Authors: Ron Suskind
She lets on…and their faces flush with sympathy. Tell us about your child, how old? Three. Does he have any speech? No, not really. One asks if the ABA training is difficult to watch. She nods and forces herself to smile. If she’s looking to hire someone, a therapist mentions, she’d be happy to travel each morning to DC. Cornelia doesn’t let on that we’re drifting toward the opposing camp.
It isn’t until late afternoon after picking up Walt from school, putting Owen in his car seat, and racing north from DC to Rockville, Maryland, that I meet up with Cornelia. She’s already waiting outside the hotel and slips silently into our Volvo station wagon—our only car—looking shell-shocked. “It was like spending a whole day, eight hours straight, with the Ice Queen,” which is what we now called that first autism doctor. She describes the day and then offers her summation: “We don’t have to do this monkey training, because Owen isn’t like those kids.”
I nod. We both nod. It’s just a matter of reaching him, of figuring out what caused this storm to envelop him, so we can clear away the clouds and let the light back in. It also costs about forty thousand dollars a year for Lovaas. I figure that’s a lot of cash, well over half of my after-tax income,
that we just saved
. To celebrate, we decide on dinner out on the Rockville Pike—a repeating Hanna-Barbera landscape of every franchise created by the wit of man. We end up at the Silver Diner, one of a chain of restaurants crafted with admirable precision to look like genuine, home-grown neighborhood diners—a favorite of our kids and their beleaguered parents: a perfect place to vanish, where they serve ice cream sundaes all day.
A Georgetown video store has a life-size cardboard standup of Walt’s new favorite movie,
The Sandlot
, 20
th
Century Fox’s recent hit about a group of neighborhood kids who forge friendships as a ragtag baseball team. As September 1994 arrives, our months of pleas and cajoling pay off: the manager, ready to swap it out for another movie studio giveaway, hands it to us. So, for his sixth birthday party at a park near our house, Walt’s buddies crowd around their cardboard
Sandlot
doppelgangers—Bertram Grover Weeks, Mike “Squints” Palledorous, Benny “the Jet” Rodriguez—with Walt front and center, making for a thin line between the imaginary and the real. We snap pictures—lots of them.
A year before, this fairly conventional scene would’ve barely elicited a shrug. So, he’s got lots of friends, is at ease in the world—
of
course, and why not…to be expected.
That’s the way it was back in Dedham. We didn’t make a fuss over what was expected. Now it fills us with a sense of the exceptional.
And a wash of relief that Walt, smiling away, doesn’t seem to notice that the rest of us are barely keeping our heads above water.
A few days after the birthday party, we put Owen in the car for the forty-five-minute drive to Rockville, Maryland, and the Ivymount School, which, with two hundred students, from kindergarten through high school, is the largest and best school for kids with disabilities in the area. When the school was started in a church basement in 1961, there was no place for children with serious disabilities like Down syndrome or those with most developmental disabilities to go. Before Eunice Kennedy Shriver started Special Olympics in 1968, and public awareness began to grow, most were either kept at home or institutionalized.
It is a long way from there to this large Eisenhower-era school building, once a public elementary school, with its painted cinder blocks, blond wood, a library, gymnasium, and student artwork taped to the walls of long hallways. There are two children waiting in Owen’s classroom—a Down syndrome boy named Eric and another boy, Julian, very much like Owen, with a PDD-NOS diagnosis and no speech. Owen makes three. The teacher, Lucy Cohen, explains that the school recently had more kids, but in the past year many decamped to receive Lovaas-style ABA training at home. It will just be the trio, with Lucy, a speech therapist, and an aide. We’re asked to sit on floor mats against the wall to observe. And we do, as Lucy attempts to get the children to do simple tasks. Owen and Julian spin, murmur to themselves, and look about as Eric draws a figure on a page, per the teachers’ instruction.
Sitting on a mat, my back to the wall, I find myself thinking, in a kind of rueful amazement, how many wild-eyed expectations you carry around about your kids, especially when they’re young. Presidents? Nobel Prize winners? Global celebrities? Super Bowl quarterbacks and prima ballerinas?
It could happen.
Or, more soberly, millionaire philanthropists or, at the very least, graduates of the finest colleges, Harvard or Yale, then graduate school stars, most-recognized professionals in their field.
More likely, certainly than the
Nobels…and, thereby, certainly likely.
Their enrollment in school—where they meet other children and start slotting into lines, receive test scores, make teams or get cut—starts the process of wrestling those unspoken fantasies toward abiding reality. And even then, those fanciful notions are surprisingly resilient. After all, as long as that kid’s on the field of play, in the tournament’s main draw,
it could
happen
.
How many of these breathless expectations—also called dreams—constitute the traditional allotment? Best way to figure that is to extract them, one by one, and smash them in the corner. The pile is quite high. And that’s what we do, minute by minute, sitting on the floor mats, backs pressed against the cinder blocks. Owen spins and murmurs next to the sweet blond boy. We haven’t seen other kids like Owen before. Here is one who could be his twin. But Eric? Someone my age, growing up, knew those Down syndrome kids—spotted, peering from the window of the “short bus.” No, they weren’t in the game. Damaged goods. Ripe to be mercilessly ridiculed. Why? They wouldn’t even know they were the butt of the joke. It was a free kick. That was the reality of it—just as ugly as it gets.
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?
Defi
nitely.
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?