Squeezing the Balloon

Some aspects of life with Joy lately have felt rather like what happens when you squeeze a balloon. If you put your hands around the most bulging part of the balloon and squeeze, the air will move over and make another part of the balloon bulge instead...

Or that classic bedbug baby-toy, where there are four bedbugs and two are always "up." Hit one with the little plastic hammer, and it pops down but another pops up.


Take, for example, Joy's stims. She's not pulling down Christmas cards or plants (yay!) But she is getting so insistent on snow-stimming that it's harder and harder to make even a short walk between car and school, even if the sidewalks are clear -- she dives and kicks into the snowbanks on either side, and then goes limp when you try to get her to stand and walk. And she's getting terribly insistent on "making friends with the pillow" if left to her own devices for any length of time at all. That lovely fleece boa I made her for Christmas, that I was hoping would be a socially-acceptable twiddle-stim? She lo-o-o-o-o-oves that boa, and not in a way we can take out in public. And if we take the boa away, the house is full of usable substitutes.

Then there's the "acts of ow." She's hardly pulling out her own hair any more, and the self-injurious stuff has dropped to near zero (yay!) But guess what has gone way up instead? Outbursts directed at other people. Hitting, kicking, hair-pulling, as a very touchy and very immediate frustration response.

I don't like the balloon/bedbug-toy analogy nearly as well as I like comparing Joy's development and behavior to a mixer board (with sliders that go both up and down but don't necessarily have to be zero-sum.)

I'm pretty sure that the stimming does have to happen in one form or another, though I wish we would be able to have more influence as far as what the range of preferred stim would be. [Update: TherExtras reminds me to link to our joint-post from a year ago, Stim-Sense, that explored stimming issues.] Even more so, I wish the acts-of-ow weren't acting like a squeezed balloon. Because as far as I'm concerned, I'd rather have that acts-of-ow-balloon just pop and disappear altogether.

Extended Metaphor

Back toward the beginning of October, I reported that Joy had suddenly begun to enjoy swinging again, after having gone suddenly "off" anything swinging-related the previous Christmas. It was, I said, akin to a sudden flipping of a switch somewhere inside her head. And I said that the switch-flipping metaphor was making a lot of sense to me, and you'd probably hear me using it again.

Well, here it is. Behold, the extended metaphor:


The above is a high-falutin' mixer board at Smart Studios, where JoyDad's band did the mixing work on their latest CD. (Smart Studios was founded by Butch Vig of Garbage, and has done work for Nirvana & Smashing Pumpkins as well).

But a sound board or light board would work too, anything with a bunch of flip switches and fader/dimmer switches and a variety of knobs.

Here's the thing. Sometimes with Joy, attributes or abilities or favorites change suddenly, like the flip of a two-position switch, as happened with the swinging. Sometimes we get a dimmer switch, like a strange fading of language that has happened in the last couple of weeks (she's basically using no words now). Meanwhile another dimmer switch for experimental vocalizations has been slowly turning on. The biting, fortunately, has faded off, and is now reduced to a rather cute occasional nibbling of toes. Expressing frustration by throwing things, meanwhile, has faded on.

When a whole bunch of switches slam to off all at once (or fade to off fairly rapidly), we call it a regression. But more often, faders are going in different directions, and we don't quite know if they're related, or what might be causing what.

I was talking with JoyDad about this and asked if I could use his photo, and he told me another really cool aspect about the board at Smart: the switches are motorized and you can actually see them moving as a recording plays. Cool, and a little spooky.

The fact that Joy's switches do go both ways feels spooky to me in general. Neurotypical kids, their switches don't do this as much, at least when it comes to learning. Likes and desires are a different matter, but once a kid learns words, you expect the words to be there. Once she can stack blocks, you don't figure you're going to find yourself teaching it all over again.

I did have the thought to extend the metaphor still further, something about the hands of the Almighty dancing across Joy's mixer board or some such. But then I started reading Look Me In the Eye, by John Elder Robison, gifted writer and blogger and proud Aspergian. (Thank you, Jess, for nudging me to get reading on this!) I just got to the part where Robison writes about his engineering experiences doing audio and lights and over-the-top special effects work for a certain high-profile entertainment act. His description of working the light board in the chapter "One With The Machine" is, alas, too long to reproduce here, so I'll just quote one sentence:

It's just like playing a huge musical instrument, and your hands never stop moving on the dimmers.

So now my reverent image of omnipotent fingers on Joy's dimmer switches is hopelessly conflated with a mental picture of the young John Elder Robison working the lightboard in a huge arena... Sometimes metaphors extend in really wild directions!

Does the sound-board / light-board / mixer-board metaphor work for anyone else?