Elizabeth J. Grace
Layenie, my wife, is a pediatric nurse. I feel very comfortable asking her questions about the health and development of our young sons. They will turn one in January and are ahhh they are soooo adorable … but I digress. I might be digressing because the beginning of this post hurts a little to write.
The other evening, I had been staying home with the boys, which I do once a week, because, you know, child care costs a lot, and also, as I wrote, adorable. Benjy was doing this thing with his hand which is very like something I also do with my own hand, so this is what I said — and although I am not usually able to hear myself, I can derive a proper quote from the ensuing conversation:
Ib: “See what Benjy’s doing with his hand there … is that OK?”
Layenie: “Yes, he’s learning to wave, which is developmentally — wait. Wait a minute. Of course it’s OK. Even if he’s doing it just for fun or because it feels good, it’s going to be OK, OK? You do things like that, and you’re OK. Does it ruin your life?”
Ib: “Well…” (I was thinking about the past, about the hard things, about the things I didn’t want my boy to have to live through, like school, if he is like me.)
Layenie: (As if she could hear the inside of my head, rapidly changing the scenery) “How ’bout now? Does it ruin your life now?”
Ib: (Contemplating the Now, beaming, and … there goes my flappy hand) “No. My life is awesome.”
Layenie: “I love your hands and I love you.” (This made me cry tears of joy, and made me think.)
Then she carried on doing what she was doing with the kids but I went inside my own head a bit and crawled all over myself: hypocrite much? Would I have wanted to silence Benjy’s hands? No. I am not a hypocrite, I just wanted to help him gird his loins, if necessary, for the slings and arrows of — but then I thought about it some more — aworld that is largely not the same as it was. The world is better now. It really actually is, and it is moving in the right direction.
Not that it is easy now. Now, we are called burdens and a crisis and a national epidemic. Horrible”schools” still need to be closed yet and children are being killed to this day as a result of the way we are portrayed.
But people are starting to protest this, people’s mothers are starting to notice and say “Hey: stop talking about my baby like that, I’m talking to you: stop it right now.” And people are going to have to listen. And we are saying it and we are typing it and we are even getting into Washington DC and on TV and saying “Hey: stop talking about us like that, I’m talking to you: stop it right now.” And people are going to have to listen. And things will change even more. Autistics and our families together.
When I was in school, we were called nothing, we were nowhere, we were hidden in institutions, a mystery, something to be very afraid of. Violent, “idiot savants” (I have actually been called “idiot savant” to my face in front of a room full of people) and “morons” and “mentally retarded with autistic features” (I am sorry for the language but I have read so much of this language is in the historical files of my friends).
Any “refrigerator mother” who was defiant or foolish enough to keep us out of institutions deserved what she got and there weren’t enough of those to get us on protected lists or legal classifications or parent to parent support networks. Our mothers, forever at fault, had no way to find each other, and every reason to hide themselves in shame trying to rebuild their lives, since most of them would never see their children again. For those who kept their children against all odds, they needed support even more, but where to find it? Probably we would become homelessness statistics and end up in jails if we could talk; and if we couldn’t, the protection people would put us in institutions anyway and arrest the alleged “refrigerator mothers” who had tried to keep us out, if they were poor, or make them poor, if they had financial means.
The world changes slowly, but it changes, and I am celebrating that, today. If Benjy does his hands like that because he is stimming, if JoJo rocks because he rocks like I rock, may the world keep moving into the world I want it to be for him. May I be tireless in helping to see this happen.
I am a mother. I know what the depth of this prayer feels like.
Thanks for listening, and thanks to all who pray and enact it with me.
A version of this essay was originally published at www.tinygracenotes.com.