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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.
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.
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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