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Monday, November 16, 2015

The divide

The anniversary weekend of Janey's breakdown last year was overall good---compared to a year ago, it was wonderful.  Most of the time, Janey was cheerful, and when she wasn't, we were able to find ways to make her happy again, pretty much.  However, because that's just how I am, I guess, I'm feeling kind of discouraged today.

A few incidents this weekend are what's on my mind.  Together, they illustrate the difficulties Janey has in learning and we have in knowing how to help her learn.

The first was a "diaper incident" of the worst kind.  I won't get into the details, but you can imagine.  It required an emergency shower, lots of laundry and an hour of floor cleaning.  It was the worst one in years, and it was depressing.

Janey knows how to use the toilet.  And she does use the toilet, when she feels like it.  She can sometimes go for a couple days and use it almost all the time.  But when she doesn't feel like using it, she doesn't.  And there seems to be no earthy way to convince her that she needs to use it ALL the time.  I read a book once about toileting training kids on the autistic spectrum, and I get annoyed every time I think of it.  The main thrust of it was to find what truly motivates your child, and then use the heck out of it to lure them to use the toilet.  Nothing motivates Janey that much.  And I honestly think sometimes she just isn't aware enough of her own body to use the toilet.  If she didn't let on that her appendix had burst, how is she expected to always know she needs to use the bathroom?  That where the divide is---the divide between what we want and reality, the divide created by lack of motivation and lack of understanding.

The other incident, while seemingly small, has been bothering me a lot.  Janey wanted to go for a ride in the car.  We had taken her already that day for two rides in the car, long ones.  It was evening, we were tired, the Patriots were on, there just wasn't going to be another car ride that night.  We told Janey that, but she kept trying.  And trying in non-screaming ways.  I think she felt somehow there was a key that would unlock the ride, something we weren't telling her but that she was determined to figure out.  First, she tried to dress herself.  She often does this, and leaves out major pieces, like all the clothes besides shoes.  When we still said no, she went and found a scarf, a scarf she hasn't worn since last winter.  She presented it to us, saying "This is your scarf!" and seeming to think maybe THAT was what we'd been looking for.

When we still weren't taking her, Janey came over and pointed to herself, and said "MY NAME IS JANE" in a very rehearsed way.  Then she said "Go for a car ride!" with confidence that she'd get the ride, finally.  I am quite sure she was demonstrating a skill that is something worked on in ABA therapy.  She had decided we were looking for her to work for the ride, as at school they have her work for rewards.

Somehow, it's a lot harder for me to see Janey trying very hard to figure out what we want than it is to just have her screaming. It's the divide again.  There is not a way I have found to explain to Janey why she can't do or have something she wants when she wants it.  I am saying to myself here "well, tough.  That's a lesson we all have to learn.  Sometimes the answer is just no"  But if you never, ever understand WHY the answer is no, the world must seem like an arbitrary and confusing place.

So much of what we try to do as parents is based on helping kids to understand the world---why we use a toilet, why we don't go for twenty car rides a day.  But with Janey, her cognitive issues leave many things impossible to explain.  Of course I explain anyway, with the meme of "assuming competence" in my mind.  But she doesn't understand much of it. I can't fix that.  She can't fix that.  We keep trying, but there are some walls, some divides, we aren't going to cross.

1 comment:

Olivia Applewhite said...

I can't imagine how hard it must be to listen to Janey trying to ask for something like this. I just wanted to say I think it's really positive that she's trying to communicate using more 'conventional' ways because if she's starting to understand those, eventually the hope is that she will understand other things we take for granted. By saying no, and sticking to your guns about it, you're teaching her that lesson that sometimes the answer is just no.

I'm not sure myself how you could show her that there is 'no car ride' without setting other standards for her. Limiting car rides to one or two a day could end up backfiring for various reasons - like on days when you can't go out at all for some reason. It's a difficult world to understand, but you're helping!

Thinking of you. x