Life, Animated (13 page)

Now, looking back, I wish I hadn’t. But that still leaves the matter of what exactly happened that night at dinner. The last thing I’d ever want to do is sentimentalize my own son. I tossed in bed that night trying to settle what I saw that was indisputable and fact based. On a night when the nation, and much of the world, is gripped with tension—an anxiety we’re sure Owen could feel, even if he didn’t understand all its particulars—we asked him to say a little something. Maybe what’s missing in him, the reasonable doubts and common hesitations, allows him to look upward, unfettered, in a way that focuses some invisible capacities. After all, it’s a big deal to talk to God, if you believe he can actually hear you. All of this I think about, walking the floors as dawn approaches, wondering how it’s possible, after all of our efforts, that just about the most cogent and heartfelt thing my son has ever uttered was to a deity I didn’t much believe in.

Cornelia and I have not slept well for years. And we’re still not, but the quality of the insomnia has changed. It’s more like the way we didn’t sleep after the kids were born, when the newness of it all, of a new life, screaming its presence, revealing itself, made us press ourselves and each other to stay awake.

Owen is making some kind of move, here, with the sidekicks. The lines keep running through my head. I think about them when I wake in the morning. Cornelia and I talk about them that night.

There’s no doubt, now, that he sees what we see: that kids of all stripes—typical kids, his old classmates at Lab School, are moving on, while he’s left behind. He chooses the Earthworm as his character and then the sidekicks emerge, sketch by sketch, in the difficult months after he’s ejected from Lab. His response is to embrace it, the pain of it, and be a protector of the discarded. Of course, that was my job, mine and Cornelia’s, to protect him against judgment and loss, to ease him forward into a warm bath of a life, as independent as possible, on terms we would do our best to set. That was bound to fail at some point. I suppose we knew that. What choice, though, did we have, walking around as he does, without the protective skin of social instinct or acuity, his heart so utterly and perilously exposed.

Exposed, yes, but beating in ways we suddenly can see. He starts giving sidekick identities to his classmates at Ivymount, so many of whom are so heavily burdened—some with physical infirmities and plenty of autistic kids with little speech. But they have qualities that he’s identifying—this one was loyal, that one gentle, another one silly in some lighthearted way that makes Owen laugh. Instantaneously, he races across the pantheon of sidekicks and, for each of them, finds a match.

The heroes in many fables tend to be flat, constructed with a sort of solid, accessible simplicity that allows readers or viewers to hop aboard to travel the hero’s journey. As well, it’s often the supporting players in these fables who are more varied and vivid. Even in the earliest Disney movies, the first sidekicks—Goofy, Pluto, and then Donald—often carried confusions, frailties, foolishness, pride, vanity, and hard-won, often reluctantly learned, insights. The spectrum of complex human emotions is housed with the sidekicks.

There are hundreds of them in Disney. Every hero has sidekicks, usually several of them. Some are goofy, or dim-witted; some comical, some resourceful. There are protective ones, loving ones, wise ones.

Owen has become an aficionado. We can barely keep up. In the carpeted cavern downstairs, he seems to be developing a vocabulary, using the sidekicks, through which he can organize his emotions.

Including, what he feels for us. On Cornelia’s birthday in late February, he draws her a picture of Big Mama—the owl from
The Fox
and the Hound
, who takes in the orphaned red fox, Tod—because, Owen tells her, handing her his card, “She is the gentlest and most caring of all the lady sidekicks.”

For Father’s Day in June, he gives me a drawing of Merlin, next to which he wrote, “You are the best Dad I could ever have. Thank you for being so guideful.” I tell him I love it, of course, and that I’m honored to be among the wisest sidekicks, Merlin. But “guideful” is not really a word. What does it mean?

“A sidekick who is a loving and a careful guide.” He doesn’t care if it’s not a word. In his language, it now is.

In September, on the day of Walt’s fifteenth birthday, he draws Aladdin and writes, “To the greatest brother I ever had.” By now, sketchbooks are piled high—hundreds of drawings—but this is the only hero he’s drawn, this one picture. He so often watches his brother, intently, from the corner of his eye: Walt with his gang of friends, moving in and out of the house; in his football uniform, muddy, after a game on Sidwell’s junior high team; talking on the phone to what might be a girl.

A few days after his birthday, Walt takes a break from homework to catch a little
Dumbo
in the basement, wanting Owen to fast-forward until the end when the little elephant, learning to spread those giant ears like wings, soars across the big top, firing peanuts at the cruel elephants, proud and vain, who’d ostracized him. Walt always liked this part. “Certainly gives it back to those nasty elephants in the end, huh, Owie?” And Owen laughs—“Yeah, Walter, Dumbo flies.”

“Those elephants really deserve it, don’t they?”

“I don’t know—do they?”

In many ways, the only other boy Owen really knows, and knows well, is his brother. He’s his only model.

And Walt is drawn as the hero. Owen, who wields the pencil, has told us—in no uncertain terms—that he, himself, lives among the sidekicks.

Cornelia slips into Owen’s bedroom and retrieves his backpack, turning the knob before she gently closes the door so as not to wake him. Walt’s already crashed. It’s autumn 2003, football season, and with afternoon practice, he’s exhausted following a long night of homework. She’s spending a lot of time alone, with me all but living in the converted garage behind the house—and distracted when I’m not—with thousands of internal government documents swimming in my head. I have to work like a madman, especially with a book deadline looming.

Sitting on the stairs, she pulls Owen’s binder from the backpack and opens to the color-coded insert for math. It’s simple addition, two plus two—math that he did three years ago at Lab. She flips to reading. Same thing. The most basic stuff—the cat runs, the dog sits. God knows, he worked hard, back when, to master this level of material and move beyond it. Going backward—which is what he’s doing—is a sin. She thinks about Sally Smith and what she’d say to her if they met on the street. If only.

In a compartment next to the dispiriting academic binder is a modest and cherished counterpoint—his piano book. He’s begun taking lessons once a week from Ivymount’s sixty-something music teacher, Ruthlee, at her home. He’s making steady progress and, in a way, so are we. About a dozen children and adults with special needs crowded into her basement a few times a year for recitals—we’ve just been to our first—and we left the room subtly altered. The students are about one-third Down syndrome, two-thirds spectrum, with a few other disabilities mixed in. Many managed extraordinarily well. Watching a forty-year-old woman with Down syndrome—a twenty-five-year student of Adler—tap out notes, after what you know are countless hours of toil, was a soul-shaping experience, capped by the moment the student stood unevenly and bowed, as everyone applauded themselves raw, led by her mother, just about Ruthlee’s age.

Maybe this doesn’t draw such powerful emotions from everyone. But it does for Cornelia and me. And it’s not because we pity her, or her mother, who must remain in a mother’s role for her long life. We know better—bonds of love are not to be pitied. It has to do with how each perfectly arrayed note once scribbled by Mozart, Beethoven, Chopin—or infectious pop song celebrating love, hummed by all—is offered, faithfully, unflinchingly, by someone who must live so much of their life defined by some visible and enveloping imperfection. We all work so hard to present ourselves as perfect, win laurels, and rise above those who cannot. It is our nature but one we might rise above. Or so it felt as twelve or thirteen such performances—including Owen playing a piece and usually belting out one of his Disney anthems—were haltingly mustered, with each performer feeling, as the applause washed across them, like a creature of indisputable perfection. At some point, I whispered to Cornelia, “If there’s a God, he’s in this room.”

In the half-light, Cornelia flips through the piano book of songs he’s learned to play, a feat she never could have imagined years back. In her head, she can almost hear him tapping out these songs. This rises. His academic work falls.
Aren’t music and math handled by the
same part of the brain?
It makes no sense. She shoves all the books back into his pack.

The next afternoon, a Wednesday in late September she pulls into the parking lot of an office tucked behind a commercial strip in Kensington, Maryland, just north of DC. Owen gets tutored once a week here by an educational specialist, Suzie Blattner, who has been working with him since he was three.

Cornelia and Suzie are in a sisterly relationship, eight years along. She’s seen every stage, every twist, looking at what’s being assigned in school—what’s in his backpack—and walking Owen through it, turning the written equations or mysterious words into something visual, or vivid; the symbolic and theoretical made real. As impor-tant as anything is knowing how to keep him focused, on task. “Look at me, Owen—look in my eyes.” Suzie has said that a thousand times.

At this week’s session, Cornelia gives Owen a few extra minutes in the waiting room; tells him she’ll be right back.

“Suzie, we’re going backward,” she says a moment later, dropping low into a kid-sized chair. Suzie sits down across from her as they slide worksheets across a table built for kindergartners. Suzie knows he’s lost ground and figured Cornelia would eventually be here, ready again to sound the battle cry.

“Why did we fight so hard to get him into Lab and to keep him there,” Cornelia says, “just to have him lose it all now?” Suzie knows Cornelia was battered by the ouster from Lab and thankful Ivymount took him back. But a year has passed. It’s time.

“I can only be with him an hour or two a week, maybe add another session,” Suzie says, pushing aside the worksheets. She says it’s not that they don’t focus on academics where he is. It’s just at a lower level. Their emphasis, for obvious reasons, is tilted more toward building up the basics of social interaction.

Both already know this, and they sit quietly. In the typical world, parents grow close to, say, a pediatrician they see once every six months. Cornelia has been seeing Suzie once a week since Clinton’s first term. At this point, the two of them can communicate quite ably without words.

Cornelia rises to go fetch Owen. “A lot more could be done for Owen, too—on the
‘social piece.’
”

Social interaction is not usually viewed as a
piece
of anything. Everything sits within it. Typical people interact as a matter of desire and inclination. They’re shy or gregarious, some love solitude or can’t bear it. They engage, or don’t, as they wish or are able to.

That’s a difficult nature/nurture line to draw for anyone. But for Cornelia the turf between will and capability, between the learned and the innate, is quicksand. Owen’s sensory equipment may be so out of sync that he can’t interact even if he wanted to. And that disability may so strongly diminish the joy of human interaction that he has little will or desire to reach out and build those capacities. If, in fact, they can be built. And around you go—trying anything.

Which is why Cornelia crosses the hall from Suzie’s office to reschedule an appointment with Christine Sproat, Owen’s longtime occupational therapist who deals with the complex issues of sensory processing—namely, the way your body and brain organizes input through the various senses. New ways to study this quietly took hold in the 1970s but received a boost in the mid-1990s with the growing notoriety of Temple Grandin, the autistic author. Grandin, born in 1947 and diagnosed with autism in the early 1950s, developed in her teen years something she called a “squeeze machine”—a sort of heavily padded coffin with levers to apply pressure. The simultaneous pressure on all parts of her body made her feel settled and organized, as though her disconnected senses were pulled into integration, allowing her to more successfully go about her day. In best-selling books, Grandin’s acute descriptions of the hypersensitivities she’s long lived with—as well as techniques, like the machine, that have helped her navigate daily life—changed the landscape. People could now understand what autistics couldn’t generally describe:
what it feels like.
Beyond the value of public understanding, it helped create many offices like the one in which Cornelia is now standing. It’s filled with strange swings, fabric-covered boards, balls to throw or roll on, beams to walk across.

Christine Sproat, an energetic young occupational therapist, says she had a cancellation and can fit Owen in after he’s finished getting tutored by Suzie. There’s nothing new about OT, which broadens out physical therapy to focus on specific goals and include interactions with the surrounding environment. The recent growth comes from what parents and therapists noticed about autistic kids: that they were more socially available and interactive after they were squeezed, like Grandin and her machine, or spun, like a whirligig. Even after many studies, it’s not all that clear why this seems to be effective—just as it’s not completely clear, neurologically, why people feel certain ways after strenuous exercise—or why it seems to build underlying capacities for the senses to better integrate.

But we do it because it works. And after Suzie, Cornelia watches Owen go through his exercises, working hard on the equipment, and laughing with the ebullient Christine—like he should be with a gang of buddies—and thinks: “This kid needs some friends.”

“We can get a turnout for birthday parties, because they’re an event—someone’s birthday—and clubs at school have weekly meetings,” Cornelia says, leaning against the kitchen counter. “So what if we merge them?”