Mostly, our days just amble by and everything seems fine and under control, but every now and then an impish little demon will pop into my head and sabotage my thoughts, sometimes for weeks. I work away at it, like a lion gnawing a particularly troublesome piece of gristle, until I can swallow it and move on. However, this particular problem, the one that’s facing me today, is a tough one, and though I have metaphorically chewed and chewed, I am still really struggling to get to grips with it.
As you know from my book, I spent years teaching my son. I was utterly devoted to the job of helping him be more than could be seen on the surface.
I believed in his extraordinary abilities; I believed that with the right help, he could be more than the sum of his behaviours; I believed in the spark I saw in his eyes when we made a connection; I believed in the joy I saw when he learned something new.
But all that was a long time ago, and Ian has changed a great deal since then.
It has been very hard for me to watch this change come over him, and sometimes the pain of it swamps me, because I still believe. Most of the time, I have to close off those wonderful memories, but occasionally some little thing will spark a dam-burst of hurt, and I struggle to get myself under control again.
This happens when I feel Ian is being sold short. Dumbed down. His extraordinary abilities ignored or simply done a disservice.
But I have to raise my hands and surrender to the people who deal with Ian today. It is expected. It’s their show now. I had my turn. I have to back away, even though somehow I feel let down in ways I didn’t even know existed.
When I saw the photograph at the top of this blog entry, it really made me think. After all this time, does it really matter? What I feel today, will it matter in six months? A year? Five years?
Now is the time I have to let go, and give Ian space – the same as any mother has to, with any child. They grow up; they become their own people; they don’t need us as much. We have to take a back seat. But how much harder this is with the autistic child, the always-child – even though he’s nearly twenty – who continues to rely on me for so much, every single day.
Who else will be his champion? Who else will fight those battles for him?
Perhaps those who have read my book and shared my journey will understand why this is so hard for me.