Life, Animated (9 page)

On the other side, we notice kids like Owen who are more “involved,” according to the nonjudgmental term of art, like the son of Owen’s psychiatrist, Dr. C. T. Gordon.

Gordon, who now sees Owen once a week, is one of a growing array of doctors who’ve found a specialty after discovering that their child was autistic. With the seeming growth in incidence of autism, there are now doctor-fathers and doctor-mothers across the medical landscape, rising—in part, from their relentless, night-and-day urgency to help a son or daughter—into leading roles in research and national debates. Gordon founded an organization that examines new treatments, claims of causation, and the latest scientific discoveries, and publishes those assessments in a journal of growing import. His son, Zack, has no speech—like many more involved autistic kids—and relies on a small device, a keyboard with a screen, on which, by age seven, he can type one hundred words a minute. His passion, though, is exactly like Owen’s: the Disney classics. He’s organized his viewings in vast, complex rotations and rituals, and derives inchoate joy from each session. Gordon’s view—like that of most professionals—is that this passion should be used as a tool, a reward, to encourage Zack to complete educational tasks and personal care goals he was otherwise resistant to undertake. Of course “Finish your homework before watching TV” is a common refrain in every household. But a typical child—the term of art is “neurotypical”—is able to discover and nourish interests much more broadly, more liberally, whether managing to find something provocative in that night’s homework, or seeking the joy, and affirmation, of bringing home the “A” on a test. With the autistic kids, their interest, say, in the desired video is deep and maybe unquenchable; their interest in so much else, often very faint. Left to their own devices, the thinking goes, they would slip into their chosen area, to the exclusion of all else. For some kids, their affinity is for train schedules; for others it’s maps. Or, in the case of Owen and Zack—and we’re certain, many others—it’s Disney movies.

Don’t cut it off, Gordon suggests. Control it. Use videos as a reward, to be viewed at a designated time if certain things are done. And
no rewinding
, which Gordon feels just deepens the perseveration, like a wheel in a ditch. That’s what he did with Zack. Scheduled viewings and no rewind button: the videos were important, largely as a motivational tool.

We’re already placing some controls on viewing. Now we add to them. We set up a point system at school, a behavioral technique, where he can pick up points for appropriate behavior—listening to the teacher, attending to his work. Enough points meant a video that night. Some nights, there are not enough points. Sorry. No video.

There are modest improvements in his behavior at school—nothing dramatic—but after two successive days of no-video edicts, Cornelia is awakened in the middle of the night.

She jostles me out of a deep sleep. “I definitely heard something downstairs.” I check the clock. It’s three
A.M.
Five minutes later, baseball bat in hand, I meet Owen in the basement. He’d settled in for a movie marathon.

He’s profuse in his apologies. He says he won’t do it again. But, a few days later, we see clues in the morning. He’s just gotten better at covering his tracks.

Soon, the house slips into low-grade guerilla war—a hearts and minds struggle that draws from us decidedly mixed feelings. It’s like we’re cutting off his supply lines. School is hard and stressful. His release, his refuge, is being cut off.

Cornelia calls me one morning as she’s driving him to school. Owen is snoring away. What’s the point of bringing him to school, she asks. We need to bring in heavy weapons. After work, I stop by the hardware store.

That night, we all gather in the basement to discuss the new house rules. I’ve padlocked the cabinet that holds the big TV. I hold the key, like a federal marshal.

“Mom and I will hold this one key. There will be no other.”

Disney is now a controlled substance.

T
he concept is a massive redirect.

With TV now limited inside the house, with us trying to help Owen control his passions and impulses, we need to channel the animated river toward school. Lab speaks endlessly about its arts-based learning. Let’s see if they can harness Owen’s self-directed learning, just as we’ve been doing in the basement and, now, everywhere. All we do is act out scenes; drama is one of Lab School’s specialties.

Of course, the self-directed part makes it all a bit more complicated. We have to be guided by whatever Owen is
into
. As the fall of 1999 turns to winter of 2000, he isn’t into just any Disney movie. He’s deeply besotted with
Song of the South
.

It was trouble when it was released in 1946. And that was before the civil rights movement.

After its debut,
Time
magazine wrote that the movie’s rendition of race relations in the years just following the Civil War was “bound to land its maker in hot water.” It did. Activists picketed movie theaters with signs saying it was “an Insult to Negro people.” No doubt it was to some. It also won the Academy Award for Best Original Song for “Zip-A-Dee-Doo-Dah.”

Oh, America.

Owen loves the song. It plays continuously inside Splash Mountain at Walt Disney World, his first high-intensity ride with a long rollercoaster-style drop at the end. Fear and joy fused together, and everything was “satisfactual.” He’s now starting to use the computer, and finds a clip of Uncle Remus singing the song. It’s among the first attempts at live action blended with animation—with the bluebirds flying around the smiling Remus. That combo—a live-action actor with animated characters swirling around his head—is pretty much Owen’s life, his particular
context
.

Our seeing things through the lens of context is the great breakthrough of this time: seeing that, yes, he is disastrously context blind about the noisy, shifting, dodge-and-fake world of fast-fire human interaction, and understanding—as he becomes more active—what it really means to live a decontextualized life. Among the many things you are oblivious to are advertisements during commercial breaks, in magazines, on billboards, in shopping mall toy stores, and what they are all saying you just
can’t live without
. The constant buzzing bombardment—resulting in incessant “Please, please buy this for me,” or, for that matter, a consumer culture based on ever-escalating wants becoming needs—simply bounce off of him.

But, in his chosen area, he’s context-deep. All he wants comes from that deep well. And the video of
Song of the South
tops this year’s wish list for Hanukkah and Christmas.

Soon, “Santa” is locked in eBay hell.

The movie has, of course, not worn well. Recognizing this, the company never released it on video in the United States.

But, in this early chapter of connectivity called the World Wide Web, it can be found. It’s had limited release in some other countries, like Japan and the U.K., which is where we find a copy to bid on. We really didn’t want to know who’s on the other side of the transaction. All we know is that someone in England made a hundred dollars and we, soon, are looking at a box with Uncle Remus and those bluebirds smiling at us.

It’s unplayable. The United Kingdom, we discover, uses a different video format from the United States. It needs to be converted. I’m doing some work as a guest correspondent on ABC’s
Nightline
, with Ted Koppel, and know video editors at the network. Even they couldn’t manage it, but they know of a video production house that can. And only four hundred dollars!

So, as the new year approaches, we settle into the basement to begin to watch a five-hundred-dollar video. The kindly Uncle Remus is basically set up—with possibly horrific consequences in the Reconstructionist South—by some vindictive white kids. At that point, I’m regularly appearing on panels and doing speeches as a white guy who “gets race.” But that’s aboveground. Inside the house, we’re living inside a collection of Disney movies. In this case, one selected by an eight-year-old who is oblivious—often blissfully—to history, culture, social codes, and accepted customs outside his wonderful—and safe—world of Disney films. Even as a sixth grader, Walt knows more than enough to be mortified. Basically, he watches the movie shaking his head and saying, “Oh, my God.” When the movie ends, we try to explain to Owen why some people don’t like this movie. It’s hard to know where to start. “Remember when Jafar, as the Genie, put Aladdin in chains…” After a few minutes, he says, “Can we sing now?”

So we join hands—Cornelia, Walt, and I, shrugging in resignation—for a rousing chorus of “Zip-A-Dee-Doo-Dah.”

His fixation on the film is a tough turn for our massive-redirect strategy, but we get some lucky breaks: his teacher, Jennifer, had been his assistant teacher for the past two years and bonded with him, often putting Owen on her lap to calm his self-stimming; and the Br’er Rabbit tales have a long history among folk traditions of Africans that predates Disney.

It’s just enough wiggle room. Jennifer takes charge, calling us often for strategies on how to manage Owen and pull this off. By the spring of 2000, there are regular practices of the play and props being created in art class. With Jennifer’s guidance, Owen is the casting director, placing kids in various roles—Br’er Bear or Br’er Fox—that seem to fit with their looks or personality. Owen, knowing the long rendition of dialogue of Br’er Rabbit’s battle with the tar baby, is the lead.

On a mid-April Tuesday, kids, parents, and teachers gather inside the Lab School’s black box theater, modeled faithfully on the experimental theaters of New York. No one in the room knows what an edgy experiment it is for Cornelia and me: our double lives are becoming one. Disney Club is going public.

Owen doesn’t disappoint. He’s immediately in character. Of course, he’s in character all the time. That means knowing his lines is not a problem, talking to the pot of tar—“What’s the matter with you? I said, ‘Howdy!’”—as he gets one arm stuck, then the other, then his legs, and finally his head, talking all the while and drawing laughs and nods from the audience. “How often has he practiced that?” a mom next to Cornelia whispers to her. “If only you knew…” she whispers to herself. It’s exactly the way it is in the movie, every movement and syllable.

It’s strange to watch him do this in public. It’s his first performance—if you can really call it that. Not that he’s particularly attentive to the audience. Most kids are looking for their parents—one eye on the crowd, and its reaction, as they go through their lines. He’s not. But he’s mindful of the other kids, and we know it’s because they’re also doing dialogue that mostly comports with the movie. When they stray from it, so does he.

Mostly it holds together, with the other actors playing their roles, if more interpretively and not quite as precisely. What we’ve been doing in the basement he’s now doing with other kids. This, after all, is the dream. We feel a wild aspirational uplift, and at the same time recognize how difficult it was to construct: this was months in the making.

But it’s a victory won. At the end, they all bow together, hands joined, as the applause washes over them. Owen is not the straggler, struggling to keep up, not this time. And—as other parents applaud as lustily for their kids as we do for him—Cornelia and I realize that is all we really want: for him just to be in the mix.

The show is followed by a reception for the visiting parents, and we mingle, warmed in the glow of this victory, this momentary easing of our concerns. The parents are all very nice. But after three years at this school, we aren’t really friendly with many of them—a result so different from the many friendships we’ve so readily forged with the parents of Walt’s friends and the so-called “neurotypical” kids at Owen’s previous school, even though those children were not nearly as inclined to be a friend to Owen—a genuine friend—as were his current classmates.

As the years pass, we hold tightly, fiercely even, to carefully vetted locations and inhabitants on the continent of normal. We stick by old friends and bond with new ones, who are what might be called “context-astute.” They tend toward the eclectic and searching, questioning types, rather than the dug-in and reflexively certain. And if they don’t “get Owen,” if they are unsettled or impatient or dismissive of him, it was like a trapdoor. They are gone.

But for the core group—a dozen or so families who were in the club—it is the opposite. Their familiarity with Owen, his habits, his rhythms, have grown across years. The fact that many of them were from Boston and know him from before the sudden change at two and a half places them in a mindset we still secretly embrace: of the old Owen, being trapped in some sort of neurological prison, someday to emerge. The attentiveness, both of these parents and their children, allows our quartet to move among them with ease and comfort. Walt has created lasting bonds with the other kids, we with the parents, and Owen takes on a role—much like he has within Cornelia’s extended family and mine—as the one kid in the mix whose demonstrable differences prompt a kind of generalized search for the special, the particular, the unique. Other people’s children, who stand by him and nose around for a way to look inside and then draw him out, are embraced as heroes. They usually know the path inside was Disney. And Owen loves their entreaties, even if it was sometimes difficult to express his excitement.

Which was precisely the dilemma: the children with those heightened interpretive skills will eventually need a tenor of reciprocity that Owen has trouble providing if they are ever to develop a bond of true, mutual friendship.

On a fall day in 2000, four families of our oldest friends meet at a working farm in Rochester, Vermont.

This is the eighth year we’ve been meeting here at Liberty Hill Farm for a long weekend of hikes and hayrides, brilliant home cooking, and shared appreciation that none of us have to work anywhere near as hard as Bob, the dairy farmer, or his wife, Beth.

And an appreciation of
story
. It’s not just that we all tell stories of what was going on in our lives. We’ve created a game. Tonight, like every night at the farm, twelve eager kids, including our two, gather in an upstairs bedroom. It’s about time for lights out. And everyone, by now, knows the drill. I go around the room as each child names a favorite character from any book or movie or TV show, and each does, with Owen offering a Disney character, as usual: Sebastian from
The Little Mermaid.
I invent a story, getting Owen’s Disney character in at the start—to keep his attention. The other kids, with the traditional capacities for anticipation and focus, listen intently, waiting for their character to appear…“and then Sebastian and Madeleine met the Tin Man!” The story builds, as the characters undulate along, a growing band, cresting toward a finale, which tonight, as usual, involves one invented character, a baby with an exploding diaper being toted along by the band. With kids this age, potty humor always works.

Each character, of course, is the avatar for its child/patron. I mix them, just as I hope the kids will mix, with Owen’s character—his avatar—always right in the thick of it. The characters couldn’t be much more different—a crab, a little French girl, a woodsman of rusted tin. But they stumble forward, feeling their way, relying on each other, moving as one.

That’s the story I want to tell. The one I want to be true.

Sally Smith is also telling a story she wants to be true.

I’m there to help her.

She’d pulled Cornelia and me onto the gala committee in our first days at the school. As journalists, we were good at getting phone numbers and breaking through the protective webs around the powerful or celebrated. With Cornelia’s plate full, this was more my job. Smith and I bonded. We had many meetings each year about the gala, which became a passion—some might say, an obsession—for Sally.

We swapped lists of possible learning-disabled achievers—a mention in a news story about difficulties in school, a tip from someone who knew someone—and I’d often make the call. In 1998, I worked the phones to get Rene Russo, who couldn’t make the gala. We defaulted to Vince Vaughn, then an up-and-coming star.

On the day of the gala, we’d usually have the honorees visit the school and then attend a luncheon with big contributors, which is where, over the years, I saw a subtle tension in this equation of perception and reality as they gazed across classrooms with students who bore little resemblance to what they were like as children.

At the luncheon atop the Mayflower Hotel, Vince Vaughn asked me about my son. I just said it outright—“He’s autistic.” Vaughn, a very tall and gentle guy who had mild LD issues, looked at me quizzically. “Are there a lot of autistic kids at the school?” he asked.

Of course, there weren’t, and there were fewer each year. Which may be why I’d just said
autistic
—one of the first times I did. The game of labels—PDD-NOS, classic autism, Asperger’s—was one we’d grown tired of playing.

The great gala—a signature night in the nation’s capital—has worked all too well. The school is being overrun with LD kids from moneyed Washington families or folks who moved to DC for Lab. Clear away the clouds of dyslexia or ADD, and many are off to good colleges; outcomes that easily advertise the school’s effectiveness, even if it is largely due to the much shorter distance for the children to travel.