by Ron Suskind
So, for the last two weeks of the summer Owen returns to camp with Frank—a high school senior who was one of the Boston kids we see each fall at that Vermont dairy farm. The two boys have known each other since they were little kids. Frank knows all of Owen’s moves, movies, and passions.
The first week is fine—Frank follows Owen around keeping him on task. It’s like he has a private counselor and cruise director. He pushes Owen along through sports and arts and crafts, and facilitates conversations with bunkmates, especially cueing Owen to do voices, like Mr. Burns and Smithers from The Simpsons, which other kids love. In the finale of a camp-wide relay race, an obstacle course, counselors carry campers—usually the smallest kid in each bunk—the last few hundred yards across the finish line. Owen gets that slot, and Frank—a big guy, Owen in his arms—brings victory to the cabin. He later tells us: “I’ve never run so fast as when I carried Owen.” Cornelia and I laugh for days over this: the story of our lives.
But Frank won’t be able to carry Owen for the main activity of the final week—a talent show that all the kids are exhaustively preparing for. He asks Owen if he knows what he wants to do. Owen says he does—he’s going to sing a song. That’s all. Does he need any musical accompaniment? Nope. Frank asks about a hundred times for more details. None forthcoming, not even what song. Fellow counselors are wondering, concerned. The other kids are all practicing. The shows, skits, musical offerings are due to be elaborate, as would be expected at a camp for the “gifted and artistic.” Frank only tells them, “He just says he’s going to sing some song.”
After the session’s final dinner—and before the closing campfire—about 150 kids, counselors, and staff gather in a large, corrugated-steel rec center with a wide stage. Owen’s sitting next to Frank and the kids in his cabin, dead center in the thick of the crowd, all T-shirts and crossed legs. Two-thirds of the way along, the stage director walks over with her clipboard, motioning to Frank. “Owen, you’re up.”
A minute later, he’s on the stage, mike in hand, looking out at the sea of campers.
Inhibitions are reasonable things. No one wants to show themselves to those who won’t be appreciative. No one wants to be embarrassed, or ridiculed, or fall flat on a stage. Owen’s brain doesn’t work that way. In a way, it’s a cleaner transaction. The feeling comes or it doesn’t. When it does, he seizes it.
And that’s what he’s doing, trying to summon it, as his eyes, scanning for patterns, examine the throng of faces, some of which are now slipping into “uh-oh” anticipation that a stage-fright debacle is unfolding, with the weird kid who talks to himself. But whatever his eyes scan as the seconds tick by, they’re also looking inward to the place where about the same number of characters—a community of about 150 or so, sidekicks mostly—live alongside some adult-strength realizations about isolation and loss. If it works, these two communities will connect.
He finally brings the mike to his lips.
Once we cross that far horizon,
Life is bound to be surprisin’
But we’ll take it day by day.
Of course, it’s “Wherever the Trail May Lead”—his theme song for this difficult summer—which he now sings as a torch song, a revival. Belts it out like there’s no tomorrow. And for him, there really isn’t. Being unfettered in this way, living so fully in the present, is one of the flip sides of “context blind.”
To a camp of arts kids—each a hothouse flower of some talent or another, thinking incessantly of blazing tomorrows of stardom and whether they’ll be the one who makes it—he looks courageous, free.
And halfway through they’re up and whooping, on the way to a standing ovation.
They don’t know what he’s been through. He wouldn’t be able to tell them if they asked. But the deep bow he takes, as cheers wash over him, is, itself, a novella.
Cornelia walks up the stairs to check that both kids are asleep before she ascends to our third-floor bedroom and turns on the lights. I can see the soft, yellowish glow through the skylights of my backyard office. I watch for it—we’ve discussed this in advance—and head over to the house and head upstairs. We talk in whispers so the kids can’t overhear us. Seems wrong to talk about this in any other way.
The fall has been a difficult one for her sister, Lizzy, who’s battling a particularly virulent type of breast cancer. Cornelia has traveled from Washington to Connecticut several weekends in September and October.
Lizzy is the single sister—the one, among five girls and three boys—who never married. But she’s also been a jaunty, world-wise aunt for all of our kids, twelve cousins in all, generally ranging in age from mid-teens on down.
And none of the kids know all that much, just that Lizzy has been sick for about a year, but she’s fighting it.
Certainly, there’s plenty of signaling that goes on, like when Lizzy was called to the bima near the end of the bar mitzvah service to read a passage of Khalil Gibran, which she prefaced—looking firmly at Owen from the podium in her blue dress and brown wig—with: “Owen, you are a model of perseverance for me…and for that I thank you.”
Mostly, though, things are not said—even among the adults. Because what is there to say? Lizzy’s drawn from a tough lineage; you could all but see her managing potato diggers on the rocky Irish coast. She asks for nothing. Never has. She’s seeing the best doctors. She’s fighting it.
Over the past decade of visits to befuddled autism doctors with their best-case predictions, Cornelia’s tolerance for protective hopefulness has steadily eroded.
She has worked hard to see things as they are; not as she hopes they might be. I’m able to do that in my work. In my life, not so easy.
We sit on the bed in a dim light. “I don’t think she’s going to make it through the weekend,” Cornelia says, now all cried out and matter-of-fact. “I need to be there.” I stroke her head as she falls into sleep.
Late the next afternoon, Friday, she quietly gathers a few things in a small suitcase, grabs her purse and phone. We hug in the foyer. I tell her to send my love to her sister. She says I should just tell the kids that she’s gone to see Lizzy and that she’ll call. As she opens the door, we hear someone bounding down the steps.
A moment later, Owen is standing in the foyer, a CD in his hand.
It’s his most precious possession—the soundtrack to Home on the Range.
He hands it to Cornelia. “Play her song six. Tell her it’s from me.”
Lizzy, a social worker, is in her apartment in Bridgeport. Nurses and family members are coming and going. But now it’s just she and Cornelia, who has settled in. Lizzy’s just forty-nine. For years, she and Cornelia, one slot behind her in the birth order, shared a bedroom. Now they’re sharing one again.
And Cornelia is there to boost Lizzy as her strength ebbs away. Exhaustion is overwhelming her, like the crush of heavy waves. She hugs her little sister, the fear and uncertainty finally overwhelming her. “I’m not sure how I’m supposed to feel,” she tearfully tells Cornelia.
Right to the end, the supposed tos tug at her, like they do all of us.
The sisters cry for a time, and then Cornelia tells her that Owen sent something for her.
Lizzy lays back in bed as Cornelia puts in the CD. “He told me to play this song for you.”
The song washes over them both:
Yeah, there’s a long road before us,
And it’s a hard road, indeed.
But, darlin’, I vow,
We’ll get through somehow,
Wherever the trail may lead.
Can’t tell you when we’ll be there—
It may take all our lives.
We’re headin’ for that great unknown.
We’ll soon be walkin’ free there,
But ’til that day arrives,
At least we won’t be travelin’ alone.…
And there’s a long road before us,
And it’s a hard road, indeed.
But, darlin’, don’
t fear,
’Cause I’ll be right here,
To give you the strength you need…
And through the whole ride,
I’ll be by your side,
Wherever the trail may lead.
Lizzy listens to the song, sent urgently by someone with no idea what he’s supposed to feel either, and heaves up sobs, a release from burdens.
“Tell Owie thanks,” she whispers to Cornelia. “He’s always been my angel.”
A few minutes later, she drifts into a sleep, which soon deepens into a coma. She never really awakens. In two days, she’s gone.
On the Monday after the funeral, Cornelia tells Owen to pack his book bag and bundle up. It’s early November and they begin their morning walk, about half a mile, to a Baptist church near Chevy Chase Circle.
There’s a room in the church basement that wasn’t being used. Cornelia rented it for five hundred dollars a month, with the proviso that she could paint it.
Walt is now a tenth grader at Washington’s Sidwell Friends School. He and a buddy from Sidwell, spend a Saturday painting the cinder blocks to Owen’s specifications.
Dr. Dan Griffin, a PhD psychologist we’ve added to the team, suggests that Owen name it.
He did. So on this morning, like every morning since early September, they hang their coats on hooks in a small room—ten by sixteen with a single window—now officially called Patch of Heaven School.
A school to try to teach one hard-to-teach boy—run by his mother. If we needed any more proof—a final nudge—the summer provided it. It is now overwhelming and indisputable: Our son has turned his affinity for animated movies, mostly Disney, into a language to shape his identity and access emotions that are untouchable and unmanageable for most teenagers, and even adults. But he’ll have to go further to learn basic skills—reading, math, general knowledge, how to listen and respond—if he is to make it to a high school that can usher him forward. To attempt that, we’ll have to work with, around, and through his enveloping passion for those beloved movies. The question has finally been called: exactly how much can you learn—about what’s real, in the real world—from a Disney movie?
Cornelia and Owen settle among the freshly painted cinder blocks to search for an answer.
Owen looks at the picture he drew of Iago, taped securely on the face of his gray metal locker, and feels the parrot’s voice run through him.
He has developed secrets about Iago. Only he knows them. It’s the fall of 2005, a year into the experiment called Patch of Heaven School—and a secret world is taking shape inside of him. But it’s only for him.
Owen makes the Iago scrunch face and murmurs, “Okay, okay, now listen, Jafar,” under his breath, though he’s barely making a sound.
“No self-talk, Owen—all talk is part of conversation,” Cornelia says, hanging her coat in a locker—her locker—adorned with a picture Owen drew of Big Mama from The Fox and the Hound. “If you want to talk about Iago, let’s talk together about him.”
He looks at her, trying to make up his mind. “No, I’m okay,” Owen says. And then he plops down onto the navy sofa, next to a blond-wood desk and file cabinet, on top of a French blue carpet with a white swirl design, all of which Cornelia picked up in a buying spree the previous fall at Ikea.
When she bought her L-shaped teacher’s desk at The Container Store, she saw them: two lockers being used as props in a back-to-school display. She begged the sales clerk for the items. “Sorry ma’am, those are not for sale,” the clerk responded. Cornelia persisted, calling every few days for a month until they relented.
The two five-foot-tall, standard-issue school lockers are now her key props in making this feel like a real school, instead of just a place Owen goes every day with his mother.
After a year, many moving parts, assembled piece by piece, are in place to preserve this spell. From the dry-erase board to her demeanor, Cornelia does her best to hang the role of mother on the hook every day. Once they’re in the room, she assumes a tone and focus that is noticeably different from what Owen sees in the kitchen. She needs to be caring but demanding, not available for fun, unless otherwise noted, but quite interested in results, and ready to allow Owen to sometimes struggle to find an answer. In short: teacher.
But not one who looks befuddled or impatient when Owen does what he’s long done—which is become distracted and inattentive in somewhere between one and two minutes and turn to self-talking. Depending on which chair you inhabit, she’s either a dream or nightmare: a teacher who sees all and knows all—as only a mother can—who is on top of the student, her one and only student, every minute of every day.
This one-on-one intensity happens to be what works best with kids on the autism spectrum, whether it’s Lovaas-style behavioral training—which has recently been borne out by research—or Greenspan’s hyper-interested and encouraging Floortime. Cornelia mixes them together. There are, no doubt, rewards for good behavior and completed tasks. There is also intense, enthusiastic focus on how Owen sees what’s before him on the lesson plan, as well as interest in his many tangents—if, that is, they relate to the things that must be learned.
Because that’s what they’re here for: to master what must be learned to get into a Rockville, Maryland, high school that we’ve been eyeballing for students with special needs. He has a ways yet to travel to be ready for that school, but his progress, after a year of homeschooling, has been surprisingly good. And while Cornelia is ready to do anything to achieve this goal, she’s trying to be mindful of not letting this effort damage the only thing that ranks above it: the mother and son relationship. This kind of in-your-face exposure, every day, could do that. So, she keeps things moving—lots of field trips and an array of surrogates and specialists are all now part of the curriculum.
On the schedule for today—Monday, September 12, 2005—there’s a midday visit to the Smithsonian’s Museum of Natural History in Washington, DC, then an afternoon visit to Dr. Dan Griffin, Owen’s innovative play therapist. Tomorrow at eleven, Christine Sproat, Owen’s occupational therapist since he was five, will pick him up for rock climbing in Rock Creek Park. After two hours of classwork on Wednesday morning, Cornelia and Owen will be gone for the rest of the day—swimming at the Bethesda, Maryland, YMCA with Joanne, an instructor who herself has a child with disabilities; then, after lunch, there’s a piano lesson with Ruthlee, the semiretired Ivymount piano teacher, at her home. And finally, Owen has a private session with his psychiatrist, Dr. C. T. Gordon, who also runs a Thursday afternoon social skills group, where he tries to teach Owen and two other boys on the autistic spectrum basic skills of social interaction.
The day after Dr. Gordon’s session, Friday, Jennifer, the speech therapist, will come to the room, for an hour on speech skills and then take Owen out to a nearby corner of shops for pragmatic exercises, like ordering lunch in the line at Subway. Suzie Blattner, Owen’s academic tutor since he was four, makes a visit each week, as much to tutor Cornelia in the basics of teaching as to work with Owen on his reading and math.
The most important two hours of any day, though, is the morning session, where Cornelia presses Owen to focus and retain information, like she’s doing on this crisp autumn morning.
And it’s succeeding largely because, after a year in this room, she’s become more of an expert at working the magic formula: find hooks in animated movies to enliven, illuminate, and engage. She knows his language. Once you sit in his head, and look out through his lens, it’s a matching game. With a goal of education or therapy, or simply finding ways for him to communicate, look for where the many Disney hooks rest in him—the sweet spots where he’s taken the narratives deep into his psyche—and use them to pull him out. She does it. She and I have directed his therapists on how to do it. And it’s working.
“Okay, Owen, we’re going to do pirates, now.”
He nods, and looks intently at her. She knows what’s coming.
“All right, go ahead.”
; “Now, you listen to me, James Hawkins,” Owen starts, one eye shut, as though patched, in Brian Murray’s (Bill’s brother) voicing of John Silver from Disney’s 2002 Treasure Planet, an outer-space version of the classic Treasure Island. “You got the makings of greatness in you, but you got to take the helm and chart your own course. Stick to it, no matter the squalls! And when the time comes, you get the chance to really test the cut of your sails, and show what you’re made of! Well, I hope I’m there, catching some of the light coming off you that day.”
Takes roughly twenty-six seconds. Cornelia laughs—how could she not—Owen is suffused with such joy when he recites this resonant passage; a charge runs through him, voltage peaking with “the light coming off you that day.”
It’s as though his whole being snaps in coherence. The clinical term is he’s integrated, both in his senses and, importantly, his emotional core. And now he’s ready for a wide-ranging discussion, first about when the movie is set—“in the future, I think, but kind of a past and future both,” he says.
Cornelia follows up, “Because, Owen, they’re in a ship like the pirates sailed in which era?” And he’s not sure, but he wants to know. That’s the key. So she opens the text—a book called Pirate, one of the best-selling Eyewitness Books for kids and young adults. They read about the so-called golden age of piracy in the eighteenth century, with colorful characters ranging from Edward Teach (“Blackbeard”) to William Kidd to the Barbary pirates off the coast of North Africa, whom President Thomas Jefferson declared war on in 1802. Of course, these pirates were models for everyone from Long John Silver to Captain Hook to every character in Disney’s 2003 Pirates of the Caribbean: The Curse of the Black Pearl.
A half hour later he knows about everything from what goods ships carried in the 1700s to what Jefferson believed in, and even what’s on his tombstone at his home in Monticello.
