Life, Animated (4 page)

That’s what I hear every day, I tell Cornelia, from corporate public relations departments. She laughs and says, “Right, we’ve had the odd complaint, but on the whole I’ve been a saint.”

On the screen, the song’s over. Owen lifts the remote. Hits rewind.

“Come on, Owen, just let it play!” Walt moans. But he doesn’t go back to the start of the song, just twenty seconds or so, to its 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—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 softly fall, whispers, “Thank God…he’s in there.”

Three weeks after the “Juicervose” dance, we’re at Walt Disney World.

We’d already scheduled a trip to Florida, with cheap flights booked months ahead, to visit my brother, Len, and his family—two boys, same age as ours—in Hollywood, Florida, where my mother also now lived.

The joke in the family is that Len never read the deathbed letter from my father about seeking the “worthwhile” life, which is why he is now raking it in as a financial manager. The easy lore is that I am more like our aesthetic, head-in-the-clouds father, an insurance executive who dreamed of teaching or writing; my brother, more like my ferociously pragmatic mother. It is, at best, half true.

As we became parents, we could see that—just like our kids—we were mixtures of both of our parents’ traits, along with plenty of untraceable origins. What didn’t change through the years—back then to right now—is that, at day’s end, there’re just the two of us, two brothers, having to figure it all out. Late that night, after everyone has gone off to sleep, he asks me how things are going. We talk most days—a quick call—but sitting quietly under a palm tree by his pool and beneath a canopy of stars, we can cut deeper.

“Best of times, worst of times,” I say, explaining that things couldn’t be going much better at work, or, with Cornelia—never more amazing than when she’s challenged—or Walt, lunging forward, reaching for six-year-old glories. But we’re not really sure what the future will hold for Owen.

“I see he’s not speaking yet,” Len opens.

Nope.

“Could it be a while?”

Yup.

“All these therapies, five or ten of them a week—at one hundred twenty dollars an hour. They covered by insurance?”

Nope.

Then we just sit there as a gentle breeze rustles the palm. I know he is doing some calculations. That’s what he does for his clients, every day: life math. He’s quite good at it—definitely got that from our mom.

After a minute of silence, I figure I’ll sketch the size of the equation.

“Worst case, we’ll have to support him for the next fifty years and thirty years after we’re dead.”

He’s already there.

“That worst case or likely case?”

“Somewhere in between, but we’re hopeful.”

Hmmm. He’s not one to discount hopeful. And he knows its uses, like the time in high school I convinced him to run for senior class president and he won.

“Hope’s not nothing,” he says, quietly, to his reflexively optimistic little brother. “Just tough to run the numbers on it, that’s all.”

And we both nod, get up, hug, and go off to sleep.

Two days later, we borrow one of their cars to drive the three hours to Orlando.

For the big day, Walt wears his Georgetown sweatshirt. He has a favorite babysitter who goes there, just down the street in the town where he now lives. Great basketball tradition—he knows all about that and can cite statistics. As a typical kid, at seven, his identity is becoming rooted to a place, his place, which he carries with him wherever he travels. This is the kind of awareness—of where one sits, or fits, in a widening world—that starts growing in most kids from around the time they’re three.

It is hard to know whether any of these traditional steps are being crossed by Owen. His thoughts and feelings remain a mystery. We told his various therapists about what happened watching
The Little Mermaid
. Cornelia and I could think of little else. It felt, in our video-inspired imaginations, like
Rain Man
had been replaced by
The Miracle Worker
, and that we had lived that iconic scene where Annie Sullivan breaks through to the young Helen Keller by signing w-a-t-e-r into the deaf and blind girl’s one hand as water from a pump gushes across the other. We had to be Annie Sullivans, too, and felt we’d had a breakthrough on that rainy afternoon watching Ariel lose her voice. 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. Rosenblatt, too. He explained “echolalia” is a common feature in kids like Owen. It’s something babies sometimes do between six and nine months, repeating consonants and vowels as they learn to turn a baby’s babble into words. It’s also something seen in the 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 Dr. 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 eighty-three-minute movie—as the one he uttered? Dr. Rosenblatt shrugged. No way of knowing.

So, left groping in darkness, somewhere between Helen Keller and a pet store parrot, we now enter the gates of the Magic Kingdom.

It is remarkably unchanged from when Cornelia and I visited ten years ago, before we had kids, or from when I visited in 1971. It is
we
who have changed…now, as parents, seeing it all through our children’s eyes, seeing what they see and feel. Walt grabs Owen’s hand, and off they go, the two of us right behind them, down Main Street, U.S.A. There are attractions in Fantasyland—Mad Hatter’s Tea Party, Snow White’s Scary Adventures, Mr. Toad’s Wild Ride—that echo movies they both love. Walt dives in full bore, laughing, joking, sitting with Owen on Peter Pan’s Flight in the two-passenger flying schooner, the one just ahead of us, 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. We run to Disney-MGM Studios, in search of the Teenage Mutant Ninja Turtles. That day’s park schedule says they’re having an autograph session. The boys wait—the line is long—and get pictures with Donatello and Raphael, the characters they dressed up as for their last Halloween in Massachusetts. It’s as if nothing has changed, as if the last year and a half was a bad dream.

And each time we feel that we catch ourselves. After the “juicervose” euphoria—and 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 mid-afternoon 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, a slight smile, eyes alight, just as he is while watching the movies on our bed.

By day’s end, we’re feeling a bit of the same—settled, in a kind of walking repose that we’ve not felt since the days in Dedham. 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 the Magic Kingdom, when Walt spots the Sword in the Stone near the carousel, we can’t help indulging fantasy. It is a fortuitous moment: A Disney actor dressed as Merlin appears near the sword periodically during the day. As the boys approach the sword, he’s there, reciting dialogue—“Let the boy try”—and then, approaching 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, then steps to the anvil and lifts it true.

Did he understand what Walt was saying? Did he just imitate what he’d seen his brother do?
What the hell difference did it make!

Today, in sunlight, he’s the hero of his imagination.

C
ornelia and I are changing. By March of 1995, our second spring of crisis in Washington, it’s now something we can see in the mirror.

And not just in the bags under our eyes. We’ve become single-minded. She’s now going on a year and a half of round-the-clock duty with carpools, therapists, school meetings, more therapists. At all hours of the day, she’s executing a self-styled, round-the-clock version of Greenspan’s Floortime: follow Owen around, try to pick up cues and dive into his world; show intense, upbeat interest. This sort of exertion demands focus and priorities. Niggling day-to-day concerns are sandwiched between frantic work with Owen and taking care of a growing Walt. Those “
What’s new, how are the kids?
” phone calls that are the fabric of keeping up with old friends, or making new ones, have been jettisoned. Who has time for that? Some buddies from Boston wonder if we’ve entered the witness relocation program.

I’m changing, too, even if it’s directed by subconscious drives I can’t—or, at very least, won’t—recognize.

A year before, in February 1994, to be exact—right after we met with the Ice Queen and first heard the dreaded word
autism
—I was chatting with my roommate from Columbia J-School, Tony Horwitz, who had just returned from Bosnia, where he’d written a powerful story for the
Journal
about the capacity of children to summon hope in war zones. As we talked, it dawned on me that to learn in some of the toughest “combat zones” of DC was a kind of feat, like one of those kids in Bosnia finding a calculus book on the street and learning calculus. Find a kid like that and we’d roll a red carpet from Harvard to the former Yugoslavia. But if it’s an inner-city African American or Latino American kid—managing to learn while the bullets fly—we shrug. I sensed a gap, an unexamined one, and that’s often the starting point of a story.

I looked for the worst high school in America and found a worthy nominee in Frank W. Ballou Senior High School in Southeast DC. So that was where I spent most of my time in those fear-filled days after Owen had vanished.

Cornelia gave me one of her favorite cassette tapes from college—John Prine—and driving from one side of town to the other, by the Capitol dome and down Martin Luther King Boulevard, I’d often play Prine’s song “Hello In There,” about reaching out to people who’d become invisible:

Please don’t just pass ’em by and stare,

As if you didn’t care,

Say, “Hello in there.”

After a few weeks of watching kids pass in the hallways of Ballou—a school of virtually all African American students in a part of DC where 70 percent of the men between eighteen and thirty-six were somewhere in the criminal justice system, where four hundred students out of fourteen hundred were absent each day (but never the cops and security guards manning the building)—my eyes began to adjust. Did I consider these students, many of whom would end up in jail or worse, fundamentally different in some essential way from the kids in my suburban high school in Wilmington, Delaware, most of us bound for college? It’s a stop-and-think question I wouldn’t have asked—asked of myself—in my earlier days as a reporter, hustling forward, head down, working sources in day-to-day competitions to break the news or find that perfect anecdote to lead a story.

Looking at these discarded students, did some part of me see the way people stared at my son, seeing him flail and murmur just long enough to dismiss him? No doubt, though I wouldn’t have said so at the time.

What I did do was spend days with the kids at Ballou, just listening to them—these delicately coiffed girls and baggy-panted boys, encased in their protective shells—as best I could. They were closed off to me, wary of the world I came from; we spoke different dialects, had few common references. But for every few words they’d utter, whatever the subject—a dispute in the halls, a new kind of Nike, the latest rap song—I’d follow
their
cue, wherever it led. Months along, they began to show me a few tiny glimpses of what was real in their lives.

One of the kids, a lonely, isolated honors student named Cedric Jennings, a geeky pariah in halls ruled by gang leaders, dreamed fervently of making it to the Ivy League. Though no one from his high school had made it to one of these esteemed schools in a decade, he was convinced his path to victory would be assured by acceptance into a highly selective MIT summer program for gifted minority students between their junior and senior years. He’d banked everything on a long-shot chance of getting in and could think of nothing else, even as everything around him collapsed—his dad in jail, his single mom struggling, drug dealers ruling every corner of his neighborhood, and even teachers saying, in his words, “You can’t, you won’t, why bother.” He called them “dream busters.”

Did I feel that everyone we talked to about Owen’s prospects for an independent life was a dream buster?

Of course. Did I recognize it? Not in the least.

Not until I found myself in the empty
Wall Street Journal
office at three
A.M.
trying to bring to a close a five-thousand-word narrative about the struggle of Cedric and his classmates to summon hope when there was no reason to be hopeful. I’d arrived at my final notebook: about the night, after a long prayer meeting at church, when Cedric and his mother—a “church mom” who’d sacrificed everything for her son—passed the street-corner drug dealers, out in force at midnight, to grab the mail from the box in the foyer and ascend the crumbling steps to their apartment.

It was quiet in the deserted bureau. I don’t know how long I sat, but at some point I wrote:

Under the
TV Guide
is a white envelope.

Cedric grabs it. His hands begin to shake. “My heart is in my
throat.”

It is from MIT.

Fumbling, he rips it open.

“Wait. Wait. ‘We are pleased to inform you…’ Oh, my God.
Oh, my God.” He begins jumping around the tiny kitchen. Ms.
Jennings reaches out to touch him, to share this moment with
him—but he spins out of her reach.

“I can’t believe it. I got in!” he cries out, holding the letter
against his chest, his eyes shut tight. “This is it. My life is about
to begin.”

I’m not much of a crier. I’ve cried just a handful of times in the twenty years since my father passed. But I wrote those sentences through tears.

I straggled home at four
A.M.
Cornelia had been awake for hours with Owen; just got him back to sleep. It’d been a tough few days of her trying to get through to him—to draw him out—and another fitful night.

I told her I’d finished the story, written the last line, and was overcome, sitting there at the desk. “I think I’m losing my mind, bawling my eyes out in the bureau in the middle of the night.”

“No,” she said, and, to my surprise, smiled.

“What?”

“It’s a good thing. You’re growing.”

She lay down to catch a few hours’ sleep before sunrise and I slipped into the boys’ room.

It was dark and, sitting on the rug, I listened to them breathing heavily. All was well on the top bunk, with Walt; not so below. I began to think about how when your life’s orderly and intact, it’s so easy to write about things, to step back as the dispassionate observer, full of knowingness, that crafted omniscience. But once you’ve felt how complicated the world can be, how little you can control, that surety is harder to manage. I was a mess. My heart had never been much engaged in my work—too dangerous, a journalist is supposed to be “objective,” whatever that means. Now my emotions were spilling out all over the place. But maybe that wasn’t such a terrible thing; maybe that was what Cornelia was saying. All I knew was that in a few hours she’d be up, rising like she did every day, thinking this is it, this is the day when Owen’s life is about to begin. Or begin again.

Every day since that night in the bureau—a year ago now—I wake up feeling that too: that today Owen’s life will change. And at day’s end, I realize it hasn’t, that I know nothing worth anything.

Owen is starting to talk in the spring of 1995. It isn’t much—a few words in succession. It’s oddly arrhythmic, not like his voice once was. It actually sounds a little like Helen Keller, like someone trying to speak who cannot hear. Blunt sounds, spoken out of need.
Juice,
never left.
But
Car. Mine. Hot. Cold.
And the words don’t seem to be building into anything beyond a cluster of two or three.

The best word—the one of greatest utility—is
mine
. The key is to be quick. When he points to something, anything—a book, a video, a toy—and says “Mine,” you move to grab it first. Hold it up and ask him what it’s called.
Wait.
He doesn’t get it unless he comes up with something. “A book. Owen, say ‘
book
.’”

Almost every evening, the teacher from Ivymount calls to go over, in detail, all they did during the day. Today, the trio—Owen; his nonspeaking peer, Julian; and the big-hearted Down syndrome boy, Eric—went to a concert in the gymnasium or outside to the soccer field, threw a ball or learned to hold a pencil.

Any of these things might provide a handle for some connection, at least in theory. But in the descriptions of how she guides the children, get them to sit, to look at her, to walk with the group, she is teaching Cornelia and me how to be with our son. In her tutorials, we’re beginning to understand just how much has gone haywire. His auditory processing—the way we hear and understand speech—is barely functioning. Visual processing, too, is askew. He often turns his head and squints out of the corner of his eye, as though seeing you, straight on, is painful or overwhelming. These are all features of autism. As is getting up every night. His senses are untethered, floating each minute, hour after hour, on swift currents without a mooring or the anchor of sleep, when the body’s sensory equipment rests and replenishes itself. Not for Owen. His last nap was in Dedham. Hasn’t taken one since. He’s sleeping about three hours a night, and maybe another hour or two after Cornelia or I rock him back to sleep. We’ve heard a new term, “regressive autism,” for kids who appear normal, then experience a change—a regression—between eighteen and thirty-six months. Though we’re still using PDD-NOS, this regressive autism seems to fit.

But when he’s tired, wanting to fall back to sleep in the predawn hours, we hear a golden phrase—“hold you”—that takes us in the other direction, as he displays an urge for connection that autistic kids aren’t supposed to have. He says it, and holds out his arms, as we sit in the glider that we saved from his nursery back in Dedham. It doesn’t happen often, but a few times is enough.

A need expressed and met. Of course, it’s the kind of thing a dog would say if it could talk, and variations of this desire to hold or hug is a favorite of chimps who’ve been taught to sign. But on this phrase, we hang the world and its many promises.

As for the rest of life, it goes on. Family outings to the latest kids’ movie, a Baltimore Orioles game, a trip to the Virginia mountains, and everything humanly possible for Walt. The prospect that because of this insanity Walt will be denied any of his due is unthinkable, even if mandated by laws of time and space. The only defense is a strong offense—to show we are like other families, only more so. Every practice—he is starting hockey—playdate, birthday party, neighborhood fair, museum visit, parent-teacher conference, and PTA meeting is in the nondiscretionary category. Everything has to be, and will be, done.

Of course, in malls, movie theaters, and restaurants with Owen, we’re anything but typical. We draw stares. And sometimes it takes a while for folks to turn away. We’ve become experts on staring. With some disabled kids, it’s clear that they’re disabled—there’s some sort of physical manifestation. Owen, like his classmate Julian, looks typical. In fact, they’re both cute kids, with delicate features. So why is that curly-haired boy in the corner booth at the diner grunting, dropping silverware, shaking his head wildly, and spilling things? Clearly, he’s a very badly behaved boy. Maybe abusive parents.

Booths, especially in diners, are preferable, so we can keep Owen on the inside, in the nook between the wall and the tabletop jukebox. That way, no one can see him all that well—we can reduce the number of onlookers.

Walt notices every eye in the room. You can see that, as his self-awareness grows, it makes him uncomfortable. How can it not? Cornelia and I force ourselves to act like nothing is happening, nothing different, or noticeable.
No, he’s just talking to himself. Can we
please have some extra napkins to clean this up? Thank you, and the
check, please.

We see Walt panning the room for stares.
We’re just like everyone
else, Walt
. That’s our standard response. He looks at us like we’ve gone around the bend.

Cornelia is on the phone, sounding desperate to talk.

“What—is something wrong?”

“No,” she says. “He’s just doing it again—the movie talking.”