by Ron Suskind
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 C
ar. 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.”
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 f
irst 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!
