by Ron Suskind
“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 squeeze
d, 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?”
She’s keeping me up. It’s usually the other way around.
“Can we talk about this tomorrow?”
“Look, I have to get on this—this could change things.”
“It could,” I murmur. “It could.” She’s attacking the “social piece” head-on. Her concept is a weekly event, a social, something a few of the boys in Owen’s class would have on their schedules for every Thursday night, say, or Saturday afternoon. They’ll go bowling or catch a movie and pizza. The activities could change, the kids could decide, all together, and the parents would rotate as chaperones. If it was just four kids or five, it would be a once-a-month commitment for a parent. A group makes it special and with more kids there will be more avenues for interaction, opportunities to connect. With the holiday season upon us, there’s so much to do. the Washington Post is full of great activities.
The next morning, she’s revved and ready, working the class phone list, calling the moms.
A week later she’s sitting in the kitchen, wondering if her cell phone would break if she threw it. Must have been a dozen calls, at this point. It sure was a good idea. Everyone acknowledged that. Their kid will be so happy. Let me get back to you. And most of them did, laying out a few problems. Cornelia was sympathetic. They had lives like ours, with many of the moms and dads both working outside the home, and facing a full complement of stressors. Call by call, the brittleness of family life, with kids needing support—and the parents, too—became a theme. Every family was locked in a set of crafted rituals that they dare not break: when one parent drops a son off at therapy; when the other picks him up; a day reserved for a special family activity, an afternoon when he’s always tired, especially with some medication they’re just trying.
By this morning, she’s cut her hopes and losses, figuring if she could start with just Owen and one other kid, maybe it would grow. Social connections are about finding one’s level, a level of comfort or kinship, whether it’s the jocks finding their table, and the nerds finding theirs at a typical school, or kids in Owen’s realm who often will pair up with kids who match their capacity to engage. As his social skills were growing at Lab, he found some of that, building friendships with kids of similar, if slightly stronger, capabilities. He was rising to meet them. This is harder to find at Ivymount, a lifeboat to kids with a wide array of disabilities, many of them quite severe. But there’s one mom left to call, of a kid—Phillip—who Owen seems to like. He’s also one of the more able and interactive kids in the mix. This could be his match.
The mom has been away on business but is now back and taking the day off—and is in good spirits when Cornelia calls.
They seem to hit it off, which is encouraging, even if not all that surprising. After all, Cornelia cut her teeth on the mean streets of Fairfield, Connecticut, where Catholic dads—many of them commuting to Wall Street—filled large houses with broods of Matthews, Marks, Johns, and Marys; homes with eight, ten, or thirteen children, who ran freely, house to house, kitchen to kitchen, and then out across driveways and sidewalks to the trusty woods. It was a kid’s world. You learned how to get along.
And Cornelia did. She could tell a ribald story—voted Best Sense of Humor in her senior class, her social skills were admired and her manner—gentle, steady, and attentive—had built friendships to last up and down the East Coast.
But you live through your kids; a circumstance, here, that created acute distress for a woman who could always find a friend. Now she couldn’t beg, borrow, or steal one for her son.
She and this very nice mother, Helen, have been talking, all warm and willing, for fifteen minutes. Every subject is crossed, both telling their stories like seasoned pros—upbringing, college, husband, work, kids, and then the special-needs battles both families face. Their life is very much like ours, Cornelia thinks. Like Owen, Phillip has also mixed a bit into the mainstream and has one brother, too, a year younger. Helen says they wrestle with the same issues we do, of trying to find ways for the little brother to include Phillip, whenever possible, in groups of typical kids.
Cornelia lays out her original idea, runs through how it’s been a difficult week, and then drops her last card. Actually, throws it down with a laugh: “At this point, if someone just invited Owen over, I’d be happy.”
Helen pauses. “The problem is that the only night that’s possible, with our crazy schedule, is Friday.”
Cornelia cuts in, excitedly. “No, Friday’s a great night for Owen.”
Helen seems to regroup as Cornelia tries to close it. “You know, Helen, he’s always talking about Phillip.” Okay, he did one time, but close enough.
“No, and Phillip always talks about Owen. But as I was saying,” Helen continues, “Friday evening we always have a pizza party with Phillip, his little brother, and his brother’s friends.”
The line goes quiet for a few seconds. Cornelia’s on her knees, but she will not beg or speak the words forming in her tightening gut: “Would it kill you just to have him come over and eat pizza, just to sit with Phillip and his precious little brother, with his precious little oh-so-normal friends, and just be? He’s gentle as can be, he really is, he wouldn’t hurt anyone. And we’ll reciprocate, tenfold. For God’s sake, he just wants to have a friend.”
But, of course, she doesn’t say that—no one would.
And Helen shuts the door: “So that’s the problem, Cornelia. That one night is already taken.”
Cornelia’s not sure she can speak. But she does.
“Right, Helen. I understand.”
On an early March evening in 2004 I slip down into the basement and settle on the couch. I’ve started to spend more time down here with Owen, just the two of us, watching movies, talking about his sidekicks. It’s not so much for him.
I’m feeling some acute stress and this helps. Specifically, I’m under investigation by the U.S. government for supposedly making off with an unspecified number of classified documents among those nineteen thousand.
It’s been going on for nearly two months since Paul O’Neill and I were on 60 Minutes in early January, two days before The Price of Loyalty was published. On the show, they flashed the cover sheet from a classified packet from January 2001, the first National Security Council meeting of the Bush presidency. I didn’t have that document or any classified documents—they were all cleaned off the discs I received from O’Neill. But the cover sheets weren’t, and I used this cover sheet to discover that from his first weeks in office, long before 9/11, Bush was intent on finding any rationale to complete his father’s unfinished business and overthrow Hussein, including capturing Iraq’s oil fields. I told Leslie Stahl to make sure the broadcast noted I didn’t have the underlying classified packet. They didn’t. And the next morning an official from the U.S. Treasury Department called our house. He asked Cornelia if she was my wife (after some hesitation she acknowledged matrimony) and then told her that agents would be coming over to seize documents believed to be in my writer’s studio in the backyard.
The ten seconds it took him to explain all this was plenty of time for her to summon her “How dare you?” impulse—finely tuned from years with Owen—telling him that her husband was protected by the First Amendment and that “
no one will be coming to my house to seize anything.” But if he left his phone number, she’d be happy to find me and have me call him back.
She did find me—in mid-interview for a taped segment on NPR—and we talked for a few minutes about lawyers I might call. I did, and several five-hundred-dollar-an-hour Washington lawyers called the Treasury Department back by the end of business that January day, starting a legal battle that’s still raging by early March, when Owen and I settle in for a screening.
“Hey, buddy.”
“Hey, Dad.”
“Whatchya watching?”
“The Lion King—I love this movie.”
“And you know what it’s based on?” I ask.
“Hamlet!”
We’ve often talked of this movie’s roots and he likes getting that answer right. I think it’s because knowing what’s behind a movie that means so much to him is satisfying, in the same way he relishes trolling through the deep data of film credits—about the careers of James Earl Jones (the lion king, Mufasa) or Jeremy Irons (his villainous and fratricidal brother, Scar). Knowing this is Shakespeare with lions gets behind the wall of flickering light, where the makers of this thing he loves are hiding, winking at him.
Or maybe it’s just to please me. I like Owen to summon this Hamlet reference when friends—both Walt’s and ours—come by. He often has, almost always at my bidding. I want people to see him as smarter, and more able, than they might otherwise. I figure they’ll treat him then with more care, or interest, or respect, and that he’ll respond to that. It’s about binding him to what pretty much everyone in America north of early childhood is supposed to know. Because connecting him to all that, strand by strand, is my definition of self-awareness, and those who are not self-aware are swiftly identified and preyed upon.
