Role Reversals (#205)

At our town’s train station, Jim handed me his monthly NJ Transit pass and I gave him my key to the black car. I went into NYC to speak on a panel on autism after the performance of “The Boy Who Wanted to Be a Robot” at NEUROfest. Jim took Charlie to a clinic meeting of our home ABA therapy team, then onto Walgreen’s and a hot shower, and brought home the notes about the latest development in Charlie’s reading program.
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At school, Charlie is using two different reading programs, Edmark and Language for Learning. That’s three different reading programs that Charlie has been making his way through, and this has yet to confuse him.

Contrary to the DSM-IV‘s proclamation of ASD kids having an “apparently inflexible adherence to specific nonfunctional routines or rituals,” Charlie does well with a little variation in his life. He got right off the bus with our new babysitter today. Usually he talks about “Daddy office” and “Daddy work” and “train Daddy” but tonight it was I who walked off the train at 9.20pm and met a laughing Charlie in the car.

“It’s trading places,” laughed Jim.

Tonight my place was literally on a stage to talk publicly about autism (meaning, to talk publicly about Charlie) and, looking straight into the stagelights’ glare, I felt strangely at ease.


I knew no one in the theater. The other members of the panel included the director/designer/performer; the director and composer of an opera/theater work, <a title=”NEUROfest: Tabula Rasa” href=”http://www.untitledtheater.com/plays/tabula-rasa.html”&gt;Tabula Rasa; the founder of the Global Autism Project; and a psychiatrist who works with Asperger’s teenagers. My qualifications for sitting up there were (1) mother and (2) this blog.

8 1/2 years of life with Charlie; 6 1/2 years of ABA; 5 years of being Spec Ed-NOS; 4 years of on and off “severe behavior problems”; 7 months of writing in an online autism community and I could not but be at home on the stage in a small theater a block from Times Square. At midnight, at any and every hour of the day, autism is one of two things I am always prepared to talk about and teach.

Billed as an “Asperger’s fairy tale,” “The Boy Who Wanted to Be a Robot” was a one-man show with several puppets, three robots (one named Cleano) with rollers, funnels, or cleaning brushes for hands; Lisa, a nice girl with a blue face and a pink shirt; the (not actually) evil Stepmother with a green face and a Southern accent; the Dragon Queen with scales the color of the spectrum. Orgo, who is an orphaned “organic unit,” is the boy who wants to be a robot and is on a sort of quest to achieve his goal, and does.

I talked about autism and sensory needs by describing how Charlie wraps himself up in Daddy’s blue blanket and sinks himself in the deep end of the swimming pool–about how kids like Charlie can feel too much. I learned about efforts to bring autism services to Ghana and Peru, via the Peace Corps. I heard about an autistic artist who has painted an angel with wings in stained-glass-window slivers of color like Jessy Park’s paintings. Thinking of the computer metaphor of autism and its limitations, I suggested that an autism fairy tale to me would be “The Boy Who Wanted Everyone Else to Be a Robot” (compare the end of Mark Haddon’s The Curious Incident of the Dog in the Night-time , in which everyone but Christopher, the protagonist, is wiped out by a computer virus). What would Charlie give to have all of us always acting the same, saying the same things, wearing the same clothes?

Would that be the same as living in a world of robots?

It’s not that Charlie, my boy with autism, is so in love with routine. It’s not that his mind is like a motherboard composed of silicon and wire. It’s that he is neurologically wired to prefer the routine and the repetitive, and that teaching him to play other, new roles is the goal that drives us on–so that Charlie can live in a world of so many different people and experiences and things; so that he can live in the world with us.

That accomplished, Charlie’s story will indeed end happily ever after and Jim and I will feel we have performed our roles as “autism dad” and “autism’s mom” as best we could with our all-too human tools.

Comments
9 Responses to “Role Reversals (#205)”
  1. Joel says:

    I’m really glad the event went well. How was the turnout? I’m not too surprised that you felt comfortable in that forum, you do speak to groups for a living.

    I think your idea of Charlie wanting everybody else to be robots makes much more sense than the inverse. In my experience, predictablity and familiarity are more important than total rigidness.

    The one boy I was taking care of in December was very particular about food. Dried fruit, rice, water and buns. Oh sure, we convinced him to eat more, but those four were his foods of choice. The thing is, we could’ve given him them in any order, any time, and he’d be happy. It wasn’t “rice is lunch, dried fruit is snack” it was more about the rice and fruit being safe and familiar textures.

  2. MommyGuilt says:

    I would LOVE to be able to do what you’re doing: speaking to large groups about autism and educating them. It is SO important. It is important that those who know about it and understand it learn more, and it is even more important that those who DON’T get it are educated.

    You are phenomenal. And HOORAY for Charlie for being so flexible!

  3. “…about how kids like Charlie can feel too much.”

    Precisely! Thank-you for speaking about that very important issue.

    Did they tape the conference by any chance?

  4. Eileen says:

    Good for You Kristina! I hope you keep speaking to people about Autism because you have a very important message to spread. I am sure you represented us well here in Autismland. I love how Charlie found it funny to see Mom coming off the train instead of Dad!!!

  5. SquareGirl says:

    Whoever chose the panel, was smart to choose someone so qualified as you. I think that you and Charlie have so much to teach. And I love his shirt by the way.

  6. MothersVox says:

    Kristina, Glad to hear that your talk went really well! Wish I could have been there . . . And so glad that Charlie had a smooth and flexible evening with his dad. Three cheers for all three of you!

    And you are certainly qualified to talk about this . . . no? If not you, who?

    I would love to talk with you about the idea of “me-search” that Kenji Yoshino mentions at the beginning of his article in the Sunday NY Times magazine . . . how academics may find themselves penalized for working on issues that are close to their hearts, i.e. close to their identity or private life.

  7. MothersVox says:

    Kristina, Glad to hear that your talk went really well! Wish I could have been there . . . And so glad that Charlie had a smooth and flexible evening with his dad. Three cheers for all three of you!

    And you are certainly qualified to talk about this . . . no? If not you, who?

    I would love to talk with you about the idea of “me-search” that Kenji Yoshino mentions at the beginning of his article in the Sunday NY Times magazine . . . how academics may find themselves penalized for working on issues that are close to their hearts, i.e. close to their identity or private life.

  8. K.C.'s Mommy says:

    Hi Kristina,

    Oh I wish I could have been there to hear you speak. I too love Charlie’s shirt, it’s cute!

  9. kyra says:

    so glad to hear it went well!

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