Two autistic children have died in the last week. They’ve gotten away from the safety of their homes and families, and they’ve drowned. I don’t think a single autism parent can hear or read those stories, and the hundreds like them, and not feel a spasm in their heart and gut.
I haven’t written in a while; my voice is occupied in daily life, and I don’t feel the need – the great weight – to write like I used to. But the voice came alive tonight. The autism community has come together to mourn these sweet babies, and to protect their families.
Judgement is easy, when you don’t understand.
O used to have an elopement problem. If you don’t speak autism, he didn’t randomly propose to people; “elopement” in the autism world means he tends to wander off, quickly and quietly. He was far less verbal (ok, mostly non-verbal), and we lived on an acre of land in Michigan. A pond backed up against the (non-fenced) yard of our rent house, separated only by a slim dirty road.
Did I mention he was obsessed with water?
Did I mention that he rarely slept?
Did I mention that he could get out of any door in the house?
Did I mention that he didn’t (and still doesn’t) have any sense of danger or fear?
Did I mention that he wouldn’t respond to his name?
After both losing him (once at the park, and once in the yard, where both times in 45 seconds he was gone, and we were panicked and sobbing until we found him), S and I did some research and found sleeping tents for autistic children. My husband, the problem-solver, built our own tent that we secured from the outside. In the dark, we timed getting O out. We timed carrying the tent down the stairs with him in it.
We did all we knew to do to keep him safe.
Imagine how it felt to hear the whispers of others (and some of their loud posts) via social media, criticizing the choice we made to keep O safe. If you can’t imagine it, let me explain it for you: it was hell. Most people were supportive, but the ones who commented on our choices – the ones who had no idea – I can still see and hear their words. I actually cried about it just recently, the hurt welling up again from a place where I’d thought I’d put it to die.
Now, since we discovered melatonin, O sleeps; ergo, we sleep. But we still have extra locks on the doors, ones he cannot reach. Steve explained to our sitter’s friend the other night that the safety lock (like you’d see in a hotel) wasn’t to keep people out; it was to keep O in. We marvel over the boy who sleeps in his Lightning McQueen bed, all night long.
The boy who would still wander off in a second.
The boy who we would die to protect.
The boy who, just the other day, we considered buying a tracking device for. Yeah, you read that right; a tracking device.
It’s easy to judge when you don’t know. And these parents, whose precious babies are now gone? They need our love. They need our support and understanding. And while I agree with my friend Jess who spoke today of the need to find a balance between dignity and safety, I’m not sure where that balance is. Did we possibly rob our (then three-year-old) son of some dignity? Yeah, maybe. But he was three; I doubt he’ll have to see a therapist for that. Probably for other stuff, but not for the tent with all his toys, where we sang songs and said prayers.
But he’s still alive to cuddle tonight, because we made choices that are easy to judge.
And we cannot – WE CANNOT – judge the parents of those sweet angels who have gone ahead.
Because it could be my sunshiny boy.
And I’m not willing to go there.