Work? I could watch it all day!

Witteskindshof workshop

Many people with PWS have jobs - some are voluntary, and some are paid.  Some are repetitive jobs such as packaging, and some are really responsible jobs which are done well and diligently.  I remember visiting a small factory in Germany with a group of conference delegates.  We were shown around the factory by a young woman,  I didn't realise she had PW until someone mentioned it as she was so competent and so beyond the work experience of my own daughter, that I failed to realise that this young woman could handle a blow-torch, solder, and fix things as well as any other person.

When I think about my own daughter's dalliance with the workforce, not a lot comes to mind as the following  will relay.  Not exactly a curriculum vitae, but more an account of jobs that my daughter has held even if only for a day or so and how she managed to get rid of them.  Sadly (in my opinion) what we used to call sheltered workshops have now been abandoned in favour of 'supported employment'.  (If only...)

There was a little job she had in a Salvation Army shop which required her to help sort out the clothes, help put them in the washing machine, and after they'd been ironed, to hang them on hangers as directed by one of the staff.

Unpaid, but a great little job, which, sadly didn't last for a few reasons, not the least of which were the number of items she decided would look much better on her, her friends, and various family members, rather than just be left to hang on a rack.  The main reason, though, was that she resigned because a staff member insisted on re-arranging the coat-hangers after she'd put them the way she thought they should be; according to my daughter.

Then there was a little part-time voluntary job at the SPCA which anyone who loves animals, especially those with PWS, would really love.  She did her best and uncomplainingly cleaned out smelly litter boxes, replaced water bowls,and took dogs for walks (accompanied by a job-coach).  But she resigned because they said she spent too much time cuddling the animals.  

When I say "resigned", I really mean that she loudly proclaimed her thinking on what was right and what was wrong with the way things were done and that she had every right to give the animals a bit of care and affection.

Shortly after this, she decided she would 'take in ironing' and proudly showed me the advertisement she had made to pin on the supermarket notice board.  This job lasted for quite a few months and the caregivers became expert in finishing off the odd load of ironing when the pressure was on.  Of course, it dwindled to an end as she became bored with the whole idea of ironing dozens of men's shirts and the house was strung end to end with laundry.

Then there was a much more specialised job of selling make-up and products on a door-to-door basis.  Booklets were delivered to households and if they wanted to purchase something, it was ordered by my daughter, paid for by the purchaser and the money was transferred to the company.  This required much more attention to detail - as you might imagine - for many, many reasons on, oh, so many levels.  First there was the booklet of products, each and every glossy page held items of great beauty that became "must-haves" and gifts for everyone in her address book.  This meant that in the end, I seemed to be financially supporting the company single-handed as I waded through booklets marked with gifts for family and "can't-live-withouts".    Then, of course, there was the money.  It had to be kept separately until such time as it could be banked.

Now, this was rather like keeping an unlocked alcohol cupboard by the bedside of an alcoholic.  Or leaving a half-eaten block of chocolate in front of a chocoholic, or giving someone a gift and telling them not to unwrap it til their birthday.  And, of course, it all fell to bits as my daughter struggled to work it all out - in spite of all the support from caregivers, and financial instructions from her father.  She "robbed Peter to pay Paul" on a regular basis.  When it came to the debt collector, I couldn't stand it and paid off the debts and she resigned from her position of sales-person.

The next job was just a very simple one.  A paper run that she did twice a week.  This meant a lot of boring folding of junk mail to fit into the second-hand pram she bought from, yes, the Salvation Army, and a lot of walking and wheeling of said pram up and down many streets, putting junk mail full of grocery specials etc into mailboxes.  She was accompanied, of course, by one of her caregivers.  To begin with, the mail run took her an hour and a half.  But, as she became quicker, she managed it in less than an hour.   She got paid for this little job and the money went into her bank. Amusingly, her own letterbox had a sign proclaiming "No Junk Mail".

She would diligently read the pamphlets and ring me to tell me what was on "special" and at what particular supermarket.  She had a field day when there were free samples of cat food in small individual packets and although the great majority did actually get delivered, there were always a few left over for her cat.  Although, of course, we had to learn that lesson the hard way, too, which required a "re-delivery" of said items the next day.

Unfortunately all good things must come to an end and in this case she had a few weeks of ill health and her job was suspended and then ended.

Many people managed to hold down jobs.  I know that because I've seen them as I've travelled all around the world working for PWS.  I've longed for my daughter to be just like them, but she's just not programmed that way and the best I can do is encourage and hope.  One day, who knows, there just might be a job that fits all that work experience.  And, of course, pigs might fly!

Curses! Missed it again...

My daughter lives in a residential home, but she comes back to stay with us quite often.  Sometimes we go away for a few days to our small holiday home by the lake.  It’s nowhere near any shops and so it’s relatively easy when there are only three of us, to keep tabs on the food intake.  Except for the occasions when I slip up. 

It might go like this: (on the long drive home, stopped for coffee and early lunch)

Conversation goes like this:

Me:  What would you like?  Coffee?  And a sandwich?

Her:  I’ll pay for myself.

Me: But I’m happy to pay for you.

Her: No;  I want to help out, so I’ll pay for myself.

Bearing in mind that this is day 14 of a long holiday break and I am tired, eager to get home and quite eager for the daughter to go back to her own home, too.  I give in.  Her father and I have a coffee and small salad roll.  She arrives at the table with a trim latte in what looks like a soup cup, and a brown grain bread sandwich.  Healthy enough.   Lunch over, we get back in the car. 

Then she starts to talk, and, for the next several miles the conversation goes like this:

Her: Well, that was good, wasn’t it Mum?   Healthy option, wasn’t it?

Me: Yes, it was.

Her:  The chicken was nice and fresh, wasn’t it?

Me: Yes, it was.

Her: I trust that place for good food, don’t you, Mum?

Me: Yes, I do.

Her: I asked if they had ham, or salad, but they only had chicken sandwiches.

Me: (tiredly, and about to miss the clue)  Ohh.

Her: I nearly had something sweet.  Mum?

Me: Well, good choice that you didn’t.

Her: (and here it comes…) Yes.  They had really nice stuff in the cabinet, too.  So I just had a piece of ginger shortbread.

Me: (wide awake now) Hmmm.  What?  I didn’t see that!?

Her: I ate it while I was coming to the table.  But I thought it was nice to be able to help you out, what with all you buy me, wasn’t it, Mum?  Mum?

Sigh.  Missed it again.  

I was a Conference Virgin

I was 38 years old and still a virgin - a conference virgin, that is.  My third child, diagnosed with PWS, was already 4 years old, but the shock of this diagnosis had not worn off, in fact she was not diagnosed until she was 3, so all our lives were still in a state of flux.  Life was definitely not fair.

In the 80's there was very little information on PWS available in our country then, and certainly no Association or support.  My information came via rather ancient printed copies of the USA "Gathered View" which the only other person I knew who had an older child with PWS had kept stored away in her garage.  Somehow I heard the news that there was to be a conference in Perth, Australia and the speaker was to be a Professor Vanja Holm (known then as the Godmother of PWS in the States).  I was determined to go to a corner of the world I'd never been to before, to listen to people speak on a topic I'd never heard of before, and... fly there.  I hated flying and had loathed it ever since my first flight on an elderly DC3 which shook and bounced its way under and through the clouds and fairly close to the mountain tops.  My mother said she'd come with me. 

Dr. Vanja Holm (front) the first physician to be involved with Prader-Willi syndrome in the United States. Front: Dr. Vanja Holm. In back left to right: Dr. Hans Zellweger, Dr. Gene Deterling and his wife Fausta (founded of the Prader-Willi Syndrome Association-USA), Dr. Andrea Prader and Dr. Sam Beltram, the first Prader-Willi Syndrome Association (USA) president. Taken at the national conference in 1984. Source: Prader-Willi Syndrome Association (USA)

Nervously I boarded the plane.  Confidently, my mother did the same.  She appeared to enjoy the inflight entertainment and certainly enjoyed her meal.  I couldn't eat.  I couldn't concentrate.  I felt every air-pocket for 9 hours.  I was nervous about the conference, I was nervous at leaving the children at home and I was surely nervous about the flight.  We landed, collected our bags and found our way to the hotel.  It overlooked a pedestrian square which was full of people going about their business, shopping, going to work, enjoying the Perth life-style.  Not so confident was their overlooker.

My mother didn't come with me to the conference, so I was completely on my own.  It was like diving off the high dive board into water so deep I couldn't touch the bottom.  I could barely make it to the surface before I sank again into a very watery world full of questions and answers that seemed to float by, but I could never seize.  I went from room to room; I listened to lecture after lecture - delivered by confident specialists who seemed to know what they were talking about.  It seemed so concrete as they imparted fact after genetic fact, rule after rule, warning after warning.  I thought of my small daughter back home, with her smiling face and lovely warm hugs.  I felt her tiny arms around me, saw her own determination to survive in this unforgiving world, and it was only by remembering her boundless love for life that I managed to get through those three days.

After the conference, my mother took me on a bus tour to see the wild flowers of Western Australia.  It wasn't quite the right time of year for it, but I do remember seeing a field of the most vivid purple and exclaimed in delight at what, to me, was beauty and perfection.  The bus-driver overheard my comments and turned on his microphone so that the whole bus could hear..." Yeah, well, that field over there?  That's full of 'Patterson's Curse'.  It's a weed."  He paused for effect, so I felt suitably cowed.  "However," he went on, "it's also known as 'Salvation Jane' as it can be a food crop in the drought."

Under my breath, I said to my Mum, "well, it's probably the prettiest thing I've seen yet".  She firmly agreed.  And I've thought about it often.  How weeds survive.  They're strong.  They don't give up. They are always there, no matter how much you try to weed them out!

Anyway, since that first nervous conference, I've been to many, many more.  I went to the first IPWSO conference in The Netherlands, I've been to places I would never, ever have been to - Taiwan, Romania, South Africa.  I've learned to separate the factual lectures from the child or adult with PWS, because everyone is different.  I've learned to enjoy the company of other parents, and how easy it is to talk freely with them.  I've learned that the knowledge passed on by specialists is something we parents are privileged to share at this level, and I've made good friends with many of our professionals.

First-time conferences are never easy.  I've learned to recognise the lost look on parents' faces, and to sit and talk and share my own experiences.  I've learned to laugh out loud at the things our kids do to try to win the day and have been bent over in hysterics on many an occasion.  I've raised a glass and sung many a good song.  I've also wept and cursed the unfairness of life, but I've learned such a lot about life as well.

If our 9th international PWS conference is going to be your first; be encouraged by what you are going to learn, be uplifted by the friends you are going to make, and, above all, learn to be strong.  To be a 'salvation Jane'.

A tale of two haircuts

By M.H.

When my son, who has PWS, was 6 he cut his own hair.  It was a fairly innocent event.  He had been using his scissors for some artwork and then, unbeknownst to me, decided to play barbers by lining up his stuffed toys and cutting their fur.   After the camel he ran out of toys and, unwilling to abandon the game, turned the scissors on himself.  The result brought to mind a dog suffering from mange.  I was horrified.  

But the barber, to whom I promptly escorted my son, laughed at my concern and reassured me that this was normal behaviour.  According to him, my son was only one in a long line of children who required a #1 blade haircut to disguise their own attempts at barbery.  This view was echoed by several friends who all seemed to have personal experiences of children doing precisely the same thing, usually right before occasions at which they needed to be photographed.

So I told myself to chill out and moved on.

This Christmas day, when my son was 11, he cut his hair again.   This time was different.  He had struggled for weeks in the lead up to Christmas with anxiety about presents, food, visitors, holidays and who knows what else.  On the day itself he had managed to cope (more or less) until dinner was over and then retreated to his room for some quiet time.  I had assumed that he would distract himself with a jigsaw or word puzzle until bedtime and that the worst of his stress was over.  But instead he found a scissors and attacked his hair.

I found him midway through the assault and removed the scissors, swept up the hair, suggested an alternative activity for him and hurried to warn the visitors not to comment on his new look. 

I knew that this time my friends would not chide me for being uptight and tell me that "every child does that".  So, I didn't tell them.  This time there were no jokes from the barber either.  Whereas my son's first self-administered haircut was a childish game, this one looked like self-harm.  It made me fearful of what he might do in future and whether the distress that had led to this incident might someday lead to him seriously hurting himself or others.

None of these are very pleasant thoughts.  But, of course, there is always something positive to be found if one looks hard enough.

When my son was 6 I doubt I had even heard of the importance of low expressed emotion, but this time I succeeded quite well in maintaining a cool facade.  When my son was 6 I not alone felt horrified at his haircut, but I also let him see this.  This time I felt sad but not horrified.   This time I didn't waste my time or his by asking why he had done it or chastising him for it.  Instead, when he was calm, he and I agreed that from now one we would keep the scissors in the kitchen, which is locked, and that he would only use a scissors when there was an adult present.  

Strangely, this time I felt better able to cope than I had felt when he was 6 and behaving "normally". 

And, despite the ongoing negative impact of PWS and anxiety, overall I think that everyone in our house had a pretty good Christmas.

IPWSO CONFERENCE GRANTS

IPWSO 2016 Conference Scholarship Scheme

In order to share knowledge about Prader-Willi Syndrome (PWS) around the world IPWSO is delighted to offer a small number of scholarships to people who wish to attend the 2016 International Prader-Willi Syndrome Organisation (IPWSO) conference to be hosted by the Foundation for Prader-Willi Research Canada in Toronto from July 20th - 24th.

The grant will cover economy airfare to Toronto and registration fees.  Applicants should be able to cover their own accommodation costs.

The expectation of the scheme is that successful applicants will use the knowledge they gain at the conference to effect improvements for people with PWS in their countries.

All applicants must be willing, if they are successful, to be publicly identified by IPWSO as having received a scholarship (e.g. on the IPWSO website and in its annual report).

All applicants must also be willing to prepare a brief report (which IPWSO may make public) on their experience at the conference within 6 months of the end of the conference.

Only one scholarship will be awarded per country.

Priority will be given to applicants who have a track record of supporting people with PWS in their countries and demonstrate a willingness to continue to support others. Priority will also be given to candidates who come from countries in which large PWS conferences do not currently take place.

The closing date for the receipt of applications is 31 January 2016.  All applications will be considered and voted on by the IPWSO Board whose decision will be final.  No correspondence will be entered into.

Successful applicants will be informed by 19 February 2016.

To apply please provide the information requested on the form on our website.

All applications must be in English.

Advance notice: IPWSO Board

In January 2016, IPWSO will be taking nominations for positions on our Board of Directors.  Board terms are 3 years with an option to continue for another 3 years.  The majority of board members are parents of a child or adult with PWS and all board members contribute their skills and time voluntarily; we are a fully working board!

You can see our current board members here, along with our Clinical and Scientific Advisory Board (CSAB) and Professional Providers Caregivers Board (PPCB) and our Famcare committee and you will probably recognise many of them.  The process of nomination is usually done via the country's delegate (either professional or parent) and through that country's Association.  Where there is no formal association or organisation, the delegate can still nominate a person of good standing.

All nominations go to our Nominating Committee who review candiates and talk to them individually before recommending them to the IPWSO Board.  The candidates' slate of nominees is presented to the General Assembly and voted on.  Successful candidates are welcomed aboard!

You can see more information on our website and if you would like to enquire further, just complete the e-form there.