Fundraising? Bor-ing!

Ok.  Give me one good reason why I should bother?  Huh?  I'm quite ok, thanks.

And, quite honestly, that's about it.  That's the one good reason why most of us don't bother, because we're quite ok, thanks.  We're lucky.  We live well, we eat well, we have good educations and we're doing just fine.

Well, sweeties, that's just the reason why I'm giving you a little nudge and asking you to think of all the thousands of others who don't have the same privileges.

Tell me, what was it really like that day when you first got the news that your baby son or daughter had Prader-Willi syndrome?  You couldn't believe it, right?  Well, you wouldn't believe it.  Prader-what?

One week old.  How hard I tried to make it seem normal.

For nine months you carried a different child.  One with all your hopes and dreams, the child who would be perfect!  I did that, too.  But she wasn't diagnosed until she was 3 years old, so I had 3 years and 9 months to speculate about my perfect daughter.  Wow - what a crash that was when it happened.  How the world crumbled, how darkness fell and just wouldn't lift.  How I buried myself away for years before I could face the reality of what my life was now going to be like.

I know you know this.

And I know you know, just as I do, that mothers and fathers around the world are continuing to feel that cold blast of reality as they face situations they prayed would never happen.  The despair; the anger and hatred of three little words: Prader, Willi, syndrome.  The pity from others, the ongoing battle to make it right.  The desperation to make it somehow normal.

Struggling at 5 months to lift her head

For 3 years I tried to pretend it would be all ok in the end.  That I would wake from a dream and smile to think I was so fearful.

And of course, it didn't happen.

I had to wait 3 years, guessing, hoping, crying, and hiding. I couldn't bear it.  And that was in a western country where life is comparatively cruisy. 

But many of us have now overcome that battle; accepted what cannot be altered, and learned to live with it and do our very best by it.  Time has moved on.  Diagnosis can be instant, and if not instant in your country, then free if you come to IPWSO.  Information in 15 different languages.

Many of us have gone further and become flag-bearers in organisations which offer help and support.  To be honest, I did this because had I not, I would have gone mad, or curled up and died.

But every charity needs funding and without it, we fade away, disappear.  But we owe it to every parent in the world not to do that!  So I call out to you all, everyone reading right now, and ask you, would it be too much for you to give a few dollars to make a difference in someone else's life?  To give them the knowledge that I never had; to give them hope in words of their own language... just to help someone else?  Please?

Every donation given until December 2016 will be matched by the KB Anderson Trust

"I don't want to go to school!"

Although going to school for the first time is usually a really happy occasion, as the years pass by, there can be that familiar cry, "I don't want to go to school!"  More often than not, there is an element of bullying going on that makes a child fearful of school.  Katherine Stanley, who has PWS, wrote a book about bullying in schools.  We wrote a blog about that which you can see here 

There are so many issues that our kids with PWS have to deal with at school so it is really important that teachers are able to recognise not just the learning ability of the child (and be able to meet their individual special needs as required), but also the social needs and how to help the child fit in comfortably.

And, having said that, it's not just the classroom teacher who needs to know, but everyone - including the relieving teacher so that they are not caught in the trap that one relief teacher found herself in.  She was just relieving for one day and she asked for a volunteer to collect the class lunches - you are all already ahead of me and yes, you are correct -  the child with PWS shot up their hand and willingly volunteered.  The school lunches only made it as far as the nearest toilet block and all were consumed.  

It is so easy to exclude the child with PWS from outings, camps, and other out-of-school activities for this very reason - that they 'can't be trusted'.  Or, 'there isn't enough staff to cover a one-on-one situation'.  It is a sensitive situation.  Do you agree with the teacher and keep your child home for the day, or do you postpone what you were going to do so that you can accompany your child?  Or do you insist that the school gives as much attention and care to your child as they would to any other child who needed special help?  It's a tough call and I have kept my child home from school on quite a few occasions in the past to avoid unnecessary confrontational situations.  I have to say that we both enjoyed our days out together and probably had more fun.

Quoting from what is written on our website, "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 competence”, in other words, they might be equal with their peers in some areas, but need support to reach potential in others.

"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.

"Throughout integrated primary and secondary education, it is important for the student to have teacher aide time if this is available at their school.  Although 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.

"Teachers should be as familiar as possible with the characteristics of this syndrome, even including the genetic subtypes, as this will impact on the learning ability of the student and the teaching strategies employed."

This may require some dedicated education on your part to make sure the school really does understand PWS, and may even need you to talk to the classroom to explain why your son or daughter needs the students' understanding and support.  I remember doing this (with my child absent) by telling them a story about a child with diabetes and how although this child looked just the same as anyone else, they had an illness that could kill them if they weren't looked after properly.  Now that growth hormone treatment is much more readily available, children with PWS who benefit from GHT will definitely look just like any other child and it's this that makes it even more important for everyone to understand what it means to have PWS. 

But, they can learn and they can succeed and they can often astound you in their success.  With the right support at school, at home, and from their peer group, school can be a happy and convivial place of learning.

Of course, there may well be many things that go unsolved at school.  Like who really took Sally's school lunch money, and who was it who cut the computer cords, or took someone's prized possession, or carved f*** you into the headmaster's table...

Some things just remain urban myths, don't they?

 

IPWSO's new FamCare (Family Care) project

IPWSO is exited to tell you about a new venture it is undertaking.  Called "FamCare", it is designed to find ways of supporting families around the world who are caring for their adult child with PWS at home.  We know that there are many of you doing this and looking for answers to questions, or just for someone else to say, "we know what you're going through".

Georgina Loughnan, from Sydney, Australia, who is an IPWSO Board member, is heading up this new project.  She has worked over the past 21 years as a clinician with adults and adolescents with PWS.  She has seen families continually work hard to provide and access the best care possible for their adult children with PWS, and recognises the difficulty that this can pose.  She says:

"As children develop into adolescents and adults, families continue to struggle to find the most appropriate setting for them.  It is these areas that need to be addressed as soon as possible for the adult child with PWS, to ensure that every environment they spent time in is as appropriate to the needs of someone with PWS as possible.

"Finding a school that will step up to the challenges demanded by someone with PWS is a difficult task.  The school years can be most rewarding and above all, secure for a child with PWS if the service providers fully understand the syndrome and the specific needs it brings.  On leaving school, the adult child with PWS faces a whole new lifestyle, one that inevitably offers many opportunities for great independence and high hopes.  However, people with PWS can never survive well with independence, especially in travel or situations that provide even the hint of access to food.

"All environments into which adults with PWS venture need to be appropriately managed to prevent the development of overweight and difficult behaviour.  Where an adult child with PWS remains living at home with the family, it will always be up to the family members and any other people supporting the adult with PWS to make provisions for the best possible environment."

FamCare's aim is to support families who need help, inspiration, new ideas, and just plain common-sense answers to the every-day problems that arise in caring for and managing the situations that arise when living with an adult with PWS at home. 

Watch this space... there will be more!