
<div class="font_7">
<br /></div>
<div class="font_7">
<br /></div>
<div class="font_7" style="margin-left: -0.25pt;">
<b>Strategies for coping</b></div>
<div class="font_7">
<br /></div>
<div class="font_7" style="margin-left: 17.25pt;">
Strategies for reducing
stress levels: identify the stress, teach deep breathing and
relaxation. Anxieties are often at their most profound around puberty.</div>
<div class="font_7">
<br /></div>
<div class="font_7" style="margin-left: 17.25pt;">
Strategies to reduce
repetitive questioning or echolalia: don't ask too many questions.
Make statements, comments, and praise. Questions confuse a person and
raise more questions from them. Repetitive questioning can also give a
person a sense of satisfaction or reassurance that you have not changed
your mind.</div>
<div class="font_7">
<br /></div>
<div class="font_7" style="margin-left: 17.25pt;">
Disappearing into one's own realm by rocking, spinning, or becoming absorbed in their</div>
<div class="font_7" style="margin-left: 36pt;">
“special interest” helps to
give the person comfort. It alters their state of consciousness (in
other words, shuts out all the unwanted things). It is possible to
confine some behaviours to a time or place that is more acceptable.</div>
<div class="font_7">
<br /></div>
<div class="font_7">
Self-injury is also common in autism as it can be in
PWS. However, in autism this can also lead to epilepsy and with severe
autism this is as common as 1 in 3 people especially during puberty.
Self-injury can be caused from depression (“what's wrong with me/I hate
myself”) or extreme rage when the intensity of emotion is overpowering.
Skin-picking, pulling toenails or fingernails, even head-shaving and
piercing with sharp object can be seen as self-injury. </div>
<div class="font_7">
<br /></div>
<div class="font_7">
Children and adults who are unable to meet a steady
gaze because they feel threatened by it, are often attracted to animals
who do not hold a gaze either, and are non-judgmental. Sitting
alongside a person means they do not have to meet your gaze and they
feel more comfortable.</div>
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<div class="font_7">
<br /></div>
Music therapy is proving
very successful in children with autism especially when learning to
speak. Singing, rather than saying, is a much easier way to learn to
vocalize. It's a good way to "pattern" behaviour and to learn how to
sequence. For example, you can have your very own “getting dressed”
song which teaches the child the correct sequencing. Songs for other
special activities; just starting to sing a line of the familiar song
will capture the child's attention. This is also a technique
successfully used by teachers. Choice of music for personal
down-time is interesting – many choose heavy rock or
heavy metal music as a release for anger.
<br />
<div class="font_7">
<br /></div>
<div class="font_7" style="margin-left: -0.75pt;">
Anger: the similarities with PWS here are obvious: </div>
<ul class="font_7" style="text-align: left;">
<li>Two-thirds of adolescents with Asperger's syndrome
have a secondary mood disorder, anxiety, depression, anger. Many suffer bullying and teasing; many can not understand emotions; many show social anxiety about making mistakes and often become controlling as a defence mechanism; many get exhausted at school from socialising as well as learning and, once at home, a different personality arises.</li>
<li>
<div class="font_7">
Anger is often a "quick fix" or breaking something to release energy.
Often this results in expulsion from school. I have heard of a young man with
PWS who will break glass and once into breaking glass, the repetitive
action for him is a release for his anger. </div>
</li>
<li>
<div class="font_7">
Often the anger is due to a feeling of not being
valued (although this in itself is not often able to be vocalized or
explained). Anger can be symptomatic of depression. </div>
</li>
<li>
<div class="font_7">
Lunar cycle: the full moon can be a time for
problems – I have heard this mentioned often! Keeping a diary
over the months will indicate whether the lunar cycle is indicative of
behavioural disturbances</div>
</li>
<li>Keeping a visual thermometer of anger and sitting
alongside the person, you can ask the child whereabouts on the
thermometer they see themselves. They can then start to identify
emotions of anger from low-level to high.</li>
<li>A survey of 238 children and adolescents showed 64%
had more problems with anger; management than typical children, 58% had
rapid mood changes more than typical children. </li>
</ul>
<div class="font_7">
</div>
<div class="font_7" style="margin-left: -0.25pt;">
<b>In conclusion:</b></div>
<div class="font_7">
By looking at others' behaviours we can see how we can share strategies and understand other similar behaviours, we can start to see the world from their different perspectives. This may help with better management and our understanding of
the ways in which people with PWS see their world.</div>
<div class="font_7">
<br /></div>
<div class="font_7">
Understanding behaviour as a form of communication means we have to better understand the behaviours and what they mean. </div>
<div class="font_7">
<br /></div>
<div class="font_7">
<i>More information in <a href="https://www.autismnj.org/understanding_autism/autism101" target="_blank">Autism</a></i> </div>
<div class="font_7">
<br /></div>
</div>
Tui Chizownhttp://www.blogger.com/profile/11362569853162067460noreply@blogger.com0tag:blogger.com,1999:blog-1343067279870496201.post-57164372518195478632018-06-28T21:01:00.000+12:002018-06-28T21:01:16.535+12:00What teachers need to know: PWS in the classroom<div dir="ltr" style="text-align: left;" trbidi="on">
<div>
<div class="font_8" style="font-size: 15px;">
<i><span style="font-size: 15px;">by Linda Thornton</span></i></div>
<div class="font_8" style="font-size: 15px;">
<br /></div>
<div class="font_8" style="font-size: 15px;">
<span style="font-size: 15px;">It is important that we recognise the learning ability of the child, and meet their individual, special needs as required. </span></div>
<div class="font_8" style="font-size: 15px;">
<br /></div>
<div class="font_8" style="font-size: 15px;">
<span style="font-size: 15px;">Students with PWS are very receptive to learning and are keen to please. In general they have good reading skills, but poor numerical skills and handwriting can be slow to develop. They show ability to learn computer skills and often have excellent fine motor skills, for instance, many are particularly clever with jig-saw puzzles, threading beads, and many show an aptitude for fine handiwork including needlework and knitting. The IQ level generally falls in the just-below-normal category, but often shows “islands of </span></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjh3db_4nqogpMIPxsbGGw5dkkgbDq8iPoTqbG9O9Ra_OORhzN52YEkYRSJjLDPCDKBNdoC5wKRwGK1VmTcBVIgfH2Y9vPgiySbwpWGtpZdqRyVoCnHjbbc19jCokJN6Q6tqhbPBGcMJHM/s1600/jigsaw.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" data-original-height="252" data-original-width="450" height="179" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjh3db_4nqogpMIPxsbGGw5dkkgbDq8iPoTqbG9O9Ra_OORhzN52YEkYRSJjLDPCDKBNdoC5wKRwGK1VmTcBVIgfH2Y9vPgiySbwpWGtpZdqRyVoCnHjbbc19jCokJN6Q6tqhbPBGcMJHM/s320/jigsaw.jpg" width="320" /></a></div>
competence”, in other words, they might be equal with their peers in some areas, but need support to reach potential in others.<br />
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<br /></div>
<div class="font_8" style="font-size: 15px;">
<span style="font-size: 15px;">Throughout integrated primary and secondary education, it is important for the student to have teacher aide time. Although this is not always available for many students with special needs, it should be applied for on all levels. The need for teacher aides will not decrease as the student progresses.</span></div>
<div class="font_8" style="font-size: 15px;">
<br /></div>
<div class="font_8" style="font-size: 15px;">
<span style="font-size: 15px;">Teachers should be as familiar as possible with the characteristics of this syndrome, even including the genetic sub-types, as this will impact on the learning ability of the student and the teaching strategies employed.</span></div>
<div class="font_8" style="font-size: 15px;">
<br /></div>
<div class="font_8" style="font-size: 15px;">
<span style="font-size: 15px;">Genetic sub-types: Within the deletion on Chromosome #15 which causes Prader-Willi syndrome come three sub-types:</span></div>
<div class="font_8" style="font-size: 15px;">
<span style="font-size: 15px;"><br /></span></div>
<ol style="text-align: left;">
<li><span style="font-size: 15px;">The most common is the actual Deletion (a deletion on their paternal side)</span></li>
<li><span style="font-size: 15px;">Secondly comes the Maternal Disomy (a double copy of the mother's chromosome)</span></li>
<li><span style="font-size: 15px;">Thirdly is the the mosaic imprinting.</span></li>
</ol>
</div>
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<span style="font-size: 15px;">Certain characteristics are now being recognised in each group and a flurry of research has provided us with the information that </span><span style="font-size: 15px;">those with UPD generally have better-developed expressive language (Roof et al., 2,000; Whittington et al 2004)</span>, but somewhat poorer visual
memory and puzzle-solving skills (Dykens, 2002; Verdine, Troseth, Hodapp, &
Dykens, in press). Individuals with UPD may be less apt to skin-pick (Dykens,
Cassidy, & King, 1999; Symons et al., 1999<br />
<br />
Comparing 12 participants with Deletion and UPD deletions, Butler et al. (2004) found that the Deletion group had lower reading, math, and adaptive behavior scores, and higher externalizing behaviors and severity of compulsions"<br />
<br />
Those with the mosaic imprinting tend to have more behaviours similar to those with autism, so if your skills lie with teaching those with autism, many of your practices will be similarly employed with PWS. <br />
<br />
Although you may not be told the deletion type of your student, it will help you to understand why not all students with PWS are the same! <br />
<br />
(<i><a href="https://www.ipwso.org/for-medical-professionals" target="_blank">Further reading</a> scroll to "Differences in Genetic Subtypes")</i><br />
<br />
<br />
<div>
<div class="font_8" style="font-size: 15px;">
<br /></div>
<div class="font_8" style="font-size: 15px;">
<b><span style="font-size: 15px;"><span class="color_28">Relative learning skills:</span></span></b></div>
<div class="font_8" style="font-size: 15px;">
<br /></div>
<div class="font_8" style="font-size: 15px;">
<span style="font-size: 15px;"><span class="color_28"> </span></span><span style="font-size: 15px;">Maths teaching needs to be conceptual,
practical, and often repeated several times before there is
understanding. Teaching the use of a calculator immediately helps the
level of understanding. Once understanding has occurred, the concepts
generally remain. Like all students, they thrive on praise.</span></div>
<ul class="font_8">
<li><div class="font_8" style="font-size: 15px;">
<span style="font-size: 15px;">Good long-term memory skills</span></div>
</li>
<li><div class="font_8" style="font-size: 15px;">
<span style="font-size: 15px;">Receptive language</span></div>
</li>
<li><div class="font_8" style="font-size: 15px;">
<span style="font-size: 15px;">Good at puzzles</span></div>
</li>
<li><div class="font_8" style="font-size: 15px;">
<span style="font-size: 15px;">Visual processing (relative to auditory processing)</span></div>
</li>
<li><div class="font_8" style="font-size: 15px;">
<span style="font-size: 15px;">Basic maths skills (especially with calculator)</span></div>
</li>
<li><div class="font_8" style="font-size: 15px;">
<span style="font-size: 15px;">Reading skills</span></div>
</li>
<li><div class="font_8" style="font-size: 15px;">
<span style="font-size: 15px;">(Some) good computer skills</span></div>
</li>
<li><div class="font_8" style="font-size: 15px;">
<span style="font-size: 15px;">Social and friendly</span></div>
</li>
</ul>
<div class="font_8" style="font-size: 15px;">
<br /></div>
<div class="font_8" style="font-size: 15px;">
<b><span style="font-size: 15px;"><span class="color_28">Learning weaknesses:</span></span></b></div>
<ul class="font_8">
<li><div class="font_8" style="font-size: 15px;">
<span style="font-size: 15px;">Poor short-term memory skills (visual-motor and auditory-visual)</span></div>
</li>
<li><div class="font_8" style="font-size: 15px;">
<span style="font-size: 15px;">Expressive language</span></div>
</li>
<li><div class="font_8" style="font-size: 15px;">
<span style="font-size: 15px;">Poor fine and gross motor skills</span></div>
</li>
<li><div class="font_8" style="font-size: 15px;">
<span style="font-size: 15px;">Sequential processing deficit</span></div>
</li>
<li><div class="font_8" style="font-size: 15px;">
<span style="font-size: 15px;">Difficulty with abstract concepts</span></div>
</li>
<li><div class="font_8" style="font-size: 15px;">
<span style="font-size: 15px;">Short attention span</span></div>
</li>
<li><div class="font_8" style="font-size: 15px;">
<span style="font-size: 15px;">Communication difficulties (may end in temper outburst)</span></div>
</li>
</ul>
<div class="font_8" style="font-size: 15px;">
<br /></div>
<div class="font_8" style="font-size: 15px;">
<span style="font-size: 15px;">It is important that the behaviours or issues that challenge are identified. Some will result in having to manage the actual environment with school lunches and all food being kept out of reach, money being held by teachers (for all students ) and some new management skills.</span></div>
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<br /></div>
<div class="font_8" style="font-size: 15px;">
<b><span style="font-size: 15px;"><span class="color_28">TEACHING STRATEGIES</span></span></b></div>
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<br /></div>
<div class="font_8" style="font-size: 15px;">
<b><span style="font-size: 15px;"><span class="color_28">Give positive instructions:</span></span></b></div>
<div class="font_8" style="font-size: 15px;">
<span style="font-size: 15px;">Students with PWS tend to have a fairly rigid or concrete way of thinking, and tend to work best to a set routine and positive timetable. They can accept change if prepared for it beforehand, but a sudden, unexpected change may result in an uncooperative student. It is sensible preparation to warn beforehand if something is to be postponed or cancelled. If the student doesn’t clearly understand the instructions, you may find resistance to change. Do make sure the student knows that this will not change lunchtime! A common indicator of this might be persistent or repetitive questioning from the student in spite of having heard the answer. Be patient, use visual as well as verbal, instructions.</span></div>
<div class="font_8" style="font-size: 15px;">
<br /></div>
<div class="font_8" style="font-size: 15px;">
<span style="font-size: 15px;"><b><span class="color_28">Perseveration:</span></b><br />Constant persistent questioning is a common characteristic of the syndrome. Answer questions up to two times, then write it down if necessary. Check with the student to see they clearly understand your answer. Ask them to tell you what they are going to do, or what the answer is; even ask them to write it down for you. Clear communication is the key here.</span></div>
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<b><br /></b></div>
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<div class="font_8" style="font-size: 15px;">
<b><span style="font-size: 15px;"><span class="color_28">Use visual schedules:</span></span></b></div>
<div class="font_8" style="font-size: 15px;">
<span style="font-size: 15px;">The student may have difficulty in finishing a task on time, or may display perseveration (repetitive questioning), a characteristic common to the syndrome. Perseveration indicates an inability to process information coherently or sequentially. Not finishing a task on time can incite some obessive compulsive behaviour. In both cases, using both a verbal reminder, combined with a visual schedule, or prompt, will assist the student. This may be anything from a simple egg-timer, to a daily pictorial class schedule to help with time-keeping. Children with PWS greatly enjoy achievement charts, no matter what the age.</span></div>
<div class="font_8" style="font-size: 15px;">
<br /></div>
<div class="font_8" style="font-size: 15px;">
<b><span style="font-size: 15px;"><span class="color_28">Always have Plan A and Plan B:</span></span></b></div>
<div class="font_8" style="font-size: 15px;">
<span style="font-size: 15px;">It is sensible to have a fall-back plan in the likelihood that your Plan A does not eventuate. This will prevent disappointment, frustration and anger, and keep the student in the loop. Working out probabilities and possibilities beforehand, including extra staffing, is a precaution that is essential. Occasions will arise when the student refuses to go on an outing, or to participate in a class activity. Rather than have this spoil the day, Plan B can be brought into play.</span></div>
<div class="font_8" style="font-size: 15px;">
<br /></div>
<div class="font_8" style="font-size: 15px;">
<b><span style="font-size: 15px;"><span class="color_28">Break tasks down into manageable parts:</span></span></b></div>
<ul class="font_8">
<li><div class="font_8" style="font-size: 15px;">
<span style="font-size: 15px;">Have no more than two-step directions</span></div>
</li>
<li><div class="font_8" style="font-size: 15px;">
<span style="font-size: 15px;">Have shortened assignments</span></div>
</li>
<li><div class="font_8" style="font-size: 15px;">
<span style="font-size: 15px;">Brief (or no) homework</span></div>
</li>
<li><div class="font_8" style="font-size: 15px;">
<span style="font-size: 15px;">Ask - don't demand</span></div>
</li>
<li><div class="font_8" style="font-size: 15px;">
<span style="font-size: 15px;">Control access to food and money</span></div>
</li>
<li><div class="font_8" style="font-size: 15px;">
<span style="font-size: 15px;">Identify areas of accessibility (to food and money)</span></div>
</li>
</ul>
<div class="font_8" style="font-size: 15px;">
All teachers have their own workable strategies - the above is designed to help understand the thinking of the student with PWS.</div>
<div class="font_8" style="font-size: 15px;">
<br /></div>
<div class="font_8" style="font-size: 15px;">
<span style="font-size: 15px;"><i>If you would like further information on strategies to use in the classroom,</i><a href="mailto:information@ipwso.org" target="_blank"> contact us</a>.</span></div>
</div>
</div>
Tui Chizownhttp://www.blogger.com/profile/11362569853162067460noreply@blogger.com0tag:blogger.com,1999:blog-1343067279870496201.post-5362244139265536812018-06-21T15:53:00.000+12:002018-06-21T15:55:43.746+12:00So, it's time for school...<div dir="ltr" style="text-align: left;" trbidi="on">
<div class="font_7">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEisF0Bo5_SOmnaT2ztwhGRsCxmcYq4Vex5nqixQ7ALGj9Jt-Hs5PbvYywWaIIYeZxSnp6LoUU4EHDn9got6EXvd0_DrhiuMN8rWwEigas1m0YRo9fRuSMW64npJoGHRC2EjtH41anEEEo0/s1600/school5.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" data-original-height="240" data-original-width="255" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEisF0Bo5_SOmnaT2ztwhGRsCxmcYq4Vex5nqixQ7ALGj9Jt-Hs5PbvYywWaIIYeZxSnp6LoUU4EHDn9got6EXvd0_DrhiuMN8rWwEigas1m0YRo9fRuSMW64npJoGHRC2EjtH41anEEEo0/s1600/school5.jpg" /></a><span style="font-size: 13px;"><span style="font-family: "tahoma";"></span></span><i><span style="font-size: 13px;"><span style="font-family: "tahoma";">This
as a general guideline for parents of school-age children. Of course,
each country is different, and each culture is different. You may,
however, find some of this helpful. (Linda Thornton)</span></span></i></div>
<div class="font_7">
<br /></div>
<div class="font_7">
<span style="font-size: 13px;"><span style="font-family: "tahoma";">Children
with PWS are very receptive to learning, they generally have good
reading skills, but poor numerical skills and their handwriting is slow
to develop. They show good ability to learn computer skills and often
have good fine motor skills (jigsaw puzzles, threading beads etc). Their
IQ level generally falls in the just-below-normal level, but often
shows "islands of competence".</span></span> <span style="font-size: 13px;"><span style="font-family: "tahoma";">Maths
instruction needs to be conceptual and practical and often repeated
many times before there is understanding. Once understanding has
occurred however, the concepts generally remain. Like all children they
thrive on praise. Teaching the skills of using a calculator, for
instance, is often more useful than trying to teach the times-tables.</span></span></div>
<h5 class="font_5">
<span class="color_28"><span style="font-family: "basic" , sans-serif;"><span style="font-size: 18px;">Primary Schooling</span></span></span></h5>
<div class="font_7">
<span style="font-size: 13px;"><span style="font-family: "tahoma";">On
the whole, children with PWS can manage primary school years well. If the school is able to provide a teacher aide, then your child will cope better within the structure of the
classroom.</span></span></div>
<div class="font_7">
<br /></div>
<span style="font-family: "basic" , sans-serif;"><span class="color_28"><span style="font-size: 18px;"> <b>Secondary School Options</b></span></span></span>
<br />
<ul class="font_8" style="margin-left: 40px;">
<li>
<div class="font_8">
<span style="font-size: 13px;"><span style="font-family: "tahoma";"><u>Attending a mainstream school</u>: This is often difficult for any child with any disability and this is where a teacher aide is invaluable. Check with the school to see whether a teacher aide is possible - and for how many hours a week. If this works, then great! If the school is genuinely interested in the welfare and learning of its special needs students, and is keen to learn how best to support your child, then this is a great opportunity. </span></span></div>
</li>
<li>
<div class="font_8">
<span style="font-size: 13px;"><span style="font-family: "tahoma";"><u>Attending
a school with a Special Unit attached</u>: Go and visit the special unit, spend some time there, see how it works and whether your son or daughter will be well-cared for. Look at the work units that are being done; see if they are right for your child. Sometimes the special units will integrate with mainstream students. Take note of how they deal with this transition (is it a cooking programme with food involved, for example; ask how they will manage this for your son/daughter). </span></span></div>
</li>
<li>
<div class="font_8">
<span style="font-size: 13px;"><span style="font-family: "tahoma";"><u>Special
Residential Schools</u>: Some countries have special residential schools
for students with disabilities. If you have this option, go and visit the school; spend some time there, watch how the students interact, take note of how they manage meal times. Take your son or daughter with you and make sure they feel comfortable with the idea of boarding away from home.</span></span></div>
<br />
</li>
</ul>
<h3 class="font_3">
<span style="font-family: "basic" , sans-serif;"><span class="color_28"><span style="font-size: 18px;">Talking to the school</span></span></span></h3>
<div class="font_7">
<span style="font-size: 13px;"><span style="font-family: "tahoma";">Parents
need to be prepared to talk to their son or daughter's teachers every
time they change class. Teachers need to know how to manage their
student, and you need to make sure they understand what this really
means.</span></span></div>
<div class="font_7">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiVaeRJ9ycwpgbjn668uSq5nZOrgsdar8WXnsQKi8JhiQOPlNIJtHkaC7I33t5Apfh6AtKvvlZhoLPtdPkggMb74WgKurSV-0ZQ4WRMdEt9eMnFKgRkvEa17jXoXV5k_2fzidSD1PJx1yc/s1600/school3.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" data-original-height="247" data-original-width="369" height="214" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiVaeRJ9ycwpgbjn668uSq5nZOrgsdar8WXnsQKi8JhiQOPlNIJtHkaC7I33t5Apfh6AtKvvlZhoLPtdPkggMb74WgKurSV-0ZQ4WRMdEt9eMnFKgRkvEa17jXoXV5k_2fzidSD1PJx1yc/s320/school3.jpg" width="320" /></a><span style="font-size: 13px;"><span style="font-family: "tahoma";">Each
time your child enters a new class, the pupils need to know why your
child is different and how they can best support and befriend your son
or daughter. You may choose to take the opportunity of talking to the class yourself. Personally, I always found that talking to the children
meant telling them what they need to know, rather than the full-on
description of PWS! I always likened it to a child who has diabetes
and, for their own safety, cannot eat sugary foods and must keep on a
safe diet. I would do this without my daughter being present. I would
also tell the students how important it was for my daughter NOT to be
given any of their spare lunch as this would upset her diet. Plus, I
would always make sure the teacher will keep school lunches out of
reach - somewhere safe like a locker, or, if that wasn't possible, then
the teacher took full responsibility for handing out lunches, including
my daughter's (this was to prevent her from eating all her lunch the
minute she got to school, and from eating or sneaking food from other
lunches).</span></span></div>
<h3 class="font_3">
<span class="color_28"><span style="font-family: "basic" , sans-serif;"><span style="font-size: 18px;">Positive Instructions</span></span></span></h3>
<div class="font_7">
<span style="font-size: 13px;"><span style="font-family: "tahoma";">Children
with PWS tend to have a rigid way of thinking and tend to work best to a
set routine and positive timetable. They can accept change if prepared
for it beforehand, but a sudden unexpected change may result in
non-cooperation - generally more so with an older child. It is sensible
preparation to warn beforehand if something is to be postponed or
cancelled and, if possible, what will take its place.</span></span></div>
<h3 class="font_3">
<span style="font-family: "basic" , sans-serif;"><span class="color_28"><span style="font-size: 18px;">Sociability</span></span></span></h3>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiM0Ye9CKMeHOtbuDqe8ZF8Y9iZROerYv-u3hcwHUBB-47snmu483WdkIOWNiqJwv4T18vGkxgHuwQ-e7I_cT913W6lOcWGbTVndftzWvIto2DzhSlFWfsPMyi5ccvvb6ui79YM3Gc2-a4/s1600/School.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" data-original-height="267" data-original-width="357" height="239" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiM0Ye9CKMeHOtbuDqe8ZF8Y9iZROerYv-u3hcwHUBB-47snmu483WdkIOWNiqJwv4T18vGkxgHuwQ-e7I_cT913W6lOcWGbTVndftzWvIto2DzhSlFWfsPMyi5ccvvb6ui79YM3Gc2-a4/s320/School.jpg" width="320" /></a></div>
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<span style="font-size: 13px;"><span style="font-family: "tahoma";">Generally
speaking, children with PWS are sociable and interactive with other
children, but tend to mix with younger children rather than their peers
whose natural physical ability will often leave the child with PWS
behind. Some children prefer their own company or adult company and will
seek frequently seek out a teacher's company.</span></span></div>
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<span style="font-size: 13px;"><span style="font-family: "tahoma";">With
an ordinary classroom setting, children with PWS may have difficulty in
settling and can become easily distracted. It is not "naughty"
behaviour but part of the syndrome. They may work better with their
'own' desk and chair rather than continually moved around.</span></span></div>
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<span style="font-family: "basic" , sans-serif;"><span class="color_28"><span style="font-size: 18px;">Simple behaviour modification techniques</span></span></span></h3>
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<span style="font-size: 13px;"><span style="font-family: "tahoma";">Things like "ignore-redirect-praise" work well; removal from a situation which
appears to be heating up and redirection to another task until the
person has calmed down. Basically with
the younger person, the behaviours tend to be comparable with any child
of his/her age. These incidents may occur around food, possessions, or anxiety. </span></span></div>
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<span style="font-size: 13px;"><span style="font-family: "tahoma";"></span></span></div>
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<span style="font-family: "basic" , sans-serif;"><span class="color_28"><span style="font-size: 18px;">Eating behaviours at school</span></span></span></h3>
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<span style="font-size: 13px;"><span style="font-family: "tahoma";">Because
of the deletion in chromosome 15 (which governs normal ability to feel
full), children with PWS are constantly on the lookout for food. They may 'take' or steal, swap something for food, or just be opportunistic and take food when the opportunity arises. </span></span></div>
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<span style="font-size: 13px;"><span style="font-family: "tahoma";">Practical intervention from teaching staff will mean that:</span></span></div>
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<span style="font-size: 13px;"><span style="font-family: "tahoma";">lunchtime
and playtime are supervised so that the child eats only what is
prepared for these times (otherwise everything is likely to be eaten at
once);</span></span></div>
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<span style="font-size: 13px;"><span style="font-family: "tahoma";">care
must be taken to see that other children are not passing on unwanted
food and that the youngster him/herself is not suggesting they might
finish others' lunches for them.</span></span></div>
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<span style="font-size: 13px;"><span style="font-family: "tahoma";">Food discarded in rubbish-bins in the classroom will need to be removed so that it does not provide temptation.</span></span></div>
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<span style="font-size: 13px;"><span style="font-family: "tahoma";">Lunchboxes
need to be placed in view of the teacher so that they also do not
provide temptation. They may need to be handed out at each break.</span></span></div>
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<span style="font-size: 13px;"><span style="font-family: "tahoma";">Any programme which includes food, or cooking, will need to be supervised.</span></span></div>
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<span style="font-size: 13px;"><span style="font-family: "tahoma";">It
is a good idea to have a notebook which goes home with the child,
noting any change in dietary intake during the day. Accidents do happen!</span></span></div>
</li>
</ul>
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<span style="font-size: 13px;"><span style="font-family: "tahoma";">Generally speaking...</span></span></div>
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<span style="font-size: 13px;"><span style="font-family: "tahoma";">Be aware of bullying</span></span><span style="font-size: 13px;"><span style="font-family: "tahoma";"></span></span></div>
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<span style="font-size: 13px;"><span style="font-family: "tahoma";">It doesn't pay to be sarcastic, or even use subtle humour. People with PWS do not respond well to such tactics.</span></span><span style="font-size: 13px;"><span style="font-family: "tahoma";"> </span></span><span style="font-size: 13px;"><span style="font-family: "tahoma";"> </span></span></div>
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<span style="font-size: 13px;"><span style="font-family: "tahoma";">It
doesn't pay to argue. Make the statement, allow the person one more
comment, warn that the discussion is over - and stick to it! You will
never win an argument.</span></span><span style="font-size: 13px;"><span style="font-family: "tahoma";"> </span></span></div>
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<span style="font-size: 13px;"><span style="font-family: "tahoma";">Don't ignore bad behaviour - try interventions to prevent it.</span></span></div>
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<span style="font-size: 13px;"><span style="font-family: "tahoma";">Don't use food as a reward or punishment. This can cause escalating behaviours.</span></span></div>
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<span style="font-size: 13px;"><span style="font-family: "tahoma";">Don't promise anything you cannot or will not do. They will not accept any reason for change.</span></span></div>
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<span style="font-size: 13px;"><span style="font-family: "tahoma";">Arguing often provokes further escalation in behaviours. Their concrete thinking doesn't lend itself to reasoning.</span></span></div>
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<span style="font-size: 13px;"><span style="font-family: "tahoma";">Showing a child what you expect of him/her gets better results than verbally explaining.</span></span></div>
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<span style="font-size: 13px;"><span style="font-family: "tahoma";">Keep your sense of humour!</span></span></div>
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<span style="font-size: 13px;"><span style="font-family: "tahoma";">If possible, ask for help and support from your local PWS Association or <a href="mailto:information@ipwso.org" target="_blank">contact us</a> for further help.</span></span></div>
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(<i>None of the children depicted has PWS)</i> </div>
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Tui Chizownhttp://www.blogger.com/profile/11362569853162067460noreply@blogger.com0tag:blogger.com,1999:blog-1343067279870496201.post-83640355041276156662018-05-30T10:45:00.002+12:002018-05-30T10:45:37.437+12:00Behave Yourself!!<div dir="ltr" style="text-align: left;" trbidi="on">
<div class="font_7" style="-webkit-text-stroke-width: 0px; background-attachment: scroll; background-clip: border-box; background-color: transparent; background-image: none; background-origin: padding-box; background-position-x: 0px; background-position-y: 0px; background-repeat: repeat; background-size: auto; border-bottom-color: rgb(0, 0, 0); border-bottom-style: none; border-bottom-width: 0px; border-image-outset: 0; border-image-repeat: stretch; border-image-slice: 100%; border-image-source: none; border-image-width: 1; border-left-color: rgb(0, 0, 0); border-left-style: none; border-left-width: 0px; border-right-color: rgb(0, 0, 0); border-right-style: none; border-right-width: 0px; border-top-color: rgb(0, 0, 0); border-top-style: none; border-top-width: 0px; color: black; font-family: Arial,"ms pゴシック","ms pgothic","돋움",dotum,helvetica,sans-serif; font-size-adjust: none; font-size: 18px; font-stretch: 100%; font-style: normal; font-variant: normal; font-weight: 400; letter-spacing: normal; line-height: normal; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; orphans: 2; outline-color: invert; outline-style: none; outline-width: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px; pointer-events: auto; text-align: left; text-decoration: none; text-indent: 0px; text-transform: none; vertical-align: baseline; white-space: normal; word-spacing: 0px;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiPiAVw4-Qm_RMv7HCIWDHE55-AXm7HBS-Hjxm-LFQdz1SLwcTk_KwBrOhzftF73XmpdmSY90WyxWe-mSyT-flnQSUDUnZXrJZDpql2tBw7jmvoUJaWbePVpkXXFHzsu5UENam6DvPUIIU/s1600/thZ3RESYL7.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" data-original-height="177" data-original-width="375" height="151" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiPiAVw4-Qm_RMv7HCIWDHE55-AXm7HBS-Hjxm-LFQdz1SLwcTk_KwBrOhzftF73XmpdmSY90WyxWe-mSyT-flnQSUDUnZXrJZDpql2tBw7jmvoUJaWbePVpkXXFHzsu5UENam6DvPUIIU/s320/thZ3RESYL7.jpg" width="320" /></a><span style="background-attachment: scroll; background-clip: border-box; background-color: transparent; background-image: none; background-origin: padding-box; background-position-x: 0px; background-position-y: 0px; background-repeat: repeat; background-size: auto; border-bottom-color: rgb(0, 0, 0); border-bottom-style: none; border-bottom-width: 0px; border-image-outset: 0; border-image-repeat: stretch; border-image-slice: 100%; border-image-source: none; border-image-width: 1; border-left-color: rgb(0, 0, 0); border-left-style: none; border-left-width: 0px; border-right-color: rgb(0, 0, 0); border-right-style: none; border-right-width: 0px; border-top-color: rgb(0, 0, 0); border-top-style: none; border-top-width: 0px; font-size: 18px; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; outline-color: invert; outline-style: none; outline-width: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px; vertical-align: baseline;"><span style="background-attachment: scroll; background-clip: border-box; background-color: transparent; background-image: none; background-origin: padding-box; background-position-x: 0px; background-position-y: 0px; background-repeat: repeat; background-size: auto; border-bottom-color: rgb(0, 0, 0); border-bottom-style: none; border-bottom-width: 0px; border-image-outset: 0; border-image-repeat: stretch; border-image-slice: 100%; border-image-source: none; border-image-width: 1; border-left-color: rgb(0, 0, 0); border-left-style: none; border-left-width: 0px; border-right-color: rgb(0, 0, 0); border-right-style: none; border-right-width: 0px; border-top-color: rgb(0, 0, 0); border-top-style: none; border-top-width: 0px; font-family: overlock; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; outline-color: invert; outline-style: none; outline-width: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px; vertical-align: baseline;">All behaviour can be seen as communication. In PWS, the questions "When do behaviours start?" and "How do I handle challenging behaviours?" are always asked. Communication will often break down - between the parent and child, the child and teacher, or friends, or other family members, the options are endless! So how do we try to avoid this breakdown? The main issue arises from heightened anxiety levels, firstly from the person with PWS, and also from the person trying to understand. We need to be able to look at anxiety and all its sub-forms, such as avoidance and non-compliance, denial, perseveration and muddledness, frustration, becoming argumentative or recognising a drop in communication levels, compulsive behaviours , all of these which can lead to a "blowout" or "meltdown" situation. Let's explore some of the issues:</span></span></div>
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<div class="font_7" style="-webkit-text-stroke-width: 0px; background-attachment: scroll; background-clip: border-box; background-color: transparent; background-image: none; background-origin: padding-box; background-position-x: 0px; background-position-y: 0px; background-repeat: repeat; background-size: auto; border-bottom-color: rgb(0, 0, 0); border-bottom-style: none; border-bottom-width: 0px; border-image-outset: 0; border-image-repeat: stretch; border-image-slice: 100%; border-image-source: none; border-image-width: 1; border-left-color: rgb(0, 0, 0); border-left-style: none; border-left-width: 0px; border-right-color: rgb(0, 0, 0); border-right-style: none; border-right-width: 0px; border-top-color: rgb(0, 0, 0); border-top-style: none; border-top-width: 0px; color: black; font-family: Arial,"ms pゴシック","ms pgothic","돋움",dotum,helvetica,sans-serif; font-size-adjust: none; font-size: 18px; font-stretch: 100%; font-style: normal; font-variant: normal; font-weight: 400; letter-spacing: normal; line-height: normal; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; orphans: 2; outline-color: invert; outline-style: none; outline-width: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px; pointer-events: auto; text-align: left; text-decoration: none; text-indent: 0px; text-transform: none; vertical-align: baseline; white-space: normal; word-spacing: 0px;">
<span style="background-attachment: scroll; background-clip: border-box; background-color: transparent; background-image: none; background-origin: padding-box; background-position-x: 0px; background-position-y: 0px; background-repeat: repeat; background-size: auto; border-bottom-color: rgb(0, 0, 0); border-bottom-style: none; border-bottom-width: 0px; border-image-outset: 0; border-image-repeat: stretch; border-image-slice: 100%; border-image-source: none; border-image-width: 1; border-left-color: rgb(0, 0, 0); border-left-style: none; border-left-width: 0px; border-right-color: rgb(0, 0, 0); border-right-style: none; border-right-width: 0px; border-top-color: rgb(0, 0, 0); border-top-style: none; border-top-width: 0px; font-size: 18px; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; outline-color: invert; outline-style: none; outline-width: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px; vertical-align: baseline;"><span style="background-attachment: scroll; background-clip: border-box; background-color: transparent; background-image: none; background-origin: padding-box; background-position-x: 0px; background-position-y: 0px; background-repeat: repeat; background-size: auto; border-bottom-color: rgb(0, 0, 0); border-bottom-style: none; border-bottom-width: 0px; border-image-outset: 0; border-image-repeat: stretch; border-image-slice: 100%; border-image-source: none; border-image-width: 1; border-left-color: rgb(0, 0, 0); border-left-style: none; border-left-width: 0px; border-right-color: rgb(0, 0, 0); border-right-style: none; border-right-width: 0px; border-top-color: rgb(0, 0, 0); border-top-style: none; border-top-width: 0px; font-family: overlock; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; outline-color: invert; outline-style: none; outline-width: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px; vertical-align: baseline;">If we try to look at behaviour as a form of communication - that the person is trying to tell us something that they might not have the verbal ability or comprehension to do so, then we can separate the behaviour from the person and look at what they are trying to say.</span></span></div>
<span style="-webkit-text-stroke-width: 0px; background-color: transparent; color: black; display: inline !important; float: none; font-family: Arial,Helvetica,sans-serif; font-size: 10px; font-style: normal; font-variant: normal; font-weight: 400; letter-spacing: normal; orphans: 2; pointer-events: none; text-align: left; text-decoration: none; text-indent: 0px; text-transform: none; white-space: normal; word-spacing: 0px; word-wrap: break-word;">
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<div class="font_7" style="-webkit-text-stroke-width: 0px; background-attachment: scroll; background-clip: border-box; background-color: transparent; background-image: none; background-origin: padding-box; background-position-x: 0px; background-position-y: 0px; background-repeat: repeat; background-size: auto; border-bottom-color: rgb(0, 0, 0); border-bottom-style: none; border-bottom-width: 0px; border-image-outset: 0; border-image-repeat: stretch; border-image-slice: 100%; border-image-source: none; border-image-width: 1; border-left-color: rgb(0, 0, 0); border-left-style: none; border-left-width: 0px; border-right-color: rgb(0, 0, 0); border-right-style: none; border-right-width: 0px; border-top-color: rgb(0, 0, 0); border-top-style: none; border-top-width: 0px; color: black; font-family: Arial,"ms pゴシック","ms pgothic","돋움",dotum,helvetica,sans-serif; font-size-adjust: none; font-size: 18px; font-stretch: 100%; font-style: normal; font-variant: normal; font-weight: 400; letter-spacing: normal; line-height: normal; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; orphans: 2; outline-color: invert; outline-style: none; outline-width: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px; pointer-events: auto; text-align: left; text-decoration: none; text-indent: 0px; text-transform: none; vertical-align: baseline; white-space: normal; word-spacing: 0px;">
<span style="background-attachment: scroll; background-clip: border-box; background-color: transparent; background-image: none; background-origin: padding-box; background-position-x: 0px; background-position-y: 0px; background-repeat: repeat; background-size: auto; border-bottom-color: rgb(0, 0, 0); border-bottom-style: none; border-bottom-width: 0px; border-image-outset: 0; border-image-repeat: stretch; border-image-slice: 100%; border-image-source: none; border-image-width: 1; border-left-color: rgb(0, 0, 0); border-left-style: none; border-left-width: 0px; border-right-color: rgb(0, 0, 0); border-right-style: none; border-right-width: 0px; border-top-color: rgb(0, 0, 0); border-top-style: none; border-top-width: 0px; font-size: 18px; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; outline-color: invert; outline-style: none; outline-width: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px; vertical-align: baseline;"><span style="background-attachment: scroll; background-clip: border-box; background-color: transparent; background-image: none; background-origin: padding-box; background-position-x: 0px; background-position-y: 0px; background-repeat: repeat; background-size: auto; border-bottom-color: rgb(0, 0, 0); border-bottom-style: none; border-bottom-width: 0px; border-image-outset: 0; border-image-repeat: stretch; border-image-slice: 100%; border-image-source: none; border-image-width: 1; border-left-color: rgb(0, 0, 0); border-left-style: none; border-left-width: 0px; border-right-color: rgb(0, 0, 0); border-right-style: none; border-right-width: 0px; border-top-color: rgb(0, 0, 0); border-top-style: none; border-top-width: 0px; font-family: overlock; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; outline-color: invert; outline-style: none; outline-width: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px; vertical-align: baseline;">All behaviour is a form of communication - it's how we perceive and interpret that behaviour that will lead to success or failure. It's a bit like learning another language.</span></span></div>
<span style="-webkit-text-stroke-width: 0px; background-color: transparent; color: black; display: inline !important; float: none; font-family: Arial,Helvetica,sans-serif; font-size: 10px; font-style: normal; font-variant: normal; font-weight: 400; letter-spacing: normal; orphans: 2; pointer-events: none; text-align: left; text-decoration: none; text-indent: 0px; text-transform: none; white-space: normal; word-spacing: 0px; word-wrap: break-word;">
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<div class="font_7" style="-webkit-text-stroke-width: 0px; background-attachment: scroll; background-clip: border-box; background-color: transparent; background-image: none; background-origin: padding-box; background-position-x: 0px; background-position-y: 0px; background-repeat: repeat; background-size: auto; border-bottom-color: rgb(0, 0, 0); border-bottom-style: none; border-bottom-width: 0px; border-image-outset: 0; border-image-repeat: stretch; border-image-slice: 100%; border-image-source: none; border-image-width: 1; border-left-color: rgb(0, 0, 0); border-left-style: none; border-left-width: 0px; border-right-color: rgb(0, 0, 0); border-right-style: none; border-right-width: 0px; border-top-color: rgb(0, 0, 0); border-top-style: none; border-top-width: 0px; color: black; font-family: Arial,"ms pゴシック","ms pgothic","돋움",dotum,helvetica,sans-serif; font-size-adjust: none; font-size: 18px; font-stretch: 100%; font-style: normal; font-variant: normal; font-weight: 400; letter-spacing: normal; line-height: normal; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; orphans: 2; outline-color: invert; outline-style: none; outline-width: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px; pointer-events: auto; text-align: left; text-decoration: none; text-indent: 0px; text-transform: none; vertical-align: baseline; white-space: normal; word-spacing: 0px;">
<span style="background-attachment: scroll; background-clip: border-box; background-color: transparent; background-image: none; background-origin: padding-box; background-position-x: 0px; background-position-y: 0px; background-repeat: repeat; background-size: auto; border-bottom-color: rgb(0, 0, 0); border-bottom-style: none; border-bottom-width: 0px; border-image-outset: 0; border-image-repeat: stretch; border-image-slice: 100%; border-image-source: none; border-image-width: 1; border-left-color: rgb(0, 0, 0); border-left-style: none; border-left-width: 0px; border-right-color: rgb(0, 0, 0); border-right-style: none; border-right-width: 0px; border-top-color: rgb(0, 0, 0); border-top-style: none; border-top-width: 0px; font-size: 18px; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; outline-color: invert; outline-style: none; outline-width: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px; vertical-align: baseline;"><span style="background-attachment: scroll; background-clip: border-box; background-color: transparent; background-image: none; background-origin: padding-box; background-position-x: 0px; background-position-y: 0px; background-repeat: repeat; background-size: auto; border-bottom-color: rgb(0, 0, 0); border-bottom-style: none; border-bottom-width: 0px; border-image-outset: 0; border-image-repeat: stretch; border-image-slice: 100%; border-image-source: none; border-image-width: 1; border-left-color: rgb(0, 0, 0); border-left-style: none; border-left-width: 0px; border-right-color: rgb(0, 0, 0); border-right-style: none; border-right-width: 0px; border-top-color: rgb(0, 0, 0); border-top-style: none; border-top-width: 0px; font-family: overlock; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; outline-color: invert; outline-style: none; outline-width: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px; vertical-align: baseline;">We all perceive differently, therefore we communicate differently.</span></span></div>
<span style="-webkit-text-stroke-width: 0px; background-color: transparent; color: black; display: inline !important; float: none; font-family: Arial,Helvetica,sans-serif; font-size: 10px; font-style: normal; font-variant: normal; font-weight: 400; letter-spacing: normal; orphans: 2; pointer-events: none; text-align: left; text-decoration: none; text-indent: 0px; text-transform: none; white-space: normal; word-spacing: 0px; word-wrap: break-word;">
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<div class="font_7" style="-webkit-text-stroke-width: 0px; background-attachment: scroll; background-clip: border-box; background-color: transparent; background-image: none; background-origin: padding-box; background-position-x: 0px; background-position-y: 0px; background-repeat: repeat; background-size: auto; border-bottom-color: rgb(0, 0, 0); border-bottom-style: none; border-bottom-width: 0px; border-image-outset: 0; border-image-repeat: stretch; border-image-slice: 100%; border-image-source: none; border-image-width: 1; border-left-color: rgb(0, 0, 0); border-left-style: none; border-left-width: 0px; border-right-color: rgb(0, 0, 0); border-right-style: none; border-right-width: 0px; border-top-color: rgb(0, 0, 0); border-top-style: none; border-top-width: 0px; color: black; font-family: Arial,"ms pゴシック","ms pgothic","돋움",dotum,helvetica,sans-serif; font-size-adjust: none; font-size: 18px; font-stretch: 100%; font-style: normal; font-variant: normal; font-weight: 400; letter-spacing: normal; line-height: normal; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; orphans: 2; outline-color: invert; outline-style: none; outline-width: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px; pointer-events: auto; text-align: left; text-decoration: none; text-indent: 0px; text-transform: none; vertical-align: baseline; white-space: normal; word-spacing: 0px;">
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<h2 class="font_2" style="-webkit-text-stroke-width: 0px; background-attachment: scroll; background-clip: border-box; background-color: transparent; background-image: none; background-origin: padding-box; background-position-x: 0px; background-position-y: 0px; background-repeat: repeat; background-size: auto; border-bottom-color: rgb(237, 149, 36); border-bottom-style: none; border-bottom-width: 0px; border-image-outset: 0; border-image-repeat: stretch; border-image-slice: 100%; border-image-source: none; border-image-width: 1; border-left-color: rgb(237, 149, 36); border-left-style: none; border-left-width: 0px; border-right-color: rgb(237, 149, 36); border-right-style: none; border-right-width: 0px; border-top-color: rgb(237, 149, 36); border-top-style: none; border-top-width: 0px; color: #ed9524; font-family: Verdana,geneva,sans-serif; font-size-adjust: none; font-size: 18px; font-stretch: 100%; font-style: normal; font-variant: normal; font-weight: 400; letter-spacing: normal; line-height: normal; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; orphans: 2; outline-color: invert; outline-style: none; outline-width: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px; pointer-events: auto; text-align: left; text-decoration: none; text-indent: 0px; text-transform: none; vertical-align: baseline; white-space: normal; word-spacing: 0px;">
<span style="background-attachment: scroll; background-clip: border-box; background-color: transparent; background-image: none; background-origin: padding-box; background-position-x: 0px; background-position-y: 0px; background-repeat: repeat; background-size: auto; border-bottom-color: rgb(237, 149, 36); border-bottom-style: none; border-bottom-width: 0px; border-image-outset: 0; border-image-repeat: stretch; border-image-slice: 100%; border-image-source: none; border-image-width: 1; border-left-color: rgb(237, 149, 36); border-left-style: none; border-left-width: 0px; border-right-color: rgb(237, 149, 36); border-right-style: none; border-right-width: 0px; border-top-color: rgb(237, 149, 36); border-top-style: none; border-top-width: 0px; font-weight: 700; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; outline-color: invert; outline-style: none; outline-width: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px; vertical-align: baseline;"><span style="background-attachment: scroll; background-clip: border-box; background-color: transparent; background-image: none; background-origin: padding-box; background-position-x: 0px; background-position-y: 0px; background-repeat: repeat; background-size: auto; border-bottom-color: rgb(237, 149, 36); border-bottom-style: none; border-bottom-width: 0px; border-image-outset: 0; border-image-repeat: stretch; border-image-slice: 100%; border-image-source: none; border-image-width: 1; border-left-color: rgb(237, 149, 36); border-left-style: none; border-left-width: 0px; border-right-color: rgb(237, 149, 36); border-right-style: none; border-right-width: 0px; border-top-color: rgb(237, 149, 36); border-top-style: none; border-top-width: 0px; font-size: 18px; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; outline-color: invert; outline-style: none; outline-width: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px; vertical-align: baseline;"><span style="background-attachment: scroll; background-clip: border-box; background-color: transparent; background-image: none; background-origin: padding-box; background-position-x: 0px; background-position-y: 0px; background-repeat: repeat; background-size: auto; border-bottom-color: rgb(237, 149, 36); border-bottom-style: none; border-bottom-width: 0px; border-image-outset: 0; border-image-repeat: stretch; border-image-slice: 100%; border-image-source: none; border-image-width: 1; border-left-color: rgb(237, 149, 36); border-left-style: none; border-left-width: 0px; border-right-color: rgb(237, 149, 36); border-right-style: none; border-right-width: 0px; border-top-color: rgb(237, 149, 36); border-top-style: none; border-top-width: 0px; font-family: raleway,sans-serif; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; outline-color: invert; outline-style: none; outline-width: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px; vertical-align: baseline;">When do ‘behaviours' start?</span></span></span></h2>
<span style="-webkit-text-stroke-width: 0px; background-color: transparent; color: black; display: inline !important; float: none; font-family: Arial,Helvetica,sans-serif; font-size: 10px; font-style: normal; font-variant: normal; font-weight: 400; letter-spacing: normal; orphans: 2; pointer-events: none; text-align: left; text-decoration: none; text-indent: 0px; text-transform: none; white-space: normal; word-spacing: 0px; word-wrap: break-word;">
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<div class="font_7" style="-webkit-text-stroke-width: 0px; background-attachment: scroll; background-clip: border-box; background-color: transparent; background-image: none; background-origin: padding-box; background-position-x: 0px; background-position-y: 0px; background-repeat: repeat; background-size: auto; border-bottom-color: rgb(0, 0, 0); border-bottom-style: none; border-bottom-width: 0px; border-image-outset: 0; border-image-repeat: stretch; border-image-slice: 100%; border-image-source: none; border-image-width: 1; border-left-color: rgb(0, 0, 0); border-left-style: none; border-left-width: 0px; border-right-color: rgb(0, 0, 0); border-right-style: none; border-right-width: 0px; border-top-color: rgb(0, 0, 0); border-top-style: none; border-top-width: 0px; color: black; font-family: Arial,"ms pゴシック","ms pgothic","돋움",dotum,helvetica,sans-serif; font-size-adjust: none; font-size: 18px; font-stretch: 100%; font-style: normal; font-variant: normal; font-weight: 400; letter-spacing: normal; line-height: normal; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; orphans: 2; outline-color: invert; outline-style: none; outline-width: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px; pointer-events: auto; text-align: left; text-decoration: none; text-indent: 0px; text-transform: none; vertical-align: baseline; white-space: normal; word-spacing: 0px;">
<span style="background-attachment: scroll; background-clip: border-box; background-color: transparent; background-image: none; background-origin: padding-box; background-position-x: 0px; background-position-y: 0px; background-repeat: repeat; background-size: auto; border-bottom-color: rgb(0, 0, 0); border-bottom-style: none; border-bottom-width: 0px; border-image-outset: 0; border-image-repeat: stretch; border-image-slice: 100%; border-image-source: none; border-image-width: 1; border-left-color: rgb(0, 0, 0); border-left-style: none; border-left-width: 0px; border-right-color: rgb(0, 0, 0); border-right-style: none; border-right-width: 0px; border-top-color: rgb(0, 0, 0); border-top-style: none; border-top-width: 0px; font-size: 18px; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; outline-color: invert; outline-style: none; outline-width: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px; vertical-align: baseline;"><span style="background-attachment: scroll; background-clip: border-box; background-color: transparent; background-image: none; background-origin: padding-box; background-position-x: 0px; background-position-y: 0px; background-repeat: repeat; background-size: auto; border-bottom-color: rgb(0, 0, 0); border-bottom-style: none; border-bottom-width: 0px; border-image-outset: 0; border-image-repeat: stretch; border-image-slice: 100%; border-image-source: none; border-image-width: 1; border-left-color: rgb(0, 0, 0); border-left-style: none; border-left-width: 0px; border-right-color: rgb(0, 0, 0); border-right-style: none; border-right-width: 0px; border-top-color: rgb(0, 0, 0); border-top-style: none; border-top-width: 0px; font-family: overlock; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; outline-color: invert; outline-style: none; outline-width: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px; vertical-align: baseline;">So-called challenging behaviours are not usually around during the first few years of life. Teenage and young adult years are when we generally see the more challenging behaviours. As the person ages into their 30s and older, they are generally less challenging, but can have more medical challenges.</span></span></div>
<span style="-webkit-text-stroke-width: 0px; background-color: transparent; color: black; display: inline !important; float: none; font-family: Arial,Helvetica,sans-serif; font-size: 10px; font-style: normal; font-variant: normal; font-weight: 400; letter-spacing: normal; orphans: 2; pointer-events: none; text-align: left; text-decoration: none; text-indent: 0px; text-transform: none; white-space: normal; word-spacing: 0px; word-wrap: break-word;">
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<div class="font_7" style="-webkit-text-stroke-width: 0px; background-attachment: scroll; background-clip: border-box; background-color: transparent; background-image: none; background-origin: padding-box; background-position-x: 0px; background-position-y: 0px; background-repeat: repeat; background-size: auto; border-bottom-color: rgb(0, 0, 0); border-bottom-style: none; border-bottom-width: 0px; border-image-outset: 0; border-image-repeat: stretch; border-image-slice: 100%; border-image-source: none; border-image-width: 1; border-left-color: rgb(0, 0, 0); border-left-style: none; border-left-width: 0px; border-right-color: rgb(0, 0, 0); border-right-style: none; border-right-width: 0px; border-top-color: rgb(0, 0, 0); border-top-style: none; border-top-width: 0px; color: black; font-family: Arial,"ms pゴシック","ms pgothic","돋움",dotum,helvetica,sans-serif; font-size-adjust: none; font-size: 18px; font-stretch: 100%; font-style: normal; font-variant: normal; font-weight: 400; letter-spacing: normal; line-height: normal; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; orphans: 2; outline-color: invert; outline-style: none; outline-width: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px; pointer-events: auto; text-align: left; text-decoration: none; text-indent: 0px; text-transform: none; vertical-align: baseline; white-space: normal; word-spacing: 0px;">
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<h2 class="font_2" style="-webkit-text-stroke-width: 0px; background-attachment: scroll; background-clip: border-box; background-color: transparent; background-image: none; background-origin: padding-box; background-position-x: 0px; background-position-y: 0px; background-repeat: repeat; background-size: auto; border-bottom-color: rgb(237, 149, 36); border-bottom-style: none; border-bottom-width: 0px; border-image-outset: 0; border-image-repeat: stretch; border-image-slice: 100%; border-image-source: none; border-image-width: 1; border-left-color: rgb(237, 149, 36); border-left-style: none; border-left-width: 0px; border-right-color: rgb(237, 149, 36); border-right-style: none; border-right-width: 0px; border-top-color: rgb(237, 149, 36); border-top-style: none; border-top-width: 0px; color: #ed9524; font-family: Verdana,geneva,sans-serif; font-size-adjust: none; font-size: 18px; font-stretch: 100%; font-style: normal; font-variant: normal; font-weight: 400; letter-spacing: normal; line-height: normal; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; orphans: 2; outline-color: invert; outline-style: none; outline-width: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px; pointer-events: auto; text-align: left; text-decoration: none; text-indent: 0px; text-transform: none; vertical-align: baseline; white-space: normal; word-spacing: 0px;">
<span style="background-attachment: scroll; background-clip: border-box; background-color: transparent; background-image: none; background-origin: padding-box; background-position-x: 0px; background-position-y: 0px; background-repeat: repeat; background-size: auto; border-bottom-color: rgb(237, 149, 36); border-bottom-style: none; border-bottom-width: 0px; border-image-outset: 0; border-image-repeat: stretch; border-image-slice: 100%; border-image-source: none; border-image-width: 1; border-left-color: rgb(237, 149, 36); border-left-style: none; border-left-width: 0px; border-right-color: rgb(237, 149, 36); border-right-style: none; border-right-width: 0px; border-top-color: rgb(237, 149, 36); border-top-style: none; border-top-width: 0px; font-weight: 700; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; outline-color: invert; outline-style: none; outline-width: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px; vertical-align: baseline;"><span style="background-attachment: scroll; background-clip: border-box; background-color: transparent; background-image: none; background-origin: padding-box; background-position-x: 0px; background-position-y: 0px; background-repeat: repeat; background-size: auto; border-bottom-color: rgb(237, 149, 36); border-bottom-style: none; border-bottom-width: 0px; border-image-outset: 0; border-image-repeat: stretch; border-image-slice: 100%; border-image-source: none; border-image-width: 1; border-left-color: rgb(237, 149, 36); border-left-style: none; border-left-width: 0px; border-right-color: rgb(237, 149, 36); border-right-style: none; border-right-width: 0px; border-top-color: rgb(237, 149, 36); border-top-style: none; border-top-width: 0px; font-size: 18px; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; outline-color: invert; outline-style: none; outline-width: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px; vertical-align: baseline;"><span style="background-attachment: scroll; background-clip: border-box; background-color: transparent; background-image: none; background-origin: padding-box; background-position-x: 0px; background-position-y: 0px; background-repeat: repeat; background-size: auto; border-bottom-color: rgb(237, 149, 36); border-bottom-style: none; border-bottom-width: 0px; border-image-outset: 0; border-image-repeat: stretch; border-image-slice: 100%; border-image-source: none; border-image-width: 1; border-left-color: rgb(237, 149, 36); border-left-style: none; border-left-width: 0px; border-right-color: rgb(237, 149, 36); border-right-style: none; border-right-width: 0px; border-top-color: rgb(237, 149, 36); border-top-style: none; border-top-width: 0px; font-family: raleway,sans-serif; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; outline-color: invert; outline-style: none; outline-width: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px; vertical-align: baseline;">Why do we call behaviour "challenging"?</span></span></span></h2>
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<div class="font_7" style="-webkit-text-stroke-width: 0px; background-attachment: scroll; background-clip: border-box; background-color: transparent; background-image: none; background-origin: padding-box; background-position-x: 0px; background-position-y: 0px; background-repeat: repeat; background-size: auto; border-bottom-color: rgb(0, 0, 0); border-bottom-style: none; border-bottom-width: 0px; border-image-outset: 0; border-image-repeat: stretch; border-image-slice: 100%; border-image-source: none; border-image-width: 1; border-left-color: rgb(0, 0, 0); border-left-style: none; border-left-width: 0px; border-right-color: rgb(0, 0, 0); border-right-style: none; border-right-width: 0px; border-top-color: rgb(0, 0, 0); border-top-style: none; border-top-width: 0px; color: black; font-family: Arial,"ms pゴシック","ms pgothic","돋움",dotum,helvetica,sans-serif; font-size-adjust: none; font-size: 18px; font-stretch: 100%; font-style: normal; font-variant: normal; font-weight: 400; letter-spacing: normal; line-height: normal; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; orphans: 2; outline-color: invert; outline-style: none; outline-width: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px; pointer-events: auto; text-align: left; text-decoration: none; text-indent: 0px; text-transform: none; vertical-align: baseline; white-space: normal; word-spacing: 0px;">
<span style="background-attachment: scroll; background-clip: border-box; background-color: transparent; background-image: none; background-origin: padding-box; background-position-x: 0px; background-position-y: 0px; background-repeat: repeat; background-size: auto; border-bottom-color: rgb(0, 0, 0); border-bottom-style: none; border-bottom-width: 0px; border-image-outset: 0; border-image-repeat: stretch; border-image-slice: 100%; border-image-source: none; border-image-width: 1; border-left-color: rgb(0, 0, 0); border-left-style: none; border-left-width: 0px; border-right-color: rgb(0, 0, 0); border-right-style: none; border-right-width: 0px; border-top-color: rgb(0, 0, 0); border-top-style: none; border-top-width: 0px; font-size: 18px; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; outline-color: invert; outline-style: none; outline-width: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px; vertical-align: baseline;"><span style="background-attachment: scroll; background-clip: border-box; background-color: transparent; background-image: none; background-origin: padding-box; background-position-x: 0px; background-position-y: 0px; background-repeat: repeat; background-size: auto; border-bottom-color: rgb(0, 0, 0); border-bottom-style: none; border-bottom-width: 0px; border-image-outset: 0; border-image-repeat: stretch; border-image-slice: 100%; border-image-source: none; border-image-width: 1; border-left-color: rgb(0, 0, 0); border-left-style: none; border-left-width: 0px; border-right-color: rgb(0, 0, 0); border-right-style: none; border-right-width: 0px; border-top-color: rgb(0, 0, 0); border-top-style: none; border-top-width: 0px; font-family: overlock; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; outline-color: invert; outline-style: none; outline-width: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px; vertical-align: baseline;">I think it's because we (as parents, or caregivers, siblings, grandparents - anyone, in fact, who is involved with the care of a person with PWS, no matter what the age) find these behaviours as out of the ordinary - they're not ‘normal', they can be embarrassing, we don't understand them, they can be scary and even dangerous and can quickly escalate to a total outburst and meltdown before you can turn around.</span></span> </div>
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<div class="font_7" style="-webkit-text-stroke-width: 0px; background-attachment: scroll; background-clip: border-box; background-color: transparent; background-image: none; background-origin: padding-box; background-position-x: 0px; background-position-y: 0px; background-repeat: repeat; background-size: auto; border-bottom-color: rgb(0, 0, 0); border-bottom-style: none; border-bottom-width: 0px; border-image-outset: 0; border-image-repeat: stretch; border-image-slice: 100%; border-image-source: none; border-image-width: 1; border-left-color: rgb(0, 0, 0); border-left-style: none; border-left-width: 0px; border-right-color: rgb(0, 0, 0); border-right-style: none; border-right-width: 0px; border-top-color: rgb(0, 0, 0); border-top-style: none; border-top-width: 0px; color: black; font-family: Arial,"ms pゴシック","ms pgothic","돋움",dotum,helvetica,sans-serif; font-size-adjust: none; font-size: 18px; font-stretch: 100%; font-style: normal; font-variant: normal; font-weight: 400; letter-spacing: normal; line-height: normal; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; orphans: 2; outline-color: invert; outline-style: none; outline-width: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px; pointer-events: auto; text-align: left; text-decoration: none; text-indent: 0px; text-transform: none; vertical-align: baseline; white-space: normal; word-spacing: 0px;">
<span style="background-attachment: scroll; background-clip: border-box; background-color: transparent; background-image: none; background-origin: padding-box; background-position-x: 0px; background-position-y: 0px; background-repeat: repeat; background-size: auto; border-bottom-color: rgb(0, 0, 0); border-bottom-style: none; border-bottom-width: 0px; border-image-outset: 0; border-image-repeat: stretch; border-image-slice: 100%; border-image-source: none; border-image-width: 1; border-left-color: rgb(0, 0, 0); border-left-style: none; border-left-width: 0px; border-right-color: rgb(0, 0, 0); border-right-style: none; border-right-width: 0px; border-top-color: rgb(0, 0, 0); border-top-style: none; border-top-width: 0px; font-size: 18px; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; outline-color: invert; outline-style: none; outline-width: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px; vertical-align: baseline;"><span style="background-attachment: scroll; background-clip: border-box; background-color: transparent; background-image: none; background-origin: padding-box; background-position-x: 0px; background-position-y: 0px; background-repeat: repeat; background-size: auto; border-bottom-color: rgb(0, 0, 0); border-bottom-style: none; border-bottom-width: 0px; border-image-outset: 0; border-image-repeat: stretch; border-image-slice: 100%; border-image-source: none; border-image-width: 1; border-left-color: rgb(0, 0, 0); border-left-style: none; border-left-width: 0px; border-right-color: rgb(0, 0, 0); border-right-style: none; border-right-width: 0px; border-top-color: rgb(0, 0, 0); border-top-style: none; border-top-width: 0px; font-family: overlock; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; outline-color: invert; outline-style: none; outline-width: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px; vertical-align: baseline;">Behaviours can quickly escalate from nothing out-of-the-ordinary to verbal outbursts and abuse, physical abuse, crying jags or hissy fits, violence, self-mutilation and trashing.</span></span></div>
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<div class="font_7" style="-webkit-text-stroke-width: 0px; background-attachment: scroll; background-clip: border-box; background-color: transparent; background-image: none; background-origin: padding-box; background-position-x: 0px; background-position-y: 0px; background-repeat: repeat; background-size: auto; border-bottom-color: rgb(0, 0, 0); border-bottom-style: none; border-bottom-width: 0px; border-image-outset: 0; border-image-repeat: stretch; border-image-slice: 100%; border-image-source: none; border-image-width: 1; border-left-color: rgb(0, 0, 0); border-left-style: none; border-left-width: 0px; border-right-color: rgb(0, 0, 0); border-right-style: none; border-right-width: 0px; border-top-color: rgb(0, 0, 0); border-top-style: none; border-top-width: 0px; color: black; font-family: Arial,"ms pゴシック","ms pgothic","돋움",dotum,helvetica,sans-serif; font-size-adjust: none; font-size: 18px; font-stretch: 100%; font-style: normal; font-variant: normal; font-weight: 400; letter-spacing: normal; line-height: normal; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; orphans: 2; outline-color: invert; outline-style: none; outline-width: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px; pointer-events: auto; text-align: left; text-decoration: none; text-indent: 0px; text-transform: none; vertical-align: baseline; white-space: normal; word-spacing: 0px;">
<span style="background-attachment: scroll; background-clip: border-box; background-color: transparent; background-image: none; background-origin: padding-box; background-position-x: 0px; background-position-y: 0px; background-repeat: repeat; background-size: auto; border-bottom-color: rgb(0, 0, 0); border-bottom-style: none; border-bottom-width: 0px; border-image-outset: 0; border-image-repeat: stretch; border-image-slice: 100%; border-image-source: none; border-image-width: 1; border-left-color: rgb(0, 0, 0); border-left-style: none; border-left-width: 0px; border-right-color: rgb(0, 0, 0); border-right-style: none; border-right-width: 0px; border-top-color: rgb(0, 0, 0); border-top-style: none; border-top-width: 0px; font-size: 18px; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; outline-color: invert; outline-style: none; outline-width: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px; vertical-align: baseline;"><span style="background-attachment: scroll; background-clip: border-box; background-color: transparent; background-image: none; background-origin: padding-box; background-position-x: 0px; background-position-y: 0px; background-repeat: repeat; background-size: auto; border-bottom-color: rgb(0, 0, 0); border-bottom-style: none; border-bottom-width: 0px; border-image-outset: 0; border-image-repeat: stretch; border-image-slice: 100%; border-image-source: none; border-image-width: 1; border-left-color: rgb(0, 0, 0); border-left-style: none; border-left-width: 0px; border-right-color: rgb(0, 0, 0); border-right-style: none; border-right-width: 0px; border-top-color: rgb(0, 0, 0); border-top-style: none; border-top-width: 0px; font-family: overlock; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; outline-color: invert; outline-style: none; outline-width: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px; vertical-align: baseline;">It can be very scary.</span></span> </div>
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<div class="font_7" style="-webkit-text-stroke-width: 0px; background-attachment: scroll; background-clip: border-box; background-color: transparent; background-image: none; background-origin: padding-box; background-position-x: 0px; background-position-y: 0px; background-repeat: repeat; background-size: auto; border-bottom-color: rgb(0, 0, 0); border-bottom-style: none; border-bottom-width: 0px; border-image-outset: 0; border-image-repeat: stretch; border-image-slice: 100%; border-image-source: none; border-image-width: 1; border-left-color: rgb(0, 0, 0); border-left-style: none; border-left-width: 0px; border-right-color: rgb(0, 0, 0); border-right-style: none; border-right-width: 0px; border-top-color: rgb(0, 0, 0); border-top-style: none; border-top-width: 0px; color: black; font-family: Arial,"ms pゴシック","ms pgothic","돋움",dotum,helvetica,sans-serif; font-size-adjust: none; font-size: 18px; font-stretch: 100%; font-style: normal; font-variant: normal; font-weight: 400; letter-spacing: normal; line-height: normal; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; orphans: 2; outline-color: invert; outline-style: none; outline-width: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px; pointer-events: auto; text-align: left; text-decoration: none; text-indent: 0px; text-transform: none; vertical-align: baseline; white-space: normal; word-spacing: 0px;">
<span style="background-attachment: scroll; background-clip: border-box; background-color: transparent; background-image: none; background-origin: padding-box; background-position-x: 0px; background-position-y: 0px; background-repeat: repeat; background-size: auto; border-bottom-color: rgb(0, 0, 0); border-bottom-style: none; border-bottom-width: 0px; border-image-outset: 0; border-image-repeat: stretch; border-image-slice: 100%; border-image-source: none; border-image-width: 1; border-left-color: rgb(0, 0, 0); border-left-style: none; border-left-width: 0px; border-right-color: rgb(0, 0, 0); border-right-style: none; border-right-width: 0px; border-top-color: rgb(0, 0, 0); border-top-style: none; border-top-width: 0px; font-size: 18px; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; outline-color: invert; outline-style: none; outline-width: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px; vertical-align: baseline;"><span style="background-attachment: scroll; background-clip: border-box; background-color: transparent; background-image: none; background-origin: padding-box; background-position-x: 0px; background-position-y: 0px; background-repeat: repeat; background-size: auto; border-bottom-color: rgb(0, 0, 0); border-bottom-style: none; border-bottom-width: 0px; border-image-outset: 0; border-image-repeat: stretch; border-image-slice: 100%; border-image-source: none; border-image-width: 1; border-left-color: rgb(0, 0, 0); border-left-style: none; border-left-width: 0px; border-right-color: rgb(0, 0, 0); border-right-style: none; border-right-width: 0px; border-top-color: rgb(0, 0, 0); border-top-style: none; border-top-width: 0px; font-family: overlock; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; outline-color: invert; outline-style: none; outline-width: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px; vertical-align: baseline;">There is a goal for success - it's simple: we need to gain the trust, respect, and bonding of the person in order to reach success. (in fact, that's true for any relationship!)</span></span></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhT0kSL6UR324uR9-awFN6B_y_95TfZZYYxsQ0O3RnfGnRVD8RlbmRiEjB-vplVdlv41_YbpJjJID0SiEpRq6TWbZ_GgEKjZXTyuTtstKIac1EvB9rZPYZghQP5SHxdMNbBs-Hlls9msoQ/s1600/thWCCA0JXF.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" data-original-height="231" data-original-width="305" height="151" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhT0kSL6UR324uR9-awFN6B_y_95TfZZYYxsQ0O3RnfGnRVD8RlbmRiEjB-vplVdlv41_YbpJjJID0SiEpRq6TWbZ_GgEKjZXTyuTtstKIac1EvB9rZPYZghQP5SHxdMNbBs-Hlls9msoQ/s200/thWCCA0JXF.jpg" width="200" /></a></div>
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<div class="font_7" style="-webkit-text-stroke-width: 0px; background-attachment: scroll; background-clip: border-box; background-color: transparent; background-image: none; background-origin: padding-box; background-position-x: 0px; background-position-y: 0px; background-repeat: repeat; background-size: auto; border-bottom-color: rgb(0, 0, 0); border-bottom-style: none; border-bottom-width: 0px; border-image-outset: 0; border-image-repeat: stretch; border-image-slice: 100%; border-image-source: none; border-image-width: 1; border-left-color: rgb(0, 0, 0); border-left-style: none; border-left-width: 0px; border-right-color: rgb(0, 0, 0); border-right-style: none; border-right-width: 0px; border-top-color: rgb(0, 0, 0); border-top-style: none; border-top-width: 0px; color: black; font-family: Arial,"ms pゴシック","ms pgothic","돋움",dotum,helvetica,sans-serif; font-size-adjust: none; font-size: 18px; font-stretch: 100%; font-style: normal; font-variant: normal; font-weight: 400; letter-spacing: normal; line-height: normal; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; orphans: 2; outline-color: invert; outline-style: none; outline-width: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px; pointer-events: auto; text-align: left; text-decoration: none; text-indent: 0px; text-transform: none; vertical-align: baseline; white-space: normal; word-spacing: 0px;">
<span style="background-attachment: scroll; background-clip: border-box; background-color: transparent; background-image: none; background-origin: padding-box; background-position-x: 0px; background-position-y: 0px; background-repeat: repeat; background-size: auto; border-bottom-color: rgb(0, 0, 0); border-bottom-style: none; border-bottom-width: 0px; border-image-outset: 0; border-image-repeat: stretch; border-image-slice: 100%; border-image-source: none; border-image-width: 1; border-left-color: rgb(0, 0, 0); border-left-style: none; border-left-width: 0px; border-right-color: rgb(0, 0, 0); border-right-style: none; border-right-width: 0px; border-top-color: rgb(0, 0, 0); border-top-style: none; border-top-width: 0px; font-size: 18px; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; outline-color: invert; outline-style: none; outline-width: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px; vertical-align: baseline;"><span style="background-attachment: scroll; background-clip: border-box; background-color: transparent; background-image: none; background-origin: padding-box; background-position-x: 0px; background-position-y: 0px; background-repeat: repeat; background-size: auto; border-bottom-color: rgb(0, 0, 0); border-bottom-style: none; border-bottom-width: 0px; border-image-outset: 0; border-image-repeat: stretch; border-image-slice: 100%; border-image-source: none; border-image-width: 1; border-left-color: rgb(0, 0, 0); border-left-style: none; border-left-width: 0px; border-right-color: rgb(0, 0, 0); border-right-style: none; border-right-width: 0px; border-top-color: rgb(0, 0, 0); border-top-style: none; border-top-width: 0px; font-family: overlock; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; outline-color: invert; outline-style: none; outline-width: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px; vertical-align: baseline;">"Challenging communication" has been described as ‘the emergence of disruptive or destructive behaviours is often the person's way of communicating with an incomprehensible and non-responsive world' (Donellon, Mirenda, Mesaros & Fassbender, p.18.1985)</span></span></div>
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<div class="font_7" style="-webkit-text-stroke-width: 0px; background-attachment: scroll; background-clip: border-box; background-color: transparent; background-image: none; background-origin: padding-box; background-position-x: 0px; background-position-y: 0px; background-repeat: repeat; background-size: auto; border-bottom-color: rgb(0, 0, 0); border-bottom-style: none; border-bottom-width: 0px; border-image-outset: 0; border-image-repeat: stretch; border-image-slice: 100%; border-image-source: none; border-image-width: 1; border-left-color: rgb(0, 0, 0); border-left-style: none; border-left-width: 0px; border-right-color: rgb(0, 0, 0); border-right-style: none; border-right-width: 0px; border-top-color: rgb(0, 0, 0); border-top-style: none; border-top-width: 0px; color: black; font-family: Arial,"ms pゴシック","ms pgothic","돋움",dotum,helvetica,sans-serif; font-size-adjust: none; font-size: 18px; font-stretch: 100%; font-style: normal; font-variant: normal; font-weight: 400; letter-spacing: normal; line-height: normal; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; orphans: 2; outline-color: invert; outline-style: none; outline-width: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px; pointer-events: auto; text-align: left; text-decoration: none; text-indent: 0px; text-transform: none; vertical-align: baseline; white-space: normal; word-spacing: 0px;">
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<div class="font_7" style="-webkit-text-stroke-width: 0px; background-attachment: scroll; background-clip: border-box; background-color: transparent; background-image: none; background-origin: padding-box; background-position-x: 0px; background-position-y: 0px; background-repeat: repeat; background-size: auto; border-bottom-color: rgb(0, 0, 0); border-bottom-style: none; border-bottom-width: 0px; border-image-outset: 0; border-image-repeat: stretch; border-image-slice: 100%; border-image-source: none; border-image-width: 1; border-left-color: rgb(0, 0, 0); border-left-style: none; border-left-width: 0px; border-right-color: rgb(0, 0, 0); border-right-style: none; border-right-width: 0px; border-top-color: rgb(0, 0, 0); border-top-style: none; border-top-width: 0px; color: black; font-family: Arial,"ms pゴシック","ms pgothic","돋움",dotum,helvetica,sans-serif; font-size-adjust: none; font-size: 18px; font-stretch: 100%; font-style: normal; font-variant: normal; font-weight: 400; letter-spacing: normal; line-height: normal; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; orphans: 2; outline-color: invert; outline-style: none; outline-width: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px; pointer-events: auto; text-align: left; text-decoration: none; text-indent: 0px; text-transform: none; vertical-align: baseline; white-space: normal; word-spacing: 0px;">
<span style="background-attachment: scroll; background-clip: border-box; background-color: transparent; background-image: none; background-origin: padding-box; background-position-x: 0px; background-position-y: 0px; background-repeat: repeat; background-size: auto; border-bottom-color: rgb(0, 0, 0); border-bottom-style: none; border-bottom-width: 0px; border-image-outset: 0; border-image-repeat: stretch; border-image-slice: 100%; border-image-source: none; border-image-width: 1; border-left-color: rgb(0, 0, 0); border-left-style: none; border-left-width: 0px; border-right-color: rgb(0, 0, 0); border-right-style: none; border-right-width: 0px; border-top-color: rgb(0, 0, 0); border-top-style: none; border-top-width: 0px; font-size: 18px; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; outline-color: invert; outline-style: none; outline-width: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px; vertical-align: baseline;"><span style="background-attachment: scroll; background-clip: border-box; background-color: transparent; background-image: none; background-origin: padding-box; background-position-x: 0px; background-position-y: 0px; background-repeat: repeat; background-size: auto; border-bottom-color: rgb(0, 0, 0); border-bottom-style: none; border-bottom-width: 0px; border-image-outset: 0; border-image-repeat: stretch; border-image-slice: 100%; border-image-source: none; border-image-width: 1; border-left-color: rgb(0, 0, 0); border-left-style: none; border-left-width: 0px; border-right-color: rgb(0, 0, 0); border-right-style: none; border-right-width: 0px; border-top-color: rgb(0, 0, 0); border-top-style: none; border-top-width: 0px; font-family: overlock; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; outline-color: invert; outline-style: none; outline-width: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px; vertical-align: baseline;">So, it is learning to interpret the behaviour, as a communication, that is the key. The thing is, we interpret everyone's behaviour according to our own perceptions - whether we like, or dislike a person, what we judge them on, and how they measure up, etc. Well, guess what? People with PWS will also interpret everyone's behaviour, but according, of course, to their own perceptions. And we know that people with PWS have very concrete perceptions! We know that they make up their minds regardless of whether they are right or wrong, we know that they like hierarchy, and we know that once they've interpreted your communication, they will also have judged you, too.</span></span></div>
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<div class="font_7" style="-webkit-text-stroke-width: 0px; background-attachment: scroll; background-clip: border-box; background-color: transparent; background-image: none; background-origin: padding-box; background-position-x: 0px; background-position-y: 0px; background-repeat: repeat; background-size: auto; border-bottom-color: rgb(0, 0, 0); border-bottom-style: none; border-bottom-width: 0px; border-image-outset: 0; border-image-repeat: stretch; border-image-slice: 100%; border-image-source: none; border-image-width: 1; border-left-color: rgb(0, 0, 0); border-left-style: none; border-left-width: 0px; border-right-color: rgb(0, 0, 0); border-right-style: none; border-right-width: 0px; border-top-color: rgb(0, 0, 0); border-top-style: none; border-top-width: 0px; color: black; font-family: Arial,"ms pゴシック","ms pgothic","돋움",dotum,helvetica,sans-serif; font-size-adjust: none; font-size: 18px; font-stretch: 100%; font-style: normal; font-variant: normal; font-weight: 400; letter-spacing: normal; line-height: normal; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; orphans: 2; outline-color: invert; outline-style: none; outline-width: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px; pointer-events: auto; text-align: left; text-decoration: none; text-indent: 0px; text-transform: none; vertical-align: baseline; white-space: normal; word-spacing: 0px;">
<span style="background-attachment: scroll; background-clip: border-box; background-color: transparent; background-image: none; background-origin: padding-box; background-position-x: 0px; background-position-y: 0px; background-repeat: repeat; background-size: auto; border-bottom-color: rgb(0, 0, 0); border-bottom-style: none; border-bottom-width: 0px; border-image-outset: 0; border-image-repeat: stretch; border-image-slice: 100%; border-image-source: none; border-image-width: 1; border-left-color: rgb(0, 0, 0); border-left-style: none; border-left-width: 0px; border-right-color: rgb(0, 0, 0); border-right-style: none; border-right-width: 0px; border-top-color: rgb(0, 0, 0); border-top-style: none; border-top-width: 0px; font-size: 18px; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; outline-color: invert; outline-style: none; outline-width: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px; vertical-align: baseline;"><span style="background-attachment: scroll; background-clip: border-box; background-color: transparent; background-image: none; background-origin: padding-box; background-position-x: 0px; background-position-y: 0px; background-repeat: repeat; background-size: auto; border-bottom-color: rgb(0, 0, 0); border-bottom-style: none; border-bottom-width: 0px; border-image-outset: 0; border-image-repeat: stretch; border-image-slice: 100%; border-image-source: none; border-image-width: 1; border-left-color: rgb(0, 0, 0); border-left-style: none; border-left-width: 0px; border-right-color: rgb(0, 0, 0); border-right-style: none; border-right-width: 0px; border-top-color: rgb(0, 0, 0); border-top-style: none; border-top-width: 0px; font-family: overlock; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; outline-color: invert; outline-style: none; outline-width: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px; vertical-align: baseline;">We interpret behaviour by our own social codes; we know how to monitor our behaviours, how to hid our feelings, how to be polite, we understand how to reason, to make allowances, to compromise, to forgive.</span></span> </div>
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<div class="font_7" style="-webkit-text-stroke-width: 0px; background-attachment: scroll; background-clip: border-box; background-color: transparent; background-image: none; background-origin: padding-box; background-position-x: 0px; background-position-y: 0px; background-repeat: repeat; background-size: auto; border-bottom-color: rgb(0, 0, 0); border-bottom-style: none; border-bottom-width: 0px; border-image-outset: 0; border-image-repeat: stretch; border-image-slice: 100%; border-image-source: none; border-image-width: 1; border-left-color: rgb(0, 0, 0); border-left-style: none; border-left-width: 0px; border-right-color: rgb(0, 0, 0); border-right-style: none; border-right-width: 0px; border-top-color: rgb(0, 0, 0); border-top-style: none; border-top-width: 0px; color: black; font-family: Arial,"ms pゴシック","ms pgothic","돋움",dotum,helvetica,sans-serif; font-size-adjust: none; font-size: 18px; font-stretch: 100%; font-style: normal; font-variant: normal; font-weight: 400; letter-spacing: normal; line-height: normal; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; orphans: 2; outline-color: invert; outline-style: none; outline-width: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px; pointer-events: auto; text-align: left; text-decoration: none; text-indent: 0px; text-transform: none; vertical-align: baseline; white-space: normal; word-spacing: 0px;">
<span style="background-attachment: scroll; background-clip: border-box; background-color: transparent; background-image: none; background-origin: padding-box; background-position-x: 0px; background-position-y: 0px; background-repeat: repeat; background-size: auto; border-bottom-color: rgb(0, 0, 0); border-bottom-style: none; border-bottom-width: 0px; border-image-outset: 0; border-image-repeat: stretch; border-image-slice: 100%; border-image-source: none; border-image-width: 1; border-left-color: rgb(0, 0, 0); border-left-style: none; border-left-width: 0px; border-right-color: rgb(0, 0, 0); border-right-style: none; border-right-width: 0px; border-top-color: rgb(0, 0, 0); border-top-style: none; border-top-width: 0px; font-size: 18px; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; outline-color: invert; outline-style: none; outline-width: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px; vertical-align: baseline;"><span style="background-attachment: scroll; background-clip: border-box; background-color: transparent; background-image: none; background-origin: padding-box; background-position-x: 0px; background-position-y: 0px; background-repeat: repeat; background-size: auto; border-bottom-color: rgb(0, 0, 0); border-bottom-style: none; border-bottom-width: 0px; border-image-outset: 0; border-image-repeat: stretch; border-image-slice: 100%; border-image-source: none; border-image-width: 1; border-left-color: rgb(0, 0, 0); border-left-style: none; border-left-width: 0px; border-right-color: rgb(0, 0, 0); border-right-style: none; border-right-width: 0px; border-top-color: rgb(0, 0, 0); border-top-style: none; border-top-width: 0px; font-family: overlock; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; outline-color: invert; outline-style: none; outline-width: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px; vertical-align: baseline;">People with PWS will not have the same social code as you, and their behaviours are often described as manipulative.</span></span> </div>
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<div class="font_7" style="-webkit-text-stroke-width: 0px; background-attachment: scroll; background-clip: border-box; background-color: transparent; background-image: none; background-origin: padding-box; background-position-x: 0px; background-position-y: 0px; background-repeat: repeat; background-size: auto; border-bottom-color: rgb(0, 0, 0); border-bottom-style: none; border-bottom-width: 0px; border-image-outset: 0; border-image-repeat: stretch; border-image-slice: 100%; border-image-source: none; border-image-width: 1; border-left-color: rgb(0, 0, 0); border-left-style: none; border-left-width: 0px; border-right-color: rgb(0, 0, 0); border-right-style: none; border-right-width: 0px; border-top-color: rgb(0, 0, 0); border-top-style: none; border-top-width: 0px; color: black; font-family: Arial,"ms pゴシック","ms pgothic","돋움",dotum,helvetica,sans-serif; font-size-adjust: none; font-size: 18px; font-stretch: 100%; font-style: normal; font-variant: normal; font-weight: 400; letter-spacing: normal; line-height: normal; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; orphans: 2; outline-color: invert; outline-style: none; outline-width: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px; pointer-events: auto; text-align: left; text-decoration: none; text-indent: 0px; text-transform: none; vertical-align: baseline; white-space: normal; word-spacing: 0px;">
<span style="background-attachment: scroll; background-clip: border-box; background-color: transparent; background-image: none; background-origin: padding-box; background-position-x: 0px; background-position-y: 0px; background-repeat: repeat; background-size: auto; border-bottom-color: rgb(0, 0, 0); border-bottom-style: none; border-bottom-width: 0px; border-image-outset: 0; border-image-repeat: stretch; border-image-slice: 100%; border-image-source: none; border-image-width: 1; border-left-color: rgb(0, 0, 0); border-left-style: none; border-left-width: 0px; border-right-color: rgb(0, 0, 0); border-right-style: none; border-right-width: 0px; border-top-color: rgb(0, 0, 0); border-top-style: none; border-top-width: 0px; font-size: 18px; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; outline-color: invert; outline-style: none; outline-width: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px; vertical-align: baseline;"><span style="background-attachment: scroll; background-clip: border-box; background-color: transparent; background-image: none; background-origin: padding-box; background-position-x: 0px; background-position-y: 0px; background-repeat: repeat; background-size: auto; border-bottom-color: rgb(0, 0, 0); border-bottom-style: none; border-bottom-width: 0px; border-image-outset: 0; border-image-repeat: stretch; border-image-slice: 100%; border-image-source: none; border-image-width: 1; border-left-color: rgb(0, 0, 0); border-left-style: none; border-left-width: 0px; border-right-color: rgb(0, 0, 0); border-right-style: none; border-right-width: 0px; border-top-color: rgb(0, 0, 0); border-top-style: none; border-top-width: 0px; font-family: overlock; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; outline-color: invert; outline-style: none; outline-width: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px; vertical-align: baseline;">I would ask you to think about this word "manipulative". It means, getting what we want , usually by unfair or insidious ways and means. But we have learned several things about the syndrome and how it affects people: We know a person with PWS is very ego-centered, with little ability to "self monitor". We know that their world becomes ‘themselves', we know that most behaviours can be traced back to the how's and why's of food-sourcing. We also know that PWS is a ‘starvation syndrome' and survival for a person means eating.</span></span> </div>
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<div class="font_7" style="-webkit-text-stroke-width: 0px; background-attachment: scroll; background-clip: border-box; background-color: transparent; background-image: none; background-origin: padding-box; background-position-x: 0px; background-position-y: 0px; background-repeat: repeat; background-size: auto; border-bottom-color: rgb(0, 0, 0); border-bottom-style: none; border-bottom-width: 0px; border-image-outset: 0; border-image-repeat: stretch; border-image-slice: 100%; border-image-source: none; border-image-width: 1; border-left-color: rgb(0, 0, 0); border-left-style: none; border-left-width: 0px; border-right-color: rgb(0, 0, 0); border-right-style: none; border-right-width: 0px; border-top-color: rgb(0, 0, 0); border-top-style: none; border-top-width: 0px; color: black; font-family: Arial,"ms pゴシック","ms pgothic","돋움",dotum,helvetica,sans-serif; font-size-adjust: none; font-size: 18px; font-stretch: 100%; font-style: normal; font-variant: normal; font-weight: 400; letter-spacing: normal; line-height: normal; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; orphans: 2; outline-color: invert; outline-style: none; outline-width: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px; pointer-events: auto; text-align: left; text-decoration: none; text-indent: 0px; text-transform: none; vertical-align: baseline; white-space: normal; word-spacing: 0px;">
<span style="background-attachment: scroll; background-clip: border-box; background-color: transparent; background-image: none; background-origin: padding-box; background-position-x: 0px; background-position-y: 0px; background-repeat: repeat; background-size: auto; border-bottom-color: rgb(0, 0, 0); border-bottom-style: none; border-bottom-width: 0px; border-image-outset: 0; border-image-repeat: stretch; border-image-slice: 100%; border-image-source: none; border-image-width: 1; border-left-color: rgb(0, 0, 0); border-left-style: none; border-left-width: 0px; border-right-color: rgb(0, 0, 0); border-right-style: none; border-right-width: 0px; border-top-color: rgb(0, 0, 0); border-top-style: none; border-top-width: 0px; font-size: 18px; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; outline-color: invert; outline-style: none; outline-width: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px; vertical-align: baseline;"><span style="background-attachment: scroll; background-clip: border-box; background-color: transparent; background-image: none; background-origin: padding-box; background-position-x: 0px; background-position-y: 0px; background-repeat: repeat; background-size: auto; border-bottom-color: rgb(0, 0, 0); border-bottom-style: none; border-bottom-width: 0px; border-image-outset: 0; border-image-repeat: stretch; border-image-slice: 100%; border-image-source: none; border-image-width: 1; border-left-color: rgb(0, 0, 0); border-left-style: none; border-left-width: 0px; border-right-color: rgb(0, 0, 0); border-right-style: none; border-right-width: 0px; border-top-color: rgb(0, 0, 0); border-top-style: none; border-top-width: 0px; font-family: overlock; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; outline-color: invert; outline-style: none; outline-width: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px; vertical-align: baseline;">So - are the behaviours manipulative, or are they just a way of surviving in a world that is contrary and often scary?</span></span> </div>
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<div class="font_7" style="-webkit-text-stroke-width: 0px; background-attachment: scroll; background-clip: border-box; background-color: transparent; background-image: none; background-origin: padding-box; background-position-x: 0px; background-position-y: 0px; background-repeat: repeat; background-size: auto; border-bottom-color: rgb(0, 0, 0); border-bottom-style: none; border-bottom-width: 0px; border-image-outset: 0; border-image-repeat: stretch; border-image-slice: 100%; border-image-source: none; border-image-width: 1; border-left-color: rgb(0, 0, 0); border-left-style: none; border-left-width: 0px; border-right-color: rgb(0, 0, 0); border-right-style: none; border-right-width: 0px; border-top-color: rgb(0, 0, 0); border-top-style: none; border-top-width: 0px; color: black; font-family: Arial,"ms pゴシック","ms pgothic","돋움",dotum,helvetica,sans-serif; font-size-adjust: none; font-size: 18px; font-stretch: 100%; font-style: normal; font-variant: normal; font-weight: 400; letter-spacing: normal; line-height: normal; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; orphans: 2; outline-color: invert; outline-style: none; outline-width: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px; pointer-events: auto; text-align: left; text-decoration: none; text-indent: 0px; text-transform: none; vertical-align: baseline; white-space: normal; word-spacing: 0px;">
<span style="background-attachment: scroll; background-clip: border-box; background-color: transparent; background-image: none; background-origin: padding-box; background-position-x: 0px; background-position-y: 0px; background-repeat: repeat; background-size: auto; border-bottom-color: rgb(0, 0, 0); border-bottom-style: none; border-bottom-width: 0px; border-image-outset: 0; border-image-repeat: stretch; border-image-slice: 100%; border-image-source: none; border-image-width: 1; border-left-color: rgb(0, 0, 0); border-left-style: none; border-left-width: 0px; border-right-color: rgb(0, 0, 0); border-right-style: none; border-right-width: 0px; border-top-color: rgb(0, 0, 0); border-top-style: none; border-top-width: 0px; font-size: 18px; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; outline-color: invert; outline-style: none; outline-width: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px; vertical-align: baseline;"><span style="background-attachment: scroll; background-clip: border-box; background-color: transparent; background-image: none; background-origin: padding-box; background-position-x: 0px; background-position-y: 0px; background-repeat: repeat; background-size: auto; border-bottom-color: rgb(0, 0, 0); border-bottom-style: none; border-bottom-width: 0px; border-image-outset: 0; border-image-repeat: stretch; border-image-slice: 100%; border-image-source: none; border-image-width: 1; border-left-color: rgb(0, 0, 0); border-left-style: none; border-left-width: 0px; border-right-color: rgb(0, 0, 0); border-right-style: none; border-right-width: 0px; border-top-color: rgb(0, 0, 0); border-top-style: none; border-top-width: 0px; font-family: overlock; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; outline-color: invert; outline-style: none; outline-width: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px; vertical-align: baseline;">If we perceive PWS behaviours as manipulative, then the way we work with them, support them, and respond to them, will be skewed to our perception of being manipulated.</span></span> </div>
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<h2 class="font_2" style="-webkit-text-stroke-width: 0px; background-attachment: scroll; background-clip: border-box; background-color: transparent; background-image: none; background-origin: padding-box; background-position-x: 0px; background-position-y: 0px; background-repeat: repeat; background-size: auto; border-bottom-color: rgb(237, 149, 36); border-bottom-style: none; border-bottom-width: 0px; border-image-outset: 0; border-image-repeat: stretch; border-image-slice: 100%; border-image-source: none; border-image-width: 1; border-left-color: rgb(237, 149, 36); border-left-style: none; border-left-width: 0px; border-right-color: rgb(237, 149, 36); border-right-style: none; border-right-width: 0px; border-top-color: rgb(237, 149, 36); border-top-style: none; border-top-width: 0px; color: #ed9524; font-family: Verdana,geneva,sans-serif; font-size-adjust: none; font-size: 18px; font-stretch: 100%; font-style: normal; font-variant: normal; font-weight: 400; letter-spacing: normal; line-height: normal; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; orphans: 2; outline-color: invert; outline-style: none; outline-width: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px; pointer-events: auto; text-align: left; text-decoration: none; text-indent: 0px; text-transform: none; vertical-align: baseline; white-space: normal; word-spacing: 0px;">
<span style="background-attachment: scroll; background-clip: border-box; background-color: transparent; background-image: none; background-origin: padding-box; background-position-x: 0px; background-position-y: 0px; background-repeat: repeat; background-size: auto; border-bottom-color: rgb(237, 149, 36); border-bottom-style: none; border-bottom-width: 0px; border-image-outset: 0; border-image-repeat: stretch; border-image-slice: 100%; border-image-source: none; border-image-width: 1; border-left-color: rgb(237, 149, 36); border-left-style: none; border-left-width: 0px; border-right-color: rgb(237, 149, 36); border-right-style: none; border-right-width: 0px; border-top-color: rgb(237, 149, 36); border-top-style: none; border-top-width: 0px; font-weight: 700; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; outline-color: invert; outline-style: none; outline-width: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px; vertical-align: baseline;"><span style="background-attachment: scroll; background-clip: border-box; background-color: transparent; background-image: none; background-origin: padding-box; background-position-x: 0px; background-position-y: 0px; background-repeat: repeat; background-size: auto; border-bottom-color: rgb(237, 149, 36); border-bottom-style: none; border-bottom-width: 0px; border-image-outset: 0; border-image-repeat: stretch; border-image-slice: 100%; border-image-source: none; border-image-width: 1; border-left-color: rgb(237, 149, 36); border-left-style: none; border-left-width: 0px; border-right-color: rgb(237, 149, 36); border-right-style: none; border-right-width: 0px; border-top-color: rgb(237, 149, 36); border-top-style: none; border-top-width: 0px; font-size: 18px; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; outline-color: invert; outline-style: none; outline-width: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px; vertical-align: baseline;"><span style="background-attachment: scroll; background-clip: border-box; background-color: transparent; background-image: none; background-origin: padding-box; background-position-x: 0px; background-position-y: 0px; background-repeat: repeat; background-size: auto; border-bottom-color: rgb(237, 149, 36); border-bottom-style: none; border-bottom-width: 0px; border-image-outset: 0; border-image-repeat: stretch; border-image-slice: 100%; border-image-source: none; border-image-width: 1; border-left-color: rgb(237, 149, 36); border-left-style: none; border-left-width: 0px; border-right-color: rgb(237, 149, 36); border-right-style: none; border-right-width: 0px; border-top-color: rgb(237, 149, 36); border-top-style: none; border-top-width: 0px; font-family: raleway,sans-serif; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; outline-color: invert; outline-style: none; outline-width: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px; vertical-align: baseline;">Communication Breakdown</span></span></span></h2>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgrR0iRjT6x-LtbawEUDdEFbrFSC465jLX9o6f_DMyDbvMZtmdQXqcjLM4C8QKC9EQ5EjAMVmVv7xFRMMm7ABnttT2EsbXvjAS7YTz75yAjwvUwqNqkuMF0QUUramTw18vR8AXDUMcXRqY/s1600/thMKUX41JI.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" data-original-height="210" data-original-width="375" height="179" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgrR0iRjT6x-LtbawEUDdEFbrFSC465jLX9o6f_DMyDbvMZtmdQXqcjLM4C8QKC9EQ5EjAMVmVv7xFRMMm7ABnttT2EsbXvjAS7YTz75yAjwvUwqNqkuMF0QUUramTw18vR8AXDUMcXRqY/s320/thMKUX41JI.jpg" width="320" /></a></div>
<div class="font_7" style="-webkit-text-stroke-width: 0px; background-attachment: scroll; background-clip: border-box; background-color: transparent; background-image: none; background-origin: padding-box; background-position-x: 0px; background-position-y: 0px; background-repeat: repeat; background-size: auto; border-bottom-color: rgb(0, 0, 0); border-bottom-style: none; border-bottom-width: 0px; border-image-outset: 0; border-image-repeat: stretch; border-image-slice: 100%; border-image-source: none; border-image-width: 1; border-left-color: rgb(0, 0, 0); border-left-style: none; border-left-width: 0px; border-right-color: rgb(0, 0, 0); border-right-style: none; border-right-width: 0px; border-top-color: rgb(0, 0, 0); border-top-style: none; border-top-width: 0px; color: black; font-family: Arial,"ms pゴシック","ms pgothic","돋움",dotum,helvetica,sans-serif; font-size-adjust: none; font-size: 18px; font-stretch: 100%; font-style: normal; font-variant: normal; font-weight: 400; letter-spacing: normal; line-height: normal; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; orphans: 2; outline-color: invert; outline-style: none; outline-width: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px; pointer-events: auto; text-align: left; text-decoration: none; text-indent: 0px; text-transform: none; vertical-align: baseline; white-space: normal; word-spacing: 0px;">
<span style="background-attachment: scroll; background-clip: border-box; background-color: transparent; background-image: none; background-origin: padding-box; background-position-x: 0px; background-position-y: 0px; background-repeat: repeat; background-size: auto; border-bottom-color: rgb(0, 0, 0); border-bottom-style: none; border-bottom-width: 0px; border-image-outset: 0; border-image-repeat: stretch; border-image-slice: 100%; border-image-source: none; border-image-width: 1; border-left-color: rgb(0, 0, 0); border-left-style: none; border-left-width: 0px; border-right-color: rgb(0, 0, 0); border-right-style: none; border-right-width: 0px; border-top-color: rgb(0, 0, 0); border-top-style: none; border-top-width: 0px; font-size: 18px; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; outline-color: invert; outline-style: none; outline-width: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px; vertical-align: baseline;"><span style="background-attachment: scroll; background-clip: border-box; background-color: transparent; background-image: none; background-origin: padding-box; background-position-x: 0px; background-position-y: 0px; background-repeat: repeat; background-size: auto; border-bottom-color: rgb(0, 0, 0); border-bottom-style: none; border-bottom-width: 0px; border-image-outset: 0; border-image-repeat: stretch; border-image-slice: 100%; border-image-source: none; border-image-width: 1; border-left-color: rgb(0, 0, 0); border-left-style: none; border-left-width: 0px; border-right-color: rgb(0, 0, 0); border-right-style: none; border-right-width: 0px; border-top-color: rgb(0, 0, 0); border-top-style: none; border-top-width: 0px; font-family: overlock; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; outline-color: invert; outline-style: none; outline-width: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px; vertical-align: baseline;">People with PWS like concrete outcomes, they like visual interpretations - something they can see will happen a certain way: a staff member (or teacher) will be there at a certain time, on a certain day, and they will be doing certain things. People with PWS are not good at guesswork, so, if you can, try to make your communications visual, and concrete, so their expectations are not put at variance.</span></span></div>
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<div class="font_7" style="-webkit-text-stroke-width: 0px; background-attachment: scroll; background-clip: border-box; background-color: transparent; background-image: none; background-origin: padding-box; background-position-x: 0px; background-position-y: 0px; background-repeat: repeat; background-size: auto; border-bottom-color: rgb(0, 0, 0); border-bottom-style: none; border-bottom-width: 0px; border-image-outset: 0; border-image-repeat: stretch; border-image-slice: 100%; border-image-source: none; border-image-width: 1; border-left-color: rgb(0, 0, 0); border-left-style: none; border-left-width: 0px; border-right-color: rgb(0, 0, 0); border-right-style: none; border-right-width: 0px; border-top-color: rgb(0, 0, 0); border-top-style: none; border-top-width: 0px; color: black; font-family: Arial,"ms pゴシック","ms pgothic","돋움",dotum,helvetica,sans-serif; font-size-adjust: none; font-size: 18px; font-stretch: 100%; font-style: normal; font-variant: normal; font-weight: 400; letter-spacing: normal; line-height: normal; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; orphans: 2; outline-color: invert; outline-style: none; outline-width: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px; pointer-events: auto; text-align: left; text-decoration: none; text-indent: 0px; text-transform: none; vertical-align: baseline; white-space: normal; word-spacing: 0px;">
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<div class="font_7" style="-webkit-text-stroke-width: 0px; background-attachment: scroll; background-clip: border-box; background-color: transparent; background-image: none; background-origin: padding-box; background-position-x: 0px; background-position-y: 0px; background-repeat: repeat; background-size: auto; border-bottom-color: rgb(0, 0, 0); border-bottom-style: none; border-bottom-width: 0px; border-image-outset: 0; border-image-repeat: stretch; border-image-slice: 100%; border-image-source: none; border-image-width: 1; border-left-color: rgb(0, 0, 0); border-left-style: none; border-left-width: 0px; border-right-color: rgb(0, 0, 0); border-right-style: none; border-right-width: 0px; border-top-color: rgb(0, 0, 0); border-top-style: none; border-top-width: 0px; color: black; font-family: Arial,"ms pゴシック","ms pgothic","돋움",dotum,helvetica,sans-serif; font-size-adjust: none; font-size: 18px; font-stretch: 100%; font-style: normal; font-variant: normal; font-weight: 400; letter-spacing: normal; line-height: normal; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; orphans: 2; outline-color: invert; outline-style: none; outline-width: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px; pointer-events: auto; text-align: left; text-decoration: none; text-indent: 0px; text-transform: none; vertical-align: baseline; white-space: normal; word-spacing: 0px;">
<span style="background-attachment: scroll; background-clip: border-box; background-color: transparent; background-image: none; background-origin: padding-box; background-position-x: 0px; background-position-y: 0px; background-repeat: repeat; background-size: auto; border-bottom-color: rgb(0, 0, 0); border-bottom-style: none; border-bottom-width: 0px; border-image-outset: 0; border-image-repeat: stretch; border-image-slice: 100%; border-image-source: none; border-image-width: 1; border-left-color: rgb(0, 0, 0); border-left-style: none; border-left-width: 0px; border-right-color: rgb(0, 0, 0); border-right-style: none; border-right-width: 0px; border-top-color: rgb(0, 0, 0); border-top-style: none; border-top-width: 0px; font-size: 18px; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; outline-color: invert; outline-style: none; outline-width: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px; vertical-align: baseline;"><span style="background-attachment: scroll; background-clip: border-box; background-color: transparent; background-image: none; background-origin: padding-box; background-position-x: 0px; background-position-y: 0px; background-repeat: repeat; background-size: auto; border-bottom-color: rgb(0, 0, 0); border-bottom-style: none; border-bottom-width: 0px; border-image-outset: 0; border-image-repeat: stretch; border-image-slice: 100%; border-image-source: none; border-image-width: 1; border-left-color: rgb(0, 0, 0); border-left-style: none; border-left-width: 0px; border-right-color: rgb(0, 0, 0); border-right-style: none; border-right-width: 0px; border-top-color: rgb(0, 0, 0); border-top-style: none; border-top-width: 0px; font-family: overlock; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; outline-color: invert; outline-style: none; outline-width: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px; vertical-align: baseline;">Most "PWS behaviours" that result in a loss of self-control (be it verbal or physical) will have come from a communication breakdown and will have been exacerbated by anxiety. Anxiety, therefore, is the biggest precursor (or clue) to what might happen next. It is the best warning we will get, so learn to recognise what makes your person with PWS, anxious. It can be over little things: when is it going to happen, who will be there, what is expected of me, I can't do this, I don't understand... or it can be over bigger things: "will I get caught? why can't I have more? I hate you - I'm leaving."</span></span></div>
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<h2 class="font_2" style="-webkit-text-stroke-width: 0px; background-attachment: scroll; background-clip: border-box; background-color: transparent; background-image: none; background-origin: padding-box; background-position-x: 0px; background-position-y: 0px; background-repeat: repeat; background-size: auto; border-bottom-color: rgb(237, 149, 36); border-bottom-style: none; border-bottom-width: 0px; border-image-outset: 0; border-image-repeat: stretch; border-image-slice: 100%; border-image-source: none; border-image-width: 1; border-left-color: rgb(237, 149, 36); border-left-style: none; border-left-width: 0px; border-right-color: rgb(237, 149, 36); border-right-style: none; border-right-width: 0px; border-top-color: rgb(237, 149, 36); border-top-style: none; border-top-width: 0px; color: #ed9524; font-family: Verdana,geneva,sans-serif; font-size-adjust: none; font-size: 18px; font-stretch: 100%; font-style: normal; font-variant: normal; font-weight: 400; letter-spacing: normal; line-height: normal; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; orphans: 2; outline-color: invert; outline-style: none; outline-width: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px; pointer-events: auto; text-align: left; text-decoration: none; text-indent: 0px; text-transform: none; vertical-align: baseline; white-space: normal; word-spacing: 0px;">
<span style="background-attachment: scroll; background-clip: border-box; background-color: transparent; background-image: none; background-origin: padding-box; background-position-x: 0px; background-position-y: 0px; background-repeat: repeat; background-size: auto; border-bottom-color: rgb(237, 149, 36); border-bottom-style: none; border-bottom-width: 0px; border-image-outset: 0; border-image-repeat: stretch; border-image-slice: 100%; border-image-source: none; border-image-width: 1; border-left-color: rgb(237, 149, 36); border-left-style: none; border-left-width: 0px; border-right-color: rgb(237, 149, 36); border-right-style: none; border-right-width: 0px; border-top-color: rgb(237, 149, 36); border-top-style: none; border-top-width: 0px; font-weight: 700; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; outline-color: invert; outline-style: none; outline-width: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px; vertical-align: baseline;"><span style="background-attachment: scroll; background-clip: border-box; background-color: transparent; background-image: none; background-origin: padding-box; background-position-x: 0px; background-position-y: 0px; background-repeat: repeat; background-size: auto; border-bottom-color: rgb(237, 149, 36); border-bottom-style: none; border-bottom-width: 0px; border-image-outset: 0; border-image-repeat: stretch; border-image-slice: 100%; border-image-source: none; border-image-width: 1; border-left-color: rgb(237, 149, 36); border-left-style: none; border-left-width: 0px; border-right-color: rgb(237, 149, 36); border-right-style: none; border-right-width: 0px; border-top-color: rgb(237, 149, 36); border-top-style: none; border-top-width: 0px; font-size: 18px; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; outline-color: invert; outline-style: none; outline-width: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px; vertical-align: baseline;"><span style="background-attachment: scroll; background-clip: border-box; background-color: transparent; background-image: none; background-origin: padding-box; background-position-x: 0px; background-position-y: 0px; background-repeat: repeat; background-size: auto; border-bottom-color: rgb(237, 149, 36); border-bottom-style: none; border-bottom-width: 0px; border-image-outset: 0; border-image-repeat: stretch; border-image-slice: 100%; border-image-source: none; border-image-width: 1; border-left-color: rgb(237, 149, 36); border-left-style: none; border-left-width: 0px; border-right-color: rgb(237, 149, 36); border-right-style: none; border-right-width: 0px; border-top-color: rgb(237, 149, 36); border-top-style: none; border-top-width: 0px; font-family: raleway,sans-serif; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; outline-color: invert; outline-style: none; outline-width: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px; vertical-align: baseline;">Anxiety</span></span></span></h2>
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<div class="font_7" style="-webkit-text-stroke-width: 0px; background-attachment: scroll; background-clip: border-box; background-color: transparent; background-image: none; background-origin: padding-box; background-position-x: 0px; background-position-y: 0px; background-repeat: repeat; background-size: auto; border-bottom-color: rgb(0, 0, 0); border-bottom-style: none; border-bottom-width: 0px; border-image-outset: 0; border-image-repeat: stretch; border-image-slice: 100%; border-image-source: none; border-image-width: 1; border-left-color: rgb(0, 0, 0); border-left-style: none; border-left-width: 0px; border-right-color: rgb(0, 0, 0); border-right-style: none; border-right-width: 0px; border-top-color: rgb(0, 0, 0); border-top-style: none; border-top-width: 0px; color: black; font-family: Arial,"ms pゴシック","ms pgothic","돋움",dotum,helvetica,sans-serif; font-size-adjust: none; font-size: 18px; font-stretch: 100%; font-style: normal; font-variant: normal; font-weight: 400; letter-spacing: normal; line-height: normal; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; orphans: 2; outline-color: invert; outline-style: none; outline-width: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px; pointer-events: auto; text-align: left; text-decoration: none; text-indent: 0px; text-transform: none; vertical-align: baseline; white-space: normal; word-spacing: 0px;">
<span style="background-attachment: scroll; background-clip: border-box; background-color: transparent; background-image: none; background-origin: padding-box; background-position-x: 0px; background-position-y: 0px; background-repeat: repeat; background-size: auto; border-bottom-color: rgb(0, 0, 0); border-bottom-style: none; border-bottom-width: 0px; border-image-outset: 0; border-image-repeat: stretch; border-image-slice: 100%; border-image-source: none; border-image-width: 1; border-left-color: rgb(0, 0, 0); border-left-style: none; border-left-width: 0px; border-right-color: rgb(0, 0, 0); border-right-style: none; border-right-width: 0px; border-top-color: rgb(0, 0, 0); border-top-style: none; border-top-width: 0px; font-size: 18px; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; outline-color: invert; outline-style: none; outline-width: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px; vertical-align: baseline;"><span style="background-attachment: scroll; background-clip: border-box; background-color: transparent; background-image: none; background-origin: padding-box; background-position-x: 0px; background-position-y: 0px; background-repeat: repeat; background-size: auto; border-bottom-color: rgb(0, 0, 0); border-bottom-style: none; border-bottom-width: 0px; border-image-outset: 0; border-image-repeat: stretch; border-image-slice: 100%; border-image-source: none; border-image-width: 1; border-left-color: rgb(0, 0, 0); border-left-style: none; border-left-width: 0px; border-right-color: rgb(0, 0, 0); border-right-style: none; border-right-width: 0px; border-top-color: rgb(0, 0, 0); border-top-style: none; border-top-width: 0px; font-family: overlock; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; outline-color: invert; outline-style: none; outline-width: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px; vertical-align: baseline;">We all know what it feels like to be anxious, frustrated, annoyed, or stressed. We know how easy it is for our anxiety levels to rise and for our behaviours to become abrupt, curt, even angry to the point of losing our tempers, saying the wrong thing and often making situations worse. Anxiety, if not controlled, will lead to an escalation in behaviour.</span></span></div>
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<div class="font_7" style="-webkit-text-stroke-width: 0px; background-attachment: scroll; background-clip: border-box; background-color: transparent; background-image: none; background-origin: padding-box; background-position-x: 0px; background-position-y: 0px; background-repeat: repeat; background-size: auto; border-bottom-color: rgb(0, 0, 0); border-bottom-style: none; border-bottom-width: 0px; border-image-outset: 0; border-image-repeat: stretch; border-image-slice: 100%; border-image-source: none; border-image-width: 1; border-left-color: rgb(0, 0, 0); border-left-style: none; border-left-width: 0px; border-right-color: rgb(0, 0, 0); border-right-style: none; border-right-width: 0px; border-top-color: rgb(0, 0, 0); border-top-style: none; border-top-width: 0px; color: black; font-family: Arial,"ms pゴシック","ms pgothic","돋움",dotum,helvetica,sans-serif; font-size-adjust: none; font-size: 18px; font-stretch: 100%; font-style: normal; font-variant: normal; font-weight: 400; letter-spacing: normal; line-height: normal; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; orphans: 2; outline-color: invert; outline-style: none; outline-width: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px; pointer-events: auto; text-align: left; text-decoration: none; text-indent: 0px; text-transform: none; vertical-align: baseline; white-space: normal; word-spacing: 0px;">
<span style="background-attachment: scroll; background-clip: border-box; background-color: transparent; background-image: none; background-origin: padding-box; background-position-x: 0px; background-position-y: 0px; background-repeat: repeat; background-size: auto; border-bottom-color: rgb(0, 0, 0); border-bottom-style: none; border-bottom-width: 0px; border-image-outset: 0; border-image-repeat: stretch; border-image-slice: 100%; border-image-source: none; border-image-width: 1; border-left-color: rgb(0, 0, 0); border-left-style: none; border-left-width: 0px; border-right-color: rgb(0, 0, 0); border-right-style: none; border-right-width: 0px; border-top-color: rgb(0, 0, 0); border-top-style: none; border-top-width: 0px; font-size: 18px; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; outline-color: invert; outline-style: none; outline-width: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px; vertical-align: baseline;"><span style="background-attachment: scroll; background-clip: border-box; background-color: transparent; background-image: none; background-origin: padding-box; background-position-x: 0px; background-position-y: 0px; background-repeat: repeat; background-size: auto; border-bottom-color: rgb(0, 0, 0); border-bottom-style: none; border-bottom-width: 0px; border-image-outset: 0; border-image-repeat: stretch; border-image-slice: 100%; border-image-source: none; border-image-width: 1; border-left-color: rgb(0, 0, 0); border-left-style: none; border-left-width: 0px; border-right-color: rgb(0, 0, 0); border-right-style: none; border-right-width: 0px; border-top-color: rgb(0, 0, 0); border-top-style: none; border-top-width: 0px; font-family: overlock; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; outline-color: invert; outline-style: none; outline-width: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px; vertical-align: baseline;">It's just the same, if not more, for people with PWS. Anxiety for them is the inabilitiy to control an already difficult world. We know that they are very ego-centric, that the world revolves around them, so think how easily things can get out of control for them.</span></span></div>
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<div class="font_7" style="-webkit-text-stroke-width: 0px; background-attachment: scroll; background-clip: border-box; background-color: transparent; background-image: none; background-origin: padding-box; background-position-x: 0px; background-position-y: 0px; background-repeat: repeat; background-size: auto; border-bottom-color: rgb(0, 0, 0); border-bottom-style: none; border-bottom-width: 0px; border-image-outset: 0; border-image-repeat: stretch; border-image-slice: 100%; border-image-source: none; border-image-width: 1; border-left-color: rgb(0, 0, 0); border-left-style: none; border-left-width: 0px; border-right-color: rgb(0, 0, 0); border-right-style: none; border-right-width: 0px; border-top-color: rgb(0, 0, 0); border-top-style: none; border-top-width: 0px; color: black; font-family: Arial,"ms pゴシック","ms pgothic","돋움",dotum,helvetica,sans-serif; font-size-adjust: none; font-size: 18px; font-stretch: 100%; font-style: normal; font-variant: normal; font-weight: 400; letter-spacing: normal; line-height: normal; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; orphans: 2; outline-color: invert; outline-style: none; outline-width: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px; pointer-events: auto; text-align: left; text-decoration: none; text-indent: 0px; text-transform: none; vertical-align: baseline; white-space: normal; word-spacing: 0px;">
<span style="background-attachment: scroll; background-clip: border-box; background-color: transparent; background-image: none; background-origin: padding-box; background-position-x: 0px; background-position-y: 0px; background-repeat: repeat; background-size: auto; border-bottom-color: rgb(0, 0, 0); border-bottom-style: none; border-bottom-width: 0px; border-image-outset: 0; border-image-repeat: stretch; border-image-slice: 100%; border-image-source: none; border-image-width: 1; border-left-color: rgb(0, 0, 0); border-left-style: none; border-left-width: 0px; border-right-color: rgb(0, 0, 0); border-right-style: none; border-right-width: 0px; border-top-color: rgb(0, 0, 0); border-top-style: none; border-top-width: 0px; font-size: 18px; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; outline-color: invert; outline-style: none; outline-width: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px; vertical-align: baseline;"><span style="background-attachment: scroll; background-clip: border-box; background-color: transparent; background-image: none; background-origin: padding-box; background-position-x: 0px; background-position-y: 0px; background-repeat: repeat; background-size: auto; border-bottom-color: rgb(0, 0, 0); border-bottom-style: none; border-bottom-width: 0px; border-image-outset: 0; border-image-repeat: stretch; border-image-slice: 100%; border-image-source: none; border-image-width: 1; border-left-color: rgb(0, 0, 0); border-left-style: none; border-left-width: 0px; border-right-color: rgb(0, 0, 0); border-right-style: none; border-right-width: 0px; border-top-color: rgb(0, 0, 0); border-top-style: none; border-top-width: 0px; font-family: overlock; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; outline-color: invert; outline-style: none; outline-width: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px; vertical-align: baseline;">Lots of behaviours will increase in intensity and many of these will be easily recognisable:</span></span></div>
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<div class="font_7" style="-webkit-text-stroke-width: 0px; background-attachment: scroll; background-clip: border-box; background-color: transparent; background-image: none; background-origin: padding-box; background-position-x: 0px; background-position-y: 0px; background-repeat: repeat; background-size: auto; border-bottom-color: rgb(0, 0, 0); border-bottom-style: none; border-bottom-width: 0px; border-image-outset: 0; border-image-repeat: stretch; border-image-slice: 100%; border-image-source: none; border-image-width: 1; border-left-color: rgb(0, 0, 0); border-left-style: none; border-left-width: 0px; border-right-color: rgb(0, 0, 0); border-right-style: none; border-right-width: 0px; border-top-color: rgb(0, 0, 0); border-top-style: none; border-top-width: 0px; color: black; font-family: Arial,"ms pゴシック","ms pgothic","돋움",dotum,helvetica,sans-serif; font-size-adjust: none; font-size: 18px; font-stretch: 100%; font-style: normal; font-variant: normal; font-weight: 400; letter-spacing: normal; line-height: 19.8px; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; orphans: 2; outline-color: invert; outline-style: none; outline-width: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px; pointer-events: auto; text-align: left; text-decoration: none; text-indent: 0px; text-transform: none; vertical-align: baseline; white-space: normal; word-spacing: 0px;">
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<span style="-webkit-text-stroke-width: 0px; background-color: transparent; color: black; display: inline !important; float: none; font-family: Arial,Helvetica,sans-serif; font-size: 10px; font-style: normal; font-variant: normal; font-weight: 400; letter-spacing: normal; orphans: 2; pointer-events: none; text-align: left; text-decoration: none; text-indent: 0px; text-transform: none; white-space: normal; word-spacing: 0px; word-wrap: break-word;">
</span><br />
<ul class="font_8" style="-webkit-text-stroke-width: 0px; background-attachment: scroll; background-clip: border-box; background-color: transparent; background-image: none; background-origin: padding-box; background-position-x: 0px; background-position-y: 0px; background-repeat: repeat; background-size: auto; border-bottom-color: rgb(0, 0, 0); border-bottom-style: none; border-bottom-width: 0px; border-image-outset: 0; border-image-repeat: stretch; border-image-slice: 100%; border-image-source: none; border-image-width: 1; border-left-color: rgb(0, 0, 0); border-left-style: none; border-left-width: 0px; border-right-color: rgb(0, 0, 0); border-right-style: none; border-right-width: 0px; border-top-color: rgb(0, 0, 0); border-top-style: none; border-top-width: 0px; color: black; font-family: avenir-lt-w01_35-light1475496,sans-serif; font-size-adjust: none; font-size: 13px; font-stretch: 100%; font-style: normal; font-variant: normal; font-weight: 400; letter-spacing: normal; line-height: normal; list-style-image: none; list-style-position: outside; list-style-type: disc; margin-bottom: 0px; margin-left: 6.5px; margin-right: 0px; margin-top: 0px; orphans: 2; outline-color: invert; outline-style: none; outline-width: 0px; padding-bottom: 0px; padding-left: 16.9px; padding-right: 0px; padding-top: 0px; pointer-events: auto; text-align: left; text-decoration: none; text-indent: 0px; text-transform: none; vertical-align: baseline; white-space: normal; word-spacing: 0px;">
<li style="background-attachment: scroll; background-clip: border-box; background-color: transparent; background-image: none; background-origin: padding-box; background-position-x: 0px; background-position-y: 0px; background-repeat: repeat; background-size: auto; border-bottom-color: rgb(0, 0, 0); border-bottom-style: none; border-bottom-width: 0px; border-image-outset: 0; border-image-repeat: stretch; border-image-slice: 100%; border-image-source: none; border-image-width: 1; border-left-color: rgb(0, 0, 0); border-left-style: none; border-left-width: 0px; border-right-color: rgb(0, 0, 0); border-right-style: none; border-right-width: 0px; border-top-color: rgb(0, 0, 0); border-top-style: none; border-top-width: 0px; font-style: normal; font-weight: 400; letter-spacing: normal; line-height: normal; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; outline-color: invert; outline-style: none; outline-width: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px; vertical-align: baseline;">
<div class="font_8" style="background-attachment: scroll; background-clip: border-box; background-color: transparent; background-image: none; background-origin: padding-box; background-position-x: 0px; background-position-y: 0px; background-repeat: repeat; background-size: auto; border-bottom-color: rgb(0, 0, 0); border-bottom-style: none; border-bottom-width: 0px; border-image-outset: 0; border-image-repeat: stretch; border-image-slice: 100%; border-image-source: none; border-image-width: 1; border-left-color: rgb(0, 0, 0); border-left-style: none; border-left-width: 0px; border-right-color: rgb(0, 0, 0); border-right-style: none; border-right-width: 0px; border-top-color: rgb(0, 0, 0); border-top-style: none; border-top-width: 0px; color: black; font-family: avenir-lt-w01_35-light1475496,sans-serif; font-size-adjust: none; font-size: 18px; font-stretch: 100%; font-style: normal; font-variant: normal; font-weight: 400; letter-spacing: normal; line-height: normal; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; outline-color: invert; outline-style: none; outline-width: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px; vertical-align: baseline;">
<span style="background-attachment: scroll; background-clip: border-box; background-color: transparent; background-image: none; background-origin: padding-box; background-position-x: 0px; background-position-y: 0px; background-repeat: repeat; background-size: auto; border-bottom-color: rgb(0, 0, 0); border-bottom-style: none; border-bottom-width: 0px; border-image-outset: 0; border-image-repeat: stretch; border-image-slice: 100%; border-image-source: none; border-image-width: 1; border-left-color: rgb(0, 0, 0); border-left-style: none; border-left-width: 0px; border-right-color: rgb(0, 0, 0); border-right-style: none; border-right-width: 0px; border-top-color: rgb(0, 0, 0); border-top-style: none; border-top-width: 0px; font-size: 18px; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; outline-color: invert; outline-style: none; outline-width: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px; vertical-align: baseline;"><span style="background-attachment: scroll; background-clip: border-box; background-color: transparent; background-image: none; background-origin: padding-box; background-position-x: 0px; background-position-y: 0px; background-repeat: repeat; background-size: auto; border-bottom-color: rgb(0, 0, 0); border-bottom-style: none; border-bottom-width: 0px; border-image-outset: 0; border-image-repeat: stretch; border-image-slice: 100%; border-image-source: none; border-image-width: 1; border-left-color: rgb(0, 0, 0); border-left-style: none; border-left-width: 0px; border-right-color: rgb(0, 0, 0); border-right-style: none; border-right-width: 0px; border-top-color: rgb(0, 0, 0); border-top-style: none; border-top-width: 0px; font-family: overlock; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; outline-color: invert; outline-style: none; outline-width: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px; vertical-align: baseline;">Avoidance or non-compliance</span></span></div>
</li>
<li style="background-attachment: scroll; background-clip: border-box; background-color: transparent; background-image: none; background-origin: padding-box; background-position-x: 0px; background-position-y: 0px; background-repeat: repeat; background-size: auto; border-bottom-color: rgb(0, 0, 0); border-bottom-style: none; border-bottom-width: 0px; border-image-outset: 0; border-image-repeat: stretch; border-image-slice: 100%; border-image-source: none; border-image-width: 1; border-left-color: rgb(0, 0, 0); border-left-style: none; border-left-width: 0px; border-right-color: rgb(0, 0, 0); border-right-style: none; border-right-width: 0px; border-top-color: rgb(0, 0, 0); border-top-style: none; border-top-width: 0px; font-style: normal; font-weight: 400; letter-spacing: normal; line-height: normal; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; outline-color: invert; outline-style: none; outline-width: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px; vertical-align: baseline;">
<div class="font_8" style="background-attachment: scroll; background-clip: border-box; background-color: transparent; background-image: none; background-origin: padding-box; background-position-x: 0px; background-position-y: 0px; background-repeat: repeat; background-size: auto; border-bottom-color: rgb(0, 0, 0); border-bottom-style: none; border-bottom-width: 0px; border-image-outset: 0; border-image-repeat: stretch; border-image-slice: 100%; border-image-source: none; border-image-width: 1; border-left-color: rgb(0, 0, 0); border-left-style: none; border-left-width: 0px; border-right-color: rgb(0, 0, 0); border-right-style: none; border-right-width: 0px; border-top-color: rgb(0, 0, 0); border-top-style: none; border-top-width: 0px; color: black; font-family: avenir-lt-w01_35-light1475496,sans-serif; font-size-adjust: none; font-size: 18px; font-stretch: 100%; font-style: normal; font-variant: normal; font-weight: 400; letter-spacing: normal; line-height: 23.4px; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; outline-color: invert; outline-style: none; outline-width: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px; vertical-align: baseline;">
<span style="background-attachment: scroll; background-clip: border-box; background-color: transparent; background-image: none; background-origin: padding-box; background-position-x: 0px; background-position-y: 0px; background-repeat: repeat; background-size: auto; border-bottom-color: rgb(0, 0, 0); border-bottom-style: none; border-bottom-width: 0px; border-image-outset: 0; border-image-repeat: stretch; border-image-slice: 100%; border-image-source: none; border-image-width: 1; border-left-color: rgb(0, 0, 0); border-left-style: none; border-left-width: 0px; border-right-color: rgb(0, 0, 0); border-right-style: none; border-right-width: 0px; border-top-color: rgb(0, 0, 0); border-top-style: none; border-top-width: 0px; font-size: 18px; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; outline-color: invert; outline-style: none; outline-width: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px; vertical-align: baseline;"><span style="background-attachment: scroll; background-clip: border-box; background-color: transparent; background-image: none; background-origin: padding-box; background-position-x: 0px; background-position-y: 0px; background-repeat: repeat; background-size: auto; border-bottom-color: rgb(0, 0, 0); border-bottom-style: none; border-bottom-width: 0px; border-image-outset: 0; border-image-repeat: stretch; border-image-slice: 100%; border-image-source: none; border-image-width: 1; border-left-color: rgb(0, 0, 0); border-left-style: none; border-left-width: 0px; border-right-color: rgb(0, 0, 0); border-right-style: none; border-right-width: 0px; border-top-color: rgb(0, 0, 0); border-top-style: none; border-top-width: 0px; font-family: overlock; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; outline-color: invert; outline-style: none; outline-width: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px; vertical-align: baseline;">Denial</span></span></div>
</li>
<li style="background-attachment: scroll; background-clip: border-box; background-color: transparent; background-image: none; background-origin: padding-box; background-position-x: 0px; background-position-y: 0px; background-repeat: repeat; background-size: auto; border-bottom-color: rgb(0, 0, 0); border-bottom-style: none; border-bottom-width: 0px; border-image-outset: 0; border-image-repeat: stretch; border-image-slice: 100%; border-image-source: none; border-image-width: 1; border-left-color: rgb(0, 0, 0); border-left-style: none; border-left-width: 0px; border-right-color: rgb(0, 0, 0); border-right-style: none; border-right-width: 0px; border-top-color: rgb(0, 0, 0); border-top-style: none; border-top-width: 0px; font-style: normal; font-weight: 400; letter-spacing: normal; line-height: normal; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; outline-color: invert; outline-style: none; outline-width: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px; vertical-align: baseline;">
<div class="font_8" style="background-attachment: scroll; background-clip: border-box; background-color: transparent; background-image: none; background-origin: padding-box; background-position-x: 0px; background-position-y: 0px; background-repeat: repeat; background-size: auto; border-bottom-color: rgb(0, 0, 0); border-bottom-style: none; border-bottom-width: 0px; border-image-outset: 0; border-image-repeat: stretch; border-image-slice: 100%; border-image-source: none; border-image-width: 1; border-left-color: rgb(0, 0, 0); border-left-style: none; border-left-width: 0px; border-right-color: rgb(0, 0, 0); border-right-style: none; border-right-width: 0px; border-top-color: rgb(0, 0, 0); border-top-style: none; border-top-width: 0px; color: black; font-family: avenir-lt-w01_35-light1475496,sans-serif; font-size-adjust: none; font-size: 18px; font-stretch: 100%; font-style: normal; font-variant: normal; font-weight: 400; letter-spacing: normal; line-height: 23.4px; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; outline-color: invert; outline-style: none; outline-width: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px; vertical-align: baseline;">
<span style="background-attachment: scroll; background-clip: border-box; background-color: transparent; background-image: none; background-origin: padding-box; background-position-x: 0px; background-position-y: 0px; background-repeat: repeat; background-size: auto; border-bottom-color: rgb(0, 0, 0); border-bottom-style: none; border-bottom-width: 0px; border-image-outset: 0; border-image-repeat: stretch; border-image-slice: 100%; border-image-source: none; border-image-width: 1; border-left-color: rgb(0, 0, 0); border-left-style: none; border-left-width: 0px; border-right-color: rgb(0, 0, 0); border-right-style: none; border-right-width: 0px; border-top-color: rgb(0, 0, 0); border-top-style: none; border-top-width: 0px; font-size: 18px; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; outline-color: invert; outline-style: none; outline-width: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px; vertical-align: baseline;"><span style="background-attachment: scroll; background-clip: border-box; background-color: transparent; background-image: none; background-origin: padding-box; background-position-x: 0px; background-position-y: 0px; background-repeat: repeat; background-size: auto; border-bottom-color: rgb(0, 0, 0); border-bottom-style: none; border-bottom-width: 0px; border-image-outset: 0; border-image-repeat: stretch; border-image-slice: 100%; border-image-source: none; border-image-width: 1; border-left-color: rgb(0, 0, 0); border-left-style: none; border-left-width: 0px; border-right-color: rgb(0, 0, 0); border-right-style: none; border-right-width: 0px; border-top-color: rgb(0, 0, 0); border-top-style: none; border-top-width: 0px; font-family: overlock; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; outline-color: invert; outline-style: none; outline-width: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px; vertical-align: baseline;">Perseveration, muddledness</span></span></div>
</li>
<li style="background-attachment: scroll; background-clip: border-box; background-color: transparent; background-image: none; background-origin: padding-box; background-position-x: 0px; background-position-y: 0px; background-repeat: repeat; background-size: auto; border-bottom-color: rgb(0, 0, 0); border-bottom-style: none; border-bottom-width: 0px; border-image-outset: 0; border-image-repeat: stretch; border-image-slice: 100%; border-image-source: none; border-image-width: 1; border-left-color: rgb(0, 0, 0); border-left-style: none; border-left-width: 0px; border-right-color: rgb(0, 0, 0); border-right-style: none; border-right-width: 0px; border-top-color: rgb(0, 0, 0); border-top-style: none; border-top-width: 0px; font-style: normal; font-weight: 400; letter-spacing: normal; line-height: normal; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; outline-color: invert; outline-style: none; outline-width: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px; vertical-align: baseline;">
<div class="font_8" style="background-attachment: scroll; background-clip: border-box; background-color: transparent; background-image: none; background-origin: padding-box; background-position-x: 0px; background-position-y: 0px; background-repeat: repeat; background-size: auto; border-bottom-color: rgb(0, 0, 0); border-bottom-style: none; border-bottom-width: 0px; border-image-outset: 0; border-image-repeat: stretch; border-image-slice: 100%; border-image-source: none; border-image-width: 1; border-left-color: rgb(0, 0, 0); border-left-style: none; border-left-width: 0px; border-right-color: rgb(0, 0, 0); border-right-style: none; border-right-width: 0px; border-top-color: rgb(0, 0, 0); border-top-style: none; border-top-width: 0px; color: black; font-family: avenir-lt-w01_35-light1475496,sans-serif; font-size-adjust: none; font-size: 18px; font-stretch: 100%; font-style: normal; font-variant: normal; font-weight: 400; letter-spacing: normal; line-height: 23.4px; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; outline-color: invert; outline-style: none; outline-width: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px; vertical-align: baseline;">
<span style="background-attachment: scroll; background-clip: border-box; background-color: transparent; background-image: none; background-origin: padding-box; background-position-x: 0px; background-position-y: 0px; background-repeat: repeat; background-size: auto; border-bottom-color: rgb(0, 0, 0); border-bottom-style: none; border-bottom-width: 0px; border-image-outset: 0; border-image-repeat: stretch; border-image-slice: 100%; border-image-source: none; border-image-width: 1; border-left-color: rgb(0, 0, 0); border-left-style: none; border-left-width: 0px; border-right-color: rgb(0, 0, 0); border-right-style: none; border-right-width: 0px; border-top-color: rgb(0, 0, 0); border-top-style: none; border-top-width: 0px; font-size: 18px; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; outline-color: invert; outline-style: none; outline-width: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px; vertical-align: baseline;"><span style="background-attachment: scroll; background-clip: border-box; background-color: transparent; background-image: none; background-origin: padding-box; background-position-x: 0px; background-position-y: 0px; background-repeat: repeat; background-size: auto; border-bottom-color: rgb(0, 0, 0); border-bottom-style: none; border-bottom-width: 0px; border-image-outset: 0; border-image-repeat: stretch; border-image-slice: 100%; border-image-source: none; border-image-width: 1; border-left-color: rgb(0, 0, 0); border-left-style: none; border-left-width: 0px; border-right-color: rgb(0, 0, 0); border-right-style: none; border-right-width: 0px; border-top-color: rgb(0, 0, 0); border-top-style: none; border-top-width: 0px; font-family: overlock; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; outline-color: invert; outline-style: none; outline-width: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px; vertical-align: baseline;">Frustration</span></span></div>
</li>
<li style="background-attachment: scroll; background-clip: border-box; background-color: transparent; background-image: none; background-origin: padding-box; background-position-x: 0px; background-position-y: 0px; background-repeat: repeat; background-size: auto; border-bottom-color: rgb(0, 0, 0); border-bottom-style: none; border-bottom-width: 0px; border-image-outset: 0; border-image-repeat: stretch; border-image-slice: 100%; border-image-source: none; border-image-width: 1; border-left-color: rgb(0, 0, 0); border-left-style: none; border-left-width: 0px; border-right-color: rgb(0, 0, 0); border-right-style: none; border-right-width: 0px; border-top-color: rgb(0, 0, 0); border-top-style: none; border-top-width: 0px; font-style: normal; font-weight: 400; letter-spacing: normal; line-height: normal; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; outline-color: invert; outline-style: none; outline-width: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px; vertical-align: baseline;">
<div class="font_8" style="background-attachment: scroll; background-clip: border-box; background-color: transparent; background-image: none; background-origin: padding-box; background-position-x: 0px; background-position-y: 0px; background-repeat: repeat; background-size: auto; border-bottom-color: rgb(0, 0, 0); border-bottom-style: none; border-bottom-width: 0px; border-image-outset: 0; border-image-repeat: stretch; border-image-slice: 100%; border-image-source: none; border-image-width: 1; border-left-color: rgb(0, 0, 0); border-left-style: none; border-left-width: 0px; border-right-color: rgb(0, 0, 0); border-right-style: none; border-right-width: 0px; border-top-color: rgb(0, 0, 0); border-top-style: none; border-top-width: 0px; color: black; font-family: avenir-lt-w01_35-light1475496,sans-serif; font-size-adjust: none; font-size: 18px; font-stretch: 100%; font-style: normal; font-variant: normal; font-weight: 400; letter-spacing: normal; line-height: 23.4px; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; outline-color: invert; outline-style: none; outline-width: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px; vertical-align: baseline;">
<span style="background-attachment: scroll; background-clip: border-box; background-color: transparent; background-image: none; background-origin: padding-box; background-position-x: 0px; background-position-y: 0px; background-repeat: repeat; background-size: auto; border-bottom-color: rgb(0, 0, 0); border-bottom-style: none; border-bottom-width: 0px; border-image-outset: 0; border-image-repeat: stretch; border-image-slice: 100%; border-image-source: none; border-image-width: 1; border-left-color: rgb(0, 0, 0); border-left-style: none; border-left-width: 0px; border-right-color: rgb(0, 0, 0); border-right-style: none; border-right-width: 0px; border-top-color: rgb(0, 0, 0); border-top-style: none; border-top-width: 0px; font-size: 18px; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; outline-color: invert; outline-style: none; outline-width: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px; vertical-align: baseline;"><span style="background-attachment: scroll; background-clip: border-box; background-color: transparent; background-image: none; background-origin: padding-box; background-position-x: 0px; background-position-y: 0px; background-repeat: repeat; background-size: auto; border-bottom-color: rgb(0, 0, 0); border-bottom-style: none; border-bottom-width: 0px; border-image-outset: 0; border-image-repeat: stretch; border-image-slice: 100%; border-image-source: none; border-image-width: 1; border-left-color: rgb(0, 0, 0); border-left-style: none; border-left-width: 0px; border-right-color: rgb(0, 0, 0); border-right-style: none; border-right-width: 0px; border-top-color: rgb(0, 0, 0); border-top-style: none; border-top-width: 0px; font-family: overlock; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; outline-color: invert; outline-style: none; outline-width: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px; vertical-align: baseline;">Argumentative</span></span></div>
</li>
<li style="background-attachment: scroll; background-clip: border-box; background-color: transparent; background-image: none; background-origin: padding-box; background-position-x: 0px; background-position-y: 0px; background-repeat: repeat; background-size: auto; border-bottom-color: rgb(0, 0, 0); border-bottom-style: none; border-bottom-width: 0px; border-image-outset: 0; border-image-repeat: stretch; border-image-slice: 100%; border-image-source: none; border-image-width: 1; border-left-color: rgb(0, 0, 0); border-left-style: none; border-left-width: 0px; border-right-color: rgb(0, 0, 0); border-right-style: none; border-right-width: 0px; border-top-color: rgb(0, 0, 0); border-top-style: none; border-top-width: 0px; font-style: normal; font-weight: 400; letter-spacing: normal; line-height: normal; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; outline-color: invert; outline-style: none; outline-width: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px; vertical-align: baseline;">
<div class="font_8" style="background-attachment: scroll; background-clip: border-box; background-color: transparent; background-image: none; background-origin: padding-box; background-position-x: 0px; background-position-y: 0px; background-repeat: repeat; background-size: auto; border-bottom-color: rgb(0, 0, 0); border-bottom-style: none; border-bottom-width: 0px; border-image-outset: 0; border-image-repeat: stretch; border-image-slice: 100%; border-image-source: none; border-image-width: 1; border-left-color: rgb(0, 0, 0); border-left-style: none; border-left-width: 0px; border-right-color: rgb(0, 0, 0); border-right-style: none; border-right-width: 0px; border-top-color: rgb(0, 0, 0); border-top-style: none; border-top-width: 0px; color: black; font-family: avenir-lt-w01_35-light1475496,sans-serif; font-size-adjust: none; font-size: 18px; font-stretch: 100%; font-style: normal; font-variant: normal; font-weight: 400; letter-spacing: normal; line-height: 23.4px; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; outline-color: invert; outline-style: none; outline-width: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px; vertical-align: baseline;">
<span style="background-attachment: scroll; background-clip: border-box; background-color: transparent; background-image: none; background-origin: padding-box; background-position-x: 0px; background-position-y: 0px; background-repeat: repeat; background-size: auto; border-bottom-color: rgb(0, 0, 0); border-bottom-style: none; border-bottom-width: 0px; border-image-outset: 0; border-image-repeat: stretch; border-image-slice: 100%; border-image-source: none; border-image-width: 1; border-left-color: rgb(0, 0, 0); border-left-style: none; border-left-width: 0px; border-right-color: rgb(0, 0, 0); border-right-style: none; border-right-width: 0px; border-top-color: rgb(0, 0, 0); border-top-style: none; border-top-width: 0px; font-size: 18px; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; outline-color: invert; outline-style: none; outline-width: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px; vertical-align: baseline;"><span style="background-attachment: scroll; background-clip: border-box; background-color: transparent; background-image: none; background-origin: padding-box; background-position-x: 0px; background-position-y: 0px; background-repeat: repeat; background-size: auto; border-bottom-color: rgb(0, 0, 0); border-bottom-style: none; border-bottom-width: 0px; border-image-outset: 0; border-image-repeat: stretch; border-image-slice: 100%; border-image-source: none; border-image-width: 1; border-left-color: rgb(0, 0, 0); border-left-style: none; border-left-width: 0px; border-right-color: rgb(0, 0, 0); border-right-style: none; border-right-width: 0px; border-top-color: rgb(0, 0, 0); border-top-style: none; border-top-width: 0px; font-family: overlock; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; outline-color: invert; outline-style: none; outline-width: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px; vertical-align: baseline;">Drop in communication levels</span></span></div>
</li>
<li style="background-attachment: scroll; background-clip: border-box; background-color: transparent; background-image: none; background-origin: padding-box; background-position-x: 0px; background-position-y: 0px; background-repeat: repeat; background-size: auto; border-bottom-color: rgb(0, 0, 0); border-bottom-style: none; border-bottom-width: 0px; border-image-outset: 0; border-image-repeat: stretch; border-image-slice: 100%; border-image-source: none; border-image-width: 1; border-left-color: rgb(0, 0, 0); border-left-style: none; border-left-width: 0px; border-right-color: rgb(0, 0, 0); border-right-style: none; border-right-width: 0px; border-top-color: rgb(0, 0, 0); border-top-style: none; border-top-width: 0px; font-style: normal; font-weight: 400; letter-spacing: normal; line-height: normal; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; outline-color: invert; outline-style: none; outline-width: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px; vertical-align: baseline;">
<div class="font_8" style="background-attachment: scroll; background-clip: border-box; background-color: transparent; background-image: none; background-origin: padding-box; background-position-x: 0px; background-position-y: 0px; background-repeat: repeat; background-size: auto; border-bottom-color: rgb(0, 0, 0); border-bottom-style: none; border-bottom-width: 0px; border-image-outset: 0; border-image-repeat: stretch; border-image-slice: 100%; border-image-source: none; border-image-width: 1; border-left-color: rgb(0, 0, 0); border-left-style: none; border-left-width: 0px; border-right-color: rgb(0, 0, 0); border-right-style: none; border-right-width: 0px; border-top-color: rgb(0, 0, 0); border-top-style: none; border-top-width: 0px; color: black; font-family: avenir-lt-w01_35-light1475496,sans-serif; font-size-adjust: none; font-size: 18px; font-stretch: 100%; font-style: normal; font-variant: normal; font-weight: 400; letter-spacing: normal; line-height: 23.4px; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; outline-color: invert; outline-style: none; outline-width: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px; vertical-align: baseline;">
<span style="background-attachment: scroll; background-clip: border-box; background-color: transparent; background-image: none; background-origin: padding-box; background-position-x: 0px; background-position-y: 0px; background-repeat: repeat; background-size: auto; border-bottom-color: rgb(0, 0, 0); border-bottom-style: none; border-bottom-width: 0px; border-image-outset: 0; border-image-repeat: stretch; border-image-slice: 100%; border-image-source: none; border-image-width: 1; border-left-color: rgb(0, 0, 0); border-left-style: none; border-left-width: 0px; border-right-color: rgb(0, 0, 0); border-right-style: none; border-right-width: 0px; border-top-color: rgb(0, 0, 0); border-top-style: none; border-top-width: 0px; font-size: 18px; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; outline-color: invert; outline-style: none; outline-width: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px; vertical-align: baseline;"><span style="background-attachment: scroll; background-clip: border-box; background-color: transparent; background-image: none; background-origin: padding-box; background-position-x: 0px; background-position-y: 0px; background-repeat: repeat; background-size: auto; border-bottom-color: rgb(0, 0, 0); border-bottom-style: none; border-bottom-width: 0px; border-image-outset: 0; border-image-repeat: stretch; border-image-slice: 100%; border-image-source: none; border-image-width: 1; border-left-color: rgb(0, 0, 0); border-left-style: none; border-left-width: 0px; border-right-color: rgb(0, 0, 0); border-right-style: none; border-right-width: 0px; border-top-color: rgb(0, 0, 0); border-top-style: none; border-top-width: 0px; font-family: overlock; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; outline-color: invert; outline-style: none; outline-width: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px; vertical-align: baseline;">Compulsive behaviours</span></span></div>
</li>
</ul>
<span style="-webkit-text-stroke-width: 0px; background-color: transparent; color: black; display: inline !important; float: none; font-family: Arial,Helvetica,sans-serif; font-size: 10px; font-style: normal; font-variant: normal; font-weight: 400; letter-spacing: normal; orphans: 2; pointer-events: none; text-align: left; text-decoration: none; text-indent: 0px; text-transform: none; white-space: normal; word-spacing: 0px; word-wrap: break-word;">
</span><br />
<div class="font_8" style="-webkit-text-stroke-width: 0px; background-attachment: scroll; background-clip: border-box; background-color: transparent; background-image: none; background-origin: padding-box; background-position-x: 0px; background-position-y: 0px; background-repeat: repeat; background-size: auto; border-bottom-color: rgb(0, 0, 0); border-bottom-style: none; border-bottom-width: 0px; border-image-outset: 0; border-image-repeat: stretch; border-image-slice: 100%; border-image-source: none; border-image-width: 1; border-left-color: rgb(0, 0, 0); border-left-style: none; border-left-width: 0px; border-right-color: rgb(0, 0, 0); border-right-style: none; border-right-width: 0px; border-top-color: rgb(0, 0, 0); border-top-style: none; border-top-width: 0px; color: black; font-family: avenir-lt-w01_35-light1475496,sans-serif; font-size-adjust: none; font-size: 18px; font-stretch: 100%; font-style: normal; font-variant: normal; font-weight: 400; letter-spacing: normal; line-height: 23.4px; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; orphans: 2; outline-color: invert; outline-style: none; outline-width: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px; pointer-events: auto; text-align: left; text-decoration: none; text-indent: 0px; text-transform: none; vertical-align: baseline; white-space: normal; word-spacing: 0px;">
<br /></div>
<span style="-webkit-text-stroke-width: 0px; background-color: transparent; color: black; display: inline !important; float: none; font-family: Arial,Helvetica,sans-serif; font-size: 10px; font-style: normal; font-variant: normal; font-weight: 400; letter-spacing: normal; orphans: 2; pointer-events: none; text-align: left; text-decoration: none; text-indent: 0px; text-transform: none; white-space: normal; word-spacing: 0px; word-wrap: break-word;">
</span><br />
<div class="font_7" style="-webkit-text-stroke-width: 0px; background-attachment: scroll; background-clip: border-box; background-color: transparent; background-image: none; background-origin: padding-box; background-position-x: 0px; background-position-y: 0px; background-repeat: repeat; background-size: auto; border-bottom-color: rgb(0, 0, 0); border-bottom-style: none; border-bottom-width: 0px; border-image-outset: 0; border-image-repeat: stretch; border-image-slice: 100%; border-image-source: none; border-image-width: 1; border-left-color: rgb(0, 0, 0); border-left-style: none; border-left-width: 0px; border-right-color: rgb(0, 0, 0); border-right-style: none; border-right-width: 0px; border-top-color: rgb(0, 0, 0); border-top-style: none; border-top-width: 0px; color: black; font-family: Arial,"ms pゴシック","ms pgothic","돋움",dotum,helvetica,sans-serif; font-size-adjust: none; font-size: 18px; font-stretch: 100%; font-style: normal; font-variant: normal; font-weight: 400; letter-spacing: normal; line-height: normal; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; orphans: 2; outline-color: invert; outline-style: none; outline-width: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px; pointer-events: auto; text-align: left; text-decoration: none; text-indent: 0px; text-transform: none; vertical-align: baseline; white-space: normal; word-spacing: 0px;">
<span style="background-attachment: scroll; background-clip: border-box; background-color: transparent; background-image: none; background-origin: padding-box; background-position-x: 0px; background-position-y: 0px; background-repeat: repeat; background-size: auto; border-bottom-color: rgb(0, 0, 0); border-bottom-style: none; border-bottom-width: 0px; border-image-outset: 0; border-image-repeat: stretch; border-image-slice: 100%; border-image-source: none; border-image-width: 1; border-left-color: rgb(0, 0, 0); border-left-style: none; border-left-width: 0px; border-right-color: rgb(0, 0, 0); border-right-style: none; border-right-width: 0px; border-top-color: rgb(0, 0, 0); border-top-style: none; border-top-width: 0px; font-size: 18px; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; outline-color: invert; outline-style: none; outline-width: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px; vertical-align: baseline;"><span style="background-attachment: scroll; background-clip: border-box; background-color: transparent; background-image: none; background-origin: padding-box; background-position-x: 0px; background-position-y: 0px; background-repeat: repeat; background-size: auto; border-bottom-color: rgb(0, 0, 0); border-bottom-style: none; border-bottom-width: 0px; border-image-outset: 0; border-image-repeat: stretch; border-image-slice: 100%; border-image-source: none; border-image-width: 1; border-left-color: rgb(0, 0, 0); border-left-style: none; border-left-width: 0px; border-right-color: rgb(0, 0, 0); border-right-style: none; border-right-width: 0px; border-top-color: rgb(0, 0, 0); border-top-style: none; border-top-width: 0px; font-family: overlock; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; outline-color: invert; outline-style: none; outline-width: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px; vertical-align: baseline;">If you see a rise in any of these behaviours, you will know that somewhere along the line there's been a communication breakdown. It's time to wind back the clock and find out what's gone wrong.</span></span></div>
<span style="-webkit-text-stroke-width: 0px; background-color: transparent; color: black; display: inline !important; float: none; font-family: Arial,Helvetica,sans-serif; font-size: 10px; font-style: normal; font-variant: normal; font-weight: 400; letter-spacing: normal; orphans: 2; pointer-events: none; text-align: left; text-decoration: none; text-indent: 0px; text-transform: none; white-space: normal; word-spacing: 0px; word-wrap: break-word;">
</span><br />
<div class="font_7" style="-webkit-text-stroke-width: 0px; background-attachment: scroll; background-clip: border-box; background-color: transparent; background-image: none; background-origin: padding-box; background-position-x: 0px; background-position-y: 0px; background-repeat: repeat; background-size: auto; border-bottom-color: rgb(0, 0, 0); border-bottom-style: none; border-bottom-width: 0px; border-image-outset: 0; border-image-repeat: stretch; border-image-slice: 100%; border-image-source: none; border-image-width: 1; border-left-color: rgb(0, 0, 0); border-left-style: none; border-left-width: 0px; border-right-color: rgb(0, 0, 0); border-right-style: none; border-right-width: 0px; border-top-color: rgb(0, 0, 0); border-top-style: none; border-top-width: 0px; color: black; font-family: Arial,"ms pゴシック","ms pgothic","돋움",dotum,helvetica,sans-serif; font-size-adjust: none; font-size: 18px; font-stretch: 100%; font-style: normal; font-variant: normal; font-weight: 400; letter-spacing: normal; line-height: normal; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; orphans: 2; outline-color: invert; outline-style: none; outline-width: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px; pointer-events: auto; text-align: left; text-decoration: none; text-indent: 0px; text-transform: none; vertical-align: baseline; white-space: normal; word-spacing: 0px;">
<br /></div>
<span style="-webkit-text-stroke-width: 0px; background-color: transparent; color: black; display: inline !important; float: none; font-family: Arial,Helvetica,sans-serif; font-size: 10px; font-style: normal; font-variant: normal; font-weight: 400; letter-spacing: normal; orphans: 2; pointer-events: none; text-align: left; text-decoration: none; text-indent: 0px; text-transform: none; white-space: normal; word-spacing: 0px; word-wrap: break-word;">
</span><br />
<div class="font_7" style="-webkit-text-stroke-width: 0px; background-attachment: scroll; background-clip: border-box; background-color: transparent; background-image: none; background-origin: padding-box; background-position-x: 0px; background-position-y: 0px; background-repeat: repeat; background-size: auto; border-bottom-color: rgb(0, 0, 0); border-bottom-style: none; border-bottom-width: 0px; border-image-outset: 0; border-image-repeat: stretch; border-image-slice: 100%; border-image-source: none; border-image-width: 1; border-left-color: rgb(0, 0, 0); border-left-style: none; border-left-width: 0px; border-right-color: rgb(0, 0, 0); border-right-style: none; border-right-width: 0px; border-top-color: rgb(0, 0, 0); border-top-style: none; border-top-width: 0px; color: black; font-family: Arial,"ms pゴシック","ms pgothic","돋움",dotum,helvetica,sans-serif; font-size-adjust: none; font-size: 18px; font-stretch: 100%; font-style: normal; font-variant: normal; font-weight: 400; letter-spacing: normal; line-height: normal; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; orphans: 2; outline-color: invert; outline-style: none; outline-width: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px; pointer-events: auto; text-align: left; text-decoration: none; text-indent: 0px; text-transform: none; vertical-align: baseline; white-space: normal; word-spacing: 0px;">
<span style="background-attachment: scroll; background-clip: border-box; background-color: transparent; background-image: none; background-origin: padding-box; background-position-x: 0px; background-position-y: 0px; background-repeat: repeat; background-size: auto; border-bottom-color: rgb(0, 0, 0); border-bottom-style: none; border-bottom-width: 0px; border-image-outset: 0; border-image-repeat: stretch; border-image-slice: 100%; border-image-source: none; border-image-width: 1; border-left-color: rgb(0, 0, 0); border-left-style: none; border-left-width: 0px; border-right-color: rgb(0, 0, 0); border-right-style: none; border-right-width: 0px; border-top-color: rgb(0, 0, 0); border-top-style: none; border-top-width: 0px; font-size: 18px; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; outline-color: invert; outline-style: none; outline-width: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px; vertical-align: baseline;"><span style="background-attachment: scroll; background-clip: border-box; background-color: transparent; background-image: none; background-origin: padding-box; background-position-x: 0px; background-position-y: 0px; background-repeat: repeat; background-size: auto; border-bottom-color: rgb(0, 0, 0); border-bottom-style: none; border-bottom-width: 0px; border-image-outset: 0; border-image-repeat: stretch; border-image-slice: 100%; border-image-source: none; border-image-width: 1; border-left-color: rgb(0, 0, 0); border-left-style: none; border-left-width: 0px; border-right-color: rgb(0, 0, 0); border-right-style: none; border-right-width: 0px; border-top-color: rgb(0, 0, 0); border-top-style: none; border-top-width: 0px; font-family: overlock; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; outline-color: invert; outline-style: none; outline-width: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px; vertical-align: baseline;">You can use a variety of strategies:</span></span></div>
<div class="font_7" style="-webkit-text-stroke-width: 0px; background-attachment: scroll; background-clip: border-box; background-color: transparent; background-image: none; background-origin: padding-box; background-position-x: 0px; background-position-y: 0px; background-repeat: repeat; background-size: auto; border-bottom-color: rgb(0, 0, 0); border-bottom-style: none; border-bottom-width: 0px; border-image-outset: 0; border-image-repeat: stretch; border-image-slice: 100%; border-image-source: none; border-image-width: 1; border-left-color: rgb(0, 0, 0); border-left-style: none; border-left-width: 0px; border-right-color: rgb(0, 0, 0); border-right-style: none; border-right-width: 0px; border-top-color: rgb(0, 0, 0); border-top-style: none; border-top-width: 0px; color: black; font-family: Arial,"ms pゴシック","ms pgothic","돋움",dotum,helvetica,sans-serif; font-size-adjust: none; font-size: 18px; font-stretch: 100%; font-style: normal; font-variant: normal; font-weight: 400; letter-spacing: normal; line-height: normal; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; orphans: 2; outline-color: invert; outline-style: none; outline-width: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px; pointer-events: auto; text-align: left; text-decoration: none; text-indent: 0px; text-transform: none; vertical-align: baseline; white-space: normal; word-spacing: 0px;">
<span style="background-attachment: scroll; background-clip: border-box; background-color: transparent; background-image: none; background-origin: padding-box; background-position-x: 0px; background-position-y: 0px; background-repeat: repeat; background-size: auto; border-bottom-color: rgb(0, 0, 0); border-bottom-style: none; border-bottom-width: 0px; border-image-outset: 0; border-image-repeat: stretch; border-image-slice: 100%; border-image-source: none; border-image-width: 1; border-left-color: rgb(0, 0, 0); border-left-style: none; border-left-width: 0px; border-right-color: rgb(0, 0, 0); border-right-style: none; border-right-width: 0px; border-top-color: rgb(0, 0, 0); border-top-style: none; border-top-width: 0px; font-size: 18px; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; outline-color: invert; outline-style: none; outline-width: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px; vertical-align: baseline;"><span style="background-attachment: scroll; background-clip: border-box; background-color: transparent; background-image: none; background-origin: padding-box; background-position-x: 0px; background-position-y: 0px; background-repeat: repeat; background-size: auto; border-bottom-color: rgb(0, 0, 0); border-bottom-style: none; border-bottom-width: 0px; border-image-outset: 0; border-image-repeat: stretch; border-image-slice: 100%; border-image-source: none; border-image-width: 1; border-left-color: rgb(0, 0, 0); border-left-style: none; border-left-width: 0px; border-right-color: rgb(0, 0, 0); border-right-style: none; border-right-width: 0px; border-top-color: rgb(0, 0, 0); border-top-style: none; border-top-width: 0px; font-family: overlock; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; outline-color: invert; outline-style: none; outline-width: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px; vertical-align: baseline;"><br /></span></span></div>
<span style="-webkit-text-stroke-width: 0px; background-color: transparent; color: black; display: inline !important; float: none; font-family: Arial,Helvetica,sans-serif; font-size: 10px; font-style: normal; font-variant: normal; font-weight: 400; letter-spacing: normal; orphans: 2; pointer-events: none; text-align: left; text-decoration: none; text-indent: 0px; text-transform: none; white-space: normal; word-spacing: 0px; word-wrap: break-word;">
</span><br />
<div class="font_7" style="-webkit-text-stroke-width: 0px; background-attachment: scroll; background-clip: border-box; background-color: transparent; background-image: none; background-origin: padding-box; background-position-x: 0px; background-position-y: 0px; background-repeat: repeat; background-size: auto; border-bottom-color: rgb(0, 0, 0); border-bottom-style: none; border-bottom-width: 0px; border-image-outset: 0; border-image-repeat: stretch; border-image-slice: 100%; border-image-source: none; border-image-width: 1; border-left-color: rgb(0, 0, 0); border-left-style: none; border-left-width: 0px; border-right-color: rgb(0, 0, 0); border-right-style: none; border-right-width: 0px; border-top-color: rgb(0, 0, 0); border-top-style: none; border-top-width: 0px; color: black; font-family: Arial,"ms pゴシック","ms pgothic","돋움",dotum,helvetica,sans-serif; font-size-adjust: none; font-size: 18px; font-stretch: 100%; font-style: normal; font-variant: normal; font-weight: 400; letter-spacing: normal; line-height: normal; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; orphans: 2; outline-color: invert; outline-style: none; outline-width: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px; pointer-events: auto; text-align: left; text-decoration: none; text-indent: 0px; text-transform: none; vertical-align: baseline; white-space: normal; word-spacing: 0px;">
<span style="background-attachment: scroll; background-clip: border-box; background-color: transparent; background-image: none; background-origin: padding-box; background-position-x: 0px; background-position-y: 0px; background-repeat: repeat; background-size: auto; border-bottom-color: rgb(0, 0, 0); border-bottom-style: none; border-bottom-width: 0px; border-image-outset: 0; border-image-repeat: stretch; border-image-slice: 100%; border-image-source: none; border-image-width: 1; border-left-color: rgb(0, 0, 0); border-left-style: none; border-left-width: 0px; border-right-color: rgb(0, 0, 0); border-right-style: none; border-right-width: 0px; border-top-color: rgb(0, 0, 0); border-top-style: none; border-top-width: 0px; font-weight: 700; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; outline-color: invert; outline-style: none; outline-width: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px; vertical-align: baseline;"><span style="background-attachment: scroll; background-clip: border-box; background-color: transparent; background-image: none; background-origin: padding-box; background-position-x: 0px; background-position-y: 0px; background-repeat: repeat; background-size: auto; border-bottom-color: rgb(0, 0, 0); border-bottom-style: none; border-bottom-width: 0px; border-image-outset: 0; border-image-repeat: stretch; border-image-slice: 100%; border-image-source: none; border-image-width: 1; border-left-color: rgb(0, 0, 0); border-left-style: none; border-left-width: 0px; border-right-color: rgb(0, 0, 0); border-right-style: none; border-right-width: 0px; border-top-color: rgb(0, 0, 0); border-top-style: none; border-top-width: 0px; font-size: 18px; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; outline-color: invert; outline-style: none; outline-width: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px; vertical-align: baseline;"><span style="background-attachment: scroll; background-clip: border-box; background-color: transparent; background-image: none; background-origin: padding-box; background-position-x: 0px; background-position-y: 0px; background-repeat: repeat; background-size: auto; border-bottom-color: rgb(0, 0, 0); border-bottom-style: none; border-bottom-width: 0px; border-image-outset: 0; border-image-repeat: stretch; border-image-slice: 100%; border-image-source: none; border-image-width: 1; border-left-color: rgb(0, 0, 0); border-left-style: none; border-left-width: 0px; border-right-color: rgb(0, 0, 0); border-right-style: none; border-right-width: 0px; border-top-color: rgb(0, 0, 0); border-top-style: none; border-top-width: 0px; font-family: overlock; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; outline-color: invert; outline-style: none; outline-width: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px; vertical-align: baseline;">Avoidance/non-compliance</span></span></span></div>
<span style="-webkit-text-stroke-width: 0px; background-color: transparent; color: black; display: inline !important; float: none; font-family: Arial,Helvetica,sans-serif; font-size: 10px; font-style: normal; font-variant: normal; font-weight: 400; letter-spacing: normal; orphans: 2; pointer-events: none; text-align: left; text-decoration: none; text-indent: 0px; text-transform: none; white-space: normal; word-spacing: 0px; word-wrap: break-word;">
</span><br />
<div class="font_7" style="-webkit-text-stroke-width: 0px; background-attachment: scroll; background-clip: border-box; background-color: transparent; background-image: none; background-origin: padding-box; background-position-x: 0px; background-position-y: 0px; background-repeat: repeat; background-size: auto; border-bottom-color: rgb(0, 0, 0); border-bottom-style: none; border-bottom-width: 0px; border-image-outset: 0; border-image-repeat: stretch; border-image-slice: 100%; border-image-source: none; border-image-width: 1; border-left-color: rgb(0, 0, 0); border-left-style: none; border-left-width: 0px; border-right-color: rgb(0, 0, 0); border-right-style: none; border-right-width: 0px; border-top-color: rgb(0, 0, 0); border-top-style: none; border-top-width: 0px; color: black; font-family: Arial,"ms pゴシック","ms pgothic","돋움",dotum,helvetica,sans-serif; font-size-adjust: none; font-size: 18px; font-stretch: 100%; font-style: normal; font-variant: normal; font-weight: 400; letter-spacing: normal; line-height: normal; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; orphans: 2; outline-color: invert; outline-style: none; outline-width: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px; pointer-events: auto; text-align: left; text-decoration: none; text-indent: 0px; text-transform: none; vertical-align: baseline; white-space: normal; word-spacing: 0px;">
<span style="background-attachment: scroll; background-clip: border-box; background-color: transparent; background-image: none; background-origin: padding-box; background-position-x: 0px; background-position-y: 0px; background-repeat: repeat; background-size: auto; border-bottom-color: rgb(0, 0, 0); border-bottom-style: none; border-bottom-width: 0px; border-image-outset: 0; border-image-repeat: stretch; border-image-slice: 100%; border-image-source: none; border-image-width: 1; border-left-color: rgb(0, 0, 0); border-left-style: none; border-left-width: 0px; border-right-color: rgb(0, 0, 0); border-right-style: none; border-right-width: 0px; border-top-color: rgb(0, 0, 0); border-top-style: none; border-top-width: 0px; font-size: 18px; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; outline-color: invert; outline-style: none; outline-width: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px; vertical-align: baseline;"><span style="background-attachment: scroll; background-clip: border-box; background-color: transparent; background-image: none; background-origin: padding-box; background-position-x: 0px; background-position-y: 0px; background-repeat: repeat; background-size: auto; border-bottom-color: rgb(0, 0, 0); border-bottom-style: none; border-bottom-width: 0px; border-image-outset: 0; border-image-repeat: stretch; border-image-slice: 100%; border-image-source: none; border-image-width: 1; border-left-color: rgb(0, 0, 0); border-left-style: none; border-left-width: 0px; border-right-color: rgb(0, 0, 0); border-right-style: none; border-right-width: 0px; border-top-color: rgb(0, 0, 0); border-top-style: none; border-top-width: 0px; font-family: overlock; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; outline-color: invert; outline-style: none; outline-width: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px; vertical-align: baseline;">Give options, and offer to help with the task, or offer alternative solutions and be creative. Check that the task is understood, check the level of abilities around that task, break the task into manageable parts.</span></span></div>
<span style="-webkit-text-stroke-width: 0px; background-color: transparent; color: black; display: inline !important; float: none; font-family: Arial,Helvetica,sans-serif; font-size: 10px; font-style: normal; font-variant: normal; font-weight: 400; letter-spacing: normal; orphans: 2; pointer-events: none; text-align: left; text-decoration: none; text-indent: 0px; text-transform: none; white-space: normal; word-spacing: 0px; word-wrap: break-word;">
</span><br />
<div class="font_7" style="-webkit-text-stroke-width: 0px; background-attachment: scroll; background-clip: border-box; background-color: transparent; background-image: none; background-origin: padding-box; background-position-x: 0px; background-position-y: 0px; background-repeat: repeat; background-size: auto; border-bottom-color: rgb(0, 0, 0); border-bottom-style: none; border-bottom-width: 0px; border-image-outset: 0; border-image-repeat: stretch; border-image-slice: 100%; border-image-source: none; border-image-width: 1; border-left-color: rgb(0, 0, 0); border-left-style: none; border-left-width: 0px; border-right-color: rgb(0, 0, 0); border-right-style: none; border-right-width: 0px; border-top-color: rgb(0, 0, 0); border-top-style: none; border-top-width: 0px; color: black; font-family: Arial,"ms pゴシック","ms pgothic","돋움",dotum,helvetica,sans-serif; font-size-adjust: none; font-size: 18px; font-stretch: 100%; font-style: normal; font-variant: normal; font-weight: 400; letter-spacing: normal; line-height: normal; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; orphans: 2; outline-color: invert; outline-style: none; outline-width: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px; pointer-events: auto; text-align: left; text-decoration: none; text-indent: 0px; text-transform: none; vertical-align: baseline; white-space: normal; word-spacing: 0px;">
<br /></div>
<span style="-webkit-text-stroke-width: 0px; background-color: transparent; color: black; display: inline !important; float: none; font-family: Arial,Helvetica,sans-serif; font-size: 10px; font-style: normal; font-variant: normal; font-weight: 400; letter-spacing: normal; orphans: 2; pointer-events: none; text-align: left; text-decoration: none; text-indent: 0px; text-transform: none; white-space: normal; word-spacing: 0px; word-wrap: break-word;">
</span><br />
<div class="font_7" style="-webkit-text-stroke-width: 0px; background-attachment: scroll; background-clip: border-box; background-color: transparent; background-image: none; background-origin: padding-box; background-position-x: 0px; background-position-y: 0px; background-repeat: repeat; background-size: auto; border-bottom-color: rgb(0, 0, 0); border-bottom-style: none; border-bottom-width: 0px; border-image-outset: 0; border-image-repeat: stretch; border-image-slice: 100%; border-image-source: none; border-image-width: 1; border-left-color: rgb(0, 0, 0); border-left-style: none; border-left-width: 0px; border-right-color: rgb(0, 0, 0); border-right-style: none; border-right-width: 0px; border-top-color: rgb(0, 0, 0); border-top-style: none; border-top-width: 0px; color: black; font-family: Arial,"ms pゴシック","ms pgothic","돋움",dotum,helvetica,sans-serif; font-size-adjust: none; font-size: 18px; font-stretch: 100%; font-style: normal; font-variant: normal; font-weight: 400; letter-spacing: normal; line-height: normal; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; orphans: 2; outline-color: invert; outline-style: none; outline-width: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px; pointer-events: auto; text-align: left; text-decoration: none; text-indent: 0px; text-transform: none; vertical-align: baseline; white-space: normal; word-spacing: 0px;">
<span style="background-attachment: scroll; background-clip: border-box; background-color: transparent; background-image: none; background-origin: padding-box; background-position-x: 0px; background-position-y: 0px; background-repeat: repeat; background-size: auto; border-bottom-color: rgb(0, 0, 0); border-bottom-style: none; border-bottom-width: 0px; border-image-outset: 0; border-image-repeat: stretch; border-image-slice: 100%; border-image-source: none; border-image-width: 1; border-left-color: rgb(0, 0, 0); border-left-style: none; border-left-width: 0px; border-right-color: rgb(0, 0, 0); border-right-style: none; border-right-width: 0px; border-top-color: rgb(0, 0, 0); border-top-style: none; border-top-width: 0px; font-weight: 700; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; outline-color: invert; outline-style: none; outline-width: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px; vertical-align: baseline;"><span style="background-attachment: scroll; background-clip: border-box; background-color: transparent; background-image: none; background-origin: padding-box; background-position-x: 0px; background-position-y: 0px; background-repeat: repeat; background-size: auto; border-bottom-color: rgb(0, 0, 0); border-bottom-style: none; border-bottom-width: 0px; border-image-outset: 0; border-image-repeat: stretch; border-image-slice: 100%; border-image-source: none; border-image-width: 1; border-left-color: rgb(0, 0, 0); border-left-style: none; border-left-width: 0px; border-right-color: rgb(0, 0, 0); border-right-style: none; border-right-width: 0px; border-top-color: rgb(0, 0, 0); border-top-style: none; border-top-width: 0px; font-size: 18px; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; outline-color: invert; outline-style: none; outline-width: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px; vertical-align: baseline;"><span style="background-attachment: scroll; background-clip: border-box; background-color: transparent; background-image: none; background-origin: padding-box; background-position-x: 0px; background-position-y: 0px; background-repeat: repeat; background-size: auto; border-bottom-color: rgb(0, 0, 0); border-bottom-style: none; border-bottom-width: 0px; border-image-outset: 0; border-image-repeat: stretch; border-image-slice: 100%; border-image-source: none; border-image-width: 1; border-left-color: rgb(0, 0, 0); border-left-style: none; border-left-width: 0px; border-right-color: rgb(0, 0, 0); border-right-style: none; border-right-width: 0px; border-top-color: rgb(0, 0, 0); border-top-style: none; border-top-width: 0px; font-family: overlock; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; outline-color: invert; outline-style: none; outline-width: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px; vertical-align: baseline;">Denial</span></span></span></div>
<span style="-webkit-text-stroke-width: 0px; background-color: transparent; color: black; display: inline !important; float: none; font-family: Arial,Helvetica,sans-serif; font-size: 10px; font-style: normal; font-variant: normal; font-weight: 400; letter-spacing: normal; orphans: 2; pointer-events: none; text-align: left; text-decoration: none; text-indent: 0px; text-transform: none; white-space: normal; word-spacing: 0px; word-wrap: break-word;">
</span><br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjAzzKGYNU_AZOFySrtyvKzxdbAbOtnvGtdDhGOdsLEOVA1MblCNXOd6DrFLoDADfoZ-ef54_gvN0Ui4pjQC0eOTe1Q3fNS1dpEcGKjJcBadIOgWlYMpyiZ-bJbWm4F5DSZoycNujuoLP4/s1600/denial.png" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" data-original-height="256" data-original-width="317" height="161" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjAzzKGYNU_AZOFySrtyvKzxdbAbOtnvGtdDhGOdsLEOVA1MblCNXOd6DrFLoDADfoZ-ef54_gvN0Ui4pjQC0eOTe1Q3fNS1dpEcGKjJcBadIOgWlYMpyiZ-bJbWm4F5DSZoycNujuoLP4/s200/denial.png" width="200" /></a></div>
<div class="font_7" style="-webkit-text-stroke-width: 0px; background-attachment: scroll; background-clip: border-box; background-color: transparent; background-image: none; background-origin: padding-box; background-position-x: 0px; background-position-y: 0px; background-repeat: repeat; background-size: auto; border-bottom-color: rgb(0, 0, 0); border-bottom-style: none; border-bottom-width: 0px; border-image-outset: 0; border-image-repeat: stretch; border-image-slice: 100%; border-image-source: none; border-image-width: 1; border-left-color: rgb(0, 0, 0); border-left-style: none; border-left-width: 0px; border-right-color: rgb(0, 0, 0); border-right-style: none; border-right-width: 0px; border-top-color: rgb(0, 0, 0); border-top-style: none; border-top-width: 0px; color: black; font-family: Arial,"ms pゴシック","ms pgothic","돋움",dotum,helvetica,sans-serif; font-size-adjust: none; font-size: 18px; font-stretch: 100%; font-style: normal; font-variant: normal; font-weight: 400; letter-spacing: normal; line-height: normal; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; orphans: 2; outline-color: invert; outline-style: none; outline-width: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px; pointer-events: auto; text-align: left; text-decoration: none; text-indent: 0px; text-transform: none; vertical-align: baseline; white-space: normal; word-spacing: 0px;">
<span style="background-attachment: scroll; background-clip: border-box; background-color: transparent; background-image: none; background-origin: padding-box; background-position-x: 0px; background-position-y: 0px; background-repeat: repeat; background-size: auto; border-bottom-color: rgb(0, 0, 0); border-bottom-style: none; border-bottom-width: 0px; border-image-outset: 0; border-image-repeat: stretch; border-image-slice: 100%; border-image-source: none; border-image-width: 1; border-left-color: rgb(0, 0, 0); border-left-style: none; border-left-width: 0px; border-right-color: rgb(0, 0, 0); border-right-style: none; border-right-width: 0px; border-top-color: rgb(0, 0, 0); border-top-style: none; border-top-width: 0px; font-size: 18px; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; outline-color: invert; outline-style: none; outline-width: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px; vertical-align: baseline;"><span style="background-attachment: scroll; background-clip: border-box; background-color: transparent; background-image: none; background-origin: padding-box; background-position-x: 0px; background-position-y: 0px; background-repeat: repeat; background-size: auto; border-bottom-color: rgb(0, 0, 0); border-bottom-style: none; border-bottom-width: 0px; border-image-outset: 0; border-image-repeat: stretch; border-image-slice: 100%; border-image-source: none; border-image-width: 1; border-left-color: rgb(0, 0, 0); border-left-style: none; border-left-width: 0px; border-right-color: rgb(0, 0, 0); border-right-style: none; border-right-width: 0px; border-top-color: rgb(0, 0, 0); border-top-style: none; border-top-width: 0px; font-family: overlock; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; outline-color: invert; outline-style: none; outline-width: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px; vertical-align: baseline;">Denial is often used as self-defence (it wasn't me, I didn't do it!) and, quite frankly, there's no point in accusation unless you've caught the person red-handed; just note your suspicions and pass the information on ("I think there was a $10 note taken from my car - please keep a check on any new purchases..."). Don't use open or closed questions and expect an accurate answer - it won't happen. You may choose to ignore the situation rather than engage in argument.</span></span></div>
<span style="-webkit-text-stroke-width: 0px; background-color: transparent; color: black; display: inline !important; float: none; font-family: Arial,Helvetica,sans-serif; font-size: 10px; font-style: normal; font-variant: normal; font-weight: 400; letter-spacing: normal; orphans: 2; pointer-events: none; text-align: left; text-decoration: none; text-indent: 0px; text-transform: none; white-space: normal; word-spacing: 0px; word-wrap: break-word;">
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<div class="font_7" style="-webkit-text-stroke-width: 0px; background-attachment: scroll; background-clip: border-box; background-color: transparent; background-image: none; background-origin: padding-box; background-position-x: 0px; background-position-y: 0px; background-repeat: repeat; background-size: auto; border-bottom-color: rgb(0, 0, 0); border-bottom-style: none; border-bottom-width: 0px; border-image-outset: 0; border-image-repeat: stretch; border-image-slice: 100%; border-image-source: none; border-image-width: 1; border-left-color: rgb(0, 0, 0); border-left-style: none; border-left-width: 0px; border-right-color: rgb(0, 0, 0); border-right-style: none; border-right-width: 0px; border-top-color: rgb(0, 0, 0); border-top-style: none; border-top-width: 0px; color: black; font-family: Arial,"ms pゴシック","ms pgothic","돋움",dotum,helvetica,sans-serif; font-size-adjust: none; font-size: 18px; font-stretch: 100%; font-style: normal; font-variant: normal; font-weight: 400; letter-spacing: normal; line-height: normal; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; orphans: 2; outline-color: invert; outline-style: none; outline-width: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px; pointer-events: auto; text-align: left; text-decoration: none; text-indent: 0px; text-transform: none; vertical-align: baseline; white-space: normal; word-spacing: 0px;">
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</span><br />
<div class="font_7" style="-webkit-text-stroke-width: 0px; background-attachment: scroll; background-clip: border-box; background-color: transparent; background-image: none; background-origin: padding-box; background-position-x: 0px; background-position-y: 0px; background-repeat: repeat; background-size: auto; border-bottom-color: rgb(0, 0, 0); border-bottom-style: none; border-bottom-width: 0px; border-image-outset: 0; border-image-repeat: stretch; border-image-slice: 100%; border-image-source: none; border-image-width: 1; border-left-color: rgb(0, 0, 0); border-left-style: none; border-left-width: 0px; border-right-color: rgb(0, 0, 0); border-right-style: none; border-right-width: 0px; border-top-color: rgb(0, 0, 0); border-top-style: none; border-top-width: 0px; color: black; font-family: Arial,"ms pゴシック","ms pgothic","돋움",dotum,helvetica,sans-serif; font-size-adjust: none; font-size: 18px; font-stretch: 100%; font-style: normal; font-variant: normal; font-weight: 400; letter-spacing: normal; line-height: normal; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; orphans: 2; outline-color: invert; outline-style: none; outline-width: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px; pointer-events: auto; text-align: left; text-decoration: none; text-indent: 0px; text-transform: none; vertical-align: baseline; white-space: normal; word-spacing: 0px;">
<span style="background-attachment: scroll; background-clip: border-box; background-color: transparent; background-image: none; background-origin: padding-box; background-position-x: 0px; background-position-y: 0px; background-repeat: repeat; background-size: auto; border-bottom-color: rgb(0, 0, 0); border-bottom-style: none; border-bottom-width: 0px; border-image-outset: 0; border-image-repeat: stretch; border-image-slice: 100%; border-image-source: none; border-image-width: 1; border-left-color: rgb(0, 0, 0); border-left-style: none; border-left-width: 0px; border-right-color: rgb(0, 0, 0); border-right-style: none; border-right-width: 0px; border-top-color: rgb(0, 0, 0); border-top-style: none; border-top-width: 0px; font-weight: 700; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; outline-color: invert; outline-style: none; outline-width: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px; vertical-align: baseline;"><span style="background-attachment: scroll; background-clip: border-box; background-color: transparent; background-image: none; background-origin: padding-box; background-position-x: 0px; background-position-y: 0px; background-repeat: repeat; background-size: auto; border-bottom-color: rgb(0, 0, 0); border-bottom-style: none; border-bottom-width: 0px; border-image-outset: 0; border-image-repeat: stretch; border-image-slice: 100%; border-image-source: none; border-image-width: 1; border-left-color: rgb(0, 0, 0); border-left-style: none; border-left-width: 0px; border-right-color: rgb(0, 0, 0); border-right-style: none; border-right-width: 0px; border-top-color: rgb(0, 0, 0); border-top-style: none; border-top-width: 0px; font-size: 18px; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; outline-color: invert; outline-style: none; outline-width: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px; vertical-align: baseline;"><span style="background-attachment: scroll; background-clip: border-box; background-color: transparent; background-image: none; background-origin: padding-box; background-position-x: 0px; background-position-y: 0px; background-repeat: repeat; background-size: auto; border-bottom-color: rgb(0, 0, 0); border-bottom-style: none; border-bottom-width: 0px; border-image-outset: 0; border-image-repeat: stretch; border-image-slice: 100%; border-image-source: none; border-image-width: 1; border-left-color: rgb(0, 0, 0); border-left-style: none; border-left-width: 0px; border-right-color: rgb(0, 0, 0); border-right-style: none; border-right-width: 0px; border-top-color: rgb(0, 0, 0); border-top-style: none; border-top-width: 0px; font-family: overlock; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; outline-color: invert; outline-style: none; outline-width: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px; vertical-align: baseline;">Perseveration/muddledness</span></span></span></div>
<span style="-webkit-text-stroke-width: 0px; background-color: transparent; color: black; display: inline !important; float: none; font-family: Arial,Helvetica,sans-serif; font-size: 10px; font-style: normal; font-variant: normal; font-weight: 400; letter-spacing: normal; orphans: 2; pointer-events: none; text-align: left; text-decoration: none; text-indent: 0px; text-transform: none; white-space: normal; word-spacing: 0px; word-wrap: break-word;">
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<div class="font_7" style="-webkit-text-stroke-width: 0px; background-attachment: scroll; background-clip: border-box; background-color: transparent; background-image: none; background-origin: padding-box; background-position-x: 0px; background-position-y: 0px; background-repeat: repeat; background-size: auto; border-bottom-color: rgb(0, 0, 0); border-bottom-style: none; border-bottom-width: 0px; border-image-outset: 0; border-image-repeat: stretch; border-image-slice: 100%; border-image-source: none; border-image-width: 1; border-left-color: rgb(0, 0, 0); border-left-style: none; border-left-width: 0px; border-right-color: rgb(0, 0, 0); border-right-style: none; border-right-width: 0px; border-top-color: rgb(0, 0, 0); border-top-style: none; border-top-width: 0px; color: black; font-family: Arial,"ms pゴシック","ms pgothic","돋움",dotum,helvetica,sans-serif; font-size-adjust: none; font-size: 18px; font-stretch: 100%; font-style: normal; font-variant: normal; font-weight: 400; letter-spacing: normal; line-height: normal; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; orphans: 2; outline-color: invert; outline-style: none; outline-width: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px; pointer-events: auto; text-align: left; text-decoration: none; text-indent: 0px; text-transform: none; vertical-align: baseline; white-space: normal; word-spacing: 0px;">
<span style="background-attachment: scroll; background-clip: border-box; background-color: transparent; background-image: none; background-origin: padding-box; background-position-x: 0px; background-position-y: 0px; background-repeat: repeat; background-size: auto; border-bottom-color: rgb(0, 0, 0); border-bottom-style: none; border-bottom-width: 0px; border-image-outset: 0; border-image-repeat: stretch; border-image-slice: 100%; border-image-source: none; border-image-width: 1; border-left-color: rgb(0, 0, 0); border-left-style: none; border-left-width: 0px; border-right-color: rgb(0, 0, 0); border-right-style: none; border-right-width: 0px; border-top-color: rgb(0, 0, 0); border-top-style: none; border-top-width: 0px; font-size: 18px; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; outline-color: invert; outline-style: none; outline-width: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px; vertical-align: baseline;"><span style="background-attachment: scroll; background-clip: border-box; background-color: transparent; background-image: none; background-origin: padding-box; background-position-x: 0px; background-position-y: 0px; background-repeat: repeat; background-size: auto; border-bottom-color: rgb(0, 0, 0); border-bottom-style: none; border-bottom-width: 0px; border-image-outset: 0; border-image-repeat: stretch; border-image-slice: 100%; border-image-source: none; border-image-width: 1; border-left-color: rgb(0, 0, 0); border-left-style: none; border-left-width: 0px; border-right-color: rgb(0, 0, 0); border-right-style: none; border-right-width: 0px; border-top-color: rgb(0, 0, 0); border-top-style: none; border-top-width: 0px; font-family: overlock; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; outline-color: invert; outline-style: none; outline-width: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px; vertical-align: baseline;">Take time to answer fully and check to make sure the person has understood you - get them to tell you what is required of them. Break the task into manageable components. Redirect to one task at a time. Use visual aids if necessary. Put a time limit on questioning. Make sure you have not given the person too many choices - that is a sure way to raise anxiety.</span></span></div>
<span style="-webkit-text-stroke-width: 0px; background-color: transparent; color: black; display: inline !important; float: none; font-family: Arial,Helvetica,sans-serif; font-size: 10px; font-style: normal; font-variant: normal; font-weight: 400; letter-spacing: normal; orphans: 2; pointer-events: none; text-align: left; text-decoration: none; text-indent: 0px; text-transform: none; white-space: normal; word-spacing: 0px; word-wrap: break-word;">
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<div class="font_7" style="-webkit-text-stroke-width: 0px; background-attachment: scroll; background-clip: border-box; background-color: transparent; background-image: none; background-origin: padding-box; background-position-x: 0px; background-position-y: 0px; background-repeat: repeat; background-size: auto; border-bottom-color: rgb(0, 0, 0); border-bottom-style: none; border-bottom-width: 0px; border-image-outset: 0; border-image-repeat: stretch; border-image-slice: 100%; border-image-source: none; border-image-width: 1; border-left-color: rgb(0, 0, 0); border-left-style: none; border-left-width: 0px; border-right-color: rgb(0, 0, 0); border-right-style: none; border-right-width: 0px; border-top-color: rgb(0, 0, 0); border-top-style: none; border-top-width: 0px; color: black; font-family: Arial,"ms pゴシック","ms pgothic","돋움",dotum,helvetica,sans-serif; font-size-adjust: none; font-size: 18px; font-stretch: 100%; font-style: normal; font-variant: normal; font-weight: 400; letter-spacing: normal; line-height: normal; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; orphans: 2; outline-color: invert; outline-style: none; outline-width: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px; pointer-events: auto; text-align: left; text-decoration: none; text-indent: 0px; text-transform: none; vertical-align: baseline; white-space: normal; word-spacing: 0px;">
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</span><br />
<div class="font_7" style="-webkit-text-stroke-width: 0px; background-attachment: scroll; background-clip: border-box; background-color: transparent; background-image: none; background-origin: padding-box; background-position-x: 0px; background-position-y: 0px; background-repeat: repeat; background-size: auto; border-bottom-color: rgb(0, 0, 0); border-bottom-style: none; border-bottom-width: 0px; border-image-outset: 0; border-image-repeat: stretch; border-image-slice: 100%; border-image-source: none; border-image-width: 1; border-left-color: rgb(0, 0, 0); border-left-style: none; border-left-width: 0px; border-right-color: rgb(0, 0, 0); border-right-style: none; border-right-width: 0px; border-top-color: rgb(0, 0, 0); border-top-style: none; border-top-width: 0px; color: black; font-family: Arial,"ms pゴシック","ms pgothic","돋움",dotum,helvetica,sans-serif; font-size-adjust: none; font-size: 18px; font-stretch: 100%; font-style: normal; font-variant: normal; font-weight: 400; letter-spacing: normal; line-height: normal; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; orphans: 2; outline-color: invert; outline-style: none; outline-width: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px; pointer-events: auto; text-align: left; text-decoration: none; text-indent: 0px; text-transform: none; vertical-align: baseline; white-space: normal; word-spacing: 0px;">
<span style="background-attachment: scroll; background-clip: border-box; background-color: transparent; background-image: none; background-origin: padding-box; background-position-x: 0px; background-position-y: 0px; background-repeat: repeat; background-size: auto; border-bottom-color: rgb(0, 0, 0); border-bottom-style: none; border-bottom-width: 0px; border-image-outset: 0; border-image-repeat: stretch; border-image-slice: 100%; border-image-source: none; border-image-width: 1; border-left-color: rgb(0, 0, 0); border-left-style: none; border-left-width: 0px; border-right-color: rgb(0, 0, 0); border-right-style: none; border-right-width: 0px; border-top-color: rgb(0, 0, 0); border-top-style: none; border-top-width: 0px; font-weight: 700; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; outline-color: invert; outline-style: none; outline-width: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px; vertical-align: baseline;"><span style="background-attachment: scroll; background-clip: border-box; background-color: transparent; background-image: none; background-origin: padding-box; background-position-x: 0px; background-position-y: 0px; background-repeat: repeat; background-size: auto; border-bottom-color: rgb(0, 0, 0); border-bottom-style: none; border-bottom-width: 0px; border-image-outset: 0; border-image-repeat: stretch; border-image-slice: 100%; border-image-source: none; border-image-width: 1; border-left-color: rgb(0, 0, 0); border-left-style: none; border-left-width: 0px; border-right-color: rgb(0, 0, 0); border-right-style: none; border-right-width: 0px; border-top-color: rgb(0, 0, 0); border-top-style: none; border-top-width: 0px; font-size: 18px; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; outline-color: invert; outline-style: none; outline-width: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px; vertical-align: baseline;"><span style="background-attachment: scroll; background-clip: border-box; background-color: transparent; background-image: none; background-origin: padding-box; background-position-x: 0px; background-position-y: 0px; background-repeat: repeat; background-size: auto; border-bottom-color: rgb(0, 0, 0); border-bottom-style: none; border-bottom-width: 0px; border-image-outset: 0; border-image-repeat: stretch; border-image-slice: 100%; border-image-source: none; border-image-width: 1; border-left-color: rgb(0, 0, 0); border-left-style: none; border-left-width: 0px; border-right-color: rgb(0, 0, 0); border-right-style: none; border-right-width: 0px; border-top-color: rgb(0, 0, 0); border-top-style: none; border-top-width: 0px; font-family: overlock; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; outline-color: invert; outline-style: none; outline-width: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px; vertical-align: baseline;">Frustration</span></span></span></div>
<span style="-webkit-text-stroke-width: 0px; background-color: transparent; color: black; display: inline !important; float: none; font-family: Arial,Helvetica,sans-serif; font-size: 10px; font-style: normal; font-variant: normal; font-weight: 400; letter-spacing: normal; orphans: 2; pointer-events: none; text-align: left; text-decoration: none; text-indent: 0px; text-transform: none; white-space: normal; word-spacing: 0px; word-wrap: break-word;">
</span><br />
<div class="font_7" style="-webkit-text-stroke-width: 0px; background-attachment: scroll; background-clip: border-box; background-color: transparent; background-image: none; background-origin: padding-box; background-position-x: 0px; background-position-y: 0px; background-repeat: repeat; background-size: auto; border-bottom-color: rgb(0, 0, 0); border-bottom-style: none; border-bottom-width: 0px; border-image-outset: 0; border-image-repeat: stretch; border-image-slice: 100%; border-image-source: none; border-image-width: 1; border-left-color: rgb(0, 0, 0); border-left-style: none; border-left-width: 0px; border-right-color: rgb(0, 0, 0); border-right-style: none; border-right-width: 0px; border-top-color: rgb(0, 0, 0); border-top-style: none; border-top-width: 0px; color: black; font-family: Arial,"ms pゴシック","ms pgothic","돋움",dotum,helvetica,sans-serif; font-size-adjust: none; font-size: 18px; font-stretch: 100%; font-style: normal; font-variant: normal; font-weight: 400; letter-spacing: normal; line-height: normal; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; orphans: 2; outline-color: invert; outline-style: none; outline-width: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px; pointer-events: auto; text-align: left; text-decoration: none; text-indent: 0px; text-transform: none; vertical-align: baseline; white-space: normal; word-spacing: 0px;">
<span style="background-attachment: scroll; background-clip: border-box; background-color: transparent; background-image: none; background-origin: padding-box; background-position-x: 0px; background-position-y: 0px; background-repeat: repeat; background-size: auto; border-bottom-color: rgb(0, 0, 0); border-bottom-style: none; border-bottom-width: 0px; border-image-outset: 0; border-image-repeat: stretch; border-image-slice: 100%; border-image-source: none; border-image-width: 1; border-left-color: rgb(0, 0, 0); border-left-style: none; border-left-width: 0px; border-right-color: rgb(0, 0, 0); border-right-style: none; border-right-width: 0px; border-top-color: rgb(0, 0, 0); border-top-style: none; border-top-width: 0px; font-size: 18px; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; outline-color: invert; outline-style: none; outline-width: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px; vertical-align: baseline;"><span style="background-attachment: scroll; background-clip: border-box; background-color: transparent; background-image: none; background-origin: padding-box; background-position-x: 0px; background-position-y: 0px; background-repeat: repeat; background-size: auto; border-bottom-color: rgb(0, 0, 0); border-bottom-style: none; border-bottom-width: 0px; border-image-outset: 0; border-image-repeat: stretch; border-image-slice: 100%; border-image-source: none; border-image-width: 1; border-left-color: rgb(0, 0, 0); border-left-style: none; border-left-width: 0px; border-right-color: rgb(0, 0, 0); border-right-style: none; border-right-width: 0px; border-top-color: rgb(0, 0, 0); border-top-style: none; border-top-width: 0px; font-family: overlock; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; outline-color: invert; outline-style: none; outline-width: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px; vertical-align: baseline;">Take time to backtrack. Ask simple closed questions (where a yes or no answer will help you quickly understand). Make sure your communication has been understood. Provide good, logical details and reasons and make sure of your facts. People with PWS appreciate being told the full facts rather than a "just because" answer.</span></span></div>
<span style="-webkit-text-stroke-width: 0px; background-color: transparent; color: black; display: inline !important; float: none; font-family: Arial,Helvetica,sans-serif; font-size: 10px; font-style: normal; font-variant: normal; font-weight: 400; letter-spacing: normal; orphans: 2; pointer-events: none; text-align: left; text-decoration: none; text-indent: 0px; text-transform: none; white-space: normal; word-spacing: 0px; word-wrap: break-word;">
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<div class="font_7" style="-webkit-text-stroke-width: 0px; background-attachment: scroll; background-clip: border-box; background-color: transparent; background-image: none; background-origin: padding-box; background-position-x: 0px; background-position-y: 0px; background-repeat: repeat; background-size: auto; border-bottom-color: rgb(0, 0, 0); border-bottom-style: none; border-bottom-width: 0px; border-image-outset: 0; border-image-repeat: stretch; border-image-slice: 100%; border-image-source: none; border-image-width: 1; border-left-color: rgb(0, 0, 0); border-left-style: none; border-left-width: 0px; border-right-color: rgb(0, 0, 0); border-right-style: none; border-right-width: 0px; border-top-color: rgb(0, 0, 0); border-top-style: none; border-top-width: 0px; color: black; font-family: Arial,"ms pゴシック","ms pgothic","돋움",dotum,helvetica,sans-serif; font-size-adjust: none; font-size: 18px; font-stretch: 100%; font-style: normal; font-variant: normal; font-weight: 400; letter-spacing: normal; line-height: normal; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; orphans: 2; outline-color: invert; outline-style: none; outline-width: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px; pointer-events: auto; text-align: left; text-decoration: none; text-indent: 0px; text-transform: none; vertical-align: baseline; white-space: normal; word-spacing: 0px;">
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<div class="font_7" style="-webkit-text-stroke-width: 0px; background-attachment: scroll; background-clip: border-box; background-color: transparent; background-image: none; background-origin: padding-box; background-position-x: 0px; background-position-y: 0px; background-repeat: repeat; background-size: auto; border-bottom-color: rgb(0, 0, 0); border-bottom-style: none; border-bottom-width: 0px; border-image-outset: 0; border-image-repeat: stretch; border-image-slice: 100%; border-image-source: none; border-image-width: 1; border-left-color: rgb(0, 0, 0); border-left-style: none; border-left-width: 0px; border-right-color: rgb(0, 0, 0); border-right-style: none; border-right-width: 0px; border-top-color: rgb(0, 0, 0); border-top-style: none; border-top-width: 0px; color: black; font-family: Arial,"ms pゴシック","ms pgothic","돋움",dotum,helvetica,sans-serif; font-size-adjust: none; font-size: 18px; font-stretch: 100%; font-style: normal; font-variant: normal; font-weight: 400; letter-spacing: normal; line-height: normal; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; orphans: 2; outline-color: invert; outline-style: none; outline-width: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px; pointer-events: auto; text-align: left; text-decoration: none; text-indent: 0px; text-transform: none; vertical-align: baseline; white-space: normal; word-spacing: 0px;">
<span style="background-attachment: scroll; background-clip: border-box; background-color: transparent; background-image: none; background-origin: padding-box; background-position-x: 0px; background-position-y: 0px; background-repeat: repeat; background-size: auto; border-bottom-color: rgb(0, 0, 0); border-bottom-style: none; border-bottom-width: 0px; border-image-outset: 0; border-image-repeat: stretch; border-image-slice: 100%; border-image-source: none; border-image-width: 1; border-left-color: rgb(0, 0, 0); border-left-style: none; border-left-width: 0px; border-right-color: rgb(0, 0, 0); border-right-style: none; border-right-width: 0px; border-top-color: rgb(0, 0, 0); border-top-style: none; border-top-width: 0px; font-weight: 700; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; outline-color: invert; outline-style: none; outline-width: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px; vertical-align: baseline;"><span style="background-attachment: scroll; background-clip: border-box; background-color: transparent; background-image: none; background-origin: padding-box; background-position-x: 0px; background-position-y: 0px; background-repeat: repeat; background-size: auto; border-bottom-color: rgb(0, 0, 0); border-bottom-style: none; border-bottom-width: 0px; border-image-outset: 0; border-image-repeat: stretch; border-image-slice: 100%; border-image-source: none; border-image-width: 1; border-left-color: rgb(0, 0, 0); border-left-style: none; border-left-width: 0px; border-right-color: rgb(0, 0, 0); border-right-style: none; border-right-width: 0px; border-top-color: rgb(0, 0, 0); border-top-style: none; border-top-width: 0px; font-size: 18px; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; outline-color: invert; outline-style: none; outline-width: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px; vertical-align: baseline;"><span style="background-attachment: scroll; background-clip: border-box; background-color: transparent; background-image: none; background-origin: padding-box; background-position-x: 0px; background-position-y: 0px; background-repeat: repeat; background-size: auto; border-bottom-color: rgb(0, 0, 0); border-bottom-style: none; border-bottom-width: 0px; border-image-outset: 0; border-image-repeat: stretch; border-image-slice: 100%; border-image-source: none; border-image-width: 1; border-left-color: rgb(0, 0, 0); border-left-style: none; border-left-width: 0px; border-right-color: rgb(0, 0, 0); border-right-style: none; border-right-width: 0px; border-top-color: rgb(0, 0, 0); border-top-style: none; border-top-width: 0px; font-family: overlock; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; outline-color: invert; outline-style: none; outline-width: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px; vertical-align: baseline;">Argumentative</span></span></span></div>
<span style="-webkit-text-stroke-width: 0px; background-color: transparent; color: black; display: inline !important; float: none; font-family: Arial,Helvetica,sans-serif; font-size: 10px; font-style: normal; font-variant: normal; font-weight: 400; letter-spacing: normal; orphans: 2; pointer-events: none; text-align: left; text-decoration: none; text-indent: 0px; text-transform: none; white-space: normal; word-spacing: 0px; word-wrap: break-word;">
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<div class="font_7" style="-webkit-text-stroke-width: 0px; background-attachment: scroll; background-clip: border-box; background-color: transparent; background-image: none; background-origin: padding-box; background-position-x: 0px; background-position-y: 0px; background-repeat: repeat; background-size: auto; border-bottom-color: rgb(0, 0, 0); border-bottom-style: none; border-bottom-width: 0px; border-image-outset: 0; border-image-repeat: stretch; border-image-slice: 100%; border-image-source: none; border-image-width: 1; border-left-color: rgb(0, 0, 0); border-left-style: none; border-left-width: 0px; border-right-color: rgb(0, 0, 0); border-right-style: none; border-right-width: 0px; border-top-color: rgb(0, 0, 0); border-top-style: none; border-top-width: 0px; color: black; font-family: Arial,"ms pゴシック","ms pgothic","돋움",dotum,helvetica,sans-serif; font-size-adjust: none; font-size: 18px; font-stretch: 100%; font-style: normal; font-variant: normal; font-weight: 400; letter-spacing: normal; line-height: normal; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; orphans: 2; outline-color: invert; outline-style: none; outline-width: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px; pointer-events: auto; text-align: left; text-decoration: none; text-indent: 0px; text-transform: none; vertical-align: baseline; white-space: normal; word-spacing: 0px;">
<span style="background-attachment: scroll; background-clip: border-box; background-color: transparent; background-image: none; background-origin: padding-box; background-position-x: 0px; background-position-y: 0px; background-repeat: repeat; background-size: auto; border-bottom-color: rgb(0, 0, 0); border-bottom-style: none; border-bottom-width: 0px; border-image-outset: 0; border-image-repeat: stretch; border-image-slice: 100%; border-image-source: none; border-image-width: 1; border-left-color: rgb(0, 0, 0); border-left-style: none; border-left-width: 0px; border-right-color: rgb(0, 0, 0); border-right-style: none; border-right-width: 0px; border-top-color: rgb(0, 0, 0); border-top-style: none; border-top-width: 0px; font-size: 18px; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; outline-color: invert; outline-style: none; outline-width: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px; vertical-align: baseline;"><span style="background-attachment: scroll; background-clip: border-box; background-color: transparent; background-image: none; background-origin: padding-box; background-position-x: 0px; background-position-y: 0px; background-repeat: repeat; background-size: auto; border-bottom-color: rgb(0, 0, 0); border-bottom-style: none; border-bottom-width: 0px; border-image-outset: 0; border-image-repeat: stretch; border-image-slice: 100%; border-image-source: none; border-image-width: 1; border-left-color: rgb(0, 0, 0); border-left-style: none; border-left-width: 0px; border-right-color: rgb(0, 0, 0); border-right-style: none; border-right-width: 0px; border-top-color: rgb(0, 0, 0); border-top-style: none; border-top-width: 0px; font-family: overlock; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; outline-color: invert; outline-style: none; outline-width: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px; vertical-align: baseline;">You won't win an argument, so don't answer back, no matter how tempting it might be. Take a break, especially if the person is becoming vocal and abusive. Ask if they'd like some time to be on their own. Try to diffuse the situation by asking questions like "tell me what happened so we can try to sort it out". Try to reach a solution or compromise and if necessary, bring in a third person to listen.</span></span></div>
<div class="font_7" style="-webkit-text-stroke-width: 0px; background-attachment: scroll; background-clip: border-box; background-color: transparent; background-image: none; background-origin: padding-box; background-position-x: 0px; background-position-y: 0px; background-repeat: repeat; background-size: auto; border-bottom-color: rgb(0, 0, 0); border-bottom-style: none; border-bottom-width: 0px; border-image-outset: 0; border-image-repeat: stretch; border-image-slice: 100%; border-image-source: none; border-image-width: 1; border-left-color: rgb(0, 0, 0); border-left-style: none; border-left-width: 0px; border-right-color: rgb(0, 0, 0); border-right-style: none; border-right-width: 0px; border-top-color: rgb(0, 0, 0); border-top-style: none; border-top-width: 0px; color: black; font-family: Arial,"ms pゴシック","ms pgothic","돋움",dotum,helvetica,sans-serif; font-size-adjust: none; font-size: 18px; font-stretch: 100%; font-style: normal; font-variant: normal; font-weight: 400; letter-spacing: normal; line-height: normal; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; orphans: 2; outline-color: invert; outline-style: none; outline-width: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px; pointer-events: auto; text-align: left; text-decoration: none; text-indent: 0px; text-transform: none; vertical-align: baseline; white-space: normal; word-spacing: 0px;">
<span style="background-attachment: scroll; background-clip: border-box; background-color: transparent; background-image: none; background-origin: padding-box; background-position-x: 0px; background-position-y: 0px; background-repeat: repeat; background-size: auto; border-bottom-color: rgb(0, 0, 0); border-bottom-style: none; border-bottom-width: 0px; border-image-outset: 0; border-image-repeat: stretch; border-image-slice: 100%; border-image-source: none; border-image-width: 1; border-left-color: rgb(0, 0, 0); border-left-style: none; border-left-width: 0px; border-right-color: rgb(0, 0, 0); border-right-style: none; border-right-width: 0px; border-top-color: rgb(0, 0, 0); border-top-style: none; border-top-width: 0px; font-size: 18px; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; outline-color: invert; outline-style: none; outline-width: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px; vertical-align: baseline;"><span style="background-attachment: scroll; background-clip: border-box; background-color: transparent; background-image: none; background-origin: padding-box; background-position-x: 0px; background-position-y: 0px; background-repeat: repeat; background-size: auto; border-bottom-color: rgb(0, 0, 0); border-bottom-style: none; border-bottom-width: 0px; border-image-outset: 0; border-image-repeat: stretch; border-image-slice: 100%; border-image-source: none; border-image-width: 1; border-left-color: rgb(0, 0, 0); border-left-style: none; border-left-width: 0px; border-right-color: rgb(0, 0, 0); border-right-style: none; border-right-width: 0px; border-top-color: rgb(0, 0, 0); border-top-style: none; border-top-width: 0px; font-family: overlock; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; outline-color: invert; outline-style: none; outline-width: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px; vertical-align: baseline;"><br /></span></span></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEggBpL2FGC4vpZX78MI-v76xkJaWcvXPAqZmIP_Zk0nmLSSrwYfF8dCbm2zRFFu1rF2jmqRVR2PvTIVhqF0UrWxnLMxQLJ20mGtjB_4rFRTMJFpqD2KfygvDWRV66DSdga74im3sBlOr7g/s1600/th9X38HIJJ.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="91" data-original-width="382" height="76" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEggBpL2FGC4vpZX78MI-v76xkJaWcvXPAqZmIP_Zk0nmLSSrwYfF8dCbm2zRFFu1rF2jmqRVR2PvTIVhqF0UrWxnLMxQLJ20mGtjB_4rFRTMJFpqD2KfygvDWRV66DSdga74im3sBlOr7g/s320/th9X38HIJJ.jpg" width="320" /></a></div>
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<div class="font_7" style="-webkit-text-stroke-width: 0px; background-attachment: scroll; background-clip: border-box; background-color: transparent; background-image: none; background-origin: padding-box; background-position-x: 0px; background-position-y: 0px; background-repeat: repeat; background-size: auto; border-bottom-color: rgb(0, 0, 0); border-bottom-style: none; border-bottom-width: 0px; border-image-outset: 0; border-image-repeat: stretch; border-image-slice: 100%; border-image-source: none; border-image-width: 1; border-left-color: rgb(0, 0, 0); border-left-style: none; border-left-width: 0px; border-right-color: rgb(0, 0, 0); border-right-style: none; border-right-width: 0px; border-top-color: rgb(0, 0, 0); border-top-style: none; border-top-width: 0px; color: black; font-family: Arial,"ms pゴシック","ms pgothic","돋움",dotum,helvetica,sans-serif; font-size-adjust: none; font-size: 18px; font-stretch: 100%; font-style: normal; font-variant: normal; font-weight: 400; letter-spacing: normal; line-height: normal; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; orphans: 2; outline-color: invert; outline-style: none; outline-width: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px; pointer-events: auto; text-align: left; text-decoration: none; text-indent: 0px; text-transform: none; vertical-align: baseline; white-space: normal; word-spacing: 0px;">
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<div class="font_7" style="-webkit-text-stroke-width: 0px; background-attachment: scroll; background-clip: border-box; background-color: transparent; background-image: none; background-origin: padding-box; background-position-x: 0px; background-position-y: 0px; background-repeat: repeat; background-size: auto; border-bottom-color: rgb(0, 0, 0); border-bottom-style: none; border-bottom-width: 0px; border-image-outset: 0; border-image-repeat: stretch; border-image-slice: 100%; border-image-source: none; border-image-width: 1; border-left-color: rgb(0, 0, 0); border-left-style: none; border-left-width: 0px; border-right-color: rgb(0, 0, 0); border-right-style: none; border-right-width: 0px; border-top-color: rgb(0, 0, 0); border-top-style: none; border-top-width: 0px; color: black; font-family: Arial,"ms pゴシック","ms pgothic","돋움",dotum,helvetica,sans-serif; font-size-adjust: none; font-size: 18px; font-stretch: 100%; font-style: normal; font-variant: normal; font-weight: 400; letter-spacing: normal; line-height: normal; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; orphans: 2; outline-color: invert; outline-style: none; outline-width: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px; pointer-events: auto; text-align: left; text-decoration: none; text-indent: 0px; text-transform: none; vertical-align: baseline; white-space: normal; word-spacing: 0px;">
<span style="background-attachment: scroll; background-clip: border-box; background-color: transparent; background-image: none; background-origin: padding-box; background-position-x: 0px; background-position-y: 0px; background-repeat: repeat; background-size: auto; border-bottom-color: rgb(0, 0, 0); border-bottom-style: none; border-bottom-width: 0px; border-image-outset: 0; border-image-repeat: stretch; border-image-slice: 100%; border-image-source: none; border-image-width: 1; border-left-color: rgb(0, 0, 0); border-left-style: none; border-left-width: 0px; border-right-color: rgb(0, 0, 0); border-right-style: none; border-right-width: 0px; border-top-color: rgb(0, 0, 0); border-top-style: none; border-top-width: 0px; font-size: 18px; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; outline-color: invert; outline-style: none; outline-width: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px; vertical-align: baseline;"><span style="background-attachment: scroll; background-clip: border-box; background-color: transparent; background-image: none; background-origin: padding-box; background-position-x: 0px; background-position-y: 0px; background-repeat: repeat; background-size: auto; border-bottom-color: rgb(0, 0, 0); border-bottom-style: none; border-bottom-width: 0px; border-image-outset: 0; border-image-repeat: stretch; border-image-slice: 100%; border-image-source: none; border-image-width: 1; border-left-color: rgb(0, 0, 0); border-left-style: none; border-left-width: 0px; border-right-color: rgb(0, 0, 0); border-right-style: none; border-right-width: 0px; border-top-color: rgb(0, 0, 0); border-top-style: none; border-top-width: 0px; font-family: overlock; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; outline-color: invert; outline-style: none; outline-width: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px; vertical-align: baseline;">Sometimes arguments come completely from left-field, especially when engaged in denial, and then, suddenly, the person with PWS has made themselves the victim and is accusing everyone of not understanding them, of being unfair, and misunderstood. Somehow, when it is perfectly obvious to everyone else that the person with PWS is in the wrong, they have neatly turned the tables on you, and you're the 'bad guy'. This just goes to prove that a concrete outcome has not yet been reached. It's better to leave things for a while, rather than engage in further argument.</span></span></div>
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<div class="font_7" style="-webkit-text-stroke-width: 0px; background-attachment: scroll; background-clip: border-box; background-color: transparent; background-image: none; background-origin: padding-box; background-position-x: 0px; background-position-y: 0px; background-repeat: repeat; background-size: auto; border-bottom-color: rgb(0, 0, 0); border-bottom-style: none; border-bottom-width: 0px; border-image-outset: 0; border-image-repeat: stretch; border-image-slice: 100%; border-image-source: none; border-image-width: 1; border-left-color: rgb(0, 0, 0); border-left-style: none; border-left-width: 0px; border-right-color: rgb(0, 0, 0); border-right-style: none; border-right-width: 0px; border-top-color: rgb(0, 0, 0); border-top-style: none; border-top-width: 0px; color: black; font-family: Arial,"ms pゴシック","ms pgothic","돋움",dotum,helvetica,sans-serif; font-size-adjust: none; font-size: 18px; font-stretch: 100%; font-style: normal; font-variant: normal; font-weight: 400; letter-spacing: normal; line-height: normal; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; orphans: 2; outline-color: invert; outline-style: none; outline-width: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px; pointer-events: auto; text-align: left; text-decoration: none; text-indent: 0px; text-transform: none; vertical-align: baseline; white-space: normal; word-spacing: 0px;">
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<div class="font_7" style="-webkit-text-stroke-width: 0px; background-attachment: scroll; background-clip: border-box; background-color: transparent; background-image: none; background-origin: padding-box; background-position-x: 0px; background-position-y: 0px; background-repeat: repeat; background-size: auto; border-bottom-color: rgb(0, 0, 0); border-bottom-style: none; border-bottom-width: 0px; border-image-outset: 0; border-image-repeat: stretch; border-image-slice: 100%; border-image-source: none; border-image-width: 1; border-left-color: rgb(0, 0, 0); border-left-style: none; border-left-width: 0px; border-right-color: rgb(0, 0, 0); border-right-style: none; border-right-width: 0px; border-top-color: rgb(0, 0, 0); border-top-style: none; border-top-width: 0px; color: black; font-family: Arial,"ms pゴシック","ms pgothic","돋움",dotum,helvetica,sans-serif; font-size-adjust: none; font-size: 18px; font-stretch: 100%; font-style: normal; font-variant: normal; font-weight: 400; letter-spacing: normal; line-height: normal; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; orphans: 2; outline-color: invert; outline-style: none; outline-width: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px; pointer-events: auto; text-align: left; text-decoration: none; text-indent: 0px; text-transform: none; vertical-align: baseline; white-space: normal; word-spacing: 0px;">
<span style="background-attachment: scroll; background-clip: border-box; background-color: transparent; background-image: none; background-origin: padding-box; background-position-x: 0px; background-position-y: 0px; background-repeat: repeat; background-size: auto; border-bottom-color: rgb(0, 0, 0); border-bottom-style: none; border-bottom-width: 0px; border-image-outset: 0; border-image-repeat: stretch; border-image-slice: 100%; border-image-source: none; border-image-width: 1; border-left-color: rgb(0, 0, 0); border-left-style: none; border-left-width: 0px; border-right-color: rgb(0, 0, 0); border-right-style: none; border-right-width: 0px; border-top-color: rgb(0, 0, 0); border-top-style: none; border-top-width: 0px; font-size: 18px; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; outline-color: invert; outline-style: none; outline-width: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px; vertical-align: baseline;"><span style="background-attachment: scroll; background-clip: border-box; background-color: transparent; background-image: none; background-origin: padding-box; background-position-x: 0px; background-position-y: 0px; background-repeat: repeat; background-size: auto; border-bottom-color: rgb(0, 0, 0); border-bottom-style: none; border-bottom-width: 0px; border-image-outset: 0; border-image-repeat: stretch; border-image-slice: 100%; border-image-source: none; border-image-width: 1; border-left-color: rgb(0, 0, 0); border-left-style: none; border-left-width: 0px; border-right-color: rgb(0, 0, 0); border-right-style: none; border-right-width: 0px; border-top-color: rgb(0, 0, 0); border-top-style: none; border-top-width: 0px; font-family: overlock; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; outline-color: invert; outline-style: none; outline-width: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px; vertical-align: baseline;">Sometimes you can negotiate a catch phrase that the person feels comfortable with ("this is going nowhere, let's both back down a bit", or "can you find a way to resolve this for me?"). This is a good way of empowering the person to find a way to reach a compromise.</span></span></div>
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<div class="font_7" style="-webkit-text-stroke-width: 0px; background-attachment: scroll; background-clip: border-box; background-color: transparent; background-image: none; background-origin: padding-box; background-position-x: 0px; background-position-y: 0px; background-repeat: repeat; background-size: auto; border-bottom-color: rgb(0, 0, 0); border-bottom-style: none; border-bottom-width: 0px; border-image-outset: 0; border-image-repeat: stretch; border-image-slice: 100%; border-image-source: none; border-image-width: 1; border-left-color: rgb(0, 0, 0); border-left-style: none; border-left-width: 0px; border-right-color: rgb(0, 0, 0); border-right-style: none; border-right-width: 0px; border-top-color: rgb(0, 0, 0); border-top-style: none; border-top-width: 0px; color: black; font-family: Arial,"ms pゴシック","ms pgothic","돋움",dotum,helvetica,sans-serif; font-size-adjust: none; font-size: 18px; font-stretch: 100%; font-style: normal; font-variant: normal; font-weight: 400; letter-spacing: normal; line-height: normal; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; orphans: 2; outline-color: invert; outline-style: none; outline-width: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px; pointer-events: auto; text-align: left; text-decoration: none; text-indent: 0px; text-transform: none; vertical-align: baseline; white-space: normal; word-spacing: 0px;">
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<div class="font_7" style="-webkit-text-stroke-width: 0px; background-attachment: scroll; background-clip: border-box; background-color: transparent; background-image: none; background-origin: padding-box; background-position-x: 0px; background-position-y: 0px; background-repeat: repeat; background-size: auto; border-bottom-color: rgb(0, 0, 0); border-bottom-style: none; border-bottom-width: 0px; border-image-outset: 0; border-image-repeat: stretch; border-image-slice: 100%; border-image-source: none; border-image-width: 1; border-left-color: rgb(0, 0, 0); border-left-style: none; border-left-width: 0px; border-right-color: rgb(0, 0, 0); border-right-style: none; border-right-width: 0px; border-top-color: rgb(0, 0, 0); border-top-style: none; border-top-width: 0px; color: black; font-family: Arial,"ms pゴシック","ms pgothic","돋움",dotum,helvetica,sans-serif; font-size-adjust: none; font-size: 18px; font-stretch: 100%; font-style: normal; font-variant: normal; font-weight: 400; letter-spacing: normal; line-height: normal; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; orphans: 2; outline-color: invert; outline-style: none; outline-width: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px; pointer-events: auto; text-align: left; text-decoration: none; text-indent: 0px; text-transform: none; vertical-align: baseline; white-space: normal; word-spacing: 0px;">
<span style="background-attachment: scroll; background-clip: border-box; background-color: transparent; background-image: none; background-origin: padding-box; background-position-x: 0px; background-position-y: 0px; background-repeat: repeat; background-size: auto; border-bottom-color: rgb(0, 0, 0); border-bottom-style: none; border-bottom-width: 0px; border-image-outset: 0; border-image-repeat: stretch; border-image-slice: 100%; border-image-source: none; border-image-width: 1; border-left-color: rgb(0, 0, 0); border-left-style: none; border-left-width: 0px; border-right-color: rgb(0, 0, 0); border-right-style: none; border-right-width: 0px; border-top-color: rgb(0, 0, 0); border-top-style: none; border-top-width: 0px; font-size: 18px; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; outline-color: invert; outline-style: none; outline-width: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px; vertical-align: baseline;"><span style="background-attachment: scroll; background-clip: border-box; background-color: transparent; background-image: none; background-origin: padding-box; background-position-x: 0px; background-position-y: 0px; background-repeat: repeat; background-size: auto; border-bottom-color: rgb(0, 0, 0); border-bottom-style: none; border-bottom-width: 0px; border-image-outset: 0; border-image-repeat: stretch; border-image-slice: 100%; border-image-source: none; border-image-width: 1; border-left-color: rgb(0, 0, 0); border-left-style: none; border-left-width: 0px; border-right-color: rgb(0, 0, 0); border-right-style: none; border-right-width: 0px; border-top-color: rgb(0, 0, 0); border-top-style: none; border-top-width: 0px; font-family: overlock; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; outline-color: invert; outline-style: none; outline-width: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px; vertical-align: baseline;"><span style="background-attachment: scroll; background-clip: border-box; background-color: transparent; background-image: none; background-origin: padding-box; background-position-x: 0px; background-position-y: 0px; background-repeat: repeat; background-size: auto; border-bottom-color: rgb(0, 0, 0); border-bottom-style: none; border-bottom-width: 0px; border-image-outset: 0; border-image-repeat: stretch; border-image-slice: 100%; border-image-source: none; border-image-width: 1; border-left-color: rgb(0, 0, 0); border-left-style: none; border-left-width: 0px; border-right-color: rgb(0, 0, 0); border-right-style: none; border-right-width: 0px; border-top-color: rgb(0, 0, 0); border-top-style: none; border-top-width: 0px; font-weight: 700; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; outline-color: invert; outline-style: none; outline-width: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px; vertical-align: baseline;">Drop in Communication Levels</span></span></span></div>
<div class="font_7" style="-webkit-text-stroke-width: 0px; background-attachment: scroll; background-clip: border-box; background-color: transparent; background-image: none; background-origin: padding-box; background-position-x: 0px; background-position-y: 0px; background-repeat: repeat; background-size: auto; border-bottom-color: rgb(0, 0, 0); border-bottom-style: none; border-bottom-width: 0px; border-image-outset: 0; border-image-repeat: stretch; border-image-slice: 100%; border-image-source: none; border-image-width: 1; border-left-color: rgb(0, 0, 0); border-left-style: none; border-left-width: 0px; border-right-color: rgb(0, 0, 0); border-right-style: none; border-right-width: 0px; border-top-color: rgb(0, 0, 0); border-top-style: none; border-top-width: 0px; color: black; font-family: Arial,"ms pゴシック","ms pgothic","돋움",dotum,helvetica,sans-serif; font-size-adjust: none; font-size: 18px; font-stretch: 100%; font-style: normal; font-variant: normal; font-weight: 400; letter-spacing: normal; line-height: normal; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; orphans: 2; outline-color: invert; outline-style: none; outline-width: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px; pointer-events: auto; text-align: left; text-decoration: none; text-indent: 0px; text-transform: none; vertical-align: baseline; white-space: normal; word-spacing: 0px;">
<span style="font-family: overlock;">T<span style="background-attachment: scroll; background-clip: border-box; background-color: transparent; background-image: none; background-origin: padding-box; background-position-x: 0px; background-position-y: 0px; background-repeat: repeat; background-size: auto; border-bottom-color: rgb(0, 0, 0); border-bottom-style: none; border-bottom-width: 0px; border-image-outset: 0; border-image-repeat: stretch; border-image-slice: 100%; border-image-source: none; border-image-width: 1; border-left-color: rgb(0, 0, 0); border-left-style: none; border-left-width: 0px; border-right-color: rgb(0, 0, 0); border-right-style: none; border-right-width: 0px; border-top-color: rgb(0, 0, 0); border-top-style: none; border-top-width: 0px; font-size: 18px; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; outline-color: invert; outline-style: none; outline-width: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px; vertical-align: baseline;"><span style="background: 0px 0px; border-image: none; border: 0px rgb(0, 0, 0); margin: 0px; outline: 0px; padding: 0px; vertical-align: baseline;">his is not a common thing, most people preferring to raise the level of communication! However, when it does happen, you will notice the person seeming to withdraw into themselves, maybe start crying. Take a short break, give the person time to collect themselves. Then give them something important to do - a task they might enjoy. Don't insist if they don't want to, but leave the option open.</span></span></span></div>
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<div class="font_7" style="-webkit-text-stroke-width: 0px; background-attachment: scroll; background-clip: border-box; background-color: transparent; background-image: none; background-origin: padding-box; background-position-x: 0px; background-position-y: 0px; background-repeat: repeat; background-size: auto; border-bottom-color: rgb(0, 0, 0); border-bottom-style: none; border-bottom-width: 0px; border-image-outset: 0; border-image-repeat: stretch; border-image-slice: 100%; border-image-source: none; border-image-width: 1; border-left-color: rgb(0, 0, 0); border-left-style: none; border-left-width: 0px; border-right-color: rgb(0, 0, 0); border-right-style: none; border-right-width: 0px; border-top-color: rgb(0, 0, 0); border-top-style: none; border-top-width: 0px; color: black; font-family: Arial,"ms pゴシック","ms pgothic","돋움",dotum,helvetica,sans-serif; font-size-adjust: none; font-size: 18px; font-stretch: 100%; font-style: normal; font-variant: normal; font-weight: 400; letter-spacing: normal; line-height: normal; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; orphans: 2; outline-color: invert; outline-style: none; outline-width: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px; pointer-events: auto; text-align: left; text-decoration: none; text-indent: 0px; text-transform: none; vertical-align: baseline; white-space: normal; word-spacing: 0px;">
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<div class="font_7" style="-webkit-text-stroke-width: 0px; background-attachment: scroll; background-clip: border-box; background-color: transparent; background-image: none; background-origin: padding-box; background-position-x: 0px; background-position-y: 0px; background-repeat: repeat; background-size: auto; border-bottom-color: rgb(0, 0, 0); border-bottom-style: none; border-bottom-width: 0px; border-image-outset: 0; border-image-repeat: stretch; border-image-slice: 100%; border-image-source: none; border-image-width: 1; border-left-color: rgb(0, 0, 0); border-left-style: none; border-left-width: 0px; border-right-color: rgb(0, 0, 0); border-right-style: none; border-right-width: 0px; border-top-color: rgb(0, 0, 0); border-top-style: none; border-top-width: 0px; color: black; font-family: Arial,"ms pゴシック","ms pgothic","돋움",dotum,helvetica,sans-serif; font-size-adjust: none; font-size: 18px; font-stretch: 100%; font-style: normal; font-variant: normal; font-weight: 400; letter-spacing: normal; line-height: normal; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; orphans: 2; outline-color: invert; outline-style: none; outline-width: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px; pointer-events: auto; text-align: left; text-decoration: none; text-indent: 0px; text-transform: none; vertical-align: baseline; white-space: normal; word-spacing: 0px;">
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<span style="background-attachment: scroll; background-clip: border-box; background-color: transparent; background-image: none; background-origin: padding-box; background-position-x: 0px; background-position-y: 0px; background-repeat: repeat; background-size: auto; border-bottom-color: rgb(0, 0, 0); border-bottom-style: none; border-bottom-width: 0px; border-image-outset: 0; border-image-repeat: stretch; border-image-slice: 100%; border-image-source: none; border-image-width: 1; border-left-color: rgb(0, 0, 0); border-left-style: none; border-left-width: 0px; border-right-color: rgb(0, 0, 0); border-right-style: none; border-right-width: 0px; border-top-color: rgb(0, 0, 0); border-top-style: none; border-top-width: 0px; font-size: 18px; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; outline-color: invert; outline-style: none; outline-width: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px; vertical-align: baseline;"><span style="background-attachment: scroll; background-clip: border-box; background-color: transparent; background-image: none; background-origin: padding-box; background-position-x: 0px; background-position-y: 0px; background-repeat: repeat; background-size: auto; border-bottom-color: rgb(0, 0, 0); border-bottom-style: none; border-bottom-width: 0px; border-image-outset: 0; border-image-repeat: stretch; border-image-slice: 100%; border-image-source: none; border-image-width: 1; border-left-color: rgb(0, 0, 0); border-left-style: none; border-left-width: 0px; border-right-color: rgb(0, 0, 0); border-right-style: none; border-right-width: 0px; border-top-color: rgb(0, 0, 0); border-top-style: none; border-top-width: 0px; font-family: overlock; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; outline-color: invert; outline-style: none; outline-width: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px; vertical-align: baseline;">This is sometimes linked with autistic-like behaviours and can present as possessiveness, absolute insistence, accumulation of possessions, repetitive behaviours, may seem </span></span></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgq1UB1C5yMzPpdWxuUjkYM0B07BmlJNfl6nR5dGqYlRatxCvAHJEAYO80XSXTd3Bz3f_JZWLqzqrlU7ti9ejJHXetIFv0ELhPf3EuJtabvedTuVDm7LBb_UrGqOiI3HAixZ5F9vjKQqe4/s1600/obsessive.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" data-original-height="215" data-original-width="375" height="114" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgq1UB1C5yMzPpdWxuUjkYM0B07BmlJNfl6nR5dGqYlRatxCvAHJEAYO80XSXTd3Bz3f_JZWLqzqrlU7ti9ejJHXetIFv0ELhPf3EuJtabvedTuVDm7LBb_UrGqOiI3HAixZ5F9vjKQqe4/s200/obsessive.jpg" width="200" /></a></div>
irrational. A task that might appear simple, becomes extremely time-consuming and can only be done their way. This might often happen just as you're leaving the house, about to do something, etc. Reasoning might not be possible and sometimes a person needs to learn from their mistakes and if they miss out on an outing, so be it. But make sure you have Plan B!<br />
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<span style="background-attachment: scroll; background-clip: border-box; background-color: transparent; background-image: none; background-origin: padding-box; background-position-x: 0px; background-position-y: 0px; background-repeat: repeat; background-size: auto; border-bottom-color: rgb(0, 0, 0); border-bottom-style: none; border-bottom-width: 0px; border-image-outset: 0; border-image-repeat: stretch; border-image-slice: 100%; border-image-source: none; border-image-width: 1; border-left-color: rgb(0, 0, 0); border-left-style: none; border-left-width: 0px; border-right-color: rgb(0, 0, 0); border-right-style: none; border-right-width: 0px; border-top-color: rgb(0, 0, 0); border-top-style: none; border-top-width: 0px; font-size: 18px; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; outline-color: invert; outline-style: none; outline-width: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px; vertical-align: baseline;"><span style="background-attachment: scroll; background-clip: border-box; background-color: transparent; background-image: none; background-origin: padding-box; background-position-x: 0px; background-position-y: 0px; background-repeat: repeat; background-size: auto; border-bottom-color: rgb(0, 0, 0); border-bottom-style: none; border-bottom-width: 0px; border-image-outset: 0; border-image-repeat: stretch; border-image-slice: 100%; border-image-source: none; border-image-width: 1; border-left-color: rgb(0, 0, 0); border-left-style: none; border-left-width: 0px; border-right-color: rgb(0, 0, 0); border-right-style: none; border-right-width: 0px; border-top-color: rgb(0, 0, 0); border-top-style: none; border-top-width: 0px; font-family: overlock; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; outline-color: invert; outline-style: none; outline-width: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px; vertical-align: baseline;">These happen. No matter how well prepared you think you are, how well you think you have your strategies planned, meltdowns and blow-outs happen. You might have missed a precursor, or trigger, missed noticing a communication breakdown, and by the time you've realised it, it's way too late.</span></span></div>
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<span style="background-attachment: scroll; background-clip: border-box; background-color: transparent; background-image: none; background-origin: padding-box; background-position-x: 0px; background-position-y: 0px; background-repeat: repeat; background-size: auto; border-bottom-color: rgb(0, 0, 0); border-bottom-style: none; border-bottom-width: 0px; border-image-outset: 0; border-image-repeat: stretch; border-image-slice: 100%; border-image-source: none; border-image-width: 1; border-left-color: rgb(0, 0, 0); border-left-style: none; border-left-width: 0px; border-right-color: rgb(0, 0, 0); border-right-style: none; border-right-width: 0px; border-top-color: rgb(0, 0, 0); border-top-style: none; border-top-width: 0px; font-size: 18px; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; outline-color: invert; outline-style: none; outline-width: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px; vertical-align: baseline;"><span style="background-attachment: scroll; background-clip: border-box; background-color: transparent; background-image: none; background-origin: padding-box; background-position-x: 0px; background-position-y: 0px; background-repeat: repeat; background-size: auto; border-bottom-color: rgb(0, 0, 0); border-bottom-style: none; border-bottom-width: 0px; border-image-outset: 0; border-image-repeat: stretch; border-image-slice: 100%; border-image-source: none; border-image-width: 1; border-left-color: rgb(0, 0, 0); border-left-style: none; border-left-width: 0px; border-right-color: rgb(0, 0, 0); border-right-style: none; border-right-width: 0px; border-top-color: rgb(0, 0, 0); border-top-style: none; border-top-width: 0px; font-family: overlock; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; outline-color: invert; outline-style: none; outline-width: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px; vertical-align: baseline;">During a meltdown, make sure the person is safe, does not have access to sharp tools, breakable objects and so on. Make sure everyone else (including you) is safe. You will have to wait this one through - it will burn out, given time. During the recovery phase, you have only one duty - make sure you do not re-ignite the situation! Stay quiet, give the person space, play quiet music, carry on as though everything were normal. It can be hard to do, but it is the best way to bring a person out of a meltdown. And, please, don't forget - this is the syndrome working here.</span></span></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhVxEToE8vsXkIkGa7UXiYQC213exPLoLWTfMZvD5_OuR2AhKQzpDjVxopnBkbdqLEOfsogQr0YDhDF38YC9-6s8qon41fxNI_mW7bPzOqnheVueJX5ymVDqfF1-d7tzUxkvbVQxGTNhQo/s1600/apologising.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" data-original-height="255" data-original-width="253" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhVxEToE8vsXkIkGa7UXiYQC213exPLoLWTfMZvD5_OuR2AhKQzpDjVxopnBkbdqLEOfsogQr0YDhDF38YC9-6s8qon41fxNI_mW7bPzOqnheVueJX5ymVDqfF1-d7tzUxkvbVQxGTNhQo/s1600/apologising.jpg" /></a></div>
<div class="font_7" style="-webkit-text-stroke-width: 0px; background-attachment: scroll; background-clip: border-box; background-color: transparent; background-image: none; background-origin: padding-box; background-position-x: 0px; background-position-y: 0px; background-repeat: repeat; background-size: auto; border-bottom-color: rgb(0, 0, 0); border-bottom-style: none; border-bottom-width: 0px; border-image-outset: 0; border-image-repeat: stretch; border-image-slice: 100%; border-image-source: none; border-image-width: 1; border-left-color: rgb(0, 0, 0); border-left-style: none; border-left-width: 0px; border-right-color: rgb(0, 0, 0); border-right-style: none; border-right-width: 0px; border-top-color: rgb(0, 0, 0); border-top-style: none; border-top-width: 0px; color: black; font-family: Arial,"ms pゴシック","ms pgothic","돋움",dotum,helvetica,sans-serif; font-size-adjust: none; font-size: 18px; font-stretch: 100%; font-style: normal; font-variant: normal; font-weight: 400; letter-spacing: normal; line-height: normal; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; orphans: 2; outline-color: invert; outline-style: none; outline-width: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px; pointer-events: auto; text-align: left; text-decoration: none; text-indent: 0px; text-transform: none; vertical-align: baseline; white-space: normal; word-spacing: 0px;">
<span style="background-attachment: scroll; background-clip: border-box; background-color: transparent; background-image: none; background-origin: padding-box; background-position-x: 0px; background-position-y: 0px; background-repeat: repeat; background-size: auto; border-bottom-color: rgb(0, 0, 0); border-bottom-style: none; border-bottom-width: 0px; border-image-outset: 0; border-image-repeat: stretch; border-image-slice: 100%; border-image-source: none; border-image-width: 1; border-left-color: rgb(0, 0, 0); border-left-style: none; border-left-width: 0px; border-right-color: rgb(0, 0, 0); border-right-style: none; border-right-width: 0px; border-top-color: rgb(0, 0, 0); border-top-style: none; border-top-width: 0px; font-size: 18px; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; outline-color: invert; outline-style: none; outline-width: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px; vertical-align: baseline;"><span style="background-attachment: scroll; background-clip: border-box; background-color: transparent; background-image: none; background-origin: padding-box; background-position-x: 0px; background-position-y: 0px; background-repeat: repeat; background-size: auto; border-bottom-color: rgb(0, 0, 0); border-bottom-style: none; border-bottom-width: 0px; border-image-outset: 0; border-image-repeat: stretch; border-image-slice: 100%; border-image-source: none; border-image-width: 1; border-left-color: rgb(0, 0, 0); border-left-style: none; border-left-width: 0px; border-right-color: rgb(0, 0, 0); border-right-style: none; border-right-width: 0px; border-top-color: rgb(0, 0, 0); border-top-style: none; border-top-width: 0px; font-family: overlock; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; outline-color: invert; outline-style: none; outline-width: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px; vertical-align: baseline;">When everything has calmed down - maybe the person with PW has had a sleep - you will probably find they will apologise for their behaviour. Nearly every person with PW I have ever met (and there have been many!) apologises and asks forgiveness. Accept the apology quietly. Now is the time to ask if they want to talk about it - if the answer is no, do not persist.</span></span></div>
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<div class="font_7" style="-webkit-text-stroke-width: 0px; background-attachment: scroll; background-clip: border-box; background-color: transparent; background-image: none; background-origin: padding-box; background-position-x: 0px; background-position-y: 0px; background-repeat: repeat; background-size: auto; border-bottom-color: rgb(0, 0, 0); border-bottom-style: none; border-bottom-width: 0px; border-image-outset: 0; border-image-repeat: stretch; border-image-slice: 100%; border-image-source: none; border-image-width: 1; border-left-color: rgb(0, 0, 0); border-left-style: none; border-left-width: 0px; border-right-color: rgb(0, 0, 0); border-right-style: none; border-right-width: 0px; border-top-color: rgb(0, 0, 0); border-top-style: none; border-top-width: 0px; color: black; font-family: Arial,"ms pゴシック","ms pgothic","돋움",dotum,helvetica,sans-serif; font-size-adjust: none; font-size: 18px; font-stretch: 100%; font-style: normal; font-variant: normal; font-weight: 400; letter-spacing: normal; line-height: normal; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; orphans: 2; outline-color: invert; outline-style: none; outline-width: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px; pointer-events: auto; text-align: left; text-decoration: none; text-indent: 0px; text-transform: none; vertical-align: baseline; white-space: normal; word-spacing: 0px;">
<span style="background-attachment: scroll; background-clip: border-box; background-color: transparent; background-image: none; background-origin: padding-box; background-position-x: 0px; background-position-y: 0px; background-repeat: repeat; background-size: auto; border-bottom-color: rgb(0, 0, 0); border-bottom-style: none; border-bottom-width: 0px; border-image-outset: 0; border-image-repeat: stretch; border-image-slice: 100%; border-image-source: none; border-image-width: 1; border-left-color: rgb(0, 0, 0); border-left-style: none; border-left-width: 0px; border-right-color: rgb(0, 0, 0); border-right-style: none; border-right-width: 0px; border-top-color: rgb(0, 0, 0); border-top-style: none; border-top-width: 0px; font-size: 18px; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; outline-color: invert; outline-style: none; outline-width: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px; vertical-align: baseline;"><span style="background-attachment: scroll; background-clip: border-box; background-color: transparent; background-image: none; background-origin: padding-box; background-position-x: 0px; background-position-y: 0px; background-repeat: repeat; background-size: auto; border-bottom-color: rgb(0, 0, 0); border-bottom-style: none; border-bottom-width: 0px; border-image-outset: 0; border-image-repeat: stretch; border-image-slice: 100%; border-image-source: none; border-image-width: 1; border-left-color: rgb(0, 0, 0); border-left-style: none; border-left-width: 0px; border-right-color: rgb(0, 0, 0); border-right-style: none; border-right-width: 0px; border-top-color: rgb(0, 0, 0); border-top-style: none; border-top-width: 0px; font-family: overlock; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; outline-color: invert; outline-style: none; outline-width: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px; vertical-align: baseline;">I once asked my daughter what it was like when she was in the middle of a melt-down. Her answer was that there was nothing she could do. It was like a volcano and she had to let it finish itself. She couldn't stop it. I thought that was an interesting insight.</span></span></div>
<div class="font_7" style="-webkit-text-stroke-width: 0px; background-attachment: scroll; background-clip: border-box; background-color: transparent; background-image: none; background-origin: padding-box; background-position-x: 0px; background-position-y: 0px; background-repeat: repeat; background-size: auto; border-bottom-color: rgb(0, 0, 0); border-bottom-style: none; border-bottom-width: 0px; border-image-outset: 0; border-image-repeat: stretch; border-image-slice: 100%; border-image-source: none; border-image-width: 1; border-left-color: rgb(0, 0, 0); border-left-style: none; border-left-width: 0px; border-right-color: rgb(0, 0, 0); border-right-style: none; border-right-width: 0px; border-top-color: rgb(0, 0, 0); border-top-style: none; border-top-width: 0px; color: black; font-family: Arial,"ms pゴシック","ms pgothic","돋움",dotum,helvetica,sans-serif; font-size-adjust: none; font-size: 18px; font-stretch: 100%; font-style: normal; font-variant: normal; font-weight: 400; letter-spacing: normal; line-height: normal; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; orphans: 2; outline-color: invert; outline-style: none; outline-width: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px; pointer-events: auto; text-align: left; text-decoration: none; text-indent: 0px; text-transform: none; vertical-align: baseline; white-space: normal; word-spacing: 0px;">
<span style="background-attachment: scroll; background-clip: border-box; background-color: transparent; background-image: none; background-origin: padding-box; background-position-x: 0px; background-position-y: 0px; background-repeat: repeat; background-size: auto; border-bottom-color: rgb(0, 0, 0); border-bottom-style: none; border-bottom-width: 0px; border-image-outset: 0; border-image-repeat: stretch; border-image-slice: 100%; border-image-source: none; border-image-width: 1; border-left-color: rgb(0, 0, 0); border-left-style: none; border-left-width: 0px; border-right-color: rgb(0, 0, 0); border-right-style: none; border-right-width: 0px; border-top-color: rgb(0, 0, 0); border-top-style: none; border-top-width: 0px; font-size: 18px; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; outline-color: invert; outline-style: none; outline-width: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px; vertical-align: baseline;"><span style="background-attachment: scroll; background-clip: border-box; background-color: transparent; background-image: none; background-origin: padding-box; background-position-x: 0px; background-position-y: 0px; background-repeat: repeat; background-size: auto; border-bottom-color: rgb(0, 0, 0); border-bottom-style: none; border-bottom-width: 0px; border-image-outset: 0; border-image-repeat: stretch; border-image-slice: 100%; border-image-source: none; border-image-width: 1; border-left-color: rgb(0, 0, 0); border-left-style: none; border-left-width: 0px; border-right-color: rgb(0, 0, 0); border-right-style: none; border-right-width: 0px; border-top-color: rgb(0, 0, 0); border-top-style: none; border-top-width: 0px; font-family: overlock; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; outline-color: invert; outline-style: none; outline-width: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px; vertical-align: baseline;"><br /></span></span></div>
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<span style="background-attachment: scroll; background-clip: border-box; background-color: transparent; background-image: none; background-origin: padding-box; background-position-x: 0px; background-position-y: 0px; background-repeat: repeat; background-size: auto; border-bottom-color: rgb(0, 0, 0); border-bottom-style: none; border-bottom-width: 0px; border-image-outset: 0; border-image-repeat: stretch; border-image-slice: 100%; border-image-source: none; border-image-width: 1; border-left-color: rgb(0, 0, 0); border-left-style: none; border-left-width: 0px; border-right-color: rgb(0, 0, 0); border-right-style: none; border-right-width: 0px; border-top-color: rgb(0, 0, 0); border-top-style: none; border-top-width: 0px; font-size: 18px; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; outline-color: invert; outline-style: none; outline-width: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px; vertical-align: baseline;"><span style="background-attachment: scroll; background-clip: border-box; background-color: transparent; background-image: none; background-origin: padding-box; background-position-x: 0px; background-position-y: 0px; background-repeat: repeat; background-size: auto; border-bottom-color: rgb(0, 0, 0); border-bottom-style: none; border-bottom-width: 0px; border-image-outset: 0; border-image-repeat: stretch; border-image-slice: 100%; border-image-source: none; border-image-width: 1; border-left-color: rgb(0, 0, 0); border-left-style: none; border-left-width: 0px; border-right-color: rgb(0, 0, 0); border-right-style: none; border-right-width: 0px; border-top-color: rgb(0, 0, 0); border-top-style: none; border-top-width: 0px; font-family: overlock; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; outline-color: invert; outline-style: none; outline-width: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px; vertical-align: baseline;"><i>These are just my own thoughts on behaviour and how to interpret it and maybe even understand it a little better ~ Linda Thornton</i></span></span></div>
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Tui Chizownhttp://www.blogger.com/profile/11362569853162067460noreply@blogger.com0tag:blogger.com,1999:blog-1343067279870496201.post-9841606003503087362018-05-07T08:14:00.000+12:002018-05-09T09:41:21.272+12:00What Price a Syndrome<div dir="ltr" style="text-align: left;" trbidi="on">
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<div class="MsoNormal">
May is PWS Awareness Month around the world, and recently I found myself looking back over
the last 34 and mentally totting up the cost of having a child born with a
syndrome. <span style="mso-spacerun: yes;"> </span>Not the financial cost: the
emotional cost, and the cost of awareness. <span style="mso-spacerun: yes;"> </span>In this particular case,
our youngest daughter was born with Prader-Willi Syndrome 34 years ago when no
one really knew anything about it, much less be able to tell me the cost it
would incur to our family.<span style="mso-spacerun: yes;"> </span>Had I known
even then, I wouldn’t have been able to do much anyhow.<span style="mso-spacerun: yes;"> </span>In 1984 not much had changed in the
scientific understanding since PWS was first identified in 1956.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
I was brought up in the Baby-boomer years, the tail-end of a
time when doctors were still Gods, when politicians were benign, rather helpful
people who talked a lot in Parliament and ate and drank a lot at the local watering hole.<span style="mso-spacerun: yes;"> </span>There was a general acceptance that we had
the best health system in the world and were leaders in looking after the poor
and needy.<span style="mso-spacerun: yes;"> </span>Most of us grew up still
thinking that.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
As first children born to parents who had endured the war
years, we wanted for nothing.<span style="mso-spacerun: yes;"> </span>Visits
from Plunket nurses, school milk, free education. <span style="mso-spacerun: yes;"> </span>Growing up in the 50s, I remember long summer
holidays, listening to favourite radio programmes, playing in the streets and
the parks til dusk, walking to and from school, safe in the knowledge that
nothing and no one would harm us.<span style="mso-spacerun: yes;"> </span>It was
a formative childhood about to take a huge tumble into adulthood.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Along came the Muldoon years –
the Muldoon* family lived just down the street from
us and my father would tip his hat to Muldoon (“<i style="mso-bidi-font-style: normal;">Mister</i><span style="mso-spacerun: yes;"> </span>Muldoon,
from you!”) if ever he saw the Government car coming down the road.<span style="mso-spacerun: yes;"> </span>He approved of women in Parliament, only if
they knew their place, so he heartily<span style="mso-spacerun: yes;">
</span>disapproved of Marilyn
Waring**.<span style="mso-spacerun: yes;"> </span>Approval of the Vietnam War was a priority in
our household and woe betide any teenage daughter who dared venture a contrary
opinion.<span style="mso-spacerun: yes;"> </span>Women’s Lib mystified him.<span style="mso-spacerun: yes;"> </span>What was the point? My father was the head of
the household and such was the hierarchical system that what he said,
went.<span style="mso-spacerun: yes;"> </span>Whoever was at the top of whatever
system, therefore, must be right, so years later after my father had died and when
my daughter was born with Prader-Willi Syndrome, my expectation was that
whoever was in charge would know all the answers.</div>
<div class="MsoNormal">
<br /></div>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgLEGFmU2E-HaMKE3ZauQog2HdlBtdKnMuRI_VIZS4TEcUl0M486UI9u6A2QPNpn1WduNfNFPpsIw5s7mnGkt2EF7Ntt1C6g-a2JvmFVkrzo5EEaUFDjIlMdBKRfsh8IFaoIU-LPUY3cJU/s1600/5+months.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" data-original-height="698" data-original-width="424" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgLEGFmU2E-HaMKE3ZauQog2HdlBtdKnMuRI_VIZS4TEcUl0M486UI9u6A2QPNpn1WduNfNFPpsIw5s7mnGkt2EF7Ntt1C6g-a2JvmFVkrzo5EEaUFDjIlMdBKRfsh8IFaoIU-LPUY3cJU/s200/5+months.jpg" width="121" /></a></div>
<div class="MsoNormal">
They didn’t.<span style="mso-spacerun: yes;"> </span>Tests in
hospital, mutterings from groups of doctors on their rounds, hastily scrawled
notes hidden from my view, and no answers.<span style="mso-spacerun: yes;">
</span>Apart from a nurse whose arrogance led her to speculate that my baby
probably had brain damage. My world was shattered.<span style="mso-spacerun: yes;"> </span>Not just the emotional collapse of having a
child with an unidentified syndrome, but my faith in the hierarchical system
that my father led me to believe was infallible, was shattered.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Thus began the long haul to adulthood.<span style="mso-spacerun: yes;"> </span>Three years of listening to doctors make
vague assumptions about my child’s condition and coming up with nothing
substantial finally led me to an article in an Australian
Woman’s Weekly magazine.<span style="mso-spacerun: yes;"> </span>There was a
picture of a young man with Prader-Willi Syndrome and a photo of him as a
baby.<span style="mso-spacerun: yes;"> </span>It was a very real Damascus
experience, and, armed with the article, I went to see the Professor of
Paediatrics at Wellington Hospital.<span style="mso-spacerun: yes;"> </span>He
diagnosed me as an “over-anxious mother” and sent a letter to my own GP stating
as much.<span style="mso-spacerun: yes;"> </span>By this time, I <i style="mso-bidi-font-style: normal;">knew</i> I was right and I knew with my
whole being that this was the answer.<span style="mso-spacerun: yes;">
</span>Smashing at the doors of hierarchy I demanded a second opinion.<span style="mso-spacerun: yes;"> </span>My three year old daughter was duly
considered by another specialist who gave her blocks to play with, crayons to
draw with, and concluded that she was “delayed”.<span style="mso-spacerun: yes;"> </span>Coincidentally, as she ushered me to the
door, she pointed to a young girl about 8 years old and said, “now, that girl
has Prader-Willi syndrome, you don’t think your daughter has anything like <i style="mso-bidi-font-style: normal;">that</i> do you?”<span style="mso-spacerun: yes;"> </span></div>
<div class="MsoNormal">
<br /></div>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhM3nCCmDadBS-EyvCzMnmZ9kskf9A9ofhFLqQGV3K0fMmbGFqKnrL79c4bbFTvyx8B5EtAYUca2p2n9gbzvL-nCxwC8OJO65j1taFNpaQGDLGO_SsIMS6DUjaqnwZINBW9uBPQ3vWGKmg/s1600/3yrs.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" data-original-height="345" data-original-width="250" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhM3nCCmDadBS-EyvCzMnmZ9kskf9A9ofhFLqQGV3K0fMmbGFqKnrL79c4bbFTvyx8B5EtAYUca2p2n9gbzvL-nCxwC8OJO65j1taFNpaQGDLGO_SsIMS6DUjaqnwZINBW9uBPQ3vWGKmg/s200/3yrs.jpg" width="144" /></a></div>
<div class="MsoNormal">
Why on earth couldn’t she see what I could see?<span style="mso-spacerun: yes;"> </span>For me, it was like looking down a telescope
of years into the future.<span style="mso-spacerun: yes;"> </span>It was the
start of a long search, and, bearing in mind this was pre-Google days when
everything had to go by post, it was a lengthy process.<span style="mso-spacerun: yes;"> </span>Everyone who came in contact with my daughter
– speech therapists, physiotherapists, doctors, specialists – were all taken to
task by her over-anxious mother.<span style="mso-spacerun: yes;"> </span>The
breakthrough came when I burst into tears, banged the table and yelled my
frustration to an occupational therapist that no one <i style="mso-bidi-font-style: normal;">ever</i> listened, that she looked quietly at me and said, “I have a
child with Down’s Syndrome, I do understand.<span style="mso-spacerun: yes;">
</span>I will find an address in America of the PW Association for you.”<span style="mso-spacerun: yes;"> </span>And she did.<span style="mso-spacerun: yes;">
</span>I am still in her debt.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Little by little I began to piece things together.<span style="mso-spacerun: yes;"> </span>It required patience and an understanding of
things medical and scientific that were way beyond me.<span style="mso-spacerun: yes;"> </span>I read everything with a medical dictionary
beside me.<span style="mso-spacerun: yes;"> </span>I made lists.<span style="mso-spacerun: yes;"> </span>I compared characteristics.<span style="mso-spacerun: yes;"> </span>I ended up at the IHC (major service provider), in tears again, asking
why no one knew what Prader-Willi Syndrome was, for by now I was very certain
this was the diagnosis.<span style="mso-spacerun: yes;"> </span>I was listened
to and given, not sympathy, but tools to work with: names of parents (this was
pre the Privacy Act, when contacts were easier to come by), a small amount of
funding to set up a support group, and more importantly, some confidence to
work with.<span style="mso-spacerun: yes;"> </span>Their support over the years
has been generous, willing, and very enabling.<span style="mso-spacerun: yes;">
</span></div>
<div class="MsoNormal">
<br /></div>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiyJ-aZRAhrKrsTmwNIbpPeoCnDAGIzIivaZMkNVJkVENgmSMd-fijscb88KP0XNz_C81SQC0wQX35RvANu3Ucl-gjYL8aqB3emLkYkxxvKzK0S4Tzqd4Fg02ZgBA67OsajoCHlHaZQX7M/s1600/32_11+April+2016.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" data-original-height="1600" data-original-width="1200" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiyJ-aZRAhrKrsTmwNIbpPeoCnDAGIzIivaZMkNVJkVENgmSMd-fijscb88KP0XNz_C81SQC0wQX35RvANu3Ucl-gjYL8aqB3emLkYkxxvKzK0S4Tzqd4Fg02ZgBA67OsajoCHlHaZQX7M/s200/32_11+April+2016.jpg" width="150" /></a></div>
<div class="MsoNormal">
That was 29 years ago and the beginning of what now is the
New Zealand Prader-Willi Syndrome Association; a very pro-active, knowledgeable, and keenly
aware group of parents who are prepared to fight for the rights of their
children.<span style="mso-spacerun: yes;"> </span>They now know far more than I ever
did, the diagnosis of their babies is made not through the pages of a weekly
magazine, but quickly and accurately through the microscopic thread of
DNA.<span style="mso-spacerun: yes;"> </span>They do not have to search the
world for information, support, and a handbook of What To Do; it has all been
done by others before them.<span style="mso-spacerun: yes;"> </span>The increase
of scientific knowledge has been extremely rapid: the discovery of a small
deletion on 15<sup>th</sup> chromosome which is the cause of PWS and is also
linked to obesity (now giving scientists and drug companies a huge incentive to
find a ‘cure’); the discovery that growth hormone treatment will vastly improve
the physical ability and body composition of a child; a far greater tolerance
of people with disabilities, and a greater understanding of what is needed to make
their lives rewarding and fulfilling.</div>
<div class="MsoNormal">
</div>
<div class="MsoNormal">
At what cost?<span style="mso-spacerun: yes;"> </span>I look
back over 34 years at the early struggle to have my daughter even diagnosed, let
alone find support; so far we've managed to get through every Christmas, Easter, birthdays - times when family and friends come together to
eat, drink, be merry, relax and enjoy the good times - but for us, and other families where there's a child with PWS, it’s a time of watchfulness,
of making sure cupboards, refrigerators, pantries, are locked and secured.<span style="mso-spacerun: yes;"> </span>Of locking the drinks cabinet, of hiding
wallets, purses, and loose change.<span style="mso-spacerun: yes;"> </span>Of
trying to persuade people not to give chocolates, cakes, and sweets as
gifts.<span style="mso-spacerun: yes;"> </span>It’s a time of stress for
all.<span style="mso-spacerun: yes;"> </span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
The cost to any family is enormous.<span style="mso-spacerun: yes;"> </span>The sacrifices, sibling embarrassment, heartache, despair and all the "if only's".<span style="mso-spacerun: yes;"> </span>Then
there’s all the stress, strife, arguments and self-pity.<span style="mso-spacerun: yes;"> </span>That’s the price, and you pay for it with
guilt, tears, and love. We owe a great deal to those who went before us, and we are ready to help and support those who come after us. It's a different road we take, but it is one of much more awareness these days.</div>
<div class="MsoNormal">
<br /></div>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiNhiC32g3hxfEJvyLB3ifGXiUAG56vtiUxBD6wwNHbsN_DXLPS2F5_-xDbLWTiEJXJhg6mJ7zQtMUheDLkhLwvOAqdAMtVjpsJokQHrxNGn63i4gjIAQT2Ro8D82oOfdHMbdKhqRFMmcQ/s1600/apple.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="414" data-original-width="325" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiNhiC32g3hxfEJvyLB3ifGXiUAG56vtiUxBD6wwNHbsN_DXLPS2F5_-xDbLWTiEJXJhg6mJ7zQtMUheDLkhLwvOAqdAMtVjpsJokQHrxNGn63i4gjIAQT2Ro8D82oOfdHMbdKhqRFMmcQ/s200/apple.jpg" width="156" /></a></div>
<h4 class="MsoNormal" style="text-align: center;">
<span style="font-family: inherit;">The month of May is PWS Awareness Month</span></h4>
<div class="MsoNormal">
</div>
<div class="MsoNormal">
<i> *Rob Muldoon, Prime Minister of New Zealand 1975 to 1984</i></div>
<div class="MsoNormal">
<i>** Youngest female MP and staunch Women's Liberation advocate</i></div>
</div>
Tui Chizownhttp://www.blogger.com/profile/11362569853162067460noreply@blogger.com0tag:blogger.com,1999:blog-1343067279870496201.post-48016908949417323262018-03-30T14:09:00.000+13:002018-03-30T14:10:44.017+13:00Body Mass Index in Adults with Prader-Willi Syndrome<div dir="ltr" style="text-align: left;" trbidi="on">
<br />
<div align="center" style="margin: 0px 0px 13.33px; text-align: center;">
<b><br /></b></div>
<br />
<div style="margin: 0px;">
<i>Contributed by Susanne Blichfeldt, Georgina Loughnan, Jackie Waters. IPWSO</i></div>
<div style="margin: 0px;">
<i><br /></i></div>
<div style="margin: 0px;">
<span lang="EN-GB" style="font-size: 12pt; margin: 0px;"><i></i>Body Mass
Index, or BMI, is an approximate measure, based on a person’s height and
weight, to indicate if they are a health weight. It is calculated by dividing a
person’s weight in kilograms by their height in metres squared. You don’t have
to get our your calculator though – there are plenty of online calculators
which will do it for you, such as the NHS Choices one at </span><span lang="EN-GB" style="margin: 0px;"><a href="https://www.nhs.uk/Livewell/loseweight/Pages/BodyMassIndex.aspx"><span style="font-size: 12pt; margin: 0px;"><span style="color: blue; font-family: "calibri";">https://www.nhs.uk/Livewell/loseweight/Pages/BodyMassIndex.aspx</span></span></a></span><span lang="EN-GB" style="font-size: 12pt; margin: 0px;"></span></div>
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg6ytV1wSloWCerLG5V8iYDjI63yxRdUPQ8jCII6F9rD9MCBuFoY80e41sqtNVna480zQHiC5pWgFPqqL_nw18eg5N7cKP5DByxbwQP_69_6fgGCnq7PYQixDcPm3iC3qgbZ8Qn46M-LGM/s1600/BMI+chart.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" data-original-height="643" data-original-width="800" height="257" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg6ytV1wSloWCerLG5V8iYDjI63yxRdUPQ8jCII6F9rD9MCBuFoY80e41sqtNVna480zQHiC5pWgFPqqL_nw18eg5N7cKP5DByxbwQP_69_6fgGCnq7PYQixDcPm3iC3qgbZ8Qn46M-LGM/s320/BMI+chart.jpg" width="320" /></a></div>
<div style="margin: 0px;">
<span lang="EN-GB" style="font-size: 12pt; margin: 0px;">BMI is divided into a number of ranges</span></div>
<br />
<div style="margin: 0px 0px 0px 48px; text-indent: -18pt;">
<span lang="EN-GB" style="font-family: "symbol"; font-size: 12pt; margin: 0px;"><span style="margin: 0px;">·<span style="font-size-adjust: none; font-stretch: normal; font: 7pt "Times New Roman"; margin: 0px;">
</span></span></span><span lang="EN-GB" style="font-size: 12pt; margin: 0px;">below
18.5 – underweight</span></div>
<br />
<div style="margin: 0px 0px 0px 48px; text-indent: -18pt;">
<span lang="EN-GB" style="font-family: "symbol"; font-size: 12pt; margin: 0px;"><span style="margin: 0px;">·<span style="font-size-adjust: none; font-stretch: normal; font: 7pt "Times New Roman"; margin: 0px;">
</span></span></span><span lang="EN-GB" style="font-size: 12pt; margin: 0px;">18.5 –
24.9 – healthy weight</span></div>
<br />
<div style="margin: 0px 0px 0px 48px; text-indent: -18pt;">
<span lang="EN-GB" style="font-family: "symbol"; font-size: 12pt; margin: 0px;"><span style="margin: 0px;">·<span style="font-size-adjust: none; font-stretch: normal; font: 7pt "Times New Roman"; margin: 0px;">
</span></span></span><span lang="EN-GB" style="font-size: 12pt; margin: 0px;">25 –
29.9 – overweight</span></div>
<br />
<div style="margin: 0px 0px 0px 48px; text-indent: -18pt;">
<span lang="EN-GB" style="font-family: "symbol"; font-size: 12pt; margin: 0px;"><span style="margin: 0px;">·<span style="font-size-adjust: none; font-stretch: normal; font: 7pt "Times New Roman"; margin: 0px;">
</span></span></span><span lang="EN-GB" style="font-size: 12pt; margin: 0px;">30 –
39.9 – obese</span></div>
<br />
<div style="margin: 0px 0px 0px 48px; text-indent: -18pt;">
<span lang="EN-GB" style="font-family: "symbol"; font-size: 12pt; margin: 0px;"><span style="margin: 0px;">·<span style="font-size-adjust: none; font-stretch: normal; font: 7pt "Times New Roman"; margin: 0px;">
</span></span></span><span lang="EN-GB" style="font-size: 12pt; margin: 0px;">40 or
above – severely obese</span></div>
<br />
<div style="margin: 0px;">
<span lang="EN-GB" style="font-size: 12pt; margin: 0px;">You may also
see BMI depicted as a chart like the one on the right.</span></div>
<br />
<div style="margin: 0px;">
<b style="mso-bidi-font-weight: normal;"><span lang="EN-GB" style="font-size: 12pt; margin: 0px;">How might BMI be different for people with PWS?</span></b></div>
<br />
<div style="margin: 0px;">
<span lang="EN-GB" style="font-size: 12pt; margin: 0px;">Remember, BMI
is only an approximate measure. It does not take body composition (fat, muscle,
bone) into account. People with PWS generally have a different body composition
to most other people, with a greater proportion of fat to muscle mass. For
instance, for an active, 150 cm tall person with PWS, weighing 80kg, who does
not have difficulty moving around, lean body mass (ie muscle, bones and inner organs)
will most often be around 35-40 kg. The rest is fat. </span></div>
<br />
<div style="margin: 0px;">
<span lang="EN-GB" style="font-size: 12pt; margin: 0px;">A DEXA scan (<span style="background: white; color: #231f20; margin: 0px;">dual energy X-ray absorptiometry)</span> is recommended to
evaluate the amount of muscle and fat in the body. It can also evaluate the
amount of calcium in the bones of adults, and check if the person has
osteoporosis, which is quite common among adults with PWS. It is generally
recommended that adults with PWS have a DEXA scan every 2-3 years. </span></div>
<br />
<div style="margin: 0px;">
<span lang="EN-GB" style="font-size: 12pt; margin: 0px;">It is also very valuable to know the
amount of lean body mass, when medication is prescribed, because most
medication is primarily distributed in the lean body mass. Too high doses of
medication may easily create side effects if the doctor is unaware of the
person’s low lean body mass.<span style="margin: 0px;"> </span>A DEXA scan
is easy to perform. A GP can refer you to the appropriate hospital service for
this. </span></div>
<br />
<div style="margin: 0px;">
<span lang="EN-GB" style="font-size: 12pt; margin: 0px;">Those who have
lost a lot of weight may also have excess body skin which can lie in skinfolds
on their bodies. </span></div>
<br />
<div style="margin: 0px;">
<span lang="EN-GB" style="font-size: 12pt; margin: 0px;">Georgina
Loughnan, who is an advisor to the International PWS Organisation, and works at
the Prader-Willi Syndrome Clinic, a part of Metabolism & Obesity Services,
Royal Prince Alfred Hospital, Camperdown, New South Wales, in Australia, says:</span><span lang="EN-GB" style="font-size: 12pt; margin: 0px;"> </span></div>
<div style="margin: 0px;">
<br /></div>
<div style="line-height: normal; margin: 0px;">
<i style="mso-bidi-font-style: normal;"><span lang="EN-GB" style="background: white; font-size: 12pt; margin: 0px;">“Regarding having all
clients reach a healthy weight Range of BMI – 20-25kg/m2, I have several
clients who are in this range now and yes, some, after losing much weight have
excess skin on arms and legs. However, with regular effective exercise as a
major part of their weight loss programme some have minimal excess skin. I have
had several people lose over 50 kg (2 lost 75 kg) and had small abdominal
aprons (excess abdominal skin) that just needed to be well washed and dried,
but gave them no problems. The key is consistent exercise for the whole body, which
is so essential for healthy weight loss. </span></i></div>
<br />
<div style="line-height: normal; margin: 0px;">
<b style="mso-bidi-font-weight: normal;"><i style="mso-bidi-font-style: normal;"><span lang="EN-GB" style="background: white; font-size: 12pt; margin: 0px;">However,
reaching a BMI of 20-25kg/m2 should not be the aim for all people with PWS. A
better aim is for a healthy weight that reduces comorbidities and improves
physical ability and lifestyle. This is far more important and can be achieved
in the overweight BMI category of 25-30kg/m2.”</span></i></b></div>
<br />
<div style="line-height: normal; margin: 0px;">
<span lang="EN-GB" style="background: white; font-size: 12pt; margin: 0px;">Dr
Susanne Blichfeldt, also an advisor to IPWSO, concurs that exercise is the key.
She says, “Just sitting and losing weight means that you lose both muscle and
fat tissue, so it is important if you are on a diet to move a lot. Walking is
perfect, and swimming and gym are also good to build up muscles.<span style="margin: 0px;"> </span>It is more important to have a weight that
does not compromise motor activity, than to try to reach the 20-25 target”.</span></div>
<br />
<div style="line-height: normal; margin: 0px;">
<b style="mso-bidi-font-weight: normal;"><span lang="EN-GB" style="color: black; font-size: 12pt; margin: 0px;">Does growth hormone treatment make a
difference?</span></b></div>
<br />
<div style="line-height: normal; margin: 0px;">
<span lang="EN-GB" style="color: black; font-size: 12pt; margin: 0px;">According
to a Scandinavian study, growth hormone treatments in adults will add about 2
kg more of muscle mass <span style="margin: 0px;"> </span>and 4 kg less of
fat on average. However, worldwide there have been no large-scale longitudinal studies
of the effects of growth hormone (GH) on muscle mass in adults, and only a very
few adults with PWS in the UK receive it, as it is only licensed by NICE
(National Institute for Clinical Excellence) up to the age of 18 years in PWS.</span></div>
<br />
<div style="line-height: normal; margin: 0px;">
<b style="mso-bidi-font-weight: normal;"><span lang="EN-GB" style="color: black; font-size: 12pt; margin: 0px;">BMI and Children</span></b></div>
<br />
<div style="line-height: normal; margin: 0px;">
<b style="mso-bidi-font-weight: normal;"><span lang="EN-GB" style="color: black; font-size: 12pt; margin: 0px;">The BMI values mentioned above are to
be used for adults only.<span style="margin: 0px;"> </span></span></b><span lang="EN-GB" style="color: black; font-size: 12pt; margin: 0px;">BMI charts for children also exist for
each age group and, in general, BMI values for normal weight children are lower
than for adults, because of a different body composition in children. Normal
BMI values are lowest in the youngest age groups.<span style="margin: 0px;"> </span>As all children grow at different rates, you
should take the advice of your consultant or dietitian as to whether your child
is a healthy weight and developing along the right centile for PWS.<span style="margin: 0px;"> </span></span></div>
<br />
<div style="line-height: normal; margin: 0px;">
<b style="mso-bidi-font-weight: normal;"><span lang="EN-GB" style="color: black; font-size: 12pt; margin: 0px;">Thank you</span></b></div>
<span lang="EN-GB" style="color: black; font-size: 12pt; margin: 0px;">Many
thanks to Dr Susanne Blichfeldt, MD, senior consultant and paediatrician,
medical advisor to the International PWS Organisation and it Clinical and
Scientific Advisory Board, <span style="margin: 0px;"> </span>and to
Georgina Loughnan for their contributions to this article and for checking its
medical accuracy.</span><br />
<br />
<div style="line-height: normal; margin: 0px;">
<br /></div>
</div>
Tui Chizownhttp://www.blogger.com/profile/11362569853162067460noreply@blogger.com0tag:blogger.com,1999:blog-1343067279870496201.post-42444148730992955012018-03-23T21:00:00.000+13:002018-03-23T21:00:37.522+13:00What happens when I get too old?<div dir="ltr" style="text-align: left;" trbidi="on">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhOBLZj-a1iHbznpI1V8DLHM3mwjIQ7yCwzytTRuq1LLLoUbP-KJFoKc36WZZaAZThASI7ivObUCi5Fy5oNNyz2sAARppmT62nTHkYGTN_68wmajFiDtHOYlbFEp_SN7PH6WVJ3wzdKcFA/s1600/rocky+road.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" data-original-height="1067" data-original-width="1600" height="266" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhOBLZj-a1iHbznpI1V8DLHM3mwjIQ7yCwzytTRuq1LLLoUbP-KJFoKc36WZZaAZThASI7ivObUCi5Fy5oNNyz2sAARppmT62nTHkYGTN_68wmajFiDtHOYlbFEp_SN7PH6WVJ3wzdKcFA/s400/rocky+road.jpg" width="400" /></a><span style="font-family: "calibri";">It's a question I wake up at 3am and wonder about. And I think this is a question that many of us older parents
have started to ask in earnest.<span style="margin: 0px;"> </span>Let’s
face it, most of us have been around the PW world for 30, 40 years, maybe even longer depending on our now-adult son or daughter's age.<span style="margin: 0px;"> </span>When you stop to think, PWS wasn’t really acknowledged
until 1957 when it was described as a condition with a short life-span with major obesity problems, and very little good management procedures. Knowledge didn’t really take off until the internet took charge some 30
years later.<span style="margin: 0px;"> </span>Many of us were the
generation that forged the PW-pathway, stumbling over rocks and boulders, tripping
over roots and blindly turning corners as we went.<span style="margin: 0px;"> So many of o</span>ur kids didn’t have the benefit of
growth hormone treatment and with </span><span style="font-family: "calibri";">exercise being that much harder for them with their low muscle-tone, we faced a life of eternal vigilance of<span style="margin: 0px;"> </span>food and exercise.<span style="margin: 0px;"> </span>Exercise and food.<span style="margin: 0px;"> And all the challenges that go with that. </span>It seemed like a lifetime
imprisonment with little or no time out for good behaviour!<span style="margin: 0px;"> </span>Schools weren’t really aware of the unique
needs of PWS, families had a hard time coming to terms with their ‘different’
sibling, grandparents really didn’t understand, and as for any work placement –
well, there was just so much that employers needed to put in place and provide that most of the
time it was more often than not just put into the "too hard" basket. </span><br />
<span style="font-family: calibri;"></span><br />
<div style="margin: 0px 0px 10.66px;">
<span style="font-family: "calibri";">Our kids are living longer and that ‘short
life-span’ that was always talked about 30 years ago has now disappeared.<span style="margin: 0px;"> </span>With the right kind of information, support and
management, there’s nothing to stop anyone with PWS from living a long and
fulfilled life.<span style="margin: 0px;"> </span>Except that we parents are
growing older, and we are growing tireder.<span style="margin: 0px;">
</span>Although their life-span may be longer, their IQ and competency levels are not any more mature
than they were when they were young teenagers. <span style="margin: 0px;"> </span><span lang="EN-US" style="margin: 0px;">Sons or daughters still living at home require just as much
attention, chivvying, encouraging, as when they were little as that ability to
do things for themselves is severely limited. As parents become tireder
and tireder, we ask what are we supposed to do?<span style="margin: 0px;">
</span>We feel guilty if we are not doing the ‘right thing’, providing
enough exercise, enough vigilance.<span style="margin: 0px;"> </span>Many
of us can pinpoint illnesses that we experience to the care and worry of providing ongoing support for our sons and daughters: high blood pressure, fatigue, anxiety, heart
problems, and more.<span style="margin: 0px;"> </span>It is of real
concern that we have a plan in place in the event of our not being able to physically provide care any longer.</span></span></div>
<div style="margin: 0px 0px 10.66px;">
<span style="font-family: "calibri";">Some countries have residential care, but little specialised (ie PW) choice. Some have good residential
providers, and in some countries this simply isn't an option. Good caregivers can be few and far between.<span style="margin: 0px;">
</span>Not every agency can provide what our 'kids' need and even if we find a good residential care placement, parents still worry and live with anxiety that things will go
wrong.<span style="margin: 0px;"> </span>As parents we don’t want to
burden other children/adults in the family with the ongoing care responsibilities, nor do we want our adult children (PWS) to go into State care.<span style="margin: 0px;"> </span></span></div>
<div style="margin: 0px 0px 10.66px;">
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh45x4_rYgjc3i__LDkkNX4QCRFcRDG5dBAIY7cHWQuEXm7rcOP2H9h6JuC3YszKcke0geWL3TBI0B_EAUIZCfcTC7RLsaSQjJTgkRPE7B7nzqkXgKoK6M_jeZ4K-keBzkU9WU3FpGJjQQ/s1600/Bucket-List.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" data-original-height="1000" data-original-width="800" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh45x4_rYgjc3i__LDkkNX4QCRFcRDG5dBAIY7cHWQuEXm7rcOP2H9h6JuC3YszKcke0geWL3TBI0B_EAUIZCfcTC7RLsaSQjJTgkRPE7B7nzqkXgKoK6M_jeZ4K-keBzkU9WU3FpGJjQQ/s320/Bucket-List.jpg" width="256" /></a></div>
<span style="font-family: "calibri";">Some of us want to be able to enjoy our last few good
years!<span style="margin: 0px;"> </span>We want to knock a few things off
that “bucket list”, to travel, or to spend time with other members of the
family; we want to go out for a meal, go to the theatre, visit friends, without
having to make arrangements for ‘time out’.<span style="margin: 0px;"> </span></span></div>
<div style="margin: 0px 0px 10.66px;">
<span style="font-family: "calibri";">We are asking, what next?<span style="margin: 0px;">
</span>Who will look after my adult child?<span style="margin: 0px;">
</span>How will I provide for them?<span style="margin: 0px;"> How can I provide the management that they need, the exercise and daily walks, outings if I'm not physically able to do this? And, when I die, h</span>ow
will they manage without me?<span style="margin: 0px;"> </span></span><br />
<br />
<span style="font-family: calibri;">As for me, well after a few 3am consultations with myself I spent some time with a lawyer who explained what I could do to prepare for the eventuality and hopefully in my country it will be enough. </span><br />
<span style="font-family: calibri;"><br /></span>
<span style="font-family: calibri;">I really do need to start sleeping again!</span><br />
<span style="font-family: calibri;"><br /></span></div>
<br />
<div style="margin: 0px 0px 10.66px;">
<br /></div>
<b></b><i></i><u></u><sub></sub><sup></sup><strike></strike><span style="font-family: "calibri";"></span></div>
Tui Chizownhttp://www.blogger.com/profile/11362569853162067460noreply@blogger.com0tag:blogger.com,1999:blog-1343067279870496201.post-10692844202674163322018-03-06T11:17:00.003+13:002018-03-06T11:19:10.312+13:00I'll tell you what I want, what I really really want!<div dir="ltr" style="text-align: left;" trbidi="on">
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhzAoocNZpbhbi92GvVk1euRxU7TsoTL5GTVTE0oL6lL_XYb-VOaWbCF0facIEcjGXuz21LnB5NVt4QHrGohjSmbbYAnS29SlgP5vtF4pxy51HptEa2EcVYcBtkNM_znQlsG0HWuGTDSuk/s1600/phonecall.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" data-original-height="500" data-original-width="500" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhzAoocNZpbhbi92GvVk1euRxU7TsoTL5GTVTE0oL6lL_XYb-VOaWbCF0facIEcjGXuz21LnB5NVt4QHrGohjSmbbYAnS29SlgP5vtF4pxy51HptEa2EcVYcBtkNM_znQlsG0HWuGTDSuk/s320/phonecall.jpg" width="320" /></a></div>
<div>
The other day I listened to my daughter as she picked up the phone, dialled her bank and started to explain what she wanted done for an automatic payment to go to into my account. She was polite, completely engaged and knew exactly what she wanted. I have to say that I was impressed. </div>
<div>
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She explained that she had special needs and that her benefit covered so much but that she wanted to make sure an extra $5.00 went into her Mum's account so as she could pay back the money she borrowed. She knew exactly what to do and how to do it.</div>
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It started me thinking about all the things our kids know how to do and how so many manage, to get by in the world. There is so much they can do and understand, but the potential for failure and the potential for being misunderstood, not to mention the potential for fallout from unthought-out consequences is high. Which means that someone in their lives must be one step ahead the whole time. <br />
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My daughter likes to go shopping, wants to have lay-bys, wants to buy presents for everyone, The consequences don't matter to her because she lives in the here and now. Warnings about running into a lot of debt simply pass her by because there's always another payday, The idea of saving money is an anathema to her - what good is putting money aside to spend later when you can spend it today? Her idea of saving money is to buy from op-shops (and who can argue with that)!</div>
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The concept of something unforeseen such as a vet fee for the cat, an unplanned visit to the doctor, a need to go to the dentist, or to make sure there is catfood in the cupboard at the end of the week, is as absurd to her as water-divining. Much better to rush out and buy the boyfriend a Valentine's Day present in the hope of getting something in return!</div>
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She's quite happy that her bank balance comes in as zero each month as it's better to owe money in lay-buys, or 'next month' for the doctor, than to see money resting fretfully in her bank account.<br />
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It's difficult to argue with mainly because she will agree with everything I say... then go out and do exactly as she pleases. And, I have to say that I am fully expecting the $5.00 per week to be uninstated any time now!<br />
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There's always another day...<br />
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Tui Chizownhttp://www.blogger.com/profile/11362569853162067460noreply@blogger.com0tag:blogger.com,1999:blog-1343067279870496201.post-26841391941841779542017-12-17T10:01:00.000+13:002017-12-17T10:01:38.422+13:00Holiday Hiccups<div dir="ltr" style="text-align: left;" trbidi="on">
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<span style="font-size: 18px;"><span style="font-weight: bold;">Food for thought?</span></span></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi0urmGaIZatHb54-xLMu3N8j5roGl7cZZPppnvLHhd_ECztbXqZKSjTDhXbwSi5hyphenhyphena325OrRs_nYRJnouA2GK8Bg15K_cngv3rHJ-4V8Pgf7ATAsVG3YZDs-nzoqAf6MzsoPupOFhSTbE/s1600/dog+stealing+food.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" data-original-height="341" data-original-width="249" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi0urmGaIZatHb54-xLMu3N8j5roGl7cZZPppnvLHhd_ECztbXqZKSjTDhXbwSi5hyphenhyphena325OrRs_nYRJnouA2GK8Bg15K_cngv3rHJ-4V8Pgf7ATAsVG3YZDs-nzoqAf6MzsoPupOFhSTbE/s320/dog+stealing+food.jpg" width="233" /></a></div>
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<span style="font-size: 16px;">Although everyone loves holidays, this time of the year (whether in southern summer or northern winter) can often be more stressful than most. It seems that we dedicate <span style="font-style: italic;">days</span> to eating! And with family gatherings, and more meals, and lots of laughter and fun, it's often the person with PWS who finds it most difficult; too much temptation, food left out, people not watching. The main characteristics of PWS are brought sharply into focus - the desire to eat as much as possible and whenever possible. We all know the pitfalls...</span></div>
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The most worrisome outcome of overeating, or bingeing, is that of gastropaersis which may go unnoticed if your child does not complain of pain, or is usually trim because of Growth Hormone treatment. Please be aware of the <a data-cke-saved-href="https://www.pwsausa.org/wp-content/uploads/2016/01/Gastroparesis-The-Newest-Threat-MA214.pdf" href="https://www.pwsausa.org/wp-content/uploads/2016/01/Gastroparesis-The-Newest-Threat-MA214.pdf" rel="noopener noreferrer" target="_blank"><span style="color: blue;">symptoms and characteristics</span><span style="color: #eae055;"> </span></a>of this dangerous issue. </div>
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The very sad account of a 24-year-old man with PWS who presented with "abdominal pain, nausea, and emesis 3 days after ingesting 8 pounds of raisins and 48 ounces of peanut butter during a food binge" - luckily after some serious surgery, he survived. <span style="background-color: white;"> <a data-cke-saved-href="http://www.cghjournal.org/article/S1542-3565%2815%2900361-4/fulltext" href="http://www.cghjournal.org/article/S1542-3565%2815%2900361-4/fulltext" rel="noopener noreferrer" target="_blank"><span style="color: blue;">Ref</span></a></span></div>
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I always remember one mother who had a t-shirt made up for her little boy which said "If you feed me, my mother will slap you!" I know - not necessarily politically correct, but she was at her wits end and it worked!</div>
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If you will be with relatives, carefully plan ahead of time and communicate the importance of food control with all involved. Make sure all attending know the “rules of engagement” and agree to cooperate. <div>
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<span style="font-size: 16px;">We have some good </span><span style="background-color: white; font-size: 16px;"><a data-cke-saved-href="https://www.ipwso.org/helpful-hints-for-holidays" href="https://www.ipwso.org/helpful-hints-for-holidays"><span style="color: blue;">holiday hints</span></a> </span><span style="font-size: 16px;">written by Janalee Heinemann and our </span><a data-cke-saved-href="https://www.ipwso.org/famcare" href="https://www.ipwso.org/famcare" rel="noopener noreferrer" style="font-size: 16px;" target="_blank"><span style="color: blue;">Guidelines</span></a><span style="font-size: 16px;"> which may help you with practical advice including:</span><br /><br />
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<ul class="font_8" style="background-attachment: initial; background-clip: initial; background-image: initial; background-origin: initial; background-position: initial; background-repeat: initial; background-size: initial; border: 0px; font-family: avenir-lt-w01_35-light1475496, sans-serif; font-size: 13px; font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; list-style-image: initial; list-style-position: initial; margin: 0px 0px 0px 0.5em; outline: 0px; padding: 0px 0px 0px 1.3em; vertical-align: baseline;">
<li style="background-attachment: initial; background-clip: initial; background-image: initial; background-origin: initial; background-position: initial; background-repeat: initial; background-size: initial; border: 0px; font-style: inherit; font-weight: inherit; line-height: inherit; margin: 0px; outline: 0px; padding: 0px; vertical-align: baseline;"><div class="font_8" style="background-attachment: initial; background-clip: initial; background-image: initial; background-origin: initial; background-position: initial; background-repeat: initial; background-size: initial; border: 0px; font-size: 14px; font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; outline: 0px; padding: 0px; vertical-align: baseline;">
<span style="background-attachment: initial; background-clip: initial; background-image: initial; background-origin: initial; background-position: initial; background-repeat: initial; background-size: initial; border: 0px; margin: 0px; outline: 0px; padding: 0px; vertical-align: baseline;">See that someone at all times is clearly in charge of your child with PWS. Clearly define when you are “changing guards”. As Dr Linda Gourash states, “When everyone is in charge – no one is in charge.” </span></div>
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<div class="font_8" style="background-attachment: initial; background-clip: initial; background-image: initial; background-origin: initial; background-position: initial; background-repeat: initial; background-size: initial; border: 0px; font-family: avenir-lt-w01_35-light1475496, sans-serif; font-size: 14px; font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; outline: 0px; padding: 0px; vertical-align: baseline;">
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<ul class="font_8" style="background-attachment: initial; background-clip: initial; background-image: initial; background-origin: initial; background-position: initial; background-repeat: initial; background-size: initial; border: 0px; font-family: avenir-lt-w01_35-light1475496, sans-serif; font-size: 13px; font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; list-style-image: initial; list-style-position: initial; margin: 0px 0px 0px 0.5em; outline: 0px; padding: 0px 0px 0px 1.3em; vertical-align: baseline;">
<li style="background-attachment: initial; background-clip: initial; background-image: initial; background-origin: initial; background-position: initial; background-repeat: initial; background-size: initial; border: 0px; font-style: inherit; font-weight: inherit; line-height: inherit; margin: 0px; outline: 0px; padding: 0px; vertical-align: baseline;"><div class="font_8" style="background-attachment: initial; background-clip: initial; background-image: initial; background-origin: initial; background-position: initial; background-repeat: initial; background-size: initial; border: 0px; font-size: 14px; font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; outline: 0px; padding: 0px; vertical-align: baseline;">
<span style="background-attachment: initial; background-clip: initial; background-image: initial; background-origin: initial; background-position: initial; background-repeat: initial; background-size: initial; border: 0px; margin: 0px; outline: 0px; padding: 0px; vertical-align: baseline;">If your child is old enough, rehearse the “rules” before the special day and come to a mutual agreement on what your child will be allowed to eat. You can barter, i.e. “Do you want a little extra turkey and dressing, or do you want a piece of pie as your special treat?”</span></div>
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<div class="font_8" style="background-attachment: initial; background-clip: initial; background-image: initial; background-origin: initial; background-position: initial; background-repeat: initial; background-size: initial; border: 0px; font-family: avenir-lt-w01_35-light1475496, sans-serif; font-size: 14px; font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; outline: 0px; padding: 0px; vertical-align: baseline;">
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<ul class="font_8" style="background-attachment: initial; background-clip: initial; background-image: initial; background-origin: initial; background-position: initial; background-repeat: initial; background-size: initial; border: 0px; font-family: avenir-lt-w01_35-light1475496, sans-serif; font-size: 13px; font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; list-style-image: initial; list-style-position: initial; margin: 0px 0px 0px 0.5em; outline: 0px; padding: 0px 0px 0px 1.3em; vertical-align: baseline;">
<li style="background-attachment: initial; background-clip: initial; background-image: initial; background-origin: initial; background-position: initial; background-repeat: initial; background-size: initial; border: 0px; font-style: inherit; font-weight: inherit; line-height: inherit; margin: 0px; outline: 0px; padding: 0px; vertical-align: baseline;"><div class="font_8" style="background-attachment: initial; background-clip: initial; background-image: initial; background-origin: initial; background-position: initial; background-repeat: initial; background-size: initial; border: 0px; font-size: 14px; font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; outline: 0px; padding: 0px; vertical-align: baseline;">
<span style="background-attachment: initial; background-clip: initial; background-image: initial; background-origin: initial; background-position: initial; background-repeat: initial; background-size: initial; border: 0px; margin: 0px; outline: 0px; padding: 0px; vertical-align: baseline;">It is okay to request that Grandma and other relatives tuck away tempting items during your visit and to discreetly check with you prior to offering your child a treat. (Don’t check with the child!)</span></div>
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<div class="font_8" style="background-attachment: initial; background-clip: initial; background-image: initial; background-origin: initial; background-position: initial; background-repeat: initial; background-size: initial; border: 0px; font-family: avenir-lt-w01_35-light1475496, sans-serif; font-size: 14px; font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; margin-left: 3.6pt; outline: 0px; padding: 0px; vertical-align: baseline;">
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<ul class="font_8" style="background-attachment: initial; background-clip: initial; background-image: initial; background-origin: initial; background-position: initial; background-repeat: initial; background-size: initial; border: 0px; font-family: avenir-lt-w01_35-light1475496, sans-serif; font-size: 13px; font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; list-style-image: initial; list-style-position: initial; margin: 0px 0px 0px 0.5em; outline: 0px; padding: 0px 0px 0px 1.3em; vertical-align: baseline;">
<li style="background-attachment: initial; background-clip: initial; background-image: initial; background-origin: initial; background-position: initial; background-repeat: initial; background-size: initial; border: 0px; font-style: inherit; font-weight: inherit; line-height: inherit; margin: 0px; outline: 0px; padding: 0px; vertical-align: baseline;"><div class="font_8" style="background-attachment: initial; background-clip: initial; background-image: initial; background-origin: initial; background-position: initial; background-repeat: initial; background-size: initial; border: 0px; font-size: 14px; font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; outline: 0px; padding: 0px; vertical-align: baseline;">
<span style="background-attachment: initial; background-clip: initial; background-image: initial; background-origin: initial; background-position: initial; background-repeat: initial; background-size: initial; border: 0px; margin: 0px; outline: 0px; padding: 0px; vertical-align: baseline;">Make sure you know what everyone is bringing, so there are no surprises on what the choices will be. </span></div>
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<ul class="font_8" style="background-attachment: initial; background-clip: initial; background-image: initial; background-origin: initial; background-position: initial; background-repeat: initial; background-size: initial; border: 0px; font-family: avenir-lt-w01_35-light1475496, sans-serif; font-size: 13px; font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; list-style-image: initial; list-style-position: initial; margin: 0px 0px 0px 0.5em; outline: 0px; padding: 0px 0px 0px 1.3em; vertical-align: baseline;">
<li style="background-attachment: initial; background-clip: initial; background-image: initial; background-origin: initial; background-position: initial; background-repeat: initial; background-size: initial; border: 0px; font-style: inherit; font-weight: inherit; line-height: inherit; margin: 0px; outline: 0px; padding: 0px; vertical-align: baseline;"><div class="font_8" style="background-attachment: initial; background-clip: initial; background-image: initial; background-origin: initial; background-position: initial; background-repeat: initial; background-size: initial; border: 0px; font-size: 14px; font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; outline: 0px; padding: 0px; vertical-align: baseline;">
<span style="background-attachment: initial; background-clip: initial; background-image: initial; background-origin: initial; background-position: initial; background-repeat: initial; background-size: initial; border: 0px; margin: 0px; outline: 0px; padding: 0px; vertical-align: baseline;">Grandpa and Grandma, or aunt and uncle may want to bring a special gift toy to compensate for the food they have to deny your child. </span></div>
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<div class="font_8" style="background-attachment: initial; background-clip: initial; background-image: initial; background-origin: initial; background-position: initial; background-repeat: initial; background-size: initial; border: 0px; font-family: avenir-lt-w01_35-light1475496, sans-serif; font-size: 14px; font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; outline: 0px; padding: 0px; vertical-align: baseline;">
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<ul class="font_8" style="background-attachment: initial; background-clip: initial; background-image: initial; background-origin: initial; background-position: initial; background-repeat: initial; background-size: initial; border: 0px; font-family: avenir-lt-w01_35-light1475496, sans-serif; font-size: 13px; font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; list-style-image: initial; list-style-position: initial; margin: 0px 0px 0px 0.5em; outline: 0px; padding: 0px 0px 0px 1.3em; vertical-align: baseline;">
<li style="background-attachment: initial; background-clip: initial; background-image: initial; background-origin: initial; background-position: initial; background-repeat: initial; background-size: initial; border: 0px; font-style: inherit; font-weight: inherit; line-height: inherit; margin: 0px; outline: 0px; padding: 0px; vertical-align: baseline;"><div class="font_8" style="background-attachment: initial; background-clip: initial; background-image: initial; background-origin: initial; background-position: initial; background-repeat: initial; background-size: initial; border: 0px; font-size: 14px; font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; outline: 0px; padding: 0px; vertical-align: baseline;">
<span style="background-attachment: initial; background-clip: initial; background-image: initial; background-origin: initial; background-position: initial; background-repeat: initial; background-size: initial; border: 0px; margin: 0px; outline: 0px; padding: 0px; vertical-align: baseline;">Go over with the hostess or your family on how to contain the accessibility of food. See to it that where your child is sitting there will not be a lot of bowls of food, rolls, or condiments nearby (Many people do not consider how many calories our children can consume with the extras – sugar, butter, sauces, gravies, etc.) </span></div>
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<ul class="font_8" style="background-attachment: initial; background-clip: initial; background-image: initial; background-origin: initial; background-position: initial; background-repeat: initial; background-size: initial; border: 0px; font-family: avenir-lt-w01_35-light1475496, sans-serif; font-size: 13px; font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; list-style-image: initial; list-style-position: initial; margin: 0px 0px 0px 0.5em; outline: 0px; padding: 0px 0px 0px 1.3em; vertical-align: baseline;">
<li style="background-attachment: initial; background-clip: initial; background-image: initial; background-origin: initial; background-position: initial; background-repeat: initial; background-size: initial; border: 0px; font-style: inherit; font-weight: inherit; line-height: inherit; margin: 0px; outline: 0px; padding: 0px; vertical-align: baseline;"><div class="font_8" style="background-attachment: initial; background-clip: initial; background-image: initial; background-origin: initial; background-position: initial; background-repeat: initial; background-size: initial; border: 0px; font-size: 14px; font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; outline: 0px; padding: 0px; vertical-align: baseline;">
<span style="background-attachment: initial; background-clip: initial; background-image: initial; background-origin: initial; background-position: initial; background-repeat: initial; background-size: initial; border: 0px; margin: 0px; outline: 0px; padding: 0px; vertical-align: baseline;">After eating, when people are just visiting, see to it that if the food cannot all be put away, someone is responsible for guarding it. </span></div>
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<li style="background-attachment: initial; background-clip: initial; background-image: initial; background-origin: initial; background-position: initial; background-repeat: initial; background-size: initial; border: 0px; font-style: inherit; font-weight: inherit; line-height: inherit; margin: 0px; outline: 0px; padding: 0px; vertical-align: baseline;"><div class="font_8" style="background-attachment: initial; background-clip: initial; background-image: initial; background-origin: initial; background-position: initial; background-repeat: initial; background-size: initial; border: 0px; font-size: 14px; font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; outline: 0px; padding: 0px; vertical-align: baseline;">
<span style="background-attachment: initial; background-clip: initial; background-image: initial; background-origin: initial; background-position: initial; background-repeat: initial; background-size: initial; border: 0px; margin: 0px; outline: 0px; padding: 0px; vertical-align: baseline;">Your child must have the security of knowing you will be strong in your commitment to keep them protected from food – in spite of themselves. Giving in, even once, means several battles ahead. I know you get tired of hearing it, but consistency is the key. </span></div>
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All worries aside, we hope you enjoy the break as much as possible and can look forward to 2018 with confidence! We will be here to support you all as much as we can. </div>
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Tui Chizownhttp://www.blogger.com/profile/11362569853162067460noreply@blogger.com0tag:blogger.com,1999:blog-1343067279870496201.post-59406513614871983032017-11-28T07:05:00.000+13:002017-11-28T07:05:56.775+13:00This BIRD has wings!<div dir="ltr" style="text-align: left;" trbidi="on">
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<w:LsdException Locked="false" Priority="43" Name="Plain Table 3"/>
<w:LsdException Locked="false" Priority="44" Name="Plain Table 4"/>
<w:LsdException Locked="false" Priority="45" Name="Plain Table 5"/>
<w:LsdException Locked="false" Priority="40" Name="Grid Table Light"/>
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<w:LsdException Locked="false" Priority="50" Name="Grid Table 5 Dark Accent 1"/>
<w:LsdException Locked="false" Priority="51"
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<w:LsdException Locked="false" Priority="52"
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<w:LsdException Locked="false" Priority="46"
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<w:LsdException Locked="false" Priority="52"
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<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
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<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
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</xml><![endif]--><!--[if gte mso 10]>
<style>
/* Style Definitions */
table.MsoNormalTable
{mso-style-name:"Table Normal";
mso-tstyle-rowband-size:0;
mso-tstyle-colband-size:0;
mso-style-noshow:yes;
mso-style-priority:99;
mso-style-parent:"";
mso-padding-alt:0cm 5.4pt 0cm 5.4pt;
mso-para-margin-top:0cm;
mso-para-margin-right:0cm;
mso-para-margin-bottom:10.0pt;
mso-para-margin-left:0cm;
line-height:115%;
mso-pagination:widow-orphan;
font-size:11.0pt;
font-family:"Calibri",sans-serif;
mso-ascii-font-family:Calibri;
mso-ascii-theme-font:minor-latin;
mso-hansi-font-family:Calibri;
mso-hansi-theme-font:minor-latin;
mso-bidi-font-family:"Times New Roman";
mso-bidi-theme-font:minor-bidi;
mso-ansi-language:DE;
mso-fareast-language:EN-US;}
</style>
<![endif]-->
<br />
<div style="margin-bottom: .0001pt; margin: 0cm;">
<br /></div>
<br />
<div style="margin-bottom: .0001pt; margin: 0cm;">
<!--[if gte mso 9]><xml>
<w:WordDocument>
<w:View>Normal</w:View>
<w:Zoom>0</w:Zoom>
<w:TrackMoves/>
<w:TrackFormatting/>
<w:DoNotShowPropertyChanges/>
<w:PunctuationKerning/>
<w:ValidateAgainstSchemas/>
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<w:DoNotPromoteQF/>
<w:LidThemeOther>DE</w:LidThemeOther>
<w:LidThemeAsian>X-NONE</w:LidThemeAsian>
<w:LidThemeComplexScript>X-NONE</w:LidThemeComplexScript>
<w:Compatibility>
<w:BreakWrappedTables/>
<w:SnapToGridInCell/>
<w:WrapTextWithPunct/>
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<w:DontGrowAutofit/>
<w:SplitPgBreakAndParaMark/>
<w:EnableOpenTypeKerning/>
<w:DontFlipMirrorIndents/>
<w:OverrideTableStyleHps/>
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<m:brkBin m:val="before"/>
<m:brkBinSub m:val="--"/>
<m:smallFrac m:val="off"/>
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<m:rMargin m:val="0"/>
<m:defJc m:val="centerGroup"/>
<m:wrapIndent m:val="1440"/>
<m:intLim m:val="subSup"/>
<m:naryLim m:val="undOvr"/>
</m:mathPr></w:WordDocument>
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<b style="mso-bidi-font-weight: normal;"><span lang="EN-US" style="font-size: 12.0pt; line-height: 115%; mso-ansi-language: EN-US; mso-bidi-font-size: 11.0pt;">40 years awareness for “Rare disease”
– Anna and Giuseppe Baschirotto</span></b></div>
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<span lang="EN-US" style="mso-ansi-language: EN-US;">My visit to B.I.R.D. in September 2017 </span></div>
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<br /></div>
<div style="margin-bottom: .0001pt; margin: 0cm;">
<i><span lang="EN-US" style="mso-ansi-language: EN-US;">by Verena Gutmann (IPWSO Board Member - Austria)</span></i></div>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEicjq3lwAu-EuzVjCUkglA9-_44sge1HWveK2fzqWhthnT6yYHjNTi3hvvSPE3YhNmWlXK6QpysvDp2McdczhvyD25eYuzfpcQbYOWeXbLFgdT-UZLhv7UakCjAywabFhJnu80krhblTCM/s1600/Gutmann+Photo.JPG" imageanchor="1" style="clear: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" data-original-height="480" data-original-width="422" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEicjq3lwAu-EuzVjCUkglA9-_44sge1HWveK2fzqWhthnT6yYHjNTi3hvvSPE3YhNmWlXK6QpysvDp2McdczhvyD25eYuzfpcQbYOWeXbLFgdT-UZLhv7UakCjAywabFhJnu80krhblTCM/s200/Gutmann+Photo.JPG" width="175" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Verena</td></tr>
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<span lang="EN-US" style="mso-ansi-language: EN-US;"> </span></div>
<div style="margin-bottom: .0001pt; margin: 0cm;">
<span lang="EN-US" style="mso-ansi-language: EN-US;">Some weeks ago I visited B.I.R.D. Institute (Baschirotto Institute of
rare disease) in Longare di Costozza, a sleepy little village near Vicenza. The agreement between B.I.R.D. and IPWSO needed to be confirmed
again and signed. </span></div>
<div style="margin-bottom: .0001pt; margin: 0cm;">
<span lang="EN-US" style="mso-ansi-language: EN-US;"><br /></span></div>
<div style="margin-bottom: .0001pt; margin: 0cm;">
<span lang="EN-US" style="mso-ansi-language: EN-US;">The B.I.R.D. Institute makes it possible to perform the IPWSO
diagnostic molecular tests which allow confirming or excluding the
Prader-Willi Syndrome in countries which cannot afford the special technical
equipment to provide the diagnosis on site.</span></div>
<div style="margin-bottom: .0001pt; margin: 0cm;">
<span lang="EN-US" style="mso-ansi-language: EN-US;">This is the only life-sustaining option for many affected families to
care appropriately for a person with PWS.</span></div>
<div style="margin-bottom: .0001pt; margin: 0cm;">
<br /></div>
<div style="margin-bottom: .0001pt; margin: 0cm;">
<span lang="EN-US" style="mso-ansi-language: EN-US;">It is very impressive to see how much mail the institute receives from
all over the world. Even test samples on simple coffee filter paper arrive when
laboratory filter paper is not available.</span></div>
<div style="margin-bottom: .0001pt; margin: 0cm;">
<br /></div>
<div style="margin-bottom: .0001pt; margin: 0cm;">
<span lang="EN-US" style="mso-ansi-language: EN-US;">Last time I visited B.I.R.D. was in 2002, when Giorgio Fornasier, father
of the now 40 years old Daniele with PWS and the former president of
IPWSO, organized the IPWSO members meeting of 25 nations at B.I.R.D. That
was a truly emotional meeting! <table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: left; margin-right: 1em; text-align: left;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgxw1-1-stQ74n7q9SX_0UumolrW2misZCCU2LCwIq_Rj5ognRJlvksEjKaexSW6HIp2KhLAx2fkf1Ime3Q1u611YvyxJhW9em_rCKEClUKyWec2pU1mtWmmj6aZUT93d3r00djyWsxGTI/s1600/signing+the+documents+%25282%2529.jpg" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" data-original-height="1338" data-original-width="1600" height="267" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgxw1-1-stQ74n7q9SX_0UumolrW2misZCCU2LCwIq_Rj5ognRJlvksEjKaexSW6HIp2KhLAx2fkf1Ime3Q1u611YvyxJhW9em_rCKEClUKyWec2pU1mtWmmj6aZUT93d3r00djyWsxGTI/s320/signing+the+documents+%25282%2529.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span style="mso-bidi-font-weight: normal;"><span lang="EN-US" style="font-size: 12.0pt; line-height: 115%; mso-ansi-language: EN-US; mso-bidi-font-size: 11.0pt;">Giuseppe and Anna Baschirotto</span></span></td></tr>
</tbody></table>
Today, 15 years later, I was really impressed by the Baschirottos. Their
life´s work is characterized by their never ending support and their confident
empathy. Mauro, their son, died at age 16 because of the now known Apeced
autoimmune syndrome. It was then that they decided to support research and
therapy for rare diseases. Today, a very dedicated team of molecular
biologists, human geneticist and MD´s make it possible to diagnose rare
diseases like Prader-Willi Syndrome, Apeced Syndrome, Lesch Nyhan, Krabbe
Disease and Metachromatic Leucodystrophy. Outpatient medical care and rehabilitation programs are also
offered on this site. In former times the property was the summer residence of Venetian
aristocrats. Later on nuns used it as an orphanage, before finally the
Baschirottos became the owners.<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: right; margin-left: 1em; text-align: right;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgXYe51Pzegw1N1S6Ebo7GH9WeTYs_5hDLdxYeq6K6USYc9_Dee9-3BIQrqLF9oIQnXzhT-H1E1EkW7je_6Dv99ZCVU7gCyOIi0MpJ1rzSz7tosGua_aC-G-HlN-tD9v-QS5BLWbIGijok/s1600/BIRD.jpg" imageanchor="1" style="clear: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" data-original-height="116" data-original-width="161" height="230" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgXYe51Pzegw1N1S6Ebo7GH9WeTYs_5hDLdxYeq6K6USYc9_Dee9-3BIQrqLF9oIQnXzhT-H1E1EkW7je_6Dv99ZCVU7gCyOIi0MpJ1rzSz7tosGua_aC-G-HlN-tD9v-QS5BLWbIGijok/s320/BIRD.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">BIRD </td></tr>
</tbody></table>
</span></div>
<div style="margin-bottom: .0001pt; margin: 0cm;">
<br /></div>
<div style="margin-bottom: .0001pt; margin: 0cm;">
<span lang="EN-US" style="mso-ansi-language: EN-US;">It is of great importance that affected families can meet and share in
this special environment. They can experience here that support is offered and
that they are not alone in this situation. Because of the close contact with Giorgio Fornasier, the Prader-Willi
Syndrome found particular attention at B.I.R.D. </span></div>
<div style="margin-bottom: .0001pt; margin: 0cm;">
<span lang="EN-US" style="mso-ansi-language: EN-US;"><br /></span></div>
<div style="margin-bottom: .0001pt; margin: 0cm;">
<span lang="EN-US" style="mso-ansi-language: EN-US;">PWS rehab camps are offered here twice a year. During these camps, PWS
individuals and their families benefit from medical care and also learn more
about PWS management.</span></div>
<div style="margin-bottom: .0001pt; margin: 0cm;">
<span lang="EN-US" style="mso-ansi-language: EN-US;">Beside the DNA diagnosis, PWS genetic research is conducted here.
Currently test samples of four PWS patients are kept here under special
conditions (temperatures of -80° Celsius) because the financial support of the
Canadian Foundation of Prader-Willi Research for the project
"Insulin driven-translational capacity is impaired in fibroplasts of <span style="mso-spacerun: yes;"> </span>Prader-Willi Syndrom" ended. A new
sponsor has to be found...</span></div>
<div style="margin-bottom: .0001pt; margin: 0cm;">
<span lang="EN-US" style="mso-ansi-language: EN-US;"> <table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: left; margin-right: 1em; text-align: left;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj-O04f9Z9k40zRfZLPLMs16CcaIK7CqSlF4GBMVXHhcOgjhDmUkZtRa4h9RXc0ubUaFDA1d2E8tqsqR2Eow2nT5LCBygz1j2PaSUoVKG8IFQl_6q8ui-IGElnIRRDsX4Vg7cGQzc2RWek/s1600/-80%25C2%25B0+celsius.jpg" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" data-original-height="900" data-original-width="1600" height="180" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj-O04f9Z9k40zRfZLPLMs16CcaIK7CqSlF4GBMVXHhcOgjhDmUkZtRa4h9RXc0ubUaFDA1d2E8tqsqR2Eow2nT5LCBygz1j2PaSUoVKG8IFQl_6q8ui-IGElnIRRDsX4Vg7cGQzc2RWek/s320/-80%25C2%25B0+celsius.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Tests are kept at -80C</td></tr>
</tbody></table>
</span></div>
<div style="margin-bottom: .0001pt; margin: 0cm;">
<span lang="EN-US" style="mso-ansi-language: EN-US;">It was such an impressive experience for me to meet a couple like Anna
and Giuseppe. Their charisma, their commitment and their humor are priceless, and
their encouragement to keep supporting PWS families worldwide is much
appreciated.</span></div>
<div style="margin-bottom: .0001pt; margin: 0cm;">
<br /></div>
<div style="margin-bottom: .0001pt; margin: 0cm;">
<span lang="EN-US" style="mso-ansi-language: EN-US;"><i>(IPWSO expresses its huge gratitude to the Baschirotto's and their team of staff who make many PWS diagnoses for families around the world. All PWS diagnoses are subsidised by IPWSO and free where this is otherwise unavailable.)</i> </span></div>
<div style="margin-bottom: .0001pt; margin: 0cm;">
<br /></div>
<div style="margin-bottom: .0001pt; margin: 0cm;">
<br /></div>
<div class="MsoNormal">
<br /></div>
</div>
Tui Chizownhttp://www.blogger.com/profile/11362569853162067460noreply@blogger.com0tag:blogger.com,1999:blog-1343067279870496201.post-23360128583633739322017-11-21T09:24:00.003+13:002017-11-21T09:28:53.635+13:00Skin-picking<div dir="ltr" style="text-align: left;" trbidi="on">
There's a proper name for skin-picking - it's known as "<span class="_Tgc">dermatillomania" or neurotic excoriation and it happens not just in Prader-Willi syndrome. Many people pick at their skin, even absent-mindedly, scratching at some irritation, chewing the corner of their nails, picking the edges of a scab; it's a common thing and we've all done it. But it's when it becomes more habitual, more obsessive, more compulsive then we should start to worry. And, yes, there's another proper name for it when it starts to be repetitive, they call it "Body-Focused Repetitive Behaviour (BRFB) and it also includes pulling or plucking hair or nails and becomes even more serious when it starts to cause scarring which interfers with the person's social life, every-day life, and personality.</span><br />
<span class="_Tgc"><br /></span>
<br />
<div style="text-align: justify;">
<span class="_Tgc"><i>*Skin picking or scratching is a common behaviour seen in people with Prader-Willi Syndrome (PWS). The intensity and duration of this behaviour varies from person to person and episode to episode. It may occur in the form of scratching an insect bite until it bleeds and becomes an infected sore or it may manifest in the form of nose picking or anal picking. When this behaviour continues for a prolonged period it can cause unsightly and distressing open wounds. 75% of the people surveyed by <a href="https://www.ipwso.org/famcare" target="_blank">FamCare</a> reported skin picking in their relative with PWS. A USA study reported anal picking in 9.5 % of people who skin picked.</i></span></div>
<br />
Most people use their fingers to pick at their skin. Some,
however, will use tools or objects, such as tweezers, fingernail
clippers, or pins. These sharp, pointed objects can quickly do
significant damage to the skin, often resulting in frequent bleeding and
lasting scars.<br />
<br />
My daughter went through a time of great stress for her and she used a needle to damage her skin. She pushed the needle in so far that it required surgery to remove it. She came through the surgery like an angry cat - hissing, spitting, and wanting to escape. More than that, she wanted food and absolutely no-one was going to get in her way! The nursing staff had to call for help to manage her. It was one of her worst times. Now, this is in the line more of self-harming, but it's the same kind of thing in that she couldn't stop herself.<br />
<div>
<br />
<i><br /></i>
Why do people with PWS skin pick? The behaviour is thought to start in response to boredom, stress and anxiety or as a form of self-stimulation. And, these too, are reasons in the general population, along with a feeling of loss or self-loathing. There is also a more psychological reason of being able to "own" something that is yours. These are issues that we, as parents, should be closely aware of and be able to identify what is upsetting or worrying our kids. It is also known that people with PWS have a high pain threshold and do not feel pain so intensely. This, of course, is not necessarily the same for each person, but quite often there seems to be a higher pain threshold than you might otherwise think.<br />
<br />
Once commenced it is difficult for the person with PWS to cease without some form of external intervention, as they become “stuck” in the behaviour. And this is an interesting point, becoming "stuck" in behaviours.<br />
<br />
With my daughter there is a "point of no return"; she has reached a peak in an outburst from which there is no rescuing, no sensible discussion, and no point in trying. She is totally stuck.<br />
<i><br /></i>
Think of other behaviours in PWS - eating being the major one. If the situation is not controlled, once they start, there is no going back and, given the chance, they may eat themselves to the point of danger. And there are the repetitive behaviours that go on and on, whether it's questioning a situation, asking when this, or that, is going to happen, and who, or what is going to happen next, it's all bound up with anxiety. Anxiety that they will not be fed again; anxiety of what might happen will be something they can't control. And so on.<br />
<br />
Our Famcare article on skin-picking says this: "If the underlying cause of the skin picking can be identified, especially where stress or anxiety is thought to be a contributing factor, the ideal would be to investigate and discuss what is causing the stress for the person with PWS. <u>If the stress can be removed or decreased</u>, the skin picking should also reduce. Remember, however, that the picking may continue as it may have built up to a repetitive behaviour which will take longer to stop."<br />
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhdR_EYyT6gxIk0gz4zTf5YSkaU9S4ciWMlnc_qdfXZmykkhCoiaGMuAUSX7mvAG-3tALw2AQBryvYNaT1iaEa3KyOls5XgfrHN4Z12VZbTrRO7EeIkM134MHNF6I_E4oWgTmLncGZqNyI/s1600/stress.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" data-original-height="247" data-original-width="341" height="144" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhdR_EYyT6gxIk0gz4zTf5YSkaU9S4ciWMlnc_qdfXZmykkhCoiaGMuAUSX7mvAG-3tALw2AQBryvYNaT1iaEa3KyOls5XgfrHN4Z12VZbTrRO7EeIkM134MHNF6I_E4oWgTmLncGZqNyI/s200/stress.jpg" width="200" /></a></div>
In my daughter's case stress from a very ignorant neighbour and her children who teased and tormented, led to a lot of self-harming Of course, it was exacerbated by her retaliation and the only way to permanently avoid this stress was for my daughter to move house. Extreme, yes, but it worked.<br />
<br />
So, what works to avoid skin picking? Assuming we have eliminated any anxiety around immediate issues and that the skin-picking seems to have turned into repetitive behaviour, there are simple and practical strategies that help to minimise the severity and frequency of skin picking. These include:<br />
<br />
<ul style="text-align: left;">
<li>routine cutting of finger nails on a weekly basis</li>
<li> daily use of moisturiser for fingers, hands and arms - it is best if the moisturiser is applied by the person with PWS, but supervised to avoid the "more is better" trap!</li>
<li> positive reinforcement for “healthy, good-looking skin”</li>
<li> keeping hands occupied – using a “word-find” or puzzle book, computerised game use, object kneading – eg soft ball, worry beads, hand-craft – such as knitting, crocheting, beading, unravelling knitting and re-winding</li>
<li> daily sensory stimulation of the hands and arms – eg massage</li>
<li> maintaining a PWS appropriate and calm environment </li>
<li> brushing hair daily for a number of strokes, counted – say, up to 50, encourages the growth of “beautiful, shiny hair” when the habit of pulling hair out, is a problem.</li>
<li> tell the person how wonderful their “unpicked” skin is</li>
<li> tell the person you want to help their sore to heal</li>
<li> give verbal praise for periods of time spent not picking</li>
<li> offer the person a reward (not food) for time spent not picking – this can be for a few hours or lengthened to days or at the end of a week for 7 days of no picking. Drawing up a contract involving “periods of non picking” often works well. </li>
<li> If anal picking is a problem rolling balls of toilet paper while sitting on the toilet may keep hands occupied; try not to focus on or talk about the skin picking </li>
<li> using distracting calming strategies and verbal re-directive strategies eg, asking the person to tell you about something that interests them</li>
<li> dress any picked sores with antiseptic cream if necessary and cover the picked area with a gauze dressing and bandage to prevent access to the area or try using a strong solution of salt and warm water to bathe picked areas </li>
<li> maintain supervision of the person if they are only picking in secret – but night-times are difficult</li>
<li> an Aloe Vera based cream works very well on the sores</li>
<li> in severe cases medication (only prescribed by a doctor) may be beneficial – eg Topiramate, topical Bactroban, ReVia (naltrexone hydrochloride). All medications must be monitored by a doctor to prevent any reactions within the person with PWS</li>
</ul>
<br />
Skin picking does not occur all the time. Prevention is always the better option, however, techniques used to avoid skin picking need to practised regularly – as with all PWS management. <br />
<br />
Finally, I have always found that it's better not to make a fuss about it, but include a skin-care routine into your son or daughter's daily life using praise when healing takes place and picking lessens, and not commenting when it has built up but first and foremost look for any anxiety-related issue, then progress with the healing using as many strategies as it takes.<br />
<br />
<i>(Linda Thornton)</i><br />
<br />
<br />
<br />
* Famcare is a project of IPWSO. Main Office: c/o B.I.R.D. Europe Foundation Onlus Via Bartolomeo Bizio, 1 – 36023 Costozza (VI) – Italy – tel/fax +39 0444 555557 email: information@ipwso.org www.ipwso.org<br />
<div>
<br /></div>
</div>
</div>
Tui Chizownhttp://www.blogger.com/profile/11362569853162067460noreply@blogger.com0tag:blogger.com,1999:blog-1343067279870496201.post-12469028303798738262017-11-07T09:43:00.000+13:002017-11-07T09:43:03.152+13:00Flying Solo<div dir="ltr" style="text-align: left;" trbidi="on">
It's been a while since I've put pen to paper as quite a lot has been happening these past couple of months. One of them was the event of a significant birthday which required quite a lot of organising with half of the family coming "across the ditch" from Australia to join the celebrations.<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi9sZGxB5cqIfXDD7eOLbsJPSMyVOEf6hTUYJ-yWncR1vzTMmNi0_1_1HytKOaZJ1zjV3DvG0ry14cHZzAvu0-lGx0trqZWKyYOLdAPKcKjCwLl7qUP8HmeWA-cZ02NdLoIir_Az_16Xg8/s1600/party.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" data-original-height="174" data-original-width="289" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi9sZGxB5cqIfXDD7eOLbsJPSMyVOEf6hTUYJ-yWncR1vzTMmNi0_1_1HytKOaZJ1zjV3DvG0ry14cHZzAvu0-lGx0trqZWKyYOLdAPKcKjCwLl7qUP8HmeWA-cZ02NdLoIir_Az_16Xg8/s1600/party.jpg" /></a></div>
<br />
The plan was to rent accommodation right by the beach - a large house which took 10 people plus small dog, and a second house was rented for another 5 members of the extended family. The celebration soon took on the order of a rather large food-and-wine-festival with lots of going out to test various restaurants and local cafes, and families coming and going. After a lot of discussion, we decided that the temptation for the one with PWS would be too great and to avoid all the issues that go along with festivities, she would join us for the last few days in a more food-manageable situation at our family bach. To give an element of excitement to this we arranged for her to fly to the nearest city where we would pick her up. Now, New Zealand is just a small place relatively speaking, and airports are not large and bewildering as in some countries and there are not miles and miles of Gates to find, so I thought this would be relatively simple, especially if I organised an air steward to take care of her. She was determined she could do this by herself - no problem! "I'm over 30 now, Mum" she said, but agreed that having someone to show her where to go would be ok.<br />
<br />
My logical process of thinking was, the flight was under an hour. She could not escape. She enjoys flying. They no longer serve food. Someone was there to keep an eye on her from Gate to Gate, so all will be well. I was not going to worry about this.<br />
<br />
The day dawned in the middle of a howling gale with flights delayed and hers cancelled, but they put her on an earlier flight which meant a rush to the airport. She was last off the plane and came through the doors with an air-hostess. Even though she said the flight was awfully bumpy and someone behind her had been sick, she was just fine. And I breathed a huge sigh of relief. All was well. Fantastic! The plan had gone according to plan! What a miracle!<br />
<br />
But, as we all know, nothing <i>really</i> ever goes to plan, does it?<br />
<br />
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi023ufyar4RoamCUk8t_jWGyjJUEf6rAJXDqH2B_PuMi_0O0_thWYtE3D6vIB93xz4XxlL7fnfD5OYg4XntrN4_kyoFvR5VJKsqCVVS0prFqa1OWviJ0qeJe5z9QNw5EHMhX6uD5Gd9aY/s1600/Air+NZ+Sweets.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" data-original-height="207" data-original-width="245" height="168" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi023ufyar4RoamCUk8t_jWGyjJUEf6rAJXDqH2B_PuMi_0O0_thWYtE3D6vIB93xz4XxlL7fnfD5OYg4XntrN4_kyoFvR5VJKsqCVVS0prFqa1OWviJ0qeJe5z9QNw5EHMhX6uD5Gd9aY/s200/Air+NZ+Sweets.jpg" width="200" /></a>She got into the car and showed me a large paper cup full to brimming with sweets. (On Air New Zealand it is customary, and always has been, to had out boiled sweets just before landing.) She also had managed to score two packets of crisps and three cookies. Hmmm.... did the flight attendants think she needed feeding up? Or had she applied the charm and asked to take some extras "for her family"?<br />
<br />
<br />
<br />
The other thing that happened was slightly less straightforward but food was at the centre of it all. She has been given an opportunity to be on a committee helping to organise "Mix and Mingle" events for her residential community. I was delighted when she told me that she had this responsibility and that she enjoyed going to meetings and talking about their next event, organising invitations and designing flyers on the computer and so on.<br />
<br />
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhBCHGPxq4q4SfjAWTqvtolOmZsyQ_v2iNcmhQI6ItI4nCp86wGuaPJaNXB5qomKbCCZ7XwExuq9Nm8thFQuZj_fO99kJ-vrjeXled9sc0uOEsyCthoJNi1UQBvu1efE64MG47I-s1HdFM/s1600/pizza+and+chips.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" data-original-height="225" data-original-width="225" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhBCHGPxq4q4SfjAWTqvtolOmZsyQ_v2iNcmhQI6ItI4nCp86wGuaPJaNXB5qomKbCCZ7XwExuq9Nm8thFQuZj_fO99kJ-vrjeXled9sc0uOEsyCthoJNi1UQBvu1efE64MG47I-s1HdFM/s200/pizza+and+chips.jpg" width="200" /></a>However, the food available at this place was your average burger and chips, pizza and chips, fish and chips. The place also served alcohol. Bear in mind that she was the only person with PWS and the whole idea of having to eat <i>before</i> going out in the evening was simply not going to work once she knew what else was available... so inevitably you're staring disaster in the face. No matter all the cautionary words of wisdom about good choices, all the promises made, all the extra exercise that might (or might not) have taken place, the temptation is really too great to expect her to cope with.<br />
<br />
Now combine this with the position of responsibility of being on the committee ("I can't possibly go after the food is served, I'm <i>on the committee</i>!) and it's bound to go pear-shaped. As it did the other night. She gaily ran up a bar tab ("I am allowed to do this, I'm <i>on the committee!), </i>and ordered pretty much one of everything. It wasn't a great night all in all and the next day wasn't much better as remonstrations had to come, and consequences of debt had to be faced.<br />
<br />
I realised that, for her, a "position of responsibility" became quickly translated into a "position of authority" which allowed her to think she had the right to do what she liked. Anyway, after the remonstrations came the capitulations and new strategies put in place for food, bar tabs, and authority.<br />
<br />
So, whether stretching her independence wings by flying solo, or being on a committee, there are always - as my Grandfather would say - many a slip twixt cup and lip. Finding the balance is the reality.<br />
<br />
<br />
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Tui Chizownhttp://www.blogger.com/profile/11362569853162067460noreply@blogger.com0tag:blogger.com,1999:blog-1343067279870496201.post-75856163077237249892017-08-19T15:24:00.003+12:002017-08-19T15:24:44.006+12:00Viviendo y trabajando con el síndrome de Prader-Willi<div dir="ltr" style="text-align: left;" trbidi="on">
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Enviado por Jackie Waters (UK)<br />
<i>Translated by Mariona Nadal (Spain)</i> </div>
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Es
una de las pequeñas ironías de la vida que el síndrome de Prader-Willi
(SPW) llegara a mi vida, yo era muy exigente con la comida, y con tan
poco apetito yo tuve un peso muy bajo hasta después de que nacieran mis
dos hijos.</div>
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Mi primer hijo fue una niña, Esther,
nacida en 1978 por cesárea. Fue evidente de forma inmediata que algo no
iba bien. Era muy blandita y no podía succionar. Estuve con ella en el
hospital durante un mes mientras la sometían a pruebas. Síndrome de
Down, parálisis cerebral, algún tipo de problema muscular, todo fue
descartado, por tanto, nos dieron de alta del hospital con un
diagnóstico general de "fracaso para prosperar".</div>
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Otra
de las pequeñas ironías de la vida fue que, durante sus primeros meses
de vida, Esther tenía muchas dificultades para comer. No lloraba y
dormía mucho. Tuvimos que poner el despertador para alimentarla, usar
una cucharita o apretar la tetina para intentar que unas gotas de leche
entraran en su boca. Una vez empezó con los alimentos sólidos, empezó a
comer bien, y yo tuve todas las esperanzas de que sus retrocesos
iniciales ya eran parte del pasado. Su tono muscular mejoró
gradualmente, pero seguía débil, así que no caminó hasta los 19 meses de
edad - bastante pronto, lo sé, para los niños con SPW.</div>
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<br /></div>
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Era
un poco raro que mi adorable hijita se comiera todo lo que le ponía
delante. Raro por mis propias manías con la comida y porque la mayoría
de niños pequeños no comen cosas como repollo frío - que es lo que un
amigo macrobiótico con quien estábamos pasando unos días cuando Esther
tenía unos 3 años nos puso para desayunar. Esther se lo comió con gusto.</div>
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Sobre
los 4 años de edad, empezó ganar peso. Raro de nuevo. Yo tenía
tendencia a darle raciones pequeñas que reflejaban mi poco apetito, por
tanto, ¿cómo podía estar engordando?</div>
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<br /></div>
<div>
Estuvimos
viendo pediatras cada medio año, más o menos, quienes meritoriamente
estaban contentos con su progreso, salvo porque su habla y lenguaje eran
casi inexistente, aunque se comunicaba con signos y sonidos y estaba
claro que su comprensión era relativamente buena. Cuando cumplió los 5, y
el aumento de peso se fue haciendo obvio, mi mundo se puso del revés
cuando una visita rutinaria al pediatra se convirtió en el día que
Esther fue finalmente diagnosticada.</div>
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<div>
"Creo que
sé cuál es el problema", dijo. "Creo que tiene síndrome de
Prader-Willi." Me mostró algunas fotos de niños de un libro médico y sí,
Esther se parecía sin duda a ellos. Dijo que mandaría una muestra de
sangre para hacer un test genético de confirmación, pero incluso cuando
llegó el resultado negativo, yo sabía en el fondo de mi corazón que eso
era lo que ella tenía. En esa época, los tests genéticos para el SPW
estaban en sus primeros años; otro test cuando tenía ya 16 años detectó
una pequeña anomalía genética. El pediatra dijo que Esther era sólo el
segundo niño que él había jamás diagnosticado con el síndrome y que no
podía contarme demasiado sobre él, a parte de cortar de raíz el darle
dulces, galletas, pasteles, ...</div>
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<br /></div>
<div>
Esto fue,
evidentemente, en los tiempos antes de internet, y cualquier tipo de
información era muy difícil de encontrar. La enfermera y el pediatra
clínico me dieron la dirección de la joven Asociación SPW, que se había
creado apenas un par de años antes, y era gestionada durante su tiempo
libre por una pareja cuyo hijo también recibió el diagnóstico. La única
información que me pudieron mandar fue un librito de Estados Unidos,
donde se creó la primera Asociación SPW del mundo, en 1978, el año que
nació Esther. De ahí aprendí que el síndrome llevaba el nombre de los
doctores suizos, el profesor Prader y el doctor Willi (junto con el
doctor Labhart cuyo nombre se cayó en el algún momento) que describieron
por primera vez el síndrome en 1956.</div>
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<br /></div>
<div>
<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: right; margin-left: 1em; text-align: right;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhjSls3MzZDNKIo1sWkF4ffj3MQTLE7HL7vnRWMWYsthZlL9yatL9nQ1pnrxdUkyNnAhGNixx3OvNnGmEcmLjrTfUm8UjYuVm10z8y3IPGJvPBGR90lMvEZp4w1W2TSPHGDHK2OFE-o5B8/s1600/Andreas+Prader_JPM.jpg" imageanchor="1" style="clear: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" data-original-height="283" data-original-width="361" height="156" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhjSls3MzZDNKIo1sWkF4ffj3MQTLE7HL7vnRWMWYsthZlL9yatL9nQ1pnrxdUkyNnAhGNixx3OvNnGmEcmLjrTfUm8UjYuVm10z8y3IPGJvPBGR90lMvEZp4w1W2TSPHGDHK2OFE-o5B8/s200/Andreas+Prader_JPM.jpg" width="200" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">El Dr Andrea Prader con Jean Phillips-Martinsson (UK)</td></tr>
</tbody></table>
<picture> </picture>La
mayor parte del librito era horripilante, y encontré varias pastes en
las que no podía ni mirar. Según contaban, mi angélica niñita iba a
convertirse en un monstruo delirante, que se comería todo lo que se
encontrara en su camino, y a la vez tendría severas rabietas de
temperamento y rabia. Aún más, nunca desarrollaría madurez sexual, no
tendría hijos y sería más baja que la media. ¿Cómo podía suceder eso?</div>
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Sucede,
lo sé, porque la anomalía genética del SPW afecta al área del
hipotálamo en el cerebro. Que resulta controlar las hormonas que afectan
al apetito, al crecimiento, al sueño y a las emociones.</div>
<div>
Juré
que haría todo lo posible para despertar a mi hija de esta pesadilla. Me
uní a PWSA UK, fui a sus reuniones y conferencias, y, en 1987, tres
años después del nacimiento de mi segundo hijo (sin problemas), me uní a
la junta directiva.</div>
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En ese momento, poco se
sabía sobre la vida de los adultos con SPW - se decía que seguían
engordando y que pocas personas superaban los 30 años de edad. Sugerí
hacer una encuesta entre los padres con los que estábamos en contacto
que tenían hijos adultos con SPW. Un psiquiatra de Birmingham, el Dr.
David Clarke, se interesó en lo que yo estaba haciendo y los resultados
se publicaron finalmente en 1989[i].</div>
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<br /></div>
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Y así me
convertí por defecto en la responsable de información para la PWSA UK,
trabajando como voluntaria hasta 1991, y luego como empleada con sueldo,
a temporadas a tiempo parcial, a temporadas a jornada completa. Mi rol
actual es el de Gerente del Equipo de Apoyo. Nuestro equipo de apoyo
ayuda a las familias y personas con SPW a tener el apoyo y el cuidado
que necesitan, respuestas a sus preguntas sobre cualquier aspecto de la
vida con SPW, y a la formación de los cuidadores profesionales. Aún soy
responsable de escribir una buena parte de la literatura de la
Asociación, la mayor parte de la cual está disponible en su sitio web.</div>
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<br /></div>
<div>
<b>Entonces, qué he aprendido en mis 39 de vivir y trabajar con el SPW?</b></div>
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<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgU2ULRweZqA78AinHgeBzoCtEU_gx9GYeHncRV_GICVnwdj7pz33jzI50HFW89hKEiWknIIkg-jexbzmuwzkhT1Prv_Xl6XC-oVrUoVLrwwDqckTJCyAAlo9_Gqrpc9WyGnMO2EWlR3is/s1600/Child+in+fridge.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" data-original-height="829" data-original-width="634" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgU2ULRweZqA78AinHgeBzoCtEU_gx9GYeHncRV_GICVnwdj7pz33jzI50HFW89hKEiWknIIkg-jexbzmuwzkhT1Prv_Xl6XC-oVrUoVLrwwDqckTJCyAAlo9_Gqrpc9WyGnMO2EWlR3is/s200/Child+in+fridge.jpg" width="152" /></a></div>
He
aprendido que el SPW es una condición increíblemente compleja que se da
tan sólo en unas 2000 personas en el Reino Unido. Desafortunadamente,
puede suceder en cualquier familia, pues el 95% de los casos son "de
novo", es decir, sin antecedentes familiares. Afortunadamente, en muy
pocos casos es hereditaria. La genética es una fuente continua de
interés para los expertos en el campo, como lo es encontrar una "cura"
para el apetito excesivo (hiperfagia). Ahora sabemos, gracias a las
resonancias magnéticas del cerebro, que los mensajes desde el estómago
al cerebro, avisando de que se ha comido suficiente, no están llegando
completamente al cerebro, dando lugar a un estado de hambre casi
perpetuo. El bajo tono muscular (hipotonía) que continua a lo largo de
toda la vida impone un doble contratiempo en las personas con SPW:
realmente necesitan menos calorías que las personas de su misma edad y
altura para mantener un peso saludable: esta fue la razón por la que mi
hija engordó cuando era pequeña. No fue porque yo le diera de comer
demasiado, fue porque sus requisitos calóricos eran bastante más bajos
que los de los otros niños.</div>
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<br /></div>
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La lucha por
mantener las calorías bajas, junto con la búsqueda de comida por parte
del individuo con SPW para saciar su hambre, hace que éste sea un
síndrome con el que sea difícil convivir. No sólo esto, además su
inmaduro desarrollo social y emocional significa que incluso aquellos
que por su nivel intelectual deberían poder manejarlo (aunque la mayoría
tienen dificultades en el aprendizaje, una minoría significante no las
tienen) no son capaces de gestionar el estrés y las complejidades de la
vida diaria, lo que lleva a menudo a rabietas que a veces conllevan
agresiones físicas. Hay una amplia gama de otros retos de
comportamiento, tan peculiares del SPW que los psiquiatras los describen
como "fenotipo conductual".</div>
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Para la mayoría de
las familias con niños pequeños que pueden manejar la dieta de su hijo,
el SPW no impacta durante todo el tiempo - las rabietas pueden no ser
muy frecuentes, o relativamente fáciles de manejar. Ciertamente ese fue
mi caso, y Esther era, cuando era más joven, muy buena en mantener su
régimen dietético, con mi apoyo. Sin embargo, a medida que las personas
con SPW se hacen mayores, la independencia se convierte en un gran
problema. Si se les deja por su cuenta, en la mayoría de los casos, la
persona seguirá comiendo hasta que todos los problemas de salud
relacionados con la obesidad hagan su aparición. Tristemente, aún oímos
casos de fallecimientos de jóvenes de 20-30 años, a pesar de que la
persona más mayor con el síndrome que se conoce tenía 74 años cuando
falleció. Sólo un puñado, sin embargo, superan hoy en día los 60 años.</div>
<div>
<br /></div>
<div>
Para
manejar las dificultades del síndrome, han surgido unos cuantos hogares
residenciales especializados donde el acceso a la comida está muy
restringido y donde el personal ha sido entrenado para manejar los
desafíos que el comportamiento de algunas personas presenta. La historia
de Esther es compleja, y no todo tiene que ver con el SPW, pero
actualmente va muy bien en el hogar en el que ha estado viviendo desde
hace ahora 2 años, habiendo perdido unos 25 kilos de peso.</div>
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<br /></div>
<div>
El
SPW ha cambiado mi vida. No estaba planificado en mi carrera (quien lo
querría realmente?), pero me ha enseñado mucho. He aprendido a no juzgar
a las personas que están obesas y he conocido gente de todos los
ámbitos de la vida y de todo el mundo. En mi trabajo como antiguo
miembro de la junta directiva de la Organización Internacional para el
SPW (IPWSO) <a href="http://www.ipwso.org/">www.ipwso.org</a> he viajado a
país tan apartados geográfica y culturalmente como Noruega y Taiwán,
pero en todos los países, los niños y adultos con SPW hacen frente a los
mismos desafíos. Es un honor para mi haber sido invitada a ser
representante de las familias y personas con SPW en el Consejo de
Pacientes EASO y espero con mucho interés conocer a otros miembros del
Consejo en el próximo Congreso de Portugal en mayo. </div>
<div>
<br /></div>
<div>
[i] <a href="https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1291957/">https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1291957/</a> – Adults with Prader-Willi Syndrome: abnormalities of sleep and behaviour.</div>
</div>
Tui Chizownhttp://www.blogger.com/profile/11362569853162067460noreply@blogger.com0tag:blogger.com,1999:blog-1343067279870496201.post-5239156008025601262017-08-10T16:57:00.004+12:002017-08-10T17:01:02.306+12:00Behaviour in PWS - where? What? Why?<div dir="ltr" style="text-align: left;" trbidi="on">
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<w:LsdException Locked="false" Priority="1" SemiHidden="true"
UnhideWhenUsed="true" Name="Default Paragraph Font"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Body Text"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Body Text Indent"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="List Continue"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="List Continue 2"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="List Continue 3"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="List Continue 4"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="List Continue 5"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Message Header"/>
<w:LsdException Locked="false" Priority="11" QFormat="true" Name="Subtitle"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Salutation"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Date"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Body Text First Indent"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Body Text First Indent 2"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Note Heading"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Body Text 2"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Body Text 3"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Body Text Indent 2"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Body Text Indent 3"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Block Text"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Hyperlink"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="FollowedHyperlink"/>
<w:LsdException Locked="false" Priority="22" QFormat="true" Name="Strong"/>
<w:LsdException Locked="false" Priority="20" QFormat="true" Name="Emphasis"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Document Map"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Plain Text"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="E-mail Signature"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="HTML Top of Form"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="HTML Bottom of Form"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Normal (Web)"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="HTML Acronym"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="HTML Address"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="HTML Cite"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="HTML Code"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="HTML Definition"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="HTML Keyboard"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="HTML Preformatted"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="HTML Sample"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="HTML Typewriter"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="HTML Variable"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Normal Table"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="annotation subject"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="No List"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Outline List 1"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Outline List 2"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Outline List 3"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Table Simple 1"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Table Simple 2"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Table Simple 3"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Table Classic 1"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Table Classic 2"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Table Classic 3"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Table Classic 4"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Table Colorful 1"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Table Colorful 2"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Table Colorful 3"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Table Columns 1"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Table Columns 2"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Table Columns 3"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Table Columns 4"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Table Columns 5"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Table Grid 1"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Table Grid 2"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Table Grid 3"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Table Grid 4"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Table Grid 5"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Table Grid 6"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Table Grid 7"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Table Grid 8"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Table List 1"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Table List 2"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Table List 3"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Table List 4"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Table List 5"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Table List 6"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Table List 7"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Table List 8"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Table 3D effects 1"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Table 3D effects 2"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Table 3D effects 3"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Table Contemporary"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Table Elegant"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Table Professional"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Table Subtle 1"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Table Subtle 2"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Table Web 1"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Table Web 2"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Table Web 3"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Balloon Text"/>
<w:LsdException Locked="false" Priority="39" Name="Table Grid"/>
<w:LsdException Locked="false" SemiHidden="true" UnhideWhenUsed="true"
Name="Table Theme"/>
<w:LsdException Locked="false" SemiHidden="true" Name="Placeholder Text"/>
<w:LsdException Locked="false" Priority="1" QFormat="true" Name="No Spacing"/>
<w:LsdException Locked="false" Priority="60" Name="Light Shading"/>
<w:LsdException Locked="false" Priority="61" Name="Light List"/>
<w:LsdException Locked="false" Priority="62" Name="Light Grid"/>
<w:LsdException Locked="false" Priority="63" Name="Medium Shading 1"/>
<w:LsdException Locked="false" Priority="64" Name="Medium Shading 2"/>
<w:LsdException Locked="false" Priority="65" Name="Medium List 1"/>
<w:LsdException Locked="false" Priority="66" Name="Medium List 2"/>
<w:LsdException Locked="false" Priority="67" Name="Medium Grid 1"/>
<w:LsdException Locked="false" Priority="68" Name="Medium Grid 2"/>
<w:LsdException Locked="false" Priority="69" Name="Medium Grid 3"/>
<w:LsdException Locked="false" Priority="70" Name="Dark List"/>
<w:LsdException Locked="false" Priority="71" Name="Colorful Shading"/>
<w:LsdException Locked="false" Priority="72" Name="Colorful List"/>
<w:LsdException Locked="false" Priority="73" Name="Colorful Grid"/>
<w:LsdException Locked="false" Priority="60" Name="Light Shading Accent 1"/>
<w:LsdException Locked="false" Priority="61" Name="Light List Accent 1"/>
<w:LsdException Locked="false" Priority="62" Name="Light Grid Accent 1"/>
<w:LsdException Locked="false" Priority="63" Name="Medium Shading 1 Accent 1"/>
<w:LsdException Locked="false" Priority="64" Name="Medium Shading 2 Accent 1"/>
<w:LsdException Locked="false" Priority="65" Name="Medium List 1 Accent 1"/>
<w:LsdException Locked="false" SemiHidden="true" Name="Revision"/>
<w:LsdException Locked="false" Priority="34" QFormat="true"
Name="List Paragraph"/>
<w:LsdException Locked="false" Priority="29" QFormat="true" Name="Quote"/>
<w:LsdException Locked="false" Priority="30" QFormat="true"
Name="Intense Quote"/>
<w:LsdException Locked="false" Priority="66" Name="Medium List 2 Accent 1"/>
<w:LsdException Locked="false" Priority="67" Name="Medium Grid 1 Accent 1"/>
<w:LsdException Locked="false" Priority="68" Name="Medium Grid 2 Accent 1"/>
<w:LsdException Locked="false" Priority="69" Name="Medium Grid 3 Accent 1"/>
<w:LsdException Locked="false" Priority="70" Name="Dark List Accent 1"/>
<w:LsdException Locked="false" Priority="71" Name="Colorful Shading Accent 1"/>
<w:LsdException Locked="false" Priority="72" Name="Colorful List Accent 1"/>
<w:LsdException Locked="false" Priority="73" Name="Colorful Grid Accent 1"/>
<w:LsdException Locked="false" Priority="60" Name="Light Shading Accent 2"/>
<w:LsdException Locked="false" Priority="61" Name="Light List Accent 2"/>
<w:LsdException Locked="false" Priority="62" Name="Light Grid Accent 2"/>
<w:LsdException Locked="false" Priority="63" Name="Medium Shading 1 Accent 2"/>
<w:LsdException Locked="false" Priority="64" Name="Medium Shading 2 Accent 2"/>
<w:LsdException Locked="false" Priority="65" Name="Medium List 1 Accent 2"/>
<w:LsdException Locked="false" Priority="66" Name="Medium List 2 Accent 2"/>
<w:LsdException Locked="false" Priority="67" Name="Medium Grid 1 Accent 2"/>
<w:LsdException Locked="false" Priority="68" Name="Medium Grid 2 Accent 2"/>
<w:LsdException Locked="false" Priority="69" Name="Medium Grid 3 Accent 2"/>
<w:LsdException Locked="false" Priority="70" Name="Dark List Accent 2"/>
<w:LsdException Locked="false" Priority="71" Name="Colorful Shading Accent 2"/>
<w:LsdException Locked="false" Priority="72" Name="Colorful List Accent 2"/>
<w:LsdException Locked="false" Priority="73" Name="Colorful Grid Accent 2"/>
<w:LsdException Locked="false" Priority="60" Name="Light Shading Accent 3"/>
<w:LsdException Locked="false" Priority="61" Name="Light List Accent 3"/>
<w:LsdException Locked="false" Priority="62" Name="Light Grid Accent 3"/>
<w:LsdException Locked="false" Priority="63" Name="Medium Shading 1 Accent 3"/>
<w:LsdException Locked="false" Priority="64" Name="Medium Shading 2 Accent 3"/>
<w:LsdException Locked="false" Priority="65" Name="Medium List 1 Accent 3"/>
<w:LsdException Locked="false" Priority="66" Name="Medium List 2 Accent 3"/>
<w:LsdException Locked="false" Priority="67" Name="Medium Grid 1 Accent 3"/>
<w:LsdException Locked="false" Priority="68" Name="Medium Grid 2 Accent 3"/>
<w:LsdException Locked="false" Priority="69" Name="Medium Grid 3 Accent 3"/>
<w:LsdException Locked="false" Priority="70" Name="Dark List Accent 3"/>
<w:LsdException Locked="false" Priority="71" Name="Colorful Shading Accent 3"/>
<w:LsdException Locked="false" Priority="72" Name="Colorful List Accent 3"/>
<w:LsdException Locked="false" Priority="73" Name="Colorful Grid Accent 3"/>
<w:LsdException Locked="false" Priority="60" Name="Light Shading Accent 4"/>
<w:LsdException Locked="false" Priority="61" Name="Light List Accent 4"/>
<w:LsdException Locked="false" Priority="62" Name="Light Grid Accent 4"/>
<w:LsdException Locked="false" Priority="63" Name="Medium Shading 1 Accent 4"/>
<w:LsdException Locked="false" Priority="64" Name="Medium Shading 2 Accent 4"/>
<w:LsdException Locked="false" Priority="65" Name="Medium List 1 Accent 4"/>
<w:LsdException Locked="false" Priority="66" Name="Medium List 2 Accent 4"/>
<w:LsdException Locked="false" Priority="67" Name="Medium Grid 1 Accent 4"/>
<w:LsdException Locked="false" Priority="68" Name="Medium Grid 2 Accent 4"/>
<w:LsdException Locked="false" Priority="69" Name="Medium Grid 3 Accent 4"/>
<w:LsdException Locked="false" Priority="70" Name="Dark List Accent 4"/>
<w:LsdException Locked="false" Priority="71" Name="Colorful Shading Accent 4"/>
<w:LsdException Locked="false" Priority="72" Name="Colorful List Accent 4"/>
<w:LsdException Locked="false" Priority="73" Name="Colorful Grid Accent 4"/>
<w:LsdException Locked="false" Priority="60" Name="Light Shading Accent 5"/>
<w:LsdException Locked="false" Priority="61" Name="Light List Accent 5"/>
<w:LsdException Locked="false" Priority="62" Name="Light Grid Accent 5"/>
<w:LsdException Locked="false" Priority="63" Name="Medium Shading 1 Accent 5"/>
<w:LsdException Locked="false" Priority="64" Name="Medium Shading 2 Accent 5"/>
<w:LsdException Locked="false" Priority="65" Name="Medium List 1 Accent 5"/>
<w:LsdException Locked="false" Priority="66" Name="Medium List 2 Accent 5"/>
<w:LsdException Locked="false" Priority="67" Name="Medium Grid 1 Accent 5"/>
<w:LsdException Locked="false" Priority="68" Name="Medium Grid 2 Accent 5"/>
<w:LsdException Locked="false" Priority="69" Name="Medium Grid 3 Accent 5"/>
<w:LsdException Locked="false" Priority="70" Name="Dark List Accent 5"/>
<w:LsdException Locked="false" Priority="71" Name="Colorful Shading Accent 5"/>
<w:LsdException Locked="false" Priority="72" Name="Colorful List Accent 5"/>
<w:LsdException Locked="false" Priority="73" Name="Colorful Grid Accent 5"/>
<w:LsdException Locked="false" Priority="60" Name="Light Shading Accent 6"/>
<w:LsdException Locked="false" Priority="61" Name="Light List Accent 6"/>
<w:LsdException Locked="false" Priority="62" Name="Light Grid Accent 6"/>
<w:LsdException Locked="false" Priority="63" Name="Medium Shading 1 Accent 6"/>
<w:LsdException Locked="false" Priority="64" Name="Medium Shading 2 Accent 6"/>
<w:LsdException Locked="false" Priority="65" Name="Medium List 1 Accent 6"/>
<w:LsdException Locked="false" Priority="66" Name="Medium List 2 Accent 6"/>
<w:LsdException Locked="false" Priority="67" Name="Medium Grid 1 Accent 6"/>
<w:LsdException Locked="false" Priority="68" Name="Medium Grid 2 Accent 6"/>
<w:LsdException Locked="false" Priority="69" Name="Medium Grid 3 Accent 6"/>
<w:LsdException Locked="false" Priority="70" Name="Dark List Accent 6"/>
<w:LsdException Locked="false" Priority="71" Name="Colorful Shading Accent 6"/>
<w:LsdException Locked="false" Priority="72" Name="Colorful List Accent 6"/>
<w:LsdException Locked="false" Priority="73" Name="Colorful Grid Accent 6"/>
<w:LsdException Locked="false" Priority="19" QFormat="true"
Name="Subtle Emphasis"/>
<w:LsdException Locked="false" Priority="21" QFormat="true"
Name="Intense Emphasis"/>
<w:LsdException Locked="false" Priority="31" QFormat="true"
Name="Subtle Reference"/>
<w:LsdException Locked="false" Priority="32" QFormat="true"
Name="Intense Reference"/>
<w:LsdException Locked="false" Priority="33" QFormat="true" Name="Book Title"/>
<w:LsdException Locked="false" Priority="37" SemiHidden="true"
UnhideWhenUsed="true" Name="Bibliography"/>
<w:LsdException Locked="false" Priority="39" SemiHidden="true"
UnhideWhenUsed="true" QFormat="true" Name="TOC Heading"/>
<w:LsdException Locked="false" Priority="41" Name="Plain Table 1"/>
<w:LsdException Locked="false" Priority="42" Name="Plain Table 2"/>
<w:LsdException Locked="false" Priority="43" Name="Plain Table 3"/>
<w:LsdException Locked="false" Priority="44" Name="Plain Table 4"/>
<w:LsdException Locked="false" Priority="45" Name="Plain Table 5"/>
<w:LsdException Locked="false" Priority="40" Name="Grid Table Light"/>
<w:LsdException Locked="false" Priority="46" Name="Grid Table 1 Light"/>
<w:LsdException Locked="false" Priority="47" Name="Grid Table 2"/>
<w:LsdException Locked="false" Priority="48" Name="Grid Table 3"/>
<w:LsdException Locked="false" Priority="49" Name="Grid Table 4"/>
<w:LsdException Locked="false" Priority="50" Name="Grid Table 5 Dark"/>
<w:LsdException Locked="false" Priority="51" Name="Grid Table 6 Colorful"/>
<w:LsdException Locked="false" Priority="52" Name="Grid Table 7 Colorful"/>
<w:LsdException Locked="false" Priority="46"
Name="Grid Table 1 Light Accent 1"/>
<w:LsdException Locked="false" Priority="47" Name="Grid Table 2 Accent 1"/>
<w:LsdException Locked="false" Priority="48" Name="Grid Table 3 Accent 1"/>
<w:LsdException Locked="false" Priority="49" Name="Grid Table 4 Accent 1"/>
<w:LsdException Locked="false" Priority="50" Name="Grid Table 5 Dark Accent 1"/>
<w:LsdException Locked="false" Priority="51"
Name="Grid Table 6 Colorful Accent 1"/>
<w:LsdException Locked="false" Priority="52"
Name="Grid Table 7 Colorful Accent 1"/>
<w:LsdException Locked="false" Priority="46"
Name="Grid Table 1 Light Accent 2"/>
<w:LsdException Locked="false" Priority="47" Name="Grid Table 2 Accent 2"/>
<w:LsdException Locked="false" Priority="48" Name="Grid Table 3 Accent 2"/>
<w:LsdException Locked="false" Priority="49" Name="Grid Table 4 Accent 2"/>
<w:LsdException Locked="false" Priority="50" Name="Grid Table 5 Dark Accent 2"/>
<w:LsdException Locked="false" Priority="51"
Name="Grid Table 6 Colorful Accent 2"/>
<w:LsdException Locked="false" Priority="52"
Name="Grid Table 7 Colorful Accent 2"/>
<w:LsdException Locked="false" Priority="46"
Name="Grid Table 1 Light Accent 3"/>
<w:LsdException Locked="false" Priority="47" Name="Grid Table 2 Accent 3"/>
<w:LsdException Locked="false" Priority="48" Name="Grid Table 3 Accent 3"/>
<w:LsdException Locked="false" Priority="49" Name="Grid Table 4 Accent 3"/>
<w:LsdException Locked="false" Priority="50" Name="Grid Table 5 Dark Accent 3"/>
<w:LsdException Locked="false" Priority="51"
Name="Grid Table 6 Colorful Accent 3"/>
<w:LsdException Locked="false" Priority="52"
Name="Grid Table 7 Colorful Accent 3"/>
<w:LsdException Locked="false" Priority="46"
Name="Grid Table 1 Light Accent 4"/>
<w:LsdException Locked="false" Priority="47" Name="Grid Table 2 Accent 4"/>
<w:LsdException Locked="false" Priority="48" Name="Grid Table 3 Accent 4"/>
<w:LsdException Locked="false" Priority="49" Name="Grid Table 4 Accent 4"/>
<w:LsdException Locked="false" Priority="50" Name="Grid Table 5 Dark Accent 4"/>
<w:LsdException Locked="false" Priority="51"
Name="Grid Table 6 Colorful Accent 4"/>
<w:LsdException Locked="false" Priority="52"
Name="Grid Table 7 Colorful Accent 4"/>
<w:LsdException Locked="false" Priority="46"
Name="Grid Table 1 Light Accent 5"/>
<w:LsdException Locked="false" Priority="47" Name="Grid Table 2 Accent 5"/>
<w:LsdException Locked="false" Priority="48" Name="Grid Table 3 Accent 5"/>
<w:LsdException Locked="false" Priority="49" Name="Grid Table 4 Accent 5"/>
<w:LsdException Locked="false" Priority="50" Name="Grid Table 5 Dark Accent 5"/>
<w:LsdException Locked="false" Priority="51"
Name="Grid Table 6 Colorful Accent 5"/>
<w:LsdException Locked="false" Priority="52"
Name="Grid Table 7 Colorful Accent 5"/>
<w:LsdException Locked="false" Priority="46"
Name="Grid Table 1 Light Accent 6"/>
<w:LsdException Locked="false" Priority="47" Name="Grid Table 2 Accent 6"/>
<w:LsdException Locked="false" Priority="48" Name="Grid Table 3 Accent 6"/>
<w:LsdException Locked="false" Priority="49" Name="Grid Table 4 Accent 6"/>
<w:LsdException Locked="false" Priority="50" Name="Grid Table 5 Dark Accent 6"/>
<w:LsdException Locked="false" Priority="51"
Name="Grid Table 6 Colorful Accent 6"/>
<w:LsdException Locked="false" Priority="52"
Name="Grid Table 7 Colorful Accent 6"/>
<w:LsdException Locked="false" Priority="46" Name="List Table 1 Light"/>
<w:LsdException Locked="false" Priority="47" Name="List Table 2"/>
<w:LsdException Locked="false" Priority="48" Name="List Table 3"/>
<w:LsdException Locked="false" Priority="49" Name="List Table 4"/>
<w:LsdException Locked="false" Priority="50" Name="List Table 5 Dark"/>
<w:LsdException Locked="false" Priority="51" Name="List Table 6 Colorful"/>
<w:LsdException Locked="false" Priority="52" Name="List Table 7 Colorful"/>
<w:LsdException Locked="false" Priority="46"
Name="List Table 1 Light Accent 1"/>
<w:LsdException Locked="false" Priority="47" Name="List Table 2 Accent 1"/>
<w:LsdException Locked="false" Priority="48" Name="List Table 3 Accent 1"/>
<w:LsdException Locked="false" Priority="49" Name="List Table 4 Accent 1"/>
<w:LsdException Locked="false" Priority="50" Name="List Table 5 Dark Accent 1"/>
<w:LsdException Locked="false" Priority="51"
Name="List Table 6 Colorful Accent 1"/>
<w:LsdException Locked="false" Priority="52"
Name="List Table 7 Colorful Accent 1"/>
<w:LsdException Locked="false" Priority="46"
Name="List Table 1 Light Accent 2"/>
<w:LsdException Locked="false" Priority="47" Name="List Table 2 Accent 2"/>
<w:LsdException Locked="false" Priority="48" Name="List Table 3 Accent 2"/>
<w:LsdException Locked="false" Priority="49" Name="List Table 4 Accent 2"/>
<w:LsdException Locked="false" Priority="50" Name="List Table 5 Dark Accent 2"/>
<w:LsdException Locked="false" Priority="51"
Name="List Table 6 Colorful Accent 2"/>
<w:LsdException Locked="false" Priority="52"
Name="List Table 7 Colorful Accent 2"/>
<w:LsdException Locked="false" Priority="46"
Name="List Table 1 Light Accent 3"/>
<w:LsdException Locked="false" Priority="47" Name="List Table 2 Accent 3"/>
<w:LsdException Locked="false" Priority="48" Name="List Table 3 Accent 3"/>
<w:LsdException Locked="false" Priority="49" Name="List Table 4 Accent 3"/>
<w:LsdException Locked="false" Priority="50" Name="List Table 5 Dark Accent 3"/>
<w:LsdException Locked="false" Priority="51"
Name="List Table 6 Colorful Accent 3"/>
<w:LsdException Locked="false" Priority="52"
Name="List Table 7 Colorful Accent 3"/>
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<br />
<div class="MsoNormal">
</div>
<div class="MsoNormal">
In .52 of a second, Google furnished me with a choice of
158,000 articles on behaviour in Prader-Willi syndrome.<span style="mso-spacerun: yes;"> </span>It is overwhelming and if I were a new
parent, I would not know where to start.<span style="mso-spacerun: yes;">
</span>In fact, I probably would yell at Google, close the page and burst into
tears.<span style="mso-spacerun: yes;"> </span>There are scholarly articles,
there are profiles of behaviours, advice on managing behaviours of
pre-schoolers, toddlers, pre-teens, teens, adult and so on.<span style="mso-spacerun: yes;"> </span>After 20 pages of Google and in amongst all the PWS articles, suddenly I find a
page on growing marijuana and by this stage, I’m thinking “what a
good idea!”</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Personally, I think that finding a PWS Association either
online or in reality, is the best possible thing to do.<span style="mso-spacerun: yes;"> </span>To be able to talk to someone face to face,
or on the phone, or even just an email, will result in a calmer,
easier-to-understand answer than trying to assimilate information from 158,000
different articles.<span style="mso-spacerun: yes;"> </span>That’s just
frightening.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
The best possible thing you can learn about behaviour and
PWS is that children and adults are all different.<span style="mso-spacerun: yes;"> </span>They are people first, and just happen to
have Prader-Willi syndrome.<span style="mso-spacerun: yes;"> </span>Knowing your
child, what motivates them, what they love and who they love, what scares them,
what makes them anxious, and so on, is the first step towards understanding
behaviour.<span style="mso-spacerun: yes;"> </span>When you stop and think about
it, everything we do, from getting up in the morning to going to bed at night,
invokes behaviour of some kind or another.<span style="mso-spacerun: yes;">
</span>Our behaviour sends messages to others in many different ways – no matter
whether we have a disability or not.<span style="mso-spacerun: yes;"> </span>It’s
how we interact.<span style="mso-spacerun: yes;"> </span></div>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi8dJEN37ttAt0XNcT9wyAhOqCdmE_sTNPcB1WnyRgS968IC6ZscNgz89nIvIY-4jw7xpfPGo7nHSqQl3J1sefQyE0jk9WVxKMuwxI15Qziiodfh0ODVfmo-5UsvDQq78zv2KbwMa805W4/s1600/phone+call.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" data-original-height="208" data-original-width="243" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi8dJEN37ttAt0XNcT9wyAhOqCdmE_sTNPcB1WnyRgS968IC6ZscNgz89nIvIY-4jw7xpfPGo7nHSqQl3J1sefQyE0jk9WVxKMuwxI15Qziiodfh0ODVfmo-5UsvDQq78zv2KbwMa805W4/s1600/phone+call.jpg" /></a></div>
<br />
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
I’ve watched the behaviour of my 32-year-old over the years
and can read her like a book.<span style="mso-spacerun: yes;"> </span>But I can
also do this with my other children as well, the only difference is that my 32-year-old
has more pages in her book.<span style="mso-spacerun: yes;"> </span>That’s
life.<span style="mso-spacerun: yes;"> </span>Whether her behaviour is
challenging,<i> </i>whether she’s testing whatever system that’s been put in place,
or whether it's her every-day behaviour, for me the most interesting thing is how she interacts with other
people.<span style="mso-spacerun: yes;"> </span>I used to worry that she would ‘snap’ if someone said or did the wrong thing – and by this I mean a stranger, not
someone she is familiar with because the more familiar she is with someone, the
more likely she is to let loose!<span style="mso-spacerun: yes;"> </span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
The other day, for example, I listened to her on the phone
to her bank.<span style="mso-spacerun: yes;"> </span>She was polite, very clear
in her request to transfer funds and knew exactly what she was talking about.<span style="mso-spacerun: yes;"> </span>She quickly and efficiently changed one
automatic payment into another.<span style="mso-spacerun: yes;"> </span>No
problem at all.</div>
<div class="MsoNormal">
<br /></div>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhINa4JSa0_aebQuSn-8uZoSiUq8Bzp_iL_KWPeqd_oEm37cJpkIdo7S8kzYDdDBpRrxtdSn-J9BhsK8GQGwsydvkQ90gmKQypHFOtfBbmR6-c4mydk_UIOT926vxTRsvuWa3WLnQRLd0k/s1600/cat+at+vet.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" data-original-height="203" data-original-width="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhINa4JSa0_aebQuSn-8uZoSiUq8Bzp_iL_KWPeqd_oEm37cJpkIdo7S8kzYDdDBpRrxtdSn-J9BhsK8GQGwsydvkQ90gmKQypHFOtfBbmR6-c4mydk_UIOT926vxTRsvuWa3WLnQRLd0k/s1600/cat+at+vet.jpg" /></a></div>
<div class="MsoNormal">
I’ve heard her ring and make a doctor’s appointment; phone
the library and request a particular book; she manages a visit to the Vet with
her cat perfectly well and asks all the right questions and makes sure she
knows the answers.<span style="mso-spacerun: yes;"> </span>In an emergency (her
concept of one) she will get herself down to the Emergency Department at the local hospital (with a staff person)
and wait until she can be seen.<span style="mso-spacerun: yes;"> </span>She
knows when she is ill (see previous blog on <a href="http://ipwso.blogspot.co.nz/2017/02/gastrointestinal-problems-hidden-enemy.html" target="_blank">gastroenteritis</a>).<span style="mso-spacerun: yes;"> </span>By being able to do these things she avoids
becoming anxious, frustrated, and angry.<span style="mso-spacerun: yes;">
</span>It has become so clear to me over the years that by first teaching her
about making good choices, she is able to do so much more for herself.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Sometimes, in the middle of a catastrophic outburst I tend
to forget everything I’ve just said above and feel as though I’m clinging to the
life-raft for all I’m worth. <span style="mso-spacerun: yes;"> </span>Just
getting through to the other side of the meltdown is all I’m hoping for at this
stage! I hate it when these happen because I know how terrible it is both for her, and for the person she is focussed on.<br />
<br />
I began to wonder what sort of chemical imbalance might be in place when these meltdowns got under way. So I asked Tony Holland about this and about his research with vagus nerve stimulation. He responded,<br />
<br />
"<i>Our work on vagus nerve stimulation suggested that people with PWS
essentially have a a low threshold for such outbursts and also impaired
emotional control - in other words people with PWS are easily triggered
and once it starts such an outburst more easily builds up and leads to
loss of control when compared to people without PWS. This appears to
be improved by vagus nerve stimulation. The vagus nerve is part of the
autonomic nervous system of the body that manages our response to threat
- what we think vagus nerve stimulation is doing is normalising that
response. The other rather different issue we are beginning to look at
are two chemical (neurotransmitter) systems in the brain - GABA and
glutamate - the former is inhibitory and the latter, excitatory. It may
be that an imbalance of these two systems is important - a new study we
are starting uses brain imaging to explore this hypothesis" </i><br />
<div>
<br /></div>
</div>
<div class="MsoNormal">
</div>
<div class="MsoNormal">
So, although I
know that there is much behavioural research going on with Oxytocin* <i>(Google: 1.10 seconds,
115,000 articles)</i> and the Vagus nerve stimulation** <i>(Google: .72 of a second, 60,600 articles),</i> I can’t help but think that deep down it pays to
really understand your child and what makes them tick. You may be surprised.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
(<i>If you would like help with behaviour issues and would like to talk to our specialists about this, please <a href="mailto:info.IPWSO@gmail.com" target="_blank">email</a> us)</i></div>
<div class="MsoNormal">
<i><br /></i></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
*Maith<span style="mso-bidi-font-family: Calibri; mso-bidi-theme-font: minor-latin;">é</span> Tauber <a href="https://www.ipwso.org/what-s-new" target="_blank">Oxytocin research</a> </div>
<div class="MsoNormal">
**Tony Holland <a href="https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4950305/" target="_blank">Vagus Nerve Stimulation</a><br />
<br />
<div>
<br /></div>
</div>
</div>
Tui Chizownhttp://www.blogger.com/profile/11362569853162067460noreply@blogger.com0tag:blogger.com,1999:blog-1343067279870496201.post-50106742216415962802017-08-07T17:16:00.002+12:002017-08-08T18:02:39.256+12:00Living and Working with Prader-Willi Syndrome<div dir="ltr" style="text-align: left;" trbidi="on">
<div class="MsoNormal">
<span style="mso-no-proof: yes;"><i>Submitted by Jackie Waters (UK)</i></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
</div>
<div class="MsoNormal">
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhq4E6I5JZXvyZjKdxUVUnsgqxkGCyjHX7Qv4cJsC4vIu81Zxw7qqY4krCFXVco3NEE0zUGmRm4eFvZG48fbBedCJ47mEkKwFoBtWqCaz46h2QNliznyoWYI2GWcbQ64gk_mqUGpyf_znk/s1600/Jackie+Gill.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" data-original-height="1600" data-original-width="1366" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhq4E6I5JZXvyZjKdxUVUnsgqxkGCyjHX7Qv4cJsC4vIu81Zxw7qqY4krCFXVco3NEE0zUGmRm4eFvZG48fbBedCJ47mEkKwFoBtWqCaz46h2QNliznyoWYI2GWcbQ64gk_mqUGpyf_znk/s200/Jackie+Gill.jpg" width="170" /></a></div>
It is one of life’s little ironies that before Prader-Willi
syndrome (PWS) came into my life I was a very picky eater, and with such a
small appetite that I was very underweight until after both my children had
been born.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
My first child was a daughter, Esther, born in 1978 by
Caesarean section. It was immediately clear that something was amiss. She was
very floppy and could not suck. I stayed with her in hospital for a month while
they carried out tests. Down syndrome, cerebral palsy and some sort of muscle
problem were all ruled out, so we were discharged from hospital with a catch-all
diagnosis of “failure to thrive”.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
And it was another of life’s little ironies that, for the
first few months of her life, Esther was very difficult to feed. She didn’t cry
and slept a good deal. We had to set the alarm to feed her, using a spoon or squeezing
a bottle, to try and get even a small amount of milk into her mouth. Once she
went onto more solid food, she began to pick up, and I had every hope that her
initial set-backs were in the past. Her muscle tone gradually improved, but
remained weak, so that she did not walk until 19 months old – quite early, I
now know, for children with PWS.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
What was a little strange about my adorable little daughter
was that she would eat anything I put in front of her. Strange because of my
own fastidiousness around food and because most little children will not eat
something like cold cabbage – which a macrobiotic friend we were staying with
when Esther was about three years old had presented us with for breakfast.
Esther ate it with relish.</div>
<div class="MsoNormal">
Then, around the age of four years old, she began to put on
weight. Strange again. I tended to give her small portions of food which
reflected my own small appetite, so why was she putting on weight?</div>
<div class="MsoNormal">
We had been seeing paediatricians every six months or so,
who were mostly happy with her progress, apart from her speech and language
which was almost non-existent, though she did communicate through signs and
noises and it was clear her comprehension was relatively good. When she was
nearly five, and the weight gain was becoming increasingly obvious, my world
was turned upside down when what was to be a routine visit to the paediatrician
turned out to be the day Esther was finally diagnosed.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
“I think I know what is the problem”, he announced. “I think
she has Prader-Willi syndrome.” He showed me some pictures of children in a
medical book and yes, Esther looked uncannily like them. He said he would send
off a blood sample for a genetic test for confirmation, but even when it came
back negative, I knew in my heart of hearts that this was what she had. At that
time, genetic tests for PWS were in their infancy; a further test when she was
16 subsequently found the tiny genetic abnormality. The paediatrician said
Esther was only the second child he had ever diagnosed with the syndrome and he
could not tell me a lot about it, apart from cutting down on sweets, biscuits,
cakes etc.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
This of course was in the days before the internet and any
type of information was very hard to come by. The nurse at the paediatric
clinic gave me the address of the fledgling PWS Association, which had been set
up just a couple of years previously, and was run in their spare time by a
couple whose child had also received the diagnosis. The only information they
were able to send me was a booklet from the USA, where the world’s first PWS
Association had been set up in 1978 – the year of Esther’s birth. From that I
learned that the syndrome got its name from Swiss doctors, Prof Prader and Dr
Willi (along with a Dr Labhart whose name got dropped somewhere along the way)
who had first described the syndrome in 1956.</div>
<div class="MsoNormal">
<br /></div>
<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: right; margin-left: 1em; text-align: right;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg9eZVetxh8PPozC84Zd6xfNURrmw9Chwoz-yCTwCab_ctT017UFTfDSNZRtbwnSnEg__hka3EaqlbEb9qaS46Q7BzLPpfYTs39oJFSGsKwT6ccDUEgvArcPzY1MDpkqR8AOaHR1F1BS_Y/s1600/Andreas+Prader_JPM.jpg" imageanchor="1" style="clear: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" data-original-height="283" data-original-width="361" height="250" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg9eZVetxh8PPozC84Zd6xfNURrmw9Chwoz-yCTwCab_ctT017UFTfDSNZRtbwnSnEg__hka3EaqlbEb9qaS46Q7BzLPpfYTs39oJFSGsKwT6ccDUEgvArcPzY1MDpkqR8AOaHR1F1BS_Y/s320/Andreas+Prader_JPM.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Dr Andrea Prader with Jean Phillips-Martinsson (UK)</td></tr>
</tbody></table>
<div class="MsoNormal">
Much of the booklet was quite horrifying, and I found there
were parts of it I could not look at for long. According to this, my angelic
little girl was going to change into a ravening monster, who ate everything in
her path, and alongside of that would have severe outbursts of temper and rage.
What was more, she would never develop to maturity sexually, would not have
children and would be shorter than average. How could this possibly happen?</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
It happens, I now know, because the genetic abnormality in
PWS affects the hypothalamus area of the brain. This in turn controls a number
of hormones which affect appetite, growth, sleep and emotions.</div>
<div class="MsoNormal">
I vowed that I would do everything I could to help my daughter
overcome this nightmare. I joined the PWSA UK, went to its meetings and
conferences, and in 1987, three years after my son was born with no problems,
joined the Trustee Board.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
At that time, little was known about the life path of adults
with PWS – the received wisdom was that the weight would continue to pile on
and few people lived past 30. I suggested that I could carry out a survey of
those parents we were in contact who had adult sons and daughters with PWS. A
psychiatrist from Birmingham, Dr David Clarke, became interested in what I was
doing, and the results were ultimately published<a href="https://www.blogger.com/null" name="_ednref1"></a><a href="http://easo.org/living-working-prader-willi-syndrome/#_edn1"><span style="mso-bookmark: _ednref1;">[i]</span><span style="mso-bookmark: _ednref1;"></span></a><span style="mso-bookmark: _ednref1;"></span> in 1989.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
And so I became by default the Information Officer for PWSA
UK, working in a voluntary capacity until 1991 and then as a paid employee,
sometimes part time and sometimes full time. My current role is Support Team
Manager. Our support team helps families and people with PWS get the support
and care they need, answers their queries about every aspect of life with PWS,
and training professional care staff. I am still responsible for writing much
of the Association’s literature, most of which is on the Association’s <a href="http://www.pwsa.co.uk/" target="_blank">website</a>. </div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<b>So what have I learned in my 39 years living and working
with PWS?</b></div>
<div class="MsoNormal">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhgPU8w6BmhDPS-BbADCdZgmf3wLjU47z3sjgSc_r8dUN47LXecrjEzSJvGQjBZJSiN3q6UZfy1jS8_0J2vcBR3Tbf08yqdwaftgEicUhUByfEP2dnfzrF64ZT7wfc4Y3jTzB0H5YUUjqA/s1600/raiding+fridge.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" data-original-height="259" data-original-width="194" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhgPU8w6BmhDPS-BbADCdZgmf3wLjU47z3sjgSc_r8dUN47LXecrjEzSJvGQjBZJSiN3q6UZfy1jS8_0J2vcBR3Tbf08yqdwaftgEicUhUByfEP2dnfzrF64ZT7wfc4Y3jTzB0H5YUUjqA/s1600/raiding+fridge.jpg" /></a>I have learned that PWS is an incredibly complex condition
which affects only around 2000 people in the UK. It can unfortunately happen in
any family, as 95% of cases are “de novo” – ie newly occurring. Fortunately it
is rarely hereditary. The genetics are a continuing source of interest to
experts in the field, as is a finding a “cure” for the excessive appetite
(hyperphagia). We now know, through MRI scans of the brain, that messages from
the stomach to the brain, telling it that enough has been eaten, are not fully
reaching the brain, resulting in a state of almost perpetual hunger. The low
muscle tone (hypotonia) which continues throughout life imposes a “double
whammy” on people with PWS: they actually need fewer calories than people of
the same age and height to maintain a healthy weight –the reason my daughter
began to put on weight when she was a child. Not because I was giving her too
much, but because she her calorific requirements were far less than for other
children.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
The struggle to keep calories down, together with the
individual with PWS’s search for food to assuage their hunger, makes it a very
difficult syndrome to live with. Not only this, but immature social and
emotional development means that even those who would otherwise intellectually
be able to cope (although most have learning disabilities, a significant
minority do not) are not able to manage the stresses and complexities of
everyday life, often resulting in outbursts of temper which sometimes result in
physical aggression. There are a range of other behavioural challenges, so
distinct to PWS that psychiatrists describe them as a “behavioural phenotype”.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
For most families with young children who can manage their
child’s diet, PWS does not impact all of the time – the outbursts may not be
that often, or relatively easy to deal with. This was certainly the case for
me, and Esther was, certainly as a younger woman, very good at keeping to her
dietary </div>
regime – with support from me. However, as people with PWS grow older,
independence becomes a big issue. Left to themselves, in almost all cases, the
person would continue to eat until all the health problems which go alongside
obesity overcome them. Sadly we still hear of people dying in their 20s and
30s, although the oldest person known to have the syndrome was 74 when she
died. Only a handful, though, currently make it past 60 years old.<br />
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
In order to manage the difficulties of the syndrome, a few
specialist residential homes have sprung up where access to food is very
restricted and where staff are trained to deal with the challenging behaviours
that some people have. Esther’s story is a complex one, and not all of it is to
do with PWS, but she currently is doing well in a residential home where she
has lived for over two years now, having lost around 4 stones in weight.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
PWS has changed my life. It was never on my career agenda
(who indeed would want it to be?), but it has taught me so much. I have learned
not to be judgemental of people who are obese and I have met people from all
walks of life and from all over the world. In my work as a past board member of
the International PWS Organisation (IPWSO) <a href="http://www.ipwso.org/" target="_blank">www.ipwso.org</a> I travelled to countries as far apart in
culture and space as Norway and Taiwan, but in every country, the children and
adults with PWS face the same challenges. I am honoured to have been asked to
be the representative for families and people with PWS in the EASO Patient Council
and look forward very much to meeting other members of the Council at the
upcoming Congress in Portugal in May.<a href="http://easo.org/living-working-prader-willi-syndrome/#_ednref1"><span style="mso-bookmark: _edn1;">[i]</span></a></div>
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<div class="MsoNormal">
<a href="https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1291957/" target="_blank">https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1291957/</a>
– Adults with Prader-Willi Syndrome: abnormalities of sleep and behaviour.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Posted <a href="http://easo.org/2017/06/" title="Monday, June 12th, 2017, 10:59 am">Jun 12 2017</a> by <a href="http://easo.org/author/chris/">EASO Secretariat</a> in <a href="http://easo.org/category/news/">News</a>
</div>
<div class="MsoNormal">
<i>Tags:</i> <a href="http://easo.org/tag/prader-willi-syndrome/">Prader-Willi Syndrome</a> <i>Categories:</i> <a href="http://easo.org/category/news/">News</a> </div>
<div class="MsoNormal">
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</div>
Tui Chizownhttp://www.blogger.com/profile/11362569853162067460noreply@blogger.com0tag:blogger.com,1999:blog-1343067279870496201.post-72585173577615107932017-06-29T14:59:00.000+12:002017-06-29T14:59:42.111+12:00What is the difference between obesity and PWS?<div dir="ltr" style="text-align: left;" trbidi="on">
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<div align="center" class="MsoNormal" style="text-align: center;">
<b style="mso-bidi-font-weight: normal;"><span lang="EN-GB" style="font-size: 12.0pt;">The European Congress on
Obesity</span></b></div>
<div align="center" class="MsoNoSpacing" style="text-align: center;">
<b style="mso-bidi-font-weight: normal;"><span lang="EN-GB">Jackie Waters</span></b></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgR7ne8jJYqy5R2sZZpxTkGYqhBKNeh4r5cB5Clorq_pLsnHk1ciPDG3wGND7RKpjiG_IOv3eGHR-7UNkrJT9V3ieY87TRs9wSFGES9rR8pD0d45qZoASmP-wK4z21glY6zsEpGNUNwS5s/s1600/speaker.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="905" data-original-width="1600" height="181" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgR7ne8jJYqy5R2sZZpxTkGYqhBKNeh4r5cB5Clorq_pLsnHk1ciPDG3wGND7RKpjiG_IOv3eGHR-7UNkrJT9V3ieY87TRs9wSFGES9rR8pD0d45qZoASmP-wK4z21glY6zsEpGNUNwS5s/s320/speaker.jpg" width="320" /></a></div>
<br />
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<span lang="EN-GB">Earlier this year, I was invited to
become a member of the Patient Council of the European Association for the
Study of Obesity (EASO), to represent people affected by PWS. I was then kindly
invited to attend the 24<sup>th</sup> European Congress on Obesity in Portugal as
a member of the Patient Council (PC). At the time of writing, I am still unsure
about whether PWS should be represented at the Patient Council, as PWS is such
a special case and a good number of people with PWS, due to good management and
healthy eating, are not actually obese. I intend to see how things develop on
that front.</span></div>
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<br /></div>
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<span lang="EN-GB">However, in between Council activities,
I attended quite a few lectures and talks on aspects of obesity. The vast
majority of the 1500 strong delegates were health professionals and public
health officials from all over Europe – not people with obesity. There were no
talks or posters specifically about PWS, and only one speaker I heard actually mentioned
it in passing. Here, though, are a few things that I learned about obesity (and
why PWS is so special).</span></div>
<div class="MsoNoSpacing">
<br /></div>
<div class="MsoNoSpacing">
<b style="mso-bidi-font-weight: normal;"><span lang="EN-GB">The
stigma of obesity</span></b></div>
<div class="MsoNoSpacing">
<span lang="EN-GB">In a very moving session, Christina
Fleetwood from the Patient Council, described how other people see those with
obesity as lazy and stupid – they fail to see the real person behind the
obesity or, as Christina put it, the “soul” of the person, and not just their
body. This resonates with our own experience of affirming that all people with
PWS are individuals in their own right. </span></div>
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<br /></div>
<div class="MsoNoSpacing">
<span lang="EN-GB">Christina also mentioned that 35% of
people with obesity have a known genetic basis for it. My guess is that this
number will rise as researchers find out more about the condition.</span></div>
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<b style="mso-bidi-font-weight: normal;"><span lang="EN-GB">Obesity
as a chronic medical disease</span></b></div>
<div class="MsoNoSpacing">
<span lang="EN-GB">In the same session, a thought-provoking
talk was given by Dr Arya Sharma from the University of Alberta in Canada about
his viewpoint that obesity should be regarded as a disease, rather than a bad
lifestyle choice. He said that, regardless of the type of diet and after losing
weight, in all trials 95% of people with obesity put weight back on. </span></div>
<div class="MsoNoSpacing">
<br /></div>
<div class="MsoNoSpacing">
<span lang="EN-GB">So what about the 5% of people who
don’t? He found that this group only consumed 1400 kcals per day, burned 400
kcals per day by doing exercise to the equivalent of 60 minutes walking at 15
minutes per mile, ate 5 times a day, and limited intake of certain foods. Does
that sound familiar?</span></div>
<div class="MsoNoSpacing">
<br /></div>
<div class="MsoNoSpacing">
<span lang="EN-GB">He then went on to say that this was
verging on pathological behaviour and could be seen as an eating disorder. As
this “behaviour” is a path we advocate that families and people with PWS should
follow, this made for uncomfortable listening.</span></div>
<div class="MsoNoSpacing">
<br /></div>
<div class="MsoNoSpacing">
<span lang="EN-GB">He also said that the received knowledge
that obesity was related to “calories in” vs “calories out” was simple physics.
The interaction of the complex mechanisms of our bodies (physiology) is
“biology messing with physics”. </span></div>
<div class="MsoNoSpacing">
<span lang="EN-GB">And, that the more calories are
decreased, the greater the appetite becomes. (Is this the case for people with
PWS? We know that once weight begins to be gained in PWS (by eating more food),
this does not appear to decrease the appetite – which is the counter-point to
this statement. And if this holds true for people with PWS, what is it like to
be living with this all-consuming hunger?)</span></div>
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<br /></div>
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<span lang="EN-GB">Dr Sharma said that he had never met a
“cured” person with obesity – only someone who had been treated. Behaviour
modification strategies bring about only a 3 – 5 % weight loss in the long
term. Bariatric surgery is more successful over the long term, but there are
simply not enough resources for everyone who would benefit from it to receive
it. The “treatment gap” could be filled by pharmacotherapy (pharmaceutical
drugs) but there is still a long way to go to find truly effective remedies. </span></div>
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<br /></div>
<div class="MsoNoSpacing">
<span lang="EN-GB">If you’d like to find out more about Dr
Sharma’s views, he has a blog at <a href="http://www.drsharma.ca/">www.drsharma.ca</a></span></div>
<div class="MsoNoSpacing">
<span lang="EN-GB">And you’ll find the complexities of
obesity all laid out on the Foresight Obesity Map at <a href="https://www.gov.uk/government/uploads/system/uploads/attachment_data/file/296290/obesity-map-full-hi-res.pdf">https://www.gov.uk/government/uploads/system/uploads/attachment_data/file/296290/obesity-map-full-hi-res.pdf</a></span></div>
<div class="MsoNoSpacing">
<br /></div>
<div class="MsoNoSpacing">
<b style="mso-bidi-font-weight: normal;"><span lang="EN-GB">Other
messages I took home </span></b></div>
<div class="MsoNoSpacing">
<span lang="EN-GB">Much of the information presented was
way over my head, as I have no medical training. However, with apologies to the
various speakers whose research and views I noted down, but not their names,
here are some further points I thought of interest or importance, with my
comments in brackets. </span></div>
<div class="MsoNoSpacing">
<br /></div>
<div class="MsoNoSpacing" style="margin-left: 36.0pt; mso-list: l0 level1 lfo1; text-indent: -18.0pt;">
<span lang="EN-GB" style="font-family: Symbol; mso-bidi-font-family: Symbol; mso-fareast-font-family: Symbol;"><span style="mso-list: Ignore;">·<span style="font: 7.0pt "Times New Roman";">
</span></span></span><b style="mso-bidi-font-weight: normal;"><span lang="EN-GB">BMI size is not an indicator of health.</span></b><span lang="EN-GB">
It does not account for the wide variation in ratios of body fat, bone and
muscle. A patient’s “best” weight may never be their “ideal” weight. (Many
people think that people with PWS should aim for a BMI of 26-29 rather than the
ideal BMI of 18-25).</span></div>
<div class="MsoNoSpacing" style="margin-left: 36.0pt; mso-list: l0 level1 lfo1; text-indent: -18.0pt;">
<span lang="EN-GB" style="font-family: Symbol; mso-bidi-font-family: Symbol; mso-fareast-font-family: Symbol;"><span style="mso-list: Ignore;">·<span style="font: 7.0pt "Times New Roman";">
</span></span></span><b style="mso-bidi-font-weight: normal;"><span lang="EN-GB">Adherence to healthy guidelines leads to better self-esteem.</span></b><span lang="EN-GB"> (Does it? May the self-esteem stem more from the more structured
and less dysfunctional lifestyle which eating healthily must employ?)</span></div>
<div class="MsoNoSpacing" style="margin-left: 36.0pt; mso-list: l0 level1 lfo1; text-indent: -18.0pt;">
<span lang="EN-GB" style="font-family: Symbol; mso-bidi-font-family: Symbol; mso-fareast-font-family: Symbol;"><span style="mso-list: Ignore;">·<span style="font: 7.0pt "Times New Roman";">
</span></span></span><b style="mso-bidi-font-weight: normal;"><span lang="EN-GB">The growing importance of microbiomes in the study of obesity.</span></b><span lang="EN-GB"> Different people’s glucose response was different to standardised
meals. For instance, the effect of bread types on weight is personal, not
universal. This is due to gut microbiomes. Analysing the microbiomes in a
person’s gut can predict how their body will react to different foods.
Personalised diets are the way forward. (Should we be focussing on personalising
diets for people with PWS?)</span></div>
<div class="MsoNoSpacing" style="margin-left: 36.0pt; mso-list: l0 level1 lfo1; text-indent: -18.0pt;">
<span lang="EN-GB" style="font-family: Symbol; mso-bidi-font-family: Symbol; mso-fareast-font-family: Symbol;"><span style="mso-list: Ignore;">·<span style="font: 7.0pt "Times New Roman";">
</span></span></span><b style="mso-bidi-font-weight: normal;"><span lang="EN-GB">Biorhythms.</span></b><span lang="EN-GB"> We have “clocks” in every
cell in our bodies and the central clock in our brain sends signals to these.
The key hormone involved is melatonin. Food is a “trainer” to the body for the
time of day. <span style="mso-spacerun: yes;"> </span>Melatonin is produced in
the dark, and exposure to light during the night switches off melatonin
production. Research suggests that low melatonin leads to a higher risk of type
2 diabetes. Children who slept less than 11 hours per night were more likely to
develop obesity by 7 years old, and that disturbed sleep is associated with
higher BMI. One research study found that 40 healthy students who went to bed
at 2 am felt hungrier the next day than another group who went to bed at 10 am.
(We know sleep patterns are disturbed in PWS – how are these related to
feelings of hunger?)</span></div>
<div style="background: white; margin-bottom: 7.5pt; margin-left: 0cm; margin-right: 0cm; margin-top: 7.5pt;">
<b style="mso-bidi-font-weight: normal;"><span lang="EN-GB" style="font-family: "Calibri",sans-serif; mso-ascii-theme-font: minor-latin; mso-bidi-theme-font: minor-latin; mso-hansi-theme-font: minor-latin;">Low energy
dense vs high energy dense foods.</span></b><span lang="EN-GB" style="font-family: "Calibri",sans-serif; mso-ascii-theme-font: minor-latin; mso-bidi-theme-font: minor-latin; mso-hansi-theme-font: minor-latin;"> Those on diets based on low
energy dense foods reported better fullness levels than those on high energy
dense foods <span style="mso-spacerun: yes;"> </span>– where both diets actually
contained the same amount of calories.</span></div>
<div style="background: white; margin-bottom: 7.5pt; margin-left: 0cm; margin-right: 0cm; margin-top: 7.5pt;">
<span lang="EN-GB" style="font-family: "Calibri",sans-serif; mso-ascii-theme-font: minor-latin; mso-bidi-theme-font: minor-latin; mso-hansi-theme-font: minor-latin;">According to the British Nutrition Foundation, <i style="mso-bidi-font-style: normal;">“<span style="color: #2d2d2d;">'Energy
density' is the amount of energy (or calories) per gram of food. Lower energy
density foods provide fewer calories per gram of food – this means that you can
have satisfying portions of these foods with a relatively low calorie content.
Evidence suggests that diets with a low energy density can help people maintain
a healthy body weight.</span></i></span></div>
<div style="background: white; margin-bottom: 7.5pt; margin-left: 0cm; margin-right: 0cm; margin-top: 7.5pt;">
<i style="mso-bidi-font-style: normal;"><span lang="EN-GB" style="color: #2d2d2d; font-family: "Calibri",sans-serif; mso-ascii-theme-font: minor-latin; mso-bidi-theme-font: minor-latin; mso-hansi-theme-font: minor-latin;">Low
energy density foods include foods with a high water content, such as soups and
stews, foods like pasta and rice that absorb water during cooking, and foods
that are naturally high in water, such as fruit and vegetables. Fibre in foods
like wholegrains and potatoes with skin can also help to reduce energy density.
High energy density foods tend to include foods that are high in fat and have a
low water content, for example biscuits and confectionery, crisps, peanuts,
butter and cheese.” </span></i><span lang="EN-GB"><a href="http://www.nutrition.org.uk/healthyliving/fuller/what-is-energy-density.html"><i style="mso-bidi-font-style: normal;"><span style="font-family: "Calibri",sans-serif; mso-ascii-theme-font: minor-latin; mso-bidi-theme-font: minor-latin; mso-hansi-theme-font: minor-latin;">www.nutrition.org.uk/healthyliving/fuller/what-is-energy-density.html</span></i></a></span><i style="mso-bidi-font-style: normal;"><span lang="EN-GB" style="color: #2d2d2d; font-family: "Calibri",sans-serif; mso-ascii-theme-font: minor-latin; mso-bidi-theme-font: minor-latin; mso-hansi-theme-font: minor-latin;"></span></i></div>
<div class="MsoNoSpacing">
<span lang="EN-GB">(So, low energy dense diets have been
advocated for people with PWS for several decades, with good results when they
have been maintained. How does this chime with the modified ketogenic diet
(high fat, high protein) which some people are now reporting works well for
their child?)</span></div>
<div class="MsoNoSpacing">
<br /></div>
<div class="MsoNoSpacing">
<b style="mso-bidi-font-weight: normal;"><span lang="EN-GB">High
protein diets. </span></b><span lang="EN-GB">But then again, and somewhat
confusingly, another researcher found that low-carb, high protein diets gave
more satiation. </span></div>
<div class="MsoNoSpacing">
<br /></div>
<div class="MsoNoSpacing">
<span lang="EN-GB">(What the heck are we supposed to
believe? … back to the personalised approach, I suspect!).</span></div>
<div class="MsoNoSpacing">
<br /></div>
<div class="MsoNoSpacing">
<b style="mso-bidi-font-weight: normal;"><span lang="EN-GB">Thank
you</span></b></div>
<div class="MsoNoSpacing">
<span lang="EN-GB">I would like to thank the Patient
Council of the EASO very much for inviting me to this prestigious and very
interesting event and for funding my attendance there. </span></div>
<div class="MsoNoSpacing">
<br /></div>
<div class="MsoNormal">
<span lang="EN-GB">I would also like to thank Dr Tony
Goldstone <span style="mso-bidi-font-weight: bold;">MA MRCP PhD, Imperial College
London, for kindly checking the factual content of this article. </span></span></div>
<div class="MsoNoSpacing">
<br /></div>
</div>
Tui Chizownhttp://www.blogger.com/profile/11362569853162067460noreply@blogger.com0tag:blogger.com,1999:blog-1343067279870496201.post-78659413608541207022017-06-20T16:44:00.000+12:002017-06-20T16:44:12.949+12:00My name is Barbara Paruk...<div dir="ltr" style="text-align: left;" trbidi="on">
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<div class="MsoNormal" style="text-align: justify;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgTdklNuSG-ly1opzhyphenhyphensnzQJx2wPLk6b1cVUqtMA3GOKnm1fiU-eqyxnIo_7llu1xMlZl8LYBHlTtVAl5b-F8KyyWrJI84oiGTgNuBxiSSzsJ64Y-Yb5U-VmYvE7qQIBne3VWuzmNT69Zw/s1600/Barbara+Paruk.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" data-original-height="900" data-original-width="1600" height="225" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgTdklNuSG-ly1opzhyphenhyphensnzQJx2wPLk6b1cVUqtMA3GOKnm1fiU-eqyxnIo_7llu1xMlZl8LYBHlTtVAl5b-F8KyyWrJI84oiGTgNuBxiSSzsJ64Y-Yb5U-VmYvE7qQIBne3VWuzmNT69Zw/s400/Barbara+Paruk.jpg" width="400" /></a><span lang="EN-AU">My name is
Barbara Paruk. I was born in Vienna in 1982, where my parents had emigrated to
from Poland. Moments after being born in a clinic in Vienna I was placed into
physiotherapy, as I had a complete muscular dystrophy. After 5 months of my
life my family and I made a journey to start our new lives in Australia. Here I
got lucky! Instantly I was placed in the care of a team of great doctors in the
Westmead Children’s Hospital, Sydney. I needed to be placed into occupational
therapy, physiotherapy and once I started to talk a little, speech therapy.
Once I reached 3 years of age I had surgery to fix my crossed eye, resulting in
more physiotherapy. I had to exercise every day both at the hospital therapies
and at home, because my parents wouldn’t give up on me. <span style="mso-spacerun: yes;"> </span>Although the exercises were a big part of my
life it wasn’t the only thing I did. I always liked water so I learnt to swim
before I was able to walk. My love of swimming is still with me till this day.
In swim schools I’ve learnt all swimming styles and even today in water I feel
like a fish. I’ve also liked drawing, colouring and puzzles and that also
hasn’t changed much today. I’ve even have a few achievements in these fields as
some of my works were awarded prizes. My latest work was creating graphics for
a theatre play brochure, in which I also starred. </span></div>
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<br /></div>
<div class="MsoNormal" style="text-align: justify;">
<span lang="EN-AU">I have finished
Catholic primary school and high school, where the programs were tailored to my
abilities. During the duration of my education I have finished multiple courses
including: a computer course; cooking course; art course; a 6 month TAFE
course. </span></div>
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<br /></div>
<div class="MsoNormal" style="text-align: justify;">
<span lang="EN-AU">In year 2000 I
left Australia with my family to live in Poland for 12 years. Luckily my luck
didn’t leave me! There I found an active therapy workshop for disabled people.
I had to quickly improve my Polish, learn how to move around a new city and
adapt to a new lifestyle. Here I started my career as an actor. I signed up to
a theatre where all actors, directors and all the other staff are all people
mentally disabled like me. With this theatre troop I have performed all around
the country as well as internationally. I have also travelled around Poland as
a self-advocate helping people with mental disabilities adjust to their lives.</span></div>
<div class="MsoNormal" style="text-align: justify;">
<br /></div>
<div class="MsoNormal" style="text-align: justify;">
<span lang="EN-AU">In 2012 I moved
back from Poland and once again I had to fully re-adapt to my lifestyle. From
multiple possible opportunities I chose to work in Civic Industries (supported
employment), where I work till this day. My main jobs are sticking labels on
products and packaging merchandise into boxes. Lately I’ve even tried my
strengths in the reception and administration areas. Even though work is
fulfilling I couldn’t stop acting. I have joined the theatre created by the
Disability Trust and I really enjoy my choices. I’m a very social person and I
love meeting new people, travelling and dancing. My favourite is combining it
all when I go on cruises with mum for holidays. </span></div>
<div class="MsoNormal" style="text-align: justify;">
<br /></div>
<div class="MsoNormal" style="text-align: justify;">
<i style="mso-bidi-font-style: normal;"><span lang="EN-AU">Note from Barbara’s parents:</span></i></div>
<div class="MsoNormal" style="text-align: justify;">
<span lang="EN-AU">Barbara has been
both a challenge and a driving factor from the start. With her you can’t be
bored. She constantly has new ideas on how to spend free time. She uses her
free time better than us, l constantly trying something new or trying to pick
up a new hobby. Be it painting, drawing, embroidery or crafts, she has learnt
all those skills by herself. They are not the only things she has learnt
herself. She has taught herself to read in Polish, skate, ice-skate and ride a
bike. We are proud of her achievement and are confident that ere are many more
yet to come. </span></div>
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<br /></div>
<div class="MsoNormal" style="text-align: justify;">
<span lang="EN-AU"><span style="font-family: Verdana,sans-serif;"><i>Thank you so much for sharing your story, Barbara! </i></span></span></div>
</div>
Tui Chizownhttp://www.blogger.com/profile/11362569853162067460noreply@blogger.com0tag:blogger.com,1999:blog-1343067279870496201.post-16031425183705909242017-05-30T09:40:00.000+12:002017-05-30T09:40:07.774+12:00Greetings from South Africa!<div dir="ltr" style="text-align: left;" trbidi="on">
<div class="font_7" style="background-attachment: initial; background-clip: initial; background-image: initial; background-origin: initial; background-position: initial; background-repeat: initial; background-size: initial; border: 0px; font-family: Arial, "ms pゴシック", "ms pgothic", 돋움, dotum, helvetica, sans-serif; font-size: 16px; font-stretch: normal; line-height: normal; outline: 0px; padding: 0px; vertical-align: baseline;">
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEixexs22-Nn4QBLBJlqGk8hWEdtuXPDhmbbPvFFeQYH6JKvFJCs0rQMPLAPwfeSXJqJEHj-ALOsJNAn_2uakafKs6y9b1M8MBsYaS7sqU252PkzOLzzEjrUrCxlk_EqkdVW4GNgIe4joRc/s1600/South+Africa.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" data-original-height="1600" data-original-width="1200" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEixexs22-Nn4QBLBJlqGk8hWEdtuXPDhmbbPvFFeQYH6JKvFJCs0rQMPLAPwfeSXJqJEHj-ALOsJNAn_2uakafKs6y9b1M8MBsYaS7sqU252PkzOLzzEjrUrCxlk_EqkdVW4GNgIe4joRc/s320/South+Africa.jpg" width="240" /></a></div>
Goeie dag, my naam is Karin en ek woon in Kaapstad in Suid Afrika.</div>
<div class="font_7" style="background-attachment: initial; background-clip: initial; background-image: initial; background-origin: initial; background-position: initial; background-repeat: initial; background-size: initial; border: 0px; font-family: Arial, "ms pゴシック", "ms pgothic", 돋움, dotum, helvetica, sans-serif; font-size: 16px; font-stretch: normal; line-height: normal; outline: 0px; padding: 0px; vertical-align: baseline;">
<br /></div>
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This means, good day my name is Karin and I live in Cape Town in South Africa in Afrikaans. My home language is actually English and my Afrikaans is quite poor despite having an Afrikaans mother J Afrikaans is one of the 11 official languages in South Africa.</div>
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My daughter, Bianca has PWS and she is 9 years old. Her favourite things are Spiderman, lego, swimming and horse riding. She is very patriotic and loves to dress up in our South African rugby colours and wave our flag J My friends describe her as a trooper as she is always so enthusiastic about life and cheers everyone on! She struggles academically and physically but her enthusiasm has gone a long way to closing the gap on her peers.</div>
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One of the challenges of living in South Africa with PWS is that there is very little medical or therapeutic support for people with rare diseases or special needs. Neither the State nor private medical aids will pay or contribute towards Growth Hormone Therapy. Unfortunately this means that many people in SA cannot afford to use GHT. Special needs schools are also limited and expensive.</div>
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I find it difficult to give advice as through communication with other parents it seems our kids are all so different. However generally I find the “Power of NOW” helpful. Do everything you can to help your child now for their future, but don’t stress too much about the future. When Bianca was first diagnosed and we read up about PWS we thought.. phew! we are in the “honeymoon phase”. Well almost 10 years on and we still feel that we are in the “honeymoon phase”. As your child grows and new challenges arise, we as parents grow too and learn to adapt to these challenges.</div>
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Have a great PWS awareness month!</div>
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Totsiens (good bye)</div>
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Karin</div>
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Tui Chizownhttp://www.blogger.com/profile/11362569853162067460noreply@blogger.com0