It came as a bit of a shock the first time I realised that someone, an adult someone, might be afraid of Sam. I mean children, especially the little ones, are frightened of all sorts of things, like horses, they are suspicious of things/people/places/situations they don’t understand and they are never backwards in coming forwards with the stares, the outward signs of an inward uncertainty. A smile from me, an encouraging widening of the eyes is usually all it takes to reassure, before the world can start turning again, properly aligned upon its axis, and all is well. But adults, well, that was an unpleasant surprise.
One of the things that was mentioned that alerted me to the fear was his size. At fourteen, he is no longer the tot he was, the poppet I could tuck securely under one arm should the need arise. He has hit the phase of contemplating the inside of the fridge to examine the possibility of snackables, and inhaling the contents. Second helpings are as big as firsts. If he decides that he isn’t moving there isn’t much, physically, that I can do to force the issue.
‘Throwing his weight about’ was the phrase. So he’s hefty, I get that, but, honestly, the kid is half the size of other fourteen year olds I know. His feet remain smaller than my own (just). He just about reaches my shoulder, and I’m not an especially tall woman. His heft is tempered by his softness; what muscles he has are ill-defined, weakened by the low tone that ensured that nothing untoward was ever posted into our VCR because his fingers bent around the flap, no matter how post-box like the temptation.
I wonder if the real issue might be his continuing difficulties with communication – speaking. It could be that unless you know him well, and you know the odd sign or two, he is difficult to understand. His speech is indistinct and lacks control. More often than not he sounds as if he is shouting and his overtures of friendship to new acquaintances are met with blank looks rather than smiles. Or it could be the speed with which he retreats into a fantasy world, jumping from ‘how do you do’ to the Strictly results in the blink of an eye.
Maybe it’s the air of unpredictability that hangs around him like a shadow that does it. Sam lives life with the brakes firmly off. Whatever he feels he feels immediately, responds accordingly. Calm to chaos in moments. One minute you’re having a picnic, the next you’re darkening the doors of the local A&E. What is every-day normality to me, to be alert to the needs of my child, is frightening for other people.
Whatever it is about that extra chromosome that slows the responses in his brain makes calculating consequences a challenge. Children in schools are so regulated, almost every moment of every day organised and accounted for that there’s not much room for an unexpected face-first trip down the upalator there; it’s easy for teachers to miss. There aren’t many puddles or much mud there either to tempt a person to splash, no matter what their age, so it could catch you by surprise.
Oh, I don’t entirely blame them, the fearful. There’s so many stories floating around about Down’s syndrome, and they aren’t all fluffy. There’s a lot of negative stereotypes to overcome. And not just people with Down’s. I remember being afraid, a long time ago, of ADHD. What was going to happen when the drugs wore off? Was he going to start leaping from the tables or throwing the furniture? And what about people with ASD? I’m pretty sure we could dig up a few negative images there too.
That’s one of the problems with labels, you see. Once you start applying them you stop seeing the person and the fear takes over. What will you do if he says hello and asks to come to play? What will you do when he turns up in your class? What will you do if he’s in your class and the unexpected happens? Deny him a chance to get it right? One strike and you’re out?
I really want an inclusive education, an inclusive society. I want it, because getting to know each other, seeing beyond that label – and that’s the adults as well as the kids – is one of the best things we can do for people like my son, because, let’s face it, people with Down’s syndrome, or any other kind of disability or difference from the privileged patriarchal group you care to mention, have a raw deal. It’s one of the best things we can do for the fearful; when we get to know each other, it slowly slides away. He has just as much right to participate in a mainstream life as anyone else. It’s why we’ve always been in the thick of things, joining in with the mainstream world. It’s why I get so cross when I see inclusion failing.
And part of that failure is the failure to make adjustments – to your preconceptions, both of what a child with a learning difficulty (whatever that is, let’s use Sam metaphorically here) can, and should be able to do. I’ve had to adjust my thinking many times over all sorts of things, about dressing and drinking, walking, talking; everything. I’ve had to find new ways to help him to find a place within the norms of society and, in the process, break down some of those barriers too. There has never been a time for me when I have made no allowances for the fact that he has a learning difficulty, but equally never been a time when I lowered my expectations.
I am not afraid of Down’s syndrome. I’m not afraid to make a change. Are you?