Autism : From the Inside – Chapter Twenty

In one of her marvellous letters, Kirsty had asked me if there was anything I would do differently, if I had the chance to start all over again. I spent a long time thinking about this one. My natural introspection meant that I had considered this question before many times, and with hindsight always so much clearer, I had to be careful not to beat myself up about mistakes I might think had been made along the way. 

I wrote to Kirsty –

“What would I do differently if I had my time again? A few things that I can think of now.  As a mother I’d be more forgiving, less demanding. I’ve become so, but I didn’t used to be.  I mean more forgiving of the child’s autism, his lack of control over it. We’ve always treated Ian like a normal kid with odd behaviours. This, in retrospect, hasn’t always been the right way. Mostly, but not always.  

I’d have let my child achieve more unaided – it’s too easy to assist all the time, and the child never learns how to do it him/herself. Standing back and just waiting is the most powerful tool you have. As long as the child actually knows what is required, it’ll come, eventually. I once made notes for forty minutes whilst waiting for Ian to put his socks on. He went through his entire repertoire of avoidance techniques, but I wouldn’t be moved. I refused to do it for him and forty minutes later he did it for himself as I had always known he could.  

As a tutor I’d have started with the written word far sooner with Ian. I have video footage of him, even within the first few months of therapy, trying to look at the words on the back of the flashcards, more interested in the words than the pictures. He could read long before we gave him credit for it.

I’d also give the child the tools and the confidence to contradict me. One spends too much time teaching positives – ‘What is this? Yes! It’s a cow!’ or ‘Point to the shoe. Good pointing!’  –  we don’t arm the child to be able to say ‘Rubbish!  It’s not a horse, it’s a tractor!’”

It was an interesting exercise, thinking like this, because it made me face up to a few home truths at a time when Ian was going through another difficult patch. His latest behaviour to emerge was a violent twitch, which I truly could not cope with. All the other behaviours he had been through up to that time had been either easily controlled or easy to ignore – the hand flapping, the noises, even the face pulling – but this one I just couldn’t take. To hold his hand and feel him violently twitching his fingers was really awful. I prayed that it would pass soon.  

One morning, after a successful but difficult lesson at the kitchen table (successful because his work was good, difficult because he kept trying to tune out and I had to work hard to keep him focused), we went for a walk along the lane. It was a beautiful autumn morning, with a soft breeze, high clouds, occasional sunshine, and birdsong everywhere. Holding Ian’s hand as we walked together and feeling him violently twitching his fingers every few seconds depressed me almost more than I could bear.

We walked down a track through a little forest which has a small stream running through it. It was a wonderful place to walk because I could let go of Ian’s hand and let him run free without having to worry about traffic – there was nowhere he could go but on the path.  When we came to a more open area where Ian liked to throw little stones into a meandering stream, I watched as he stepped onto a large rock in the middle of the stream. 

Then, deliberately and with forethought, he jumped into the running water. Well, he was wet and there was no point getting het up about it, so I let him get on with it. Occasionally he looked my way, and I smiled and nodded my approval.  

For forty-five minutes, he played in that little stream, kicking the water, jumping in it, splashing it with his hands. And for those forty-five minutes, he was blissfully happy.  Smiling and giggling to himself, he played and played. And while he played, I watched and walked in large silent circles on the forest path, trying to come to terms, yet again, with what it means to have an autistic child.

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