Friday, March 7, 2014

AUTISM UPDATE: REACHING YOUR CHILD...THROUGH DISNEY

I thought this would interest many of you Moebius moms and dads, given that autism is sometimes--though by no means always--associated with Moebius Syndrome; and so some of you have children who have Moebius, and also are touched by autism.  So if your child is autistic, how can you reach him or her?  Make things better?  Well, there are many possibilities.  Even Disney.  The following is an excerpt from a New York Times magazine piece--I will excerpt it here; to read the whole thing, go here.  Meanwhile, read on:

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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.
Photo
Owen at 18 months, before signs of autism. Credit From the Suskind family
Then Walt slips out to play with friends, and Owen keeps watching. Movie after movie. Certain parts he rewinds and rewatches. Lots of rewinding. But he seems content, focused.
We ask our growing team of developmental specialists, doctors and therapists about it. We were never big fans of plopping our kids in front of Disney videos, but now the question seemed more urgent: Is this good for him? They shrug. Is he relaxed? Yes. Does it seem joyful? Definitely. Keep it limited, they say. But if it does all that for him, there’s no reason to stop it.
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.”

We told his various therapists about what happened. Cornelia and I could think of little else. Owen reached out, if only for a moment, from his shut-in world. We spoke to our child.
The speech therapist tamped down our enthusiasm. Dr. Alan Rosenblatt, our trusted developmental pediatrician, did, too. He explained that echolalia is a common feature in kids like Owen. It’s something babies sometimes do between 6 and 9 months, repeating consonants and vowels as they learn to turn babble into words. It’s also something seen in people with developmental disabilities who can’t speak. Just like what the term suggests, they echo, usually the last word or two of a sentence. “You’re a very smart and pretty girl,” a mother might say to her daughter. “Pretty girl,” the child will respond, an echo. Do those kids know what the words mean, we pressed Rosenblatt. “Usually not,” he said. “They may want to make a connection, which is hopeful,” he added.
“They just repeat the last sound,” I croaked. He nodded. Why, I persisted, in a last stab, would he be rewinding that one part for weeks, maybe longer, and choose that phrase from so many in an 83-minute movie? Rosenblatt shrugged. No way of knowing.
Three weeks after the “juicervose” dance, we are at Walt Disney World. Walt grabs Owen’s hand, and off they go down Main Street, U.S.A. There are attractions in Fantasyland — the Mad Tea Party, Snow White’s Scary Adventures, Mr. Toad’s Wild Ride — that echo movies they both love. The boys sit in the flying galleon on Peter Pan’s Flight as it swirls and dips over landscapes and figures from Never Land, the Lost Boys frolicking in their lair, Wendy walking the plank, Peter Pan crossing swords with Captain Hook. They look like any other pair of brothers, and in the trick of this light, they are.
Each time Cornelia and I feel that, we catch ourselves. After the “juicervose” euphoria and then the cold water poured on us by doctors, we try to make sure we aren’t just seeing what we want to see.
But by midafternoon, it’s clear that Owen isn’t self-talking in the streams of gibberish or flapping his hands as he usually does. Some, but not much. He seems calm and focused — following the group, making eye contact — and oddly settled, with a slight smile, eyes alight, just as he is while watching the movies on our bed. Owen seems at home here, as though his identity, or however much of it has formed, is somehow tied to this place.
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A drawing of Abu from “Aladdin” by Owen. Credit From the Suskind family
On the way out of Magic Kingdom, when Walt spots the Sword in the Stone near the carousel, we can’t help indulging in fantasy. A Disney actor dressed as Merlin is there, reciting dialogue — “Let the boy try.” As we approach the anvil, someone flips a hidden switch that loosens the sword. Walt pulls it out as Merlin cries, “You, my boy, are our king!”
Then both of them turn to Owen. “You can do it, Owie,” Walt whispers. “I know you can.” Owen looks evenly at his brother and Merlin, and then steps to the anvil and lifts the sword true. Did he understand what Walt was saying? Did he just imitate what he saw his brother do? What the hell difference did it make? Today, in the sunlight, he’s the hero of his imagination.
It’s Walt’s 9th birthday, September 1997, in our new house near Chevy Chase Circle. Owen is 6½. After roughhousing with buddies in the backyard at the end of his party, Walt gets a little weepy. He’s already a tough, independent kid, often the case with siblings of disabled kids. But he can get a little sad on his birthdays. As Cornelia and I return to the kitchen, Owen walks in right behind us.
He looks intently at us, one, then the other. “Walter doesn’t want to grow up,” he says evenly, “like Mowgli or Peter Pan.”
We nod, dumbly, looking down at him. He nods back and then vanishes into some private reverie.
It’s as if a thunderbolt just passed through the kitchen. A full sentence, and not just an “I want this” or “Give me that.” No, a complex sentence, the likes of which he’d not uttered in four years. Actually, ever.
We don’t say anything at first and then don’t stop talking for the next four hours, peeling apart, layer by layer, what just happened. Beyond the language, it’s interpretive thinking that he’s not supposed to be able to do: that someone crying on his birthday may not want to grow up. Not only would such an insight be improbable for a typical 6-year-old; it was an elegant connection that Cornelia and I overlooked.
It’s as if Owen had let us in, just for an instant, to glimpse a mysterious grid growing inside him, a matrix on which he affixed items he saw each day that we might not even notice. And then he carefully aligned it to another one, standing parallel: The world of Disney.
After dinner is over and the boys retreat upstairs to their attic lair, Cornelia starts to think about what to do now. It’s like he peeked out from some vast underground and then vanished. He’s done this before, but never quite like this. “How on earth,” she says almost to herself, “do you get back in there?”
I feel she’s asking me. She has been the one lifting the burden each day, driving him to therapists and schools, rocking him to sleep as he thrashes at 3 a.m. I’m the one who tells stories, does voices, wears a propeller hat. Her look says, “Find a way.”
Soon I’m tiptoeing up the carpeted stairs. Owen’s sitting on his bed, flipping through a Disney book; he can’t read, of course, but he likes to look at the pictures. The mission is to reach around the banister into his closet and grab his puppet of Iago, the parrot from “Aladdin” and one of his favorite characters. He has been doing lots of Iago echolalia, easy to identify because the character is voiced by Gilbert Gottfried, who talks like a busted Cuisinart. Once Iago’s in hand, I gently pull the bedspread from the foot of Owen’s bed onto the floor. He doesn’t look up. It takes four minutes for Iago and me to make it safely under the bedspread.
Now crawl, snail-slow, along the side of the bed to its midpoint. Fine.
I freeze here for a minute, trying to figure out my opening line; four or five sentences dance about, auditioning.
Then, a thought: Be Iago. What would Iago say? I push the puppet up from the covers. “So, Owen, how ya doin’?” I say, doing my best Gilbert Gottfried. “I mean, how does it feel to be you?!” I can see him turn toward Iago. It’s as if he is bumping into an old friend. “I’m not happy. I don’t have friends. I can’t understand what people say.” I have not heard this voice, natural and easy, with the traditional rhythm of common speech, since he was 2. I’m talking to my son for the first time in five years. Or Iago is. Stay in character. “So, Owen, when did yoooou and I become such good friends?”
“When I started watching ‘Aladdin’ all the time. You made me laugh so much. You’re so funny.”
My mind is racing — find a snatch of dialogue, anything. One scene I’ve seen him watch and rewind is when Iago tells the villainous vizier Jafar how he should become sultan.
Back as Iago: “Funny? O.K., Owen, like when I say . . . um. . . . So, so, you marry the princess and you become the chump husband.” Owen makes a gravelly sound, like someone trying to clear his throat or find a lower tone: “I loooove the way your fowl little mind works.” It’s a Jafar line, in Jafar’s voice — a bit higher-pitched, of course, but all there, the faintly British accent, the sinister tone.
I’m an evil parrot talking to a Disney villain, and he’s talking back. Then, I hear a laugh, a joyful little laugh that I have not heard in many years.
A week after the Iago breakthrough, we decide to try an experiment. Owen usually picks the animated movie whenever we gather in front of the 26-inch Magnavox in the basement. On this night, we pick it for him: “The Jungle Book.” It’s a movie that the boys have long loved and one that Cornelia and I remember from our childhood: Disney’s 1967 rendition of Rudyard Kipling’s tales of Mowgli, a boy raised by wolves in the jungles of India, schooled by Baloo, the obstreperous bear, and Bagheera, the protective black panther.
We watch the movie until, a few minutes along, we get to its signature song, “The Bare Necessities.” We turn down the sound, and in my best attempt at the voice and inflection of Phil Harris, who voices the bear, I say: " ‘Look, now, it’s like this, little britches. All you’ve got to do is. . . . ' ”
Then we all sing, trying to get the words right:
Look for the bare necessities,
The simple bare necessities. . . .
When you look under the rocks and plants
And take a glance at the fancy ants, and maybe
try a few.
Just as Baloo looks at Mowgli, I look at Owen; he looks squarely back at me, and then it happens. Right on cue, he says, " ‘You eat ants?’ ” That’s Mowgli’s line; he speaks it as Mowgli, almost like a tape recording.
I’m poised with Baloo’s next line: " ‘Ha-ha, you better believe it! And you’re gonna love the way they tickle.’ ”
A few minutes later, when King Louie, the crazy orangutan, voiced by the jazz trumpeter and singer Louis Prima, sings to Mowgli about becoming a man, Walt’s ready. " ‘Teach me the secret of man’s red fire,’ ” he says, pulling on his ear, waiting for the whispered secret from the boy. Owen recoils, just as Mowgli does in the movie, and says, " ‘I don’t know how to make fire.’ ” Cornelia catches my eye; I shake my head. The inflection and ease of speech are things he can’t otherwise muster. It’s almost as though there’s no autism. Mimicry is one thing. This isn’t that. The movements, the tone, the emotions seem utterly authentic, like method acting.
When Owen was 3, his comprehension of spoken words collapsed. That’s clear from every test. But now it seems that as he watched each Disney movie again and again, he was collecting and logging sounds and rhythms, multitrack. Speech, of course, has its own subtle musicality; most of us, focusing on the words and their meanings, don’t hear it. But that’s all he heard for years, words as intonation and cadence, their meanings inscrutable. It was like someone memorizing an Akira Kurosawa movie without knowing Japanese. Then it seems he was slowly learning Japanese — or, rather, spoken English — by using the exaggerated facial expressions of the animated characters, the situations they were in, the way they interacted to help define all those mysterious sounds. That’s what we start to assume; after all, that’s the way babies learn to speak. But this is slightly different because of the way he committed these vast swaths of source material, dozens of Disney movies, to memory. These are stored sounds we can now help him contextualize, with jumping, twirling, sweating, joyous expression, as we just managed with “The Jungle Book.”
So begin the basement sessions. During daylight, we go about our lives. Walt rides his bike to school each morning, back home each afternoon. Cornelia manages the house, the bills, the overloaded schedules of the kids. I am editing and writing for The Journal, putting on my suit and subwaying to the bureau.
No one knows we’re all living double lives. At night, we become animated characters.

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Fascinating stuff.  Read the whole thing.
Lesson:  never give up...

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