Life, Animated (5 page)

So what, I wonder. He’s been doing it since “juicervose.”

“It’s just echolalia. Parrot stuff. He’s just repeating sounds.”

I can hear her shaking her head on the phone line.

She explains in a measured way, like talking to a child, that the phrase of gibberish he’s been repeating for the past month she’s just deciphered. He’s been watching
Beauty and the Beast
incessantly and he seems to be repeating something—“bootylyzwitten”—on a regular basis. And he was just repeating it in the car. “You’re not going believe it.”

At this point, I am jumping though the phone. “What? What!”

“Beauty lies within.”

I can’t say anything for a minute.

“Are you there?”

“I’m here, I just can’t believe it,” I say, finally. “Of all the phrases, that one. That’s what the movie’s about—that’s its theme. Could he actually be understanding what he’s watching?”

I tell her I’ll call tonight—definitely tonight!—but I have to run. I’m late for class.

It’s the fall of 1995 and, on the surface, quite a bit has changed. Not that I’ve re-enrolled in college. I’m in Providence, Rhode Island, following Cedric through his formative freshman year at Brown University for a book. In the spring, the stories about him and other kids at his blighted high school won me the Pulitzer Prize. Those stories were, in essence, about beauty—as well as native intelligence and sensitivity—lying within, though these qualities are often hard to find and harder to measure, something we humans seem so anxious to do: to dole out credit and rewards. This was all on display in the portrait of Cedric and his peers at the gang-dominated high school. Readers were moved by the recognition of how hollow so many of our judgments are—something Cornelia and I began to slowly acknowledge around the time Eric, the Down syndrome kid, hugged us that day in Owen’s classroom.

And now, in my hand, is a prize that, of course, has utterly the opposite effect in the reactions it draws. Like so many prizes, it’s the ultimate shorthand for instant, tell-a-book-by-its-cover judgment. It’s basically attached to your name—all people need to hear. These ironies are visible only to Cornelia and me, as are the ways our private struggle is now driving my professional life.

Owen, though, had a statement on the matter. Not long after I won the prize, he noticed it. A Pulitzer isn’t like one of those peace medals, or the Nobels, with a golden disk hanging from a ribbon. It’s quite small, a Tiffany & Co. crystal about the size of a plum with an engraving of Joseph Pulitzer’s head next to your name. We put it on a waist-high table in the living room of the Georgetown house, next to some framed pictures. That’d be right in Owen’s line of sight. It was only when he got close to the window that a shard of reflected sunlight coming off the crystal caught my eye. I was reading on the couch, which meant I could flip over its low back onto the floor and lunge. I caught his cocked hand as he was about to throw it through the window.

Cornelia and I had some good yuks at the irony—
Owen sees right
through the bubble of reputation
—and then made sure to place it on a high mantel over the fireplace in our new house.

That new house is where Cornelia is calling from to tell me about bootylyzwitten. We used Random House’s advance for the book as a down payment on a modest three-bedroom house in DC’s northernmost corner near the Maryland line.

Of course, recognition of irony is no barrier to action. Prize in hand, we start to feel lucky again, for the first time in years, and empowered enough to shape the world into whatever we need it be, for Owen’s sake. For every
why
, suddenly there seems to be a
why
not
. Nothing dramatic. We just go a little crazy, in a very conventional way: we start to undervalue our fears and over-appreciate our hopes.

That means a change for Owen. A journey of hope has begun. Specifically, he’s now spending half his days at Ivymount and half at a lovely little preschool in Cleveland Park with mostly typical kids from a privileged world. The school, called NCRC, was originally the National Child Research Center when it was founded by a Rockefeller grant in the 1920s as a place to study child development. The legacy of that, many decades later, is that they take a handful of special needs kids each year. It isn’t easy to get in. But among an array of lawyers and lobbyists, think-tank chiefs and investment types, the family of a national affairs reporter for the
Journal
—who just won a Pulitzer for those stories about the hidden virtues of kids from the cross-town slums—is an indispensable addition. Yes, that’s the way Washington works.

Cornelia is now racking up more miles than a long-haul trucker and is happy to do it, driving Owen north to Ivymount each morning, often volunteering at the school, grabbing coffee, or grocery shopping at a nearby mall—anything to kill a few hours—then handing him a bag lunch to eat in the car and racing down to NCRC, where he spends afternoons in the aptly named “Sunshine Room.” There he’s mixing with typical kids. The idea—loosely supported by our therapists—is that he’ll model his behavior on those new peers and may form relationships that will stretch his capabilities, and rise to meet their challenge. To us, that all feels like sunshine.

Denial and hope, of course, are cousins. Bring them together, you’ve got illusion. There’s no real social connection occurring at NCRC. At least, not for Owen. Cornelia and I, though, find plenty of it.
We make lots of friends
. Parents of typical kids, who are happy to welcome us into their orbit. Owen is now mixing in a group of children who are still at an age where their friends are often selected by the parents. With so few kids in each class, it all fits elegantly: a tight gang of two dozen parents and a dozen or so children, moving as one. Parties, barbecues, and then evenings when the parents all go out and have the kids all stay with a babysitter at someone’s house. The best part: birthday parties. Everyone in the class is invited. It’s beyond parental edict; it’s a school rule!

Not that there’s much interaction at those birthday parties. But everyone has a VCR and everyone has the Disney classics. So there is a bit of exchange, a hug or “hi” (one of Owen’s new words) upon arrival; then they’ll watch
Jungle Book
or
Snow White and the Seven
Dwarfs
together, side by side, until the other kids drift away. Squint a bit, and it looks a lot like friendship.

As for Walt…
nothing to worry about.
He’s like a junior adult at seven, able to handle anything that first grade can throw at him, and taking advantage of all Lafayette Elementary, our neighborhood public school in Northwest DC, has to offer.

Everyone crafts stories out of their experiences, a fundamental human impulse, and Cornelia and I have one for Walt.

It happened in the first month of first grade as Cornelia drove him to this new school. Daunting for any kid, right?
Well, a few blocks away, Walt taps his mother on the arm and says, “Let me out—I can walk from here, mom.” Cornelia’s flummoxed. “Walt…they know you
have
parents. You’re not some street urchin making your way in the world.”

“I’ll be fine. I know the way.” And off he goes. Soon he starts biking the half mile or so to school, eliciting shock from a few of his classmates’ parents—seasoned by years of milk carton photos to fear the worst.

We never fear for him. It seems like every step he takes toward autonomy is a worthy feat, deserving of affirmation, especially because he doesn’t abandon his brother, something we really do fear.

Many years later, as he moved into adult life, Walt explained what was really going on. He was embarrassed by his brother. The looks, the questions, it was as though he was facing a wide world of prying eyes, too many to challenge, to face down. He told us he wanted to be dropped off because his brother was in the car. Walt knew that if Cornelia walked him in that first day, like the other moms, she’d have to bring Owen in with her. And God knows what might have happened.

In present tense, we’re blind to this. We tell friends of the first day drop-off. Turn it into narrative.
That Walt. He is so independent.

There are no stares in our basement. As Owen turns five in the spring of 1996, his life is, more and more, spent in front of a screen, with Walt sometimes at his side. The Disney movies—we now had fifteen of them in our collection, and some shorts—rule the subterrain.

That’s where the big TV is in the new house. It’s a cave, dark and warm, with just a little natural light from the half windows near the ceiling. On the couch, we watch movies with Owen. Family members move in a rotation. Owen, after a heavily scheduled day of school and after-school therapies, settles down below. Corn might drop in to watch
Lady and the Tramp
with him. When he gets home on his bike in the late afternoon, Walt catches a viewing of
The Little
Mermaid
. In the evenings, before Owen’s off to bed, I squeeze in a little
Aladdin
.

Is this healthy? “Team Owen”—what we now call Owen’s team of doctors and therapists—is uncertain. We tell them he’s reciting long passages of movie dialogue in ten- or twenty-second bursts without, it seems, any discernible recognition of what he is saying, like someone who sings “Frère Jacques” for years and never notices—or, frankly, cares—that it’s about someone named Brother John.

In school this recitation impulse is becoming a problem, something to be remedied. He’s doing it when he is supposed to be quiet or listening to instructions or, most importantly, engaging in some sort of activity with other students. The doctors and now the teachers call it “self-talk” and formally define it as “perseverative behavior”—a feature of autism and pervasive developmental disorders defined in the medical literature as the “repetition of a particular response, such as a word, phrase, or gesture, despite the absence or cessation of a stimulus, usually caused by a brain injury or other organic disorder.” Looking for ways to control it and reduce it, they recommend we limit the movies to an hour a day.

We say that’s impossible. The movies run ninety minutes, and he gets very agitated if you cut it off before the end. After “juicervose” and “bootylyzwitten,” we aren’t about to turn away from the screen. Though his pronunciations are slurry, the cadence swift and arrhythmic, we are ever trolling the verbal stream for a familiar word. Or even a sound. Take “Seb.” It’s not a three-letter grouping you find much in common usage (sebaceous? seborrhea?). But it’s got two strong consonants that stand tall in the flow of enunciation. Hear it, and we know he is reciting some passage that involves Sebastian, King Triton’s crab sidekick from
The Little Mermaid
. And, of course, we dive in, with every reference from the movie we can summon. As we do, he looks at us, quizzically, often smiling. For a particularly good rendition of the crab—the voice actor, Samuel E. Wright, has a rich voice and uses a Caribbean accent—he might offer a “Sebastian is funny” before running off.

Toddlers engage in what’s called “parallel play,” where they play alongside another child but not
with
them. Developmentally, that stage tends to end between twelve and eighteen months. What’s clear, is that in many areas Owen has regressed to a place before that. He is in parallel play in only the most general way; more like
proximity play
. The goal—everyone’s goal—is eventually to get to the sunlight of interactive play—full of expressions, mirroring one another, quick responses that build a give and take, a kind of collaborative imaginativeness—that is such a powerful driver of growth and development in children. He was doing plenty of that in the last days in Dedham.

But you take what you can get. Side-by-side engagement is where we live each day. We draw warmth—and a sense of connection we desperately desire—from smiling with him at some parts of a Disney favorite, growing quiet at others. He definitely seems to be reacting to the movie in gesture, if not, of course, in word. There are times he laughs—like when Robin Williams, as the Genie in
Aladdin,
goes through lightning-fast transformations from Arnold Schwarzenegger to Jack Nicholson to William F. Buckley as he sings “Friend Like Me”—and we laugh uproariously in affirmation, even on the twentieth viewing. And then there are times when he seems to grow quiet, watching Mrs. Jumbo reach from the window of her prison car to wrap Dumbo in her trunk and rock him. Often he’ll be sitting next to Cornelia or me and we’ll pull him close.

But then we hear a phrase that troubles us: “Not happy.” He’s saying that a lot. And it’s new. We investigate and find out it’s the go-to phrase of an assistant teacher from his half days at Ivymount. Trying to control his behaviors, or redirect them, she’s tells him she’s “not happy.”

It’s Owen’s main phrase—at home, in the car, at the mall—and it doesn’t take us long to feel “not happy” with Ivymount. Owen seems slightly more able than some of the kids this year in his class, and his modest progress is enough to spur hope. By the fall of 1996, Ivymount—with the big-hearted Erics and a heavily structured “special needs” curriculum—is gone. It’s a full day with the typical kids at NCRC.

Just before Thanksgiving in 1996, a Maryland psychiatrist, who’s on a new National Institute of Mental Health committee to assess autism treatment, speaks at the school. It’s been advertised. Interested NCRC parents from DC and Maryland crowd in, many seeking the next school for their own children. Before introducing the doctor, C. T. Gordon, NCRC’s director asks Cornelia to speak about our family’s experience on behalf of the other special-needs families.

“For all of us who have a special needs child, going places can be a difficult thing,” Cornelia tells the audience. “There’s the unpredictability of what our child may do in public. Worry about the reactions of other people and their siblings. And that’s something that’s with us all the time and weighs heavily. But being at NCRC is easy. It’s a place that really cares about our kids, that’s here to help our kids, and everyone on the staff makes us feel welcome and at home, not different.”

Afterward, she and Dr. Gordon talk. He also has an autistic son, a year older than Owen, with no speech. Dr. Gordon will soon join Team Owen.