Wednesday, 21 May 2014


This week is PWSA (UK) Awareness Week. The Prader-Willi Syndrome Association (UK) want to spread the word about the rare chromosome disorder. They want more people to know about the syndrome, in an effort to allow children and adults with PWS to be understood and accepted, and to make more people across the country aware of what the condition means for PWS people and their families. “Talk about PWS” is the strapline. 

Today the PWSA (UK) is talking about Education. What experiences do parents want to share about their PWS child's education?

Some parents go bananas trying to get their kids into a good school. They run themselves ragged hot-housing little Jocasta into a frenzy, desperate to bag a galaxy of A-stars and bask in their reflected glory. 

I don’t think I was ever going to be one of those parents. All I want is for my children to learn, to do their best, and to be happy. (For one horrifying moment, I just had a strange urge to print these three aims on a picture of a sunset, or a kitten, or a kitten in front of a sunset, and post it as a motivational Facebook inspiration status. Don’t worry, I slapped myself in the face, and the feeling passed). 

Children with Prader-Willi Syndrome have a lot to deal with. As well as the insatiable appetite and the need for supervision around food, they usually have some form of learning difficulty and are emotionally immature. This means that you discover a whole new side to the education system that you barely knew existed: the world of Special Needs education. It’s a world of confusing codes, acronyms, and jargon. You’ll be meeting SENCOs, agreeing IEPs, arguing over SENs, and trying desperately to resist the urge to yell FFS.

It’s hard, trying to find the right school. It’s tough deciding between special needs education and mainstream inclusion. You discover how local education authority’s finances directly affect the provisions put in place for your child. You realise that you need to be a squeaky wheel, and to question decisions. You learn the value of good advice from people at the Prader-Willi Syndrome Association (UK), fellow PWS parents, and other organisations. You realise that the perfect setting for your child does not exist, but good ones do, and that as your child grows and changes, that good place may not be the right place any more. You realise the importance of real, robust communication between you and your child’s school. You wish that the ‘tradition’ of kids bringing cakes or sweets in on their birthday had never started, but you plan for it by giving your child’s teacher a bag of alternative treats. You worry. You watch. You listen. You learn, often by your mistakes. Then you move house, and have to start all over again.

The people who make all this bearable are the good uns. The teaching assistants who seem to get your child, and the ones that think ahead and come up with cunning plans when food is on the curriculum, and somehow manage to persuade my girl that PE is fun. The teacher who calls the PWSA for advice and help, and emails you in the evening about a problem she wants to solve. The school staff who give up their time to make the special school show the hottest ticket in town. The people who connect. The people who can sometimes send my extraordinary, wonderful, happy, anxious, daughter home with her chest puffed up with pride. It’s not every day, but every day that it happens is glorious.

Video is Public Service Broadcasting - Inform, Educate, Entertain.

"It's tiring all this stretching up for something that's just out of reach. 
But I'll get it. After all, what I want isn't as easy as all that."

1 comment:

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