The Power of Words

As I think I've mentioned before (and you may have noticed!), I love to play with words. There are so many of them, and they're flexible and resilient at the same time, and the possibilities for interesting combinations are practically endless!

They also wield incredible power.

In 1987, Mayer Shevin wrote the following poem, called "The Language of Us and Them," reflecting on how people without disabilities speak about themselves and about people with disabilities.

We like things.
      They fixate on objects.
We try to make friends.
      They display attention-seeking behaviors.
We take a break.
      They display off-task behavior.
We stand up for ourselves.
      They are non-compliant.
We have hobbies.
      They self-stim.
We choose our friends wisely.
      They display poor peer socialization.
We persevere.
      They perseverate.
We love people.
      They have dependencies on people.
We go for walks.
      They run away.
We insist.
      They tantrum.
We change our minds.
      They are disoriented and have short attention spans.
We are talented.
      They have splinter skills.
We are human.
      They are.......?

You can read about the heartbreaking inspiration for this poem on the Autism Society of Middle Tennessee's web site.

While the poem wasn't originally about autism, it fits strikingly well with how "we" define "them" when it comes to the autism spectrum. I first heard these words in the autism context back in March, at the start of Paula Kluth's workshop at the Autism Society of Wisconsin (ASW) conference. When I walked in a little late, there was a video playing on the big screen, in which the words of the poem were being presented in the context of autism, with music and images and additional text. At the time I didn't even catch the name of the DVD, but I later learned that it was called "The Power of Words: How We Talk About People With Autism Spectrum Disorders Matters!" The creator is Judy Endow, MSW, autism consultant and self-advocate.

It was just announced on the ASW online mailing list that the video has been selected to receive the 2010 Autism Society Media Excellence award, to be presented at the July national conference of the Autism Society of America in Dallas. Congratulations to Judy! (Though there'd be no reason for her to remember me, I've heard her speak and met her briefly. Her words have taught me much -- and made me think.)

The DVD is sold online at the Autism Aspergers Publishing Company.

Here's one more text-excerpt from "The Power of Words" taken from the publishing company web site above:

One time I started making a turkey sandwich.
Then I remembered
I had a banana that needed to be used up.

So I decided to make
a peanut butter and banana sandwich
instead.

The group home worker
looked at the new person
she was training and said,

“Judy must have forgotten
that she wanted a turkey sandwich.
They have short attention spans, you know.”

Do you recognize this kind of language, in your own speech (guilty here, probably more often than I know) or being used by others to describe your child or being used to describe you?

I love words. We're all responsible for being aware of their power, and using them in ways that em-power.

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.

Back from a Conference

Didja miss me?

I guess I didn't tell you where I was going, or even that I was going! I just spent the past three days in Green Bay, Wisconsin at the Autism Society of Wisconsin (ASW) annual conference.

JoyDad got to have single-dad duty for those three days. He did great. Rose was weepy the day before I left, but once I was gone she carried on in fine form. I understand that Joy was a little bit of a handful, which I like to think may have had something to do with missing me. Maybe?

When I got home last night, though, she was in a cheerful and chatty mood. We sang Old MacDonald, and she gave me some gorgeous "oink, oink" (you know, the snorty-thing with the cute wrinkled up nose) and a "neigh" or two, and some nice tiger roars.

What, you don't have a tiger on your farm? Well, our farm has a nice noisy one!

The conference was rich and full. I think there are three blog-posts coming here, one for each of the keynoters, 'cause they hit a trifecta of excellence:

• Paula Kluth, who gave a daylong workshop called The Problem With Behavior Problems
  
• Temple Grandin (I felt like such a fan-girl... I got to meet her! She autographed a book for me! Swoon!)
  
• Eric Courchesne, neurological researcher, on the state of the art in autism brain research and implications for what does (and does not) cause autism

Stay tuned!