Our lives as relatives of PWS sufferers are based around a series of events.
Prevention ( evade all known trigger points as if they are a deadly plague. ) Trigger points come in all shapes and sizes. The most prominent one for most of us is food! Although for obvious reasons, our relatives life cannot and should not, be based on food, ours certainly is. Menu's, calories, recipes, calories, locked cupboards, calories, locked fridges, calories, social gatherings ( where food is almost always within easy grasp.) calories, school, calories, shopping, calories! Have I mentioned calories? I knew I had become obsessed with Jades calories intake when on one particular day, she had picked at and removed wallpaper strips. I caught her licking the glue remnants....My first thought.....Oh my, How many calories does glue contain? I kid you not!
We, as parents of older PWS children, do not make the mistake of following the age old proverb that change is as good as a rest. Our children have a deep rooted need to know exactly what is happening during the course of the day. Once set, the routine should not be altered or deviated from unless we are fully prepared for the consequences. These can range from full blown meltdowns to repetitive questioning as to why we are doing something not discussed or, on the daily agenda. Although we take change in our stride, if you are a sufferer of PWS it can totally turn your world upside down. Lets not make the mistake of thinking that a meltdown is caused by something big. It can be the consequence of something so small it does not register within the normal brain function. Ie you change the plate you normally serve your PWS relative dinner on. A pervasive preoccupation with control, totally overrides any kind of flexibility and will lead to the bubbling over of an ever present anxiety.This is something our children have no choice but to live with. A constant uncomfortable feeling that permanently hovers.
Can you imagine living in a state of indefinite high anxiety? No, nor can I but most PWS sufferers have no choice but to accept.
The worst thing, because my daughter does not know any different, she has reason to think that the way she is feeling is the same for everybody and believes it to perfectly normal. Many times I have watched Jade struggle with changes in our lives. Small insignificant deviations that become huge weights of worry until she turns it around in her own mind. I can watch the anxiety fall away from her once she has reached her own conclusion as to why something has changed. The relief for her is tremendous. It matters not if the conclusion she has come to, is not correct. In this house, importance is placed upon the end result of calm!
Sense of humour
On one of my many visits to the hospital, I remember a particular consultant remarking on what he believed to be a facet of PWS.
' They are born with the hump!'
Actually Mr Youshallremainnameless That was another part of the syndrome you got wrong.
Jade does indeed have a sense of humour all of her own. It is nothing like mine or yours, it is her own unique blend of what she finds funny in her world.
Jade has made a very special friend. Her name is Janet who also has PWS. Jade and Janet Skype most evenings and the gales of giggles that escape from behind the closed door are a joy to listen to. For the first time Jade has someone who genuinely understands her humour and indeed, adds to it immensely To hear the girls laughing the way they do over things that we wold not consider remotely funny is a medicine that should be bottled were it possible.
My husband has spent many years trying to give Jade a sense of humour. Our humour. He still receives the same blank look as he did when she was tiny except now she knows Dad is trying to be funny and the blank look is accompanied by a smidgin of tolerance and a quick retort! Usually whichever word she finds comical that particular week. At the moment everybody who behaves in a silly manner is a 'Plank!' Nope, do not ask.....I have no idea either!
Imagine having all the symptoms of clinical depression sitting in a small compartment in your brain. One misplaced word can open the floodgates and release the sadness, low self esteem, tears and negative feelings associated with depression. Imagine being a parent/sibling that has to walk on eggshells everyday to ensure that the 'Beast' stays locked away in that compartment. Like most parents we have learnt over the years that praise for your PWS child is priceless. Self esteem is the single most important thing that keeps the 'Beast' at bay.
Assessor - Jade can you cook a meal?
Jade - Of course I can.
Reality - I put the gas on. I carry the pans. I fill the pans with water. I prep the food. I count the calories. I drain the food. I turn the gas off. I do not leave the room. Jade chops vegetables with a blunt knife and spoons the food onto plates. But as far as Jade is concerned she cooks the meal because we have made sure she believes she can!
We live in a discriminatory world. A world where the disabled and special needs are assessed, reassessed and assessed again. If by giving my daughter a sense of self worth I lose out on money that she should be entitled to, then so be it.
You cannot put a price on peace of mind or inner calm for those unable to maintain a sense of importance without positive, daily input from those that love them unconditionally.