Friday, May 3, 2013

The End of April Doesn't Mean the End of Autism Acceptance

Karen Bower
railman.blog.co.uk

I’d always had niggling feelings about Harry, but I remember with absolute clarity the day I knew.

We’d moved to the other side of town and, driving home, it made sense to use a different route. Harry lost the plot every time. For hours, he would rage at me. I didn’t understand. Was it the move? The house? His new bedroom? One day, to avoid the otherwise inevitable meltdown, I took the ‘old’ route. Harry was perfectly pleased with this. It had taken me weeks to understand that he had no issue with the move or house (Though, two years on, he still calls it New House). It was taking a different route. Ironically, since then, he’s never had a problem with it. Whatever the problem, he’d worked it out. I knew, right then, I had to work it out too.

The time until we got a diagnosis was tough -- a battery of assessments, a lot of which were stressful. It’s hard to feel you are putting your child through something they find difficult. But now, at least, I felt I was doing something. I knew a lot about what was wrong for Harry, now I was making a start on understanding what was right. But, truthfully, it was an extremely difficult time.

It is said that the darkest hour is just before the dawn and, for us, that is certainly true. Our darkest hour was when Harry went to school. I knew he shouldn’t. The niggling feelings no longer niggled; they screamed at me and held up placards. But I was still desperately trying to switch the lights back on.

The local school had a good reputation, was close to home and would accept him. Accept. That clouded my judgement, because no other school I’d spoken to had uttered it. Here was a school willing to accept him.

Harry would get the support he needed, right? Socialisation was what Harry needed, right? Harry had to go to school, right? This was a good thing, right?

WRONG. There is a big difference between ‘acceptance’ and ‘legal obligation.’

It was the worst few weeks of our lives. Oh, all the right things were said. He was fine, they said. He was happy, they said: They took photos of him to prove it. No mention was made of the daily physical restraints, of the escaping tricks (personal best; eight minutes -- just as well the school was close to home). No mention he spent more time under the table than at it. No mention I was called to collect him because he was ‘sick.’ He wasn’t sick. They just didn’t want him on site. The feeling was completely mutual.

The school had no intention of supporting Harry. In fact, they had every intention of proving he didn’t need supporting. One Friday, he came out looking worse than usual. And ‘usual’ wasn’t at all good. Harry never went back. Harry was elated. I am sure the school were too.

Many people advocate a period of unschooling once a child is deregistered and I agree completely. It’s allowing your eyes readjust to life without the light. To slowly find the natural light. Though, I possibly took this slightly too literally -- Harry and I spent a lot of time in a dark room.
I didn’t realise it at the time, but once Harry deregged, life got better. Because I stopped trying to make him conform. I accepted him. I threw away the rule book because it did not apply to us.

There are a million upsides to throwing out the rule book, but there are a few downsides. One of the hardest is to accept is that some friendships fail simply because of your child’s autism. There are parents who place the blame for Harry’s behaviour firmly at my feet. They are good parents and they do not have children who act like Harry. Therefore, Harry’s behaviour is obviously caused by my shortcomings as a parent. What I see as meltdown avoidance strategies, they see as pandering.

And, it’s true to say, some people simply don’t want their children to be around mine. One mum asked me if her child could catch autism off Harry. ‘No more than Harry will catch stupidity off you’ was my reply. And in that sense, I have to take some of the blame. Other mums understand the ‘Rules.’ I do not. I stand up for my son because right now, other kids (and sometimes adults) mock him and have him take the blame for things he did not do. I helicopter parent Harry because of this and because I know he is unpredictable. I’ve also become extremely adept at helicoptering Other People’s Children. While I don’t really understand the ‘rules’, I’m pretty sure one of them is: Thou shalt not discipline Other People’s Children. As I said, that rule book doesn’t apply to me.

It’s fair to say, several ‘friendships’ have suffered. But every cloud has a silver lining and in this case, it is the fact that the friends I’ve ended up with are amazing. Ones that accept, even if they don’t understand.

The last few years have been tough and people say again and again ‘you should have asked for help’ -- but where to start?? Just as Harry wasn’t able to articulate why he needed to take that first exit from the bypass, I couldn’t articulate the help I needed ... And, as it turned out, all I needed to do was accept Harry: My wonderful, cheeky, loveable, irascible, naughty, loving, intelligent, logical, bossy, fascinating, gorgeous, awesome, speedy, willful, determined son.

Will there be another ‘Eureka’ moment when I realise we’ve made it? When I realise the dark days are behind us and we’ve truly reached the sunshine? Obviously not. Because, writing this, I realise we're already here. Autism Acceptance no longer stops at the end of April. Now, it’s a way of life. Somehow, someway, we made it.

How did we get here? Really, I am not sure. But I’m pretty sure we got here on a train.