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.

Included: Rewards at School

At the beginning of the school year, before the craptacular spectacular transition issues, we'd discussed with Joy's teacher his system for rewarding good behavior. Each child has a star-chart, and during the course of the day he publicly awards stars when he "catches" a child behaving well. The charts live in the children's lockers, and when they fill a chart, they get to go "shopping" at the special reward-shelves for a book to take home.

We'd originally contributed some board books (more expensive than the usual paperback rewards) for Joy to take part in the system. But then with Joy not in the classroom much at all, and having the reward so far removed from the good behavior, on top of the rough way she treats books... she ended up getting more immediate small rewards instead, and just not participating in the classroom's system for the first weeks.

Until I was volunteering in the classroom one Monday. One dear little girl went out of her way to tell me that Joy was doing well (bless her heart!) But a young fellow at the same table wanted to make sure that the record was set straight -- or maybe he just liked "telling"? Anyway, he swiftly pointed out that maybe it wasn't so great after all, because Joy never got to go book-shopping.

So I took this perspective to Joy's team -- that, even if the reward system is not perfectly set up to be meaningful to Joy, the other kids are noticing and her participation (or lack thereof) has meaning to her classmates. They immediately agreed to make a change. Now Joy gets stars like the other kids, no matter what level of meaning they may or may not have for her. And if she's not in the room much that day, her aides make a point of coming to the teacher and announcing audibly that Joy should get stars for thus-and-such she's done OUT of the room.

The first full star-chart that came home with a board book brought tears to my eyes. Her teacher had signed it with the message, "I'm so proud of you!"

Conference Report, Part 1: Paula Kluth

I almost feel like I should say "Didja miss me?" yet again. It's been a very full week since returning from the Autism Society of Wisconsin (ASW) conference a week ago Friday. Many spinning plates, and per usual many are Joy-related, from conversations about inclusion at church to the fact that we've got her IEP meeting this afternoon to plan for kindergarten in the fall.

But I promised some conference-reportage!

One lovely piece of convergence at the conference was that Joy's itinerant special-educator, who leads Joy's school district team and has been coordinating the IEP prep, attended the first few days of the conference as well. I'm loving the fact that the person with whom we're writing Joy's first ever official behavior plan... also attended the conference day-long workshop with Paula Kluth, a session called The Problem with "Behavior Problems:" Supporting Students with Autism & Other Disabilities. [Note - I'll be calling her by her first name, as I did with Temple Grandin and Eric Courchesne, though in each case the more formal choice would be the title "Dr."]

Paula put "Behavior Problems" in quotes in her title on purpose. It seems that throughout her career around these issues, she's been wanting to write and speak about the "supporting" emphasis while publishers (and conference producers?) bring the pressure to use language that explicitly references "behavior." Which makes sense with the generally-used language -- Joy's going to have a "behavior" plan and all that -- but I love the move to change the conversation.

One way in which the workshop enabled that conversational change was to challenge the attendees to do some self-reflection. For example, one set of questions that we discussed in small groups was "When do you behave badly? What helps you "recover" from your own bad behavior? What is one effective and positive behavior strategy that you have used?" I bet that nobody had trouble coming up with personal examples; I know I didn't. Attendees reported behaving badly when they're hungry, tired, offended, stressed, overwhelmed, when people won't listen, when they're having a hot flash!

Then Paula asked these questions around effective strategies: Did anybody say, "I can't calm down until...

• someone drags me away?
  
• someone enforces an immediate negative consequence?
  
• someone yells at me enough?

So why is this the kind of strategy that so often comes into play for students with disabilities? when what really helps the conference attendees in their own "behavior problems" is more along the lines of: have a snack; change of venue; exercise; walk away; etc?

Really, who among us wants someone to come along and try to "change our behavior" anyway??

But we can all use a little helpfulness and support along the way. The reframed question, as the presentation put it, becomes "How can we effectively and sensitively support individuals with disabilities?" or more broadly, "How can we be helpful to people?"

So, what does seem to help? In very broad strokes:

• Being surrounded by people who care
  
• having meaningful social relationships
  
• being in a comfortable setting
  
• having an engaging curriculum (driven by novelty and joy, as opposed to "death by sight-words")

Another nugget from the day that I found very thought-provoking was reflection on "shepherds," i.e. how very much adult-presence and "proximal support" students with autism often have. How much of the hovering and correction -- y'know, those things we do because it's good for them, right? -- is necessary and how much not? Do we expect students with disabilities to be "on task" for more of the time than students without disabilities?

Well. The workshop was chock-full of anecdotes and suggestions and excellent ideas for providing appropriate support through environment and materials and relationship-building. It was actually so much as to be an overload, and if I try to reflect much of that back in bloggy format, I'll just be transferring that overload. It struck me as the kind of thing where, once you've got the right framework in your consciousness, there were almost enough ideas to be presented in a "strategy of the day" daily calendar format!

For me, what was truly important about the workshop was the framing -- the commonalities -- the sense that it's really all about being human and how we all react.

Here's a quote that didn't come from the presentation, but rather from a favorite album of mine when I was a kid, Free to Be You and Me:

Some kind of help is the kind of help
That helping's all about
And some kind of help is the kind of help
We all can do without!

For more information:
http://www.paulakluth.com/
including one particularly helpful page on being calm in crisis
The article is adapted from her book You're Going to Love This Kid: Teaching Students with Autism in Inclusive Classrooms.