Saturday, March 8, 2014

"Reaching My Autistic Son Through Disney" - Finding your voice

While this is an amazing article about autism - the processes he describes sound very similar to Torah learning - constant review of material already learned, medrash and agadata with its language of metaphor and parable. Learning to communicate with bits of the debates of chazal, rishonim and achronim.

NY Times     In our first year in Washington, our son disappeared.

Just shy of his 3rd birthday, an engaged, chatty child, full of typical speech — “I love you,” “Where are my Ninja Turtles?” “Let’s get ice cream!” — fell silent. He cried, inconsolably. Didn’t sleep. Wouldn’t make eye contact. His only word was “juice.”

I had just started a job as The Wall Street Journal’s national affairs reporter. My wife, Cornelia, a former journalist, was home with him — a new story every day, a new horror. He could barely use a sippy cup, though he’d long ago graduated to a big-boy cup. He wove about like someone walking with his eyes shut. “It doesn’t make sense,” I’d say at night. “You don’t grow backward.” Had he been injured somehow when he was out of our sight, banged his head, swallowed something poisonous? It was like searching for clues to a kidnapping.

After visits to several doctors, we first heard the word “autism.” Later, it would be fine-tuned to “regressive autism,” now affecting roughly a third of children with the disorder. Unlike the kids born with it, this group seems typical until somewhere between 18 and 36 months — then they vanish. Some never get their speech back. Families stop watching those early videos, their child waving to the camera. Too painful. That child’s gone.

In the year since his diagnosis, Owen’s only activity with his brother, Walt, is something they did before the autism struck: watching Disney movies. “The Little Mermaid,” “Beauty and the Beast,” “Aladdin” — it was a boom time for Disney — and also the old classics: “Dumbo,” “Fantasia,” “Pinocchio,” “Bambi.” They watch on a television bracketed to the wall in a high corner of our smallish bedroom in Georgetown. It is hard to know all the things going through the mind of our 6-year-old, Walt, about how his little brother, now nearly 4, is changing. They pile up pillows on our bed and sit close, Walt often with his arm around Owen’s shoulders, trying to hold him — and the shifting world — in place. [...]

So we join him upstairs, all of us, on a cold and rainy Saturday afternoon in November 1994. Owen is already on the bed, oblivious to our arrival, murmuring gibberish. . . . “Juicervose, juicervose.” It is something we’ve been hearing for the past few weeks. Cornelia thinks maybe he wants more juice; but no, he refuses the sippy cup. “The Little Mermaid” is playing as we settle in, propping up pillows. We’ve all seen it at least a dozen times, but it’s at one of the best parts: where Ursula the sea witch, an acerbic diva, sings her song of villainy, “Poor Unfortunate Souls,” to the selfish mermaid, Ariel, setting up the part in which Ursula will turn Ariel into a human, allowing her to seek out the handsome prince, in exchange for her voice.

When the song is over, Owen lifts the remote. Hits rewind.

“Come on, Owen, just let it play!” Walt moans. But Owen goes back just 20 seconds or so, to the song’s next-to-last stanza, with Ursula shouting:

Go ahead — make your choice!
I’m a very busy woman, and I haven’t got all day.
It won’t cost much, just your voice!

He does it again. Stop. Rewind. Play. And one more time. On the fourth pass, Cornelia whispers, “It’s not ‘juice.’ ” I barely hear her. “What?” “It’s not ‘juice.’ It’s ‘just’ . . . ‘just your voice’!”

I grab Owen by the shoulders. “Just your voice! Is that what you’re saying?!”

He looks right at me, our first real eye contact in a year. “Juicervose! Juicervose! Juicervose!”

Walt starts to shout, “Owen’s talking again!” A mermaid lost her voice in a moment of transformation. So did this silent boy. “Juicervose! Juicervose! Juicervose!” Owen keeps saying it, watching us shout and cheer. And then we’re up, all of us, bouncing on the bed. Owen, too, singing it over and over — “Juicervose!” — as Cornelia, tears beginning to fall, whispers softly, “Thank God, he’s in there.” [...]

1 comment :

  1. here is a response from http://thinkkids.org - they teach and promote CPS - collaborative problem solving

    While conducting a training in Oregon, one of the participants shared this amazing article from the New York Times with us: Reaching My Autistic Son Through Disney. Read it right away! And make sure to watch the video excerpt too! You won’t be able to stop. Its gripping and will bring you to tears. The dedication of these parents to understanding their child’s inner world and connecting with him is inspiring. As is their son’s determination to make sense of the world and connect with others despite his challenges.
    Using Collaborative Problem Solving with many kids on the autism spectrum, here’s an excerpt that rang especially true:
    “There’s a reason — a good-enough reason — that each autistic person has embraced a particular interest. Find that reason, and you will find them, hiding in there, and maybe get a glimpse of their underlying capacities. In our experience, we found that showing authentic interest will help them feel dignity and impel them to show you more, complete with maps and navigational tools that may help to guide their development, their growth. Revealed capability, in turn, may lead to a better understanding of what’s possible in the lives of many people who are challenged.”
    Their story shows the power of meeting kids where they are at, of joining, of listening intently for small clues to what they are experiencing and trying to communicate, immensely challenging though it might be. We are also reminded of the critical role of shared play and imagination in collaborating with children. Amazing stuff.

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