It is many years since Ian was diagnosed, and so, after all this time, how does it feel to have an autistic child?
Well, there’s the social version that insists that you love him just as he is, wouldn’t change him for the world. And you smile as you say it and try not to look too brittle. But inside lurks the real, secret truth, which knows you’d change him in a heartbeat if you were given half a chance.
Having an autistic child feels … like having been wounded deep inside, like having been assaulted … violated … by nature. You can live with it, deal with it, even accept it to a certain degree, but there’s a hurt inside that never goes away.
The evenings are the worst, when the stresses of the day sit, accumulated and hanging around my neck. When bathing a growing child for the umpteenth time just stretches into endless future baths. When I can see myself, older, less strong and fit, still supervising the adult, the man, naked in front of me, still needing prompting to wash ‘those important little places’ as my Mum used to call them, still chatting to himself and not to me. Still relying on me absolutely, because in my mind’s eye I cannot see it any other way, no matter the hours of work I’ve put in teaching him to be independent.
And then that silent howl rises up from deep within and the tears stream, and I try to hide them because I don’t want to upset my child, but a gentle hand reaches out to touch the tears and a husky little voice says “Sad”.
It isn’t a question, merely a statement of fact. Tears equals sad. He’s learnt this.
Sometimes there’s concern behind it; mostly there isn’t.
The silent howl goes on, but somehow I control it and respond, “Yes, my boy, tonight mummy’s sad. Let’s have hugs”.
And I hold him close because he’ll let me, and I breathe in the scent of his hair, and remember the little angel sent from heaven just for me, and I cry.
But I carry on.
Is it self-pity? Loss? Despair? I don’t know. I’ve examined this wound from so many angles I’ve lost count, and even today I can’t say why it remains so fresh, as if yesterday was the day on which we were told our child was different, not some sunny afternoon so many years ago.
But there’s the good side, too. The little reminders of what a special child Ian is, when he takes my hand for no reason other than that I’m nearby, or when he climbs into my lap for hugs just because I’m sitting down.
Or like the time he rushes into the kitchen, looks me straight in the eye and says “Mummy, come …” and I follow him to his bedroom where he’s been typing on his computer and he points to the words and tries to read what he’s typed, and I correct a rare spelling mistake, and such a happy smile spreads across his face because now he can see that it’s right, and he understands that it’s right, and he reads it again, because he can.
Mostly these days I am swamped by thoughts of all the things Ian can’t or won’t do, and all the things he still ought to learn; but if I manage to take a step back, I look at my strange, self-contained son and think how good he is, really. Okay, he doesn’t share much of himself, he doesn’t share his thoughts or his feelings, but he can express himself well enough. He can ask for what he wants or needs. He can make his displeasure known in words if he feels like it, and he can do many things for himself, too, these days. He has finally accepted that getting dressed in the morning is just another part of daily living. He chooses and carries books to the car to keep himself occupied on a journey. He clears his place at table after a meal. He still behaves impeccably when we go out together and is a quiet, well-behaved companion when we go shopping, pushing the trolley for me, reading my shopping list, finding the right aisle by reading the overhead signs, and taking correct items off the shelf. Quietly, he is using more language, more appropriately, to express himself.
Ian will always need supervision and help, and will always require guidance for so many things. Full independence was our original goal but the arrow fell far short of our aim. He still has a lot of growing up to do, and there’s no way of knowing where Ian’s behaviour and abilities will finally settle. We remain optimistic. We still love him to distraction and will continue to protect him from the world for as long as we can.
Despite everything, all the ups and the downs, all the stress and the angst and the suffering and the soul-searching, Ian has always been – and will always be – my little angel sent from heaven … just for me.