I wrapped my arms around her and squeezed, gently. A little wave of emotion had drenched her, and she was sobbing, into my chest. To be fair, my chest is large enough to comfortably accommodate several sobbers at once. Anyone’s welcome, I don’t discriminate.
But I wasn’t concerned. My daughter needed just a minute or two for the wave to subside, for the tide to go out, and for her feelings to dry off. Her emotions had overwhelmed her. A fact that was hardly surprising, considering the weekend she’d had: two nights in a hotel, two days of activities with other PWS children and young adults, two PWS picnic dinners, two evening meals out, a bagful of cuddly toys won on the pub’s ‘grabber' machine, oodles of crafts, a game of bingo, two lots of dance workshops, and an entire weekend buddying up with her Prader-Willi Syndrome Best Friend Forever.
It did subside, quickly, and easily. She was right as rain by the time we drove out of the conference centre gates. Three hours later, after a tactical Maccy D tea stop (grilled chicken salad wrap - 330 calories, and pineapple stick - 37 calories), we were home. Low-fat hot choc slurped, tablet swallowed, teeth cleaned, retainers in, jim jams on, bed. ___
The packed weekend was the PWSA UK's first national conference for seven years. The event, in Derby, was spread out over two days, concentrating on under 16s yesterday and focusing on over 16s today. The Association subsidised conference fees to try to make it more affordable for parents and carers, although as a charity, its funds are limited.
I really hope they make it a regular event.
It can be daunting, especially for new parents, to hear some of the tougher topics and scarier stories from professionals, carers, and other mums and dads, even when it's emphasised that symptoms and behaviours can vary wildly from child to child. It can be repetitive, when speakers tell you things you’re already very familiar with. Not every talk turns out to address the issues you were hoping they’d cover. At certain points, you might even begin to understand what a PWS emotional overload might feel like.
But there is always something that resonates. There’s always something that surprises. I found Medical And Dietary Issues advice from a team from a PWS multi-disciplinary clinic (God, how I wish there were more of those) to give me plenty of *ahem* 'food for thought'. PWS BFF’s mum said the Changes to SEN Education And The Law session was hugely useful. I’m sure everyone there took away something; nuggets of information, little treasures, lightbulb moments, ideas, practices, realisations, recognition, revelations. And there's always something funny: the mum who went into the adjacent bible conference by mistake, and dashed out pretty sharpish when they started talking about Psalm 24 instead of Chromosome 15; our theory that said bible class (99% female) looked remarkably like the evil WI convention from the film of Roald Dahl's The Witches; and the idea that the catering staff, decked out in old-fashioned black and white uniforms, were actually dinner ladies from the 1950s transported through time to serve us up our gravy. ___
As the day came to an end, a few parents and other Prader-Willi teenagers and young adults, walking past us on their way out, noticed my daughter finishing up with her aforementioned 'it'salltoomuchforme' weeping session.One lad picked up her Froggy soft toy, and patted her back. A couple of people caught my eye and smiled back at me when I smiled at them, as my daughter’s tears wet my shirt, and her face continued to crumple and leak. They didn't think me callous for seemingly not looking overly concerned at my distraught child. I knew that they knew that it would pass and be forgotten about as quickly as it had started. They got it. They got her. They got us.
I know I always bang on about it, but I’m more convinced of it with every PWSA event that I attend: being there, being together, seeing so many people sailing the same ocean on the same wonky, wobbly raft as you, is special. Some of them will encounter choppier waters, some calmer. But knowing they’re there, bobbing along beside you, makes a huge difference. We can set off flare guns and chuck each other life-belts if needed. Knowledge arms us. We’re a goddamn flotilla.
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."
