Butterfly grew up with food intolerances and was diagnosed with ADHD, Asperger's
Syndrome, and learning difficulties. Now she struggles with OCDs.
This is the story of how we have faced these challenges.

Sunday, July 18, 2010

Can't Change the Child, Change the Mama

Asperger's Syndrome, it turned out, is a set of fairly specific symptoms on the high-functioning end of the autism spectrum. This, and the confirmed learning difficulties, clarified for me just what I had to deal with. Problem was, I just wasn't sure what to do about it. This is where Rita, the psychologist, came in, again. We discussed some of the seemingly insurmountable problems that came with Butterfly's challenges.
For instance, how was I supposed to get her to learn cursive writing? Rita gave me a case history to read that was all about a girl who didn't learn cursive writing until she was 15. By the time she was 20, who knew when she'd learned it? Who even asked? Who even cared?

Ok, point taken. I could make that adjustment, no problem. I simply stopped putting cursive writing exercises in front of Butterfly and I stopped worrying about it. She wasn't ready to learn it,* and I wasn't ready to go bald pulling my hair out over it. I wasn't being all that obsessed with the school curriculum anyway. I was only following it loosely for guidance on which workbooks to get. No writing meant both our lives were easier and less stressful, and learning was more pleasant. Geography games, art and science projects, dinosaurs and outer space were more fun anyway. Making that paper mache volcano and making it explode was a hoot. So then, on with our other studies.

Now then, how about that very messy room with the super neat oasis in the middle of it that was her bed and her prized possessions? It was a little strange really, but apparently not unusual for an Aspie. So Rita gave me another case history to read. In this one, a mom was insisting that her daughter clean her room. She left her daughter to work on that and came back after an hour, only to find the girl sitting on the end of her bed, crying. Nothing had been done. The girl honestly didn't know what her mom wanted her to do. Mom saw a mess. The girl didn't.

Ok, so I knew Butterfly saw the mess, but I also knew she couldn't cope with it. What happened with Butterfly, whether she was looking at her messy room or a page of math problems, was that she saw the whole thing and was overwhelmed by it. Time and again I would hand her a page of math and she would panic. So I would step in and get her to focus only on problem one, and when she was done that, only on problem two, and so on. So often when she was through the whole page of math, she'd turn to me and say, "that wasn't so hard, Mom." And yet, the next time I put a page of math in front of her, she'd panic all over again. She never learned to see one problem at a time on her own ~ she just doesn't see that way. When we got to logic problems, I always gave them to her one at time.

I attempted the same approach with her room, telling her to just pick up the books. After that I was going to get her to just pick up the clothes, but we never got there. She'd pick up the books on top of the mess, look at her room and not be able to see any difference. No, there was nothing wrong with her eyesight. It was just a matter of perception. And when she perceived that her room was just as messy as it was before she picked up those books, she'd get upset. The only time Butterfly could clean her room, even a little, was when she was in reaction. Apparently Ms. Hyde was a tad neater than Ms. Jekyll, but it was so not worth it. Not at all.

Overall, what I learned about Asperger's is that it was my expectations that had to change, because Butterfly couldn't, and wasn't going to. I think this is a real stumbling block for a lot of people, including many of those in the medical community. The emphasis always seems to be on getting these kids to change... to make them conform to the general idea of what is "normal." When we encounter people who have a different way of being human, we have trouble accepting it. We want to find some magic solution, like a program or a pill, that will "cure" what they have or alter their behaviour to conform to our needs and expectations. But maybe what needs to change is the rest of us. I have too often seen Butterfly treated like some sort of lesser being because she wasn't like everyone else. It makes me wonder who is really the most socially inept: people like Butterfly who don't "get" the nuances of relationships; or those who can't cope, with humility, grace or imagination, with people who are different.


* Butterfly taught herself cursive writing when she was 13, at roughly the same time she taught herself Braille, just because she was interested and wanted to.

2 comments:

  1. Bravo for teaching herself things! We go through this too. Goose won't learn it until she is good and ready and on her own darn terms :)

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  2. Exactly! The whole concept of stuffing knowledge into them on some artificial timetable devised for the convenience of the education system is kind of crazy when you stop to think about it. Each kid learns differently, in tune with their interests and abilities. So most kids are always at least a little at odds with a system that doesn't recognize that, or at least, can't deal with it. When I stopped worrying about systemic timing, Bud did just fine. And like the case history, who'd know when she learned cursive now? (Except that I blabbed.) ;o)

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