The Autismland Dream (#281)

On Monday evening Jim went to hear a speaker on a method for treating autism. The speaker, Raun Kaufman, was “diagnosed as severely and incurably autistic” and “recovered” from this “‘hopeless, lifelong condition'” by his parents, Barry (“Bears”) Neil Kaufman and Samahria Lyte Kaufman. The Kaufmans’ program was “unique” from other methods (unspecified on the website description of their method for treating autism). Their program “transformed Raun from a mute, withdrawn child with an IQ of less than 30 into a highly verbal, socially interactive youngster with a near-genius IQ.”

And, an autism treatment guru on a rainy night in New York City.
Wrongwayweagle
I wasn’t there–I was, as always, here with Charlie telling me “no beddtime”–and so can’t give actual details of what Mr. Kaufman fils said. Once home, Jim took off his wet raincoat, passed me an informational video, and said, “Well, it’s like this……” Mr. Kaufman terms autism as a “relational, interactional disorder” and his treatment plan calls for teaching a child to enjoy learning–to be motivated to learn–rather than the dull drill of “traditional methods” (not otherwise specified, though ABA seems to be referred to here). Jim’s main question after hearing the spiel was, “is this transferable to a classroom?”

I have yet to watch the video but I will say, Charlie was heavy into relating with me, the bus aide, his teacher and aides, the speech therapist, the crossing guard, a little boy on a slide, and the ABA therapist today. Indeed, I would go so far as to say that Charlie was motivated to hop on the bus (though groggy from adjusting to the daylight’s saving time-change), whiz through more lessons of the Edmark reading program, talk in sentences and clearly, grab the phone from my hand and request “Daddy talk phone!”, and wait on the porch for the ABA therapist, who was futher greeted with a Charlie-backwards hug.

And he’s not even recovered from autism–indeed, that’s not on the agenda, but being all that he can be and living a good life are.


And what is a good life anyways?

Does it mean finishing high school, going on dates, graduating from college, getting married, having kids, getting that house with the white picket fence and the SUV and the minivan in the three-car garage, getting ready to watch the grandkids sporting on the lawn?

Apologies for pulling out a few stereotypes of the “American dream” or, indeed, or of the “normal person’s dream” but none of the above are essential for Charlie–for anyone, however “NT” or “disabled” or “autistic” they are labeled as. It is true, when we first knew Charlie had autism back in the spring of 1999, one of the first things that entered my addled thinking was “how will this affect him when he applies to college?” I laugh pretty hard now to recall that thought; I realize how hemmed in my own understanding of and imagination for the possibilities of a “good life” were.

And if a “good life” means “independence” for Charlie, then–after the comment conversation from yesterday’s post–I need to reaccess what I think “independence” means. If it is being able to go grocery shopping, Charlie has got the cart thing down and he certainly knows to choose what he wants. (Money is a concept still in the wings.) If it is to get dressed, eat with utensils and not make too much of a mess, and take himself into the bathroom as needed, Charlie is on track. (So to speak.) Ngin-ngin, my 100-year old grandmother, has never paid her own bills and does not speak English, so her “independence” would seem to be not much greater than Charlie’s—though here is a woman who, easily fearless, got rid of a drunk outside their apartment by pouring hot water on his head, sewed parachutes during WWII and raised five children and chickens, and was still taking the bus up to Reno to play keeno in her 90s.

(And sharing her winnings with her grandchildren and great-grandchildren.)

After Charlie got off the bus after school, he ran inside, looked in the fridge, announced “socks on!” so I asked “how about a walk?”

“Yessss.”

As we neared his babysitter’s house—where, last Friday, Charlie had seen his babysitter and her dog, and experienced dog-fear–he stopped short and looked back at me, and waited, and took my hand. And held it lightly with the occasional squeeze when we passed a place where we had once seen a dog, and all the way to the school playground. As Charlie peered through the windows and climbed up on play structure, I kept hearing the other kids talk about “dog,” as in someone’s dog who had “eaten” a baby rabbit. Charlie stood for a bit, ran, headed across the grass to the big metal slide.

“My dog eats all kinds of animals. There’s a big rabbit in the grass in our backyard, he ate him!” a boy said to me. I looked around and saw that he was alone.

“Wow. Well, that’s what dogs do, I mean they’re like wolves,” I said, one eye on Charlie. “It’s instinct.”

“Yeah, it is,” said the boy.

I ran to where Charlie was laughing at a younger boy sliding down the slide that Charlie was trying to walk up. Charlie was all eyes for the other boy, and was quick to get off the slide so he could come down.

And quick to tell me “walk, home, Sara!” when he had concluded it was time to see his ABA therapist. After a lively session, Charlie told me “bye bye!” when I tried to snatch a piece of cauliflower. He requested “Good-nite Moon!” and I dug out his old favorite DVD. He settled himself in his blue blanket and munched on “g’een apple” while watching the show drive from his perch atop the stairs.

Charlie has the opening song by Tony Bennett memorized: Goo-night, bay-bee, iss time to iht da woad two dweam land…….

Tonight, connecting in his Charlie-way, we ventured together into “dweamland,” Autismland-style–where the dreams are in different colors. To see them, I have to work against my instincts.

Charlie, of course, already sees them.

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Comments
5 Responses to “The Autismland Dream (#281)”
  1. Bronwyn G says:

    The matriarch is a survivor.

    As is Charlie.

    You’re right about independence and interdependence.

    Lots of autistic students go to uni and higher education of some kind.

    Who thinks Son-Rise and RDI are alike? Not just in their avowed methods, but the hard sell involved.

  2. I’ve more and more students in my college classroom who tell me “I was special ed” or who seem to be AS. They’re often quite persistent in seeking out extra help and in talking to me beyond the usual classroom business and I think it’s a sign of them having learned self-advocacy. I also think of the accounts of college students with autism in Aquamarine Blue, edited by Dawn Prince-Hughes.

  3. squaregirl says:

    “Does it mean finishing high school, going on dates, graduating from college, getting married, having kids, getting that house with the white picket fence and the SUV and the minivan in the three-car garage, getting ready to watch the grandkids sporting on the lawn?”

    I rememer growing up thinking this was what I was supposed to be, yet thinking “that’s not really what I want. That’s not my dream”. the funny thing is it seems harder and harder to convince society that it is by choice and rather happily, I might add, that I am not living this life.

    There are so many versions of different therapies out there…including different versions of ABA. I always believe that it’s about finding the right match, fit and teaching style to suit each individual’s needs. I have seen many children light-up when they see they do a version of ABA, yet I know this type of therapy is not right for everyone. The fact that Charlie seems to be able to learn via ABA and seems to ENJOY learning is wonderful. When a child enjoys his learning environment, we all have to admit that something is going well…whatever you label the teaching.

  4. Squaregirl—Good teaching is best labeled as just that, good teaching! Always like to hear about your accounts of your own in the classroom.

    And Bronwyn–Son-Rise and RDI do seem to have more than a few things in common, from RDI’s specific focus is to help children “born with obstacles that prevent them from attaining relationship competence in the natural environment” (is the implication that autism is a “disorder” about relatings to others?), to the emphasis placed on Gutstein and the workshops he runs. (Gutstein’s background was originally in treating suicidal adolescents.)

  5. Bronwyn G says:

    I would be interested in what made Gutstein transfer to the spectrum. Is it because many people who are suicidal might have undiagnosed autism/Asperger’s and could have been helped when much younger, like with managing emotions and feelings and sharing experiences?

    I am sure there are autistic people who are relationally competent in the natural environment. The normal world is growing extremely unnatural for any kind of relational competence. This is my opinion, only.

    How do you want to live, Squaregirl?

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