Friday, January 21, 2011

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.

Pound the Bedbugs toy
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.


Big Daddy Autism said...

The balloon / bedbug analogies are great. We used to compare it to putting a finger in the hole of a dam. Water is just going to spring from another one. Unfortunately, our thumbs are not big enough to stop the current stim.

Anonymous said...


Guessing you have so much snow there is no possible way to park the car such that the path to it is less accessible to the snow? (We are the odd family that actually puts our cars in the garage.)

After the wean of Abilify, is there any other pharm-option on the horizon? Barbara

JoyMama said...

Big Daddy - thanks. Yeah, the leaky dam is another evocative way to put it. The stims, I'm fine that they needn't stop, just would like to find "better" ones (Maybe I've got control issues!!)

TherExtras - Getting from house to garage is not bad. At school drop off, if I use the accessible parking space, it's fine. The accessible space doesn't work as well after school though. And there is no sidewalk in this town that doesn't have a pile of snow on either side right now... Pharm-options, we batted some ideas around but don't really have one in the hopper to try. Feeling a little gun-shy on that right now, I'd have to say. :(

Anonymous said...

At least the snow stim is seasonal, eh? You get a trade away from that one come - what - July?

I know you know I am not pushing meds as a resolution and I think the discussions here are enormously useful to readers who are exploring options for managing difficult behaviors in their children. You might want to link-in the post (we did) titled Stim-Sense here in comments or back into this post.


JoyMama said...

TherExtras - update-link has been added into the post!

The way it feels now, might as well be July before this stuff melts. And then we'll have mosquitoes, and gravel in the park...


Professor Mother said...

For what it's worth, it does sound like she's recognizing and interacting with other people - albeit not in a fashion that you would want. Behavior directed outwards recognizes others, as opposed to quieting the jangling within.

Go with the mixer board concept- as one moves, so does another, but that's a form of growth- just not straight line growth.

Good luck to you... :)

JoyMama said...

Professor Mother -- important distinction between outward and inward. That sounds like one of those irrepressible silver linings from Liz at UnOther One! :-)