It’s really been a roller coaster ride.
For a span of years, everything was so good. Ian was the perfect child – happy, communicative, involved, connected, bright, and loving.
The trouble is, this lasted long enough for it to seem permanent, and it has been anything but.
This morning I find myself wondering why I haven’t written a blog in a while. Is it because everything is ok? Or is it because it isn’t, and I don’t want to write about that?
It isn’t ok, of course, because my son is profoundly autistic.
He ‘is autistic’, or he ‘has autism’? I’ve lost track of which is the p.c. way of saying it.
Whichever. Whether he is it or has it, it’s profound.
It’s not one of those ‘has issues communicating’ or ‘might struggle with his schoolwork’ or ‘may be slow to make friends’ kind of autisms.
This kind is far, far beyond that.
To a place where the world and my son journey alongside each other on a strange parallel path, where neither connects with, reaches, or in any way marks the other.
And because of that, I suppose I feel affected by it all over again, when I meet it head-on, every day.
When I walk into Ian’s bedroom, and he doesn’t acknowledge me.
Or he’s just being odd, and it’s getting so hard to bring him back from that faraway place he loves to be.
Every day is different, and each day brings its own challenges.
When he destroys a brand new jumper.
Or yet another pair of underpants, leaving himself with a waistband and hanging tatters of fabric which don’t cover anything at all, and which would be terribly funny, if it weren’t the fourth pair that week, and all I can feel is tired.
Or when he nags endlessly for the holiday we can no longer take because the premises have been sold and aren’t available any more as holiday apartments, and I feel so sad for him that no matter what I say, I cannot make him understand that we will never go there again.
Or when he dirties himself for the third time that day, and needs to be cared for with grace and kindness, and somehow with his own dignity intact.
Some days are tough.
And some days Ian keeps to himself, and seems happy.
Not the happiness of the bygone days when he was brighter than usual, or answered a question straight away, or worked out a problem for himself and grinned from ear to ear when he knew he’d got it right.
Not that kind of happy. Not any more.
Just … quietly content.
And that’s enough, right?