In every single Baby Einstein video, the founded of Baby Einstein, Julie Clark, gets on and talks about how great she is. Of course, not literally, but that's the message you get. She has two adorable blond girls, who are on the videos a lot, and she says in her sweetie-sweetie voice essentially that if you use her entire line of products, your child will be perfect. Again, not literally. She actually talks about how they are used to INTERACT with your child. Parents are shown interacting, which mostly seems to be pointing to the TV while a baby stares at it. Sure. Like those parents aren't hurrying into the kitchen to make up a cup of coffee and have 10 minutes to read the paper while the kid is entertained. Or maybe they aren't. Maybe THAT'S why I've got an autistic daughter! And of course that kind of message is the hidden one. You want your kid to be NORMAL, don't you? And not just normal, but BETTER than normal? Here's a shortcut way to do that!
And that gets to something that has been bothering me lately---the whole notion of those "crucial early years" And especially as that concept relates to autism. I see articles all over about how to diagnose autism in very young kids, so you don't miss those early years to work with them and make them "normaler" It bothers me for a couple reasons. One is that Janey was a late bloomer when it came to autism. She was not diagnosed until she was 3 years, 4 months, and although I might have been terribly wrong, I don't think she showed serious signs until just before she turned 3. She was discharged from Early Intervention at 3 with few concerns---she has been in it for her motor delays only. There were little oddities, of course, but she was certainly not a slam-dunk, anyone could see it autistic child until that age. So we missed a good potion of those "crucial" years. And then I took what was probably a slacker approach. She got an IEP, she started therapies, but I didn't do a full court press. I didn't insist on 25 hours of ABA a week. She was not even in a full day preschool for the first 2 years (although I was angry about that, but chose to leave her at the school I loved instead of move her to another one where she would get a full day). I didn't ignore her autism---you can read this blog that started right after she was diagnosed if you want to decide for yourself---but I didn't go as all out as I could have.
And why is that? Partly because I was just not sure that I believed any one approach deserved that much of her time. I think ABA is good, done well, which it took us a long time to get done well (thank you, Mr. Ken!). I think strong teachers are good (thanks to all of you!), but I just don't think there is any one thing that needs to be done in huge amounts to "fix" Janey. It's partly that I think it's both too late and not too late. It's too late because although I am not sure what caused Janey's autism, I am pretty sure it's something that happened when I was pregnant, or long before that, when some autistic little genes came together somewhere in Tony's and my ancestors. It's not too late because I think one of the hallmarks of autism is a delayed learning period. Janey still learns new things all the time. It's slow to see, sometimes snail slow, but I see her using words she hasn't before, I see her becoming closer to being toilet trained, I see her accurately "reading" her videos to see which one she wants, I see her asking more easily for what she needs, I see her catching balls and running like a champ and getting excited when I tell her school is in 4 days.
I don't think Janey is going to catch up, to be "normal". Of course, I dream of it. Of course, I hope I'm wrong. But I don't think it's fair to her to spend her whole childhood in pursuit of that dream. If she can be happy, if she can enjoy life, on the days I see that dream within reach, she is living a valid life right now. Despite what I think Julie Clark would say.
1 comment:
I know in my head the normal for children with disabilities is not the normal for most of their classmates. I've only been in my step-daughter's life for about 3 years now and I still struggle with wanting her to be "normal." I'm sloooooooooly, painfully slooooowly, letting go of that. Did I mention it's been a slow and painful process?
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