Once again Blogger's not working too well: I can get it with Mozilla but not IE today.

Since I seem to be mulling over identity and disability and identity of disability recently: I was talking to someone yesterday who has not one but two kids in the ABA class. And she knows that my kid is on the spectrum, and she was asking me to let her know if I see any movies that she thinks her kids would be able to see, that my kid could handle. And I felt fraudulent. She hasn't met my daughter, but she knows she's in the inclusion class. And I feel pretty sure that she doesn't know how well my daughter could "pass." My daughter's deficits seem so obvious to me, and I've fought to get services to remediate. OTOH, I can take my kid to the movies. I can go out to restaurants. We go shopping together, she's in school assemblies. For the most part, we lead normal lives, my kids and I (well, except for the not really sleeping and the omnipresent worries about depression, anxiety, and the future). But the day-to-day? I have no right to complain.

Especially not when I look back on the dark days, like when my kid was two and three, largely echolalic, not sleeping at night, not eating anything, paying little attention to anyone in the house except for me (she treated her younger brother pretty much like a lamp--invisible except when he got in her way). Tantrumming, unable to shop in the stores. I have a really vivid memory of when she was four and we went to Toys R Us at about 5:30 at night. Yeah, what were we thinking? It was the Arsenic Hour, she hadn't eaten, and we were in a fucking toy store. Um, she didn't handle it well. Any of it. I forget what she wanted: was it a toy bug? Something idiosyncratic. A hat? I'm thinking a ladybug hat, but I can't remember. Anyway, she wanted it. More than anything in the world, she wanted it, and I knew she was in the grip of that Thing, the unbelievable rigidity that takes over. And even then, I would get this feeling in my gut that giving into the Thing would make life harder the next time and the next time. And the spousal unit wanted to give in, because she's scary and unpleasant when she gets like that, and loud. And we love her. And I didn't want to give in (I won! Yay me!), and there was an emotionally fraught car ride home, during which the spousal unit and I didn't talk but Prima made plenty enough noise for both of us. It's about 15 minutes by car from that Toys R Us, and there was screaming the entire way home. You are locked in a box with a shrieking, unhappy child, and Time. Just. Stops.

How long could that stage have lasted, before we started with the behavior plans and the charts and things got under control? One to two years, maybe? During which time we joked about living like that Abbott and Costello routine, "Niagara Falls": "Slowly I turned, step by step."

She's still not compliant, but it's more willed, now, more amenable to reason, and I don't often have that feeling that she's in the grip of something she can't control (except sometimes, and I know it's the disability, and at those moments it seems less like an organic part of her--which autism usually does, like a French accent--and more like a separate thing that is stronger and smarter than either one of us).