by Ron Suskind
And that’s where Owen has landed. Of course, we know nothing at this point—we’ve just landed on this planet—like the way Down syndrome folks often have highly evolved sensory equipment. There’s something about the way one area of challenge, a blockage, often creates compensatory skills somewhere else. No different than blind people with powerful hearing, but, in this instance, in subtler areas of emotion or expressed sensitivity.
Suddenly, Eric is standing in front of me, his eyes at the same level as mine. He looks at me, his brow furrowed, then at Cornelia. He can see we are sitting there frozen in misery. He reaches his small arms around my neck, hugs me, and says, “I love you.” I’m not sure if he hugs Cornelia or not—all I know is I’m in a daze, my world upended. Then he walks back to finish his drawing.
Cornelia needs someone to talk to.
She can’t get me on the phone. None of her friends really know what the hell’s going on. Little bits, maybe—yes, trouble with Owen—but not the real deal. All that, she figures, should remain private, at least until we figure out what we’re dealing with.
She dials the number to her childhood home in Fairfield, Connecticut, and, as the phone is ringing, she realizes she’s not exactly sure what she’s going to say. Her folks don’t really know what’s been happening, either. It’s November 1994. We’ve been in DC a year. But being far away from family and old friends means there aren’t regular visitors to the house.
She’s about to hang up when her mother’s voice comes on. “Hello?”
“It’s me, Mom.”
“Oh, Lily, how’s your day been?”
That’s her old nickname, Lily. And how’s her day been?
A disaster. She drove Owen to school, picked him up at midday, and drove him to intense speech and language therapy and then occupational therapy. None of it seems to be doing much good. He’s still acutely agitated, unable to make his needs known, crying from time to time, and just a few minutes ago, he threw a wooden step stool down a long flight of stairs at her. He was frustrated—he didn’t seem to want to hurt her—but she’s shaking.
And none of this she tells her mother. She tries to make small talk and not cry. But her mind starts to race, looking for a way out of this solitude. We still don’t ever use the “A word” in the house, and Owen’s many therapists don’t either. But she’s thinking about one of her mom’s first cousins, who had a son named Tommy, whom Cornelia saw a lot when she was a child. He had no speech and was sometimes hard to control, though more out of agitation than anger. He ended up living up in a state home. Cornelia’s mother, a woman of headlong and unfettered compassion, was close to her cousin and had regularly visited him there.
Now, hesitantly, Cornelia asks her mother an out-of-the-blue question wrapped in “oh, by the way” casualness, about Tommy’s diagnosis. “They said he was retarded,” her mother says. “But I always wondered if he wasn’t autistic.” Cornelia takes a deep breath and pushes forward, telling her mom about some of the things that have been going on of late, right up to the worst of it: that day’s throwing of the wooden stool. “I feel like I’m with Johnny!” she blurts out, a fireball rising from her gut.
The phone line seems to go dead. It hasn’t. From the silence, her mother says, “Did I tell you I bought a new quilt for my bed today?”
At this moment, Owen is upstairs in the one place where he always seems calm, at ease, even content: in our bedroom watching his Disney videos.
In the first year in Washington, that’s mostly what Owen has done on his own and what the boys have done together. What they can do. They watch on a television bracketed to the wall in a high corner of our smallish bedroom. They’d pile up pillows on our bed and sit close, Walt often with his arm around Owen’s shoulders.
It’s hard to know all the things going through the mind of a six-year-old about how his little brother, now nearly four, has changed. But we can’t help wondering if this is a big brother’s way of holding the world in place, holding on to what he knows.
After all, Walt’s been sitting in front of a screen watching Disney movies for a healthy share of his own short life. That’s the way it is with most kids around his age. A year after Walt was born in 1988, Disney, following a few decades in the doldrums, roared back to the fore of popular culture with The Little Mermaid. Families flocked to theaters and even more bought the video—it was the top-grossing video of the year. The same happened with Beauty and the Beast in 1991, only more so—that one was the first animated film nominated for a Best Picture Oscar. Then there was Aladdin in 1992, which was that year’s highest-grossing movie. People our age were building up video libraries for their kids. Not just the recent hits—which critics dubbed Disney’s “new golden age”—but videos from the original golden age starting in 1937 with Snow White and the Seven Dwarfs, Dumbo, Fantasia, Pinocchio, and Bambi.
We watched them all, sang the songs, danced to them.
All this to the mild disdain of some of our graduate-degreed, baby boomer friends. They had a world-wise, right-minded riff: that Disney was a voracious, commercialized, myth-co-opting brainwasher, using primal tales to shape young minds into noxious conclusions about everything from dead mothers (forget about stepmothers) to what happens to thrill-seeking boys (Pinocchio’s Pleasure Island, as donkeys forever) to how a princess ought to look (utterly unattainable!), all before the tykes knew what hit them.
Many of them, though, didn’t have kids. Cornelia and I weren’t huge fans of Disney, but the comfort and convenience of these videos was overpowering. The movies were an instant babysitter, a group activity, something parents and kids could do together, and always within reach. When Owen arrived, Walt learned to use the remote on self-serve.
And soon enough, his little brother slotted right in. It was the house he was born into. And we were just about average on the video front with a few special restrictions. The year before we left Dedham, we limited viewing time and, at one point, even stored away the TV. We were surprised Walt wasn’t more upset. After a few weeks we realized why: he was watching the Disney movies at houses of other kids. They all had them.
All that, though, was before the move and the change. Now, seeing the two boys on the bed, pillows piled high, Peter Pan or Aladdin flashing on the screen—we want to freeze time.
Of course, by six, Walt is being drawn away. New friends. New everything. He taught Owen how to use the remote control last summer and began to slip out. Not that his little brother has that many hours free. We “program” Owen as much as we can. Cornelia has him moving, carpooling to this therapy session or that, taking him to the market, the park, on errands. By the time they get home, she’s exhausted and letting him watch some movies doesn’t seem like a terrible crime. So, often he’s up in our bedroom with the remote control. Movie after movie he watches. Certain parts he rewinds and rewatches. Lots of rewinding. But he seems content, focused.
We ask our developmental specialists, doctors, and therapists about it. They shrug. Is he relaxed? Yes. Does it seem joyful? Definitely. Keep it limited, they say. But if it does all that for him, there’s no reason to stop it.
So we join him upstairs, all of us, on a cold and rainy Saturday afternoon in late November. Owen is already on the bed, oblivious to our arrival, murmuring gibberish…“juicervose, juicervose.” It is something we’ve been hearing for the past few weeks. Cornelia thought maybe he wanted more juice; but, no, he refused the sippy cup. The Little Mermaid is playing as we settle in, propping up pillows. We’ve all seen it now a dozen times—more for Walt—but it’s one of the best parts: where Ursula the sea witch, an acerbic diva, sings her song of villainy, “Poor Unfortunate Souls,” to the selfish mermaid, Ariel, setting up the plot in which she’ll turn her into a human—allowing her to seek out the handsome prince—in exchange for her voice:
Poor unfortunate souls
In pain, in need
This one longing to be thinner.
That one wants to get the girl.
And do
I help them?
Yes, indeed! […]
Now it’s happened once or twice
Someone couldn’t pay the price
And I’m afraid I had to rake ’em ’cross the coals.
Yes, I’ve had the odd complaint
But on the whole I’ve been a saint
To those poor unfortunate souls.…
Have we got a deal?
That’s what I hear every day, I tell Cornelia, from corporate public relations departments. She laughs and says, “Right, we’ve had the odd complaint, but on the whole I’ve been a saint.”
On the screen, the song’s over. Owen lifts the remote. Hits rewind.
“Come on, Owen, just let it play!” Walt moans. But he doesn’t go back to the start of the song, just twenty seconds or so, to its last stanza, with Ursula shouting:
Go ahead—make your choice!
I’m a very busy woman
And I haven’t got all day
It won’t cost much
Just your voice!
He does it again. STOP. REWIND. PLAY. And one more time.
On the fourth pass, Cornelia whispers, “It’s not juice.”
I barely hear her. “What?”
“It’s not juice. It’s just…just your voice!”
I grab Owen by the shoulders. “Just your voice! Is that what you’re saying!”
He looks right at me—first real eye contact in a year.
“Juicervose! Juicervose! Juicervose!”
Walt starts to shout, “Owen’s talking again!”
A mermaid lost her voice in a moment of transformation. So did this silent boy.
“Juicervose! Juicervose! Juicervose!” Owen keeps saying it, watching us shout and cheer. And then we’re up, all of us, bouncing on the bed; Owen, too, singing it, over and over—“Juicervose!”—as Cornelia, tears beginning to softly fall, whispers, “Thank God…he’s in there.”
Three weeks after the “Juicervose” dance, we’re at Walt Disney World.
We’d already scheduled a trip to Florida, with cheap flights booked months ahead, to visit my brother, Len, and his family—two boys, same age as ours—in Hollywood, Florida, where my mother also now lived.
The joke in the family is that Len never read the deathbed letter from my father about seeking the “worthwhile” life, which is why he is now raking it in as a financial manager. The easy lore is that I am more like our aesthetic, head-in-the-clouds father, an insurance executive who dreamed of teaching or writing; my brother, more like my ferociously pragmatic mother. It is, at best, half true.
As we became parents, we could see that—just like our kids—we were mixtures of both of our parents’ traits, along with plenty of untraceable origins. What didn’t change through the years—back then to right now—is that, at day’s end, there’re just the two of us, two brothers, having to figure it all out. Late that night, after everyone has gone off to sleep, he asks me how things are going. We talk most days—a quick call—but sitting quietly under a palm tree by his pool and beneath a canopy of stars, we can cut deeper.
“Best of times, worst of times,” I say, explaining that things couldn’t be going much better at work, or, with Cornelia—never more amazing than when she’s challenged—or Walt, lunging forward, reaching for six-year-old glories. But we’re not really sure what the future will hold for Owen.
“I see he’s not speaking yet,” Len opens.
Nope.
“Could it be a while?”
Yup.
“All these therapies, five or ten of them a week—at one hundred twenty dollars an hour. They covered by insurance?”
Nope.
Then we just sit there as a gentle breeze rustles the palm. I know he is doing some calculations. That’s what he does for his clients, every day: life math. He’s quite good at it—definitely got that from our mom.
After a minute of silence, I figure I’ll sketch the size of the equation.
“Worst case, we’ll have to support him for the next fifty years and thirty years after we’re dead.”
He’s already there.
“That worst case or likely case?”
“Somewhere in between, but we’re hopeful.”
Hmmm. He’s not one to discount hopeful. And he knows its uses, like the time in high school I convinced him to run for senior class president and he won.
“Hope’s not nothing,” he says, quietly, to his reflexively optimistic little brother. “Just tough to run the numbers on it, that’s all.”
And we both nod, get up, hug, and go off to sleep.
Two days later, we borrow one of their cars to drive the three hours to Orlando.
For the big day, Walt wears his Georgetown sweatshirt. He has a favorite babysitter who goes there, just down the street in the town where he now lives. Great basketball tradition—he knows all about that and can cite statistics. As a typical kid, at seven, his identity is becoming rooted to a place, his place, which he carries with him wherever he travels. This is the kind of awareness—of where one sits, or fits, in a widening world—that starts growing in most kids from around the time they’re three.
It is hard to know whether any of these traditional steps are being crossed by Owen. His thoughts and feelings remain a mystery. We told his various therapists about what happened watching The Little Mermaid. Cornelia and I could think of little else. It felt, in our video-inspired imaginations, like Rain Man had been replaced by The Miracle Worker, and that we had lived that iconic scene where Annie Sullivan breaks through to the young Helen Keller by signing w-a-t-e-r into the deaf and blind girl’s one hand as water from a pump gushes across the other. We had to be Annie Sullivans, too, and felt we’d had a breakthrough on that rainy afternoon watching Ariel lose her voice. Owen reached out, if only for a moment, from his shut-in world. We spoke to our child.
The speech therapist tamped down our enthusiasm. Dr. Rosenblatt, too. He explained “echolalia” is a common feature in kids like Owen. It’s something babies sometimes do between six and nine months, repeating consonants and vowels as they learn to turn a baby’s babble into words. It’s also something seen in the people with developmental disabilities who can’t speak. Just like what the term suggests, they echo, usually the last word or two of a sentence: “You’re a very smart and pretty girl,” a mother might say to her daughter. “Pretty girl,” the child will respond, an echo. Do those kids know what the words mean, we pressed Dr. Rosenblatt. “Usually not,” he said. “They may want to make a connection, which is hopeful,” he added.
“They just repeat the last sound,” I croaked. He nodded. Why, I persisted, in a last stab, would he be rewinding that one part, for weeks, maybe longer, and choose that phrase—from so many in an eighty-three-minute movie—as the one he uttered? Dr. Rosenblatt shrugged. No way of knowing.
So, left groping in darkness, somewhere between Helen Keller and a pet store parrot, we now enter the gates of the Magic Kingdom.
It is remarkably unchanged from when Cornelia and I visited ten years ago, before we had kids, or from when I visited in 1971. It is we who have changed…now, as parents, seeing it all through our children’s eyes, seeing what they see and feel. Walt grabs Owen’s hand, and off they go, the two of us right behind them, down Main Street, U.S.A. There are attractions in Fantasyland—Mad Hatter’s Tea Party, Snow White’s Scary Adventures, Mr. Toad’s Wild Ride—that echo movies they both love. Walt dives in full bore, laughing, joking, sitting with Owen on Peter Pan’s Flight in the two-passenger flying schooner, the one just ahead of us, as it swirls and dips over landscapes and figures from Never Land—the “Lost Boys” frolicking in their lair, Wendy walking the plank, Peter Pan crossing swords with Captain Hook. They look like any other pair of brothers and—in the trick of this light—they are. We run to Disney-MGM Studios, in search of the Teenage Mutant Ninja Turtles. That day’s park schedule says they’re having an autograph session. The boys wait—the line is long—and get pictures with Donatello and Raphael, the
characters they dressed up as for their last Halloween in Massachusetts. It’s as if nothing has changed, as if the last year and a half was a bad dream.
And each time we feel that we catch ourselves. After the “juicervose” euphoria—and the cold water poured on us by doctors—we try to make sure we aren’t just seeing what we want to see.
But by mid-afternoon it’s clear that Owen isn’t self-talking in the streams of gibberish, or flapping his hands as he usually does. Some, but not much. He seems calm and focused—following the group, making eye contact—and oddly settled, a slight smile, eyes alight, just as he is while watching the movies on our bed.
By day’s end, we’re feeling a bit of the same—settled, in a kind of walking repose that we’ve not felt since the days in Dedham. Owen seems at home here, as though his identity—or however much of it has formed—is somehow tied to this place.
On the way out of the Magic Kingdom, when Walt spots the Sword in the Stone near the carousel, we can’t help indulging fantasy. It is a fortuitous moment: A Disney actor dressed as Merlin appears near the sword periodically during the day. As the boys approach the sword, he’s there, reciting dialogue—“Let the boy try”—and then, approaching the anvil, someone flips a hidden switch that loosens the sword. Walt pulls it out as Merlin cries, “You, my boy, are our king!”
Then both of them turn to Owen.
“You can do it, Owie,” Walt whispers. “I know you can.”
Owen looks evenly at his brother and Merlin, then steps to the anvil and lifts it true.
Did he understand what Walt was saying? Did he just imitate what he’d seen his brother do? What the hell difference did it make!
Today, in sunlight, he’s the hero of his imagination.
Cornelia and I are changing. By March of 1995, our second spring of crisis in Washington, it’s now something we can see in the mirror.
