A lot of my time with Janey is spent doing what she calls "Snuggle on Mama's Bed". It's in fact her bed, not mine, but we do snuggle. Generally, we just lie there next to each other and talk. Or I talk, and sing, and tell stories, and read books, and so on, and Janey smiles and laughs. She talks very little, most of the time, but she's very happy to just be there together.
Sometimes, this snuggle time can start to feel like a one man show. It's a very well received one man show, but still, at times I feel like I'm running of material, and I wonder if it really makes a difference what I say or do at all.
Last night, after a good long time snuggling, I said to Janey "You know, I know in your mind you are thinking a lot of things, and listening to what I'm saying, and maybe wanting to ask me things, but you aren't saying them out loud. I can't hear inside your head. I can only hear things you say. I love to hear you talk. If you said 'Kitty' right now, I'd be very, very surprised and happy!"
Some background---Janey loves me to act surprised. I'll often go through pretend emotions while we're cuddling, saying that I'm going to show happy or sad or angry, but her favorite is always surprised. I'll ham it up, opening my mouth wide and waving my arms around.
For a few minutes after I talked, Janey just looked at me with a huge smile. And then she quietly and sweetly said "Kitty!"
Of course, I played it up---a huge show of surprise. She smiled her huge, wonderful smile.
And then, as I so often do, I had to push her. I said "You know, if you said the name of one of your brothers, I'd be VERY VERY surprised!"
I hate it when I do that. And I'm always doing it---looking for just a little more, trying to force Janey to prove again what she just proved, what I already know, that she's almost always listening and understanding what I say, whether she shows it or not.
After I said the brothers line, I saw the look that breaks my heart, the look that shows she's shutting down. Her eyes lose their glow, and look away. She looks not happy but instead tense, worried. She sees that now we aren't playing a fun game, but instead are in the midst of quiz time, testing time.
We stayed there cuddling for maybe ten minutes more, and she never did say "William" or "Freddy". I made myself stay quiet. Finally, I said "William and Freddy! That's the names of your brothers!" But still, she had the tense look.
Why do I do that? I KNOW she knows her brothers' names. I KNOW she listens to me. Why do I have to get it proven to me, at the cost of her happiness?
And of course this relates to the problems with ABA type programs. They are all dependent on the child having to prove over and over and over and over that they do know what they know. In a way, they seem especially designed to torment kids like Janey. I don't think all kids with autism are like Janey is, in her strong negative reactions to being quizzed, tested on what she's already shown to know, but I think a lot of them are. Once Janey knows something, she knows it. She's shown over and over that she doesn't forget anything. But she's not always going to perform on demand.
I'd like to say I'll never make the mistake I made last night again. I'd like to think I've learned, and I'll stop pushing her to re-prove she is listening. But I will probably do it again. I'm a slow learner, and I don't always remember what I've learned, unlike my sweet girl.
2 comments:
Dont beat yourself up, you are a mom who wants to communicate with your daughter with words. No shame in that. Janey understands this just like she understands everything you say.
My son is in a different place on the spectrum than Janey in that while he has pragmatic issues he has a fairly advanced vocabulary. But like Janey he hates having to prove he knows something and hates being quizzed. He has gotten to a point where he will verbalize his annoyance with me but he doesn't understand why I forget things and he remembers everything.
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