Reaching My Autistic Son Through Disney
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.
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.”
Read more: http://www.nytimes.com/2014/03/09/magazine/reaching-my-autistic-son-through-disney.html?ref=education