by Ron Suskind
The day of pain had begun. Parents moved room to room, many of them, like us, in a bit of a daze. Cornelia and I sat in a breakout session led by a lawyer, a disabilities specialist, going through the basics of legal guardianship, where our kids wouldn’t be permitted to make decisions for themselves—financial or medical—but they’d be protected against fraud, medical mishaps or, God forbid, trouble with the law. Legally, they’d be children forever.
Some of these things wouldn’t apply to Owen, or so we still felt. But they might, so we took notes, or Cornelia did. I looked over at the side of her face as she intently jotted pros and cons on the pad in our welcome packet and thought of that young mother packing up our house in Dedham; how far we were from those days. Now we could both see something we’d looked away from for so long: just how long the road still stretched before us. The rite of passage at hand was not so much the arrival of college life—it was much larger: a transition, with vast complications, into adulthood.
However much our kids’ childhoods were different from that of their typical peers, their adult lives seemed destined to be even more so. I guess I’d figured otherwise and didn’t even realize it. I felt a last parental expectation, hiding there, so inconspicuously, pulled from my chest and smashed in the corner.
Looking around the room at the faces of parents just like us made me realize that this was where we belonged, at long last. And many of them, like us, seemed as though they’d rather be anywhere but in this room, even though there was plenty of company. There was even more unease in the room that followed, where a psychologist gave a keynote about how we need to talk to our kids about sex, even if it’s uncomfortable for us. She then tried to lead thirty tables of shell-shocked parents through desensitization exercises—“okay, now everyone say vagina!”—and I felt like we were back with Owen and the curse cards. The bully today was a life we’d tried so hard to avoid.
And that’s why, two months later, when Owen called about us coming to the Disney Club gathering, we didn’t demur, as we should have. This was his time to try things on his own, succeed or fail on his own, in the controlled and protected ecosystem of this school. He was lonely. He went with his strong suit and started a club. Whatever happened, or didn’t, in that club was up to him.
But after Transition Weekend, we felt a final gasp of that old urgency to do whatever’s necessary to make it right for him—to plow the road—and a sense that these few years was our last shot, really his last shot, to make friends, build skills, find a home in a community of kindred.
So we jumped in our car in Harvard Square to go watch Dumbo. It’s so convenient after all. Just an hour down the road.
Then we go again the next Sunday night to watch Beauty and the Beast. Again, Cornelia and I lead, using all our acquired knowledge. And it doesn’t take us long to see we’re witnessing something of real worth: the club members are “talking Disney” to each other as a way of talking about themselves and their deepest feelings. There are heartfelt testimonies again—beyond anything most folks think these kids could manage—and singing. They all sing the songs, every lyric, like their lives depend on it. At the end, Owen and Molly, his closest peer in Disney expertise, slip into an impromptu duet to finish the theme song of today’s movie selection.
“And for once it might be grand,” she sings,
“To have someone understand,” he responds.
And together, “I want so much more than they’ve got planned.…”
Cornelia and I find ourselves singing with all our might.
Just doing whatever you want, whenever you want—your time mostly your own—is what people look back on fondly, wistfully, when they think of youth; something the youthful don’t much notice until it’s gone.
Or is about to be. Which is what Walt’s feeling on the last week in May as he drives across the Sagamore Bridge onto Cape Cod. He’s back from a postgraduate year in Spain, where he taught English at a high school and strapped on the football pads for the last time. He just applied for a job in Washington with the new Consumer Financial Protection Bureau. Real world.
But not quite yet, which is why, on a whim, he can just jump in our car, drive down to the Cape, and take Owen out to lunch.
Owen’s waiting at Riverview’s student center, filled at midday with students having lunch, and he introduces Walt around like a dignitary.
There’s an eagerness in the handshakes—“Owen, is that your brother!”—that Walt well understands. For many kids here, like Owen, a brother or sister is among the only neuro-typical, same-aged person they know intimately. A visiting sibling is a friendly representative of the wider world. Someone who gets them.
And Walt’s attentive, too, trying to quickly size up how college life is going for his brother. The place is smallish for a college—more like a boarding school—with boys and girls mixing and matching in a very nice cafeteria. Owen eagerly introduces Walt to a girl named Emily, who tells him she’s in the Disney Club with Owen. As the three of them talk, another boy enters the conversation, a gregarious kid named Charles, who introduces himself to Walt and then says that Emily’s his girlfriend.
“Back off, Charles,” Owen says—not threatening, but firm—and the boy does before Walt and Owen bid Emily farewell and get into the car.
“Wow, what just went on there?”
“He says he’s her boyfriend, but he’s not. She doesn’t have one.”
“Would someone in this car like to be her boyfriend?”
“She’s really nice and pretty and gentle,” Owen says.
By the time they’re sitting down to lunch in Hyannis at Friendly’s, the restaurant and ice cream chain, he has a pretty sound take on Owen’s first year. Sounds like he’s not having much trouble with the schoolwork; loves his art teacher, Nate Olin, and has two private lessons a week beyond a studio art class; he has one good friend in his suite, John, and another suite-mate who bangs on Owen’s dorm room door a lot, complaining that he’s playing his Disney songs too loud. Sounds like what you’d expect. Walt’s first year at Penn State wasn’t all that great either.
Disney Club’s the bright spot, and so is Emily.
Walt knows to go slow—relationships are hard for everyone; so much about picking up subtle cues, of knowing things about each other without having to ask. But Owen is very literal—says what he feels. Maybe she’s that way, too.
“Have you told her that you like her?” he asks, poking at a decidedly subpar chicken Caesar.
Owen looks at his grilled cheese sandwich for a moment, shakes his head. “No, I haven’t. Should I?”
Then Walt does what we all do—try to size up what’s different and what’s the same about Owen, and draw that line precisely in offering advice. “Just coming right out and saying, ‘I like you.’ No girl’s going to want that.”
By the time Owen gets to his hot fudge sundae, they’ve worked through the basic logistics of dating. He needs to ask her out on a date. Okay.
Maybe invite her over to his suite for dinner. He can make spaghetti for her—and they can watch a movie. Does she have any friends? Yes, and one of them—Julie—is someone his friend John likes.
Now we’re talking. Double date. Invite both girls over to the dorm for dinner and a movie.
But there are only three weeks left in school. “Now’s your moment, Ow. You gotta hustle.” Though Owen’s listening carefully, he’s been saying—“I know, I know”—to most of Walt’s suggestions. Now he looks at him intently; a look which says, what else do I need to know.
Walt measures his words, wanting to get it just so. “I know this doesn’t make much sense. It’d be easier to just walk up and say, ‘I like you. Do you like me? Okay then, off we go’. But that’s not the way it works. You’ve got to show the way you feel by what you do. And the guy has to make the first move.”
“Okay Walter…I know.”
Driving back to Cambridge late that afternoon, Walt feels a surprising burst of optimism. As he thinks about career pat
hs, how many suits he’ll need, what leads then to what—and all the choices of adult life, when things start to count—he replays their discussion in his head. It was a real conversation about relationships; the kind he can imagine having with Owen ten years from now, or twenty.
And the best part: They didn’t talk about Disney even once.
There’s a mix-up on the double date. Either it’s a miscommunication between the dorm counselor and Owen, where Owen didn’t know how many days’ notice he needed to give the counselor in his dorm to call the counselor in Emily’s dorm; or he knew, and didn’t act; or the dorm counselor didn’t make the call. There have been problems here before, and relationships and dating are one of the thorniest problems these kids face. Some of them are sexual. Some are not. Some marry and have kids. Most do not. But most want to be in relationships. It’s the area that makes Riverview most different from a typical college.
The mating dance is heavily managed. There’s lots of counseling, classes on relationships, sex ed; and innovations, like a “cooling off” period after couples break up—no dating for two weeks. The kids, who like Owen, tend be rule-followers, are known to walk around checking the calendar for the next “start-dating” date. When it comes to the physical issues, the school takes no chances. Public displays of affection are discouraged, under the proviso that it makes other kids uncomfortable. The policy, as we were told at a parent gathering, “is kissing should only be done in private…and then we make sure couples don’t have much private time.” In terms of romance, the killer provision is that all dates need to be planned by the dorm counselors. A real bucket of cold water, but obviously essential for their safety and to ease parents’ concerns.
The practical effect for Owen—the miscommunication means there’s only one weekend left in the school year to, as Walt says, “make his move.”
On Saturday morning, May 26, he rouses John, his suite mate, with a plan. They’ll take a Riverview bus that makes scheduled trips to the mall in Hyannis, about twenty minutes away. They’ll get haircuts, have lunch, and then buy flowers for the girls. They’ll have the girls meet them on the track of the athletic field. “We’ll give them the flowers,” Owen says, “and walk them around the track.”
All goes according to plan. They catch the bus, called the Conga Line. They get lunch at Panera. Then they both get haircuts. It’s a big mall. Lots of everything. But after several walks from one end to the other, it’s clear: no flowers.
Owen and John board the bus to go back.
“You’ve got to help us,” Owen pleads with the driver. “You have to take us somewhere we can buy flowers.”
The bus driver says it’s against regulations to take the bus off the scheduled route.
“Let me try to explain,” Owen says, trying to keep his voice even. “It’s the last weekend of school. This is our last chance to show the girls how much we like them. ”
It so happens this driver—a woman—is enough of a romantic to explain to the other passengers that this is an emergency and that they’ll be taking the long way home.
And so it happens the girls are waiting on the track, right on cue, as the boys approach. Owen’s holding a dozen long-stemmed red roses. John goes with purple ones.
Owen hands Emily her bouquet. John hands his to Julie. Then the two couples kiss.
A few hours later in a phone call, Owen says, “It was our first kiss, a real kiss.” They didn’t walk around the track, he adds. The girls wanted to go back to their dorm to put the flowers in water.
“So John and I walked back to our dorm.”
I asked him how he felt when they walked back.
The line went quiet for a good twenty seconds. He was doing a deep dive. A first kiss, after all, is a big deal, at any age.
“We felt really good about ourselves.”
The DISNEY CLUB YEAR-END PARTY e-mail goes to all the kids: be in the music room on Thursday afternoon, the day before students are permitted to leave for the summer.
But we get the return e-mails from parents.
Can they come?
Absolutely, Cornelia e-mails back. We’re as anxious to meet the parents as the students are to celebrate their newly discovered community.
On a Thursday afternoon, June 1, they come in force, each kid with at least one parent in tow.
Cornelia has gone overboard for the finale, with enough food to feed an army—high-end finger food, pizza, drinks, a sheet cake, large sugar cookies in the shapes of Disney characters. And, minutes along, we break naturally into groups: parents and kids. The students have been telling their folks about the club all year. Every Disney Club parent is ready with stories about their family’s fitful, often reluctant, relationship with Disney movies: some explain how their child’s only comfort in the early, difficult days, when many did not speak, were these movies, which they endlessly watched; how the nonspeaking kids often bonded with nonspeaking characters, like Dumbo and Pluto, who expressed a wide range of emotions without speech; how, as they grew, doctors and therapists often echoed the parents’ frustration—“will we ever get beyond Disney”—and some recommended a control or cutoff of viewing.
Many parents did. Others swung to and fro. But none of the kids seemed to abandon the passion. What was rare was for parents to see it, or use it, as a tool. The exception is Molly, whose mother, Nancy, arriving from Arkansas, is a therapist. Molly’s acuity and use of the narratives matches Owen’s.
Kids are mixing, picking through Owen’s video collection as music plays—Owen’s also brought his Disney CD collection—as he and Molly huddle in the corner.
There’s seems to be a philosophical debate under way. The topic: competing interpretations of The Fox and the Hound. The particulars are important. Something of a departure for Disney, the movie closely follows two characters—Tod (also the term for a baby fox) and Copper, a bloodhound puppy, who become best friends, running with other small animals, until they grow and are pushed apart by both instinct and societal dictates. But the film does not have a classic fable’s resolution. After they save each other as adults, the bloodhound and fox must part, leaving a final scene of Tod looking down at Copper from a distant hill, thinking of their long union, now ended, as the hunter and his dogs make their way home.
Owen and Molly’s debate is about the nature of friendship. And neither of them know crucial subtext about the other: as Molly’s mother later explains, this was a movie Molly and her sister, who’s two years older, watched often as her marriage to their father was breaking up. Molly was four at the time and, very much like Owen, was heavily involved with autistic behaviors and largely unreachable. But the movie got through. It hit home so squarely on painful issues of separation that, after their father left, the girls agreed to stop watching it.
For Owen, he’s worried about losing his friends in Washington. We’re thinking of moving permanently to Cambridge. There are many reasons, including from wanting to be close to Owen for his two years at Riverview and have him eventually be a resident of Massachusetts, which has the country’s richest benefits for autistic adults.
Harvard’s Center for Ethics has created a position, senior fellow, where I can write my books, and many of our closest friends are still in Boston. At a dinner a few weeks ago, we told Owen that if we did move, he’d still get to visit his friends in DC. Cornelia said, simply, “Owie, always remember, that home is where the heart is.” Owen nodded, said that he understood—he believes us when we say things like that—but he’s afraid his friendships with Connor, Brian, and a boy named Robert may be in jeopardy. It was so hard for him to make friends, to find The Movie Gods, to have someone to share his passions with, to laugh. He sees himself as Tod, looking down from the hill.
As I fuss with the cake, I overhear their debate arrive at its closing arguments.
“It’s a bittersweet ending Owen—that’s what they call it,” Molly says. “But it’s really sad. Tod and Copper will never again be together. And that’s just sad. There’s n
ot another way to see it.”
“It’s more sweet than bitter,” he says, his brow furrowed. “They’ll be apart, but they’ll always have their friendship, and their memories. No one can take that from them.”
A few feet away, next to the boom box, I see Josh sitting, vexed. I walk over and ask if he’s all right. He says he wants to ask Elizabeth to dance. I know there’s subtext here, too. He’s sweet on Elizabeth, who regularly brushes him off. Saturday is his last day at school—he’ll be moving on. His last chance is right now.
“Mr. Suskind. If I ask her to dance and she says yes, will I feel less like a wooden boy? And what if she says no. Then what.”
I rummage through my pockets for some guy advice, and offer a few bare scraps. “Either way, Josh, I think, you’ll feel more like a real boy.”
Music fills the room. Kids begin to get up and move, dancing, gesticulating, each playing out images in their heads that match each sound, while they sing the lyrics. Everybody here is singing. And that’s the way this year finishes for Riverview’s Disney Club, with young adults holding tight to their youth, moving to a song about beauty and how it lies within. Among them are Dumbo fans, who’ve found their hidden ears, and a very real boy, not the least bit wooden in his soft steps, who just found a dance partner.
I hear Owen cry out, “Emily!” who has just arrived. Molly may be a match for him in so many ways—they’re so similar—but it is Emily he’s drawn to in ways that make him feel renewed and alive and, right now, far from Tod’s melancholy hillside.
As he moves swiftly across the room toward her, and she toward him, Cornelia and I move to meet her mother, Gabrielle—our first encounter. We reach her as Owen and Emily fall into an embrace, and we all watch, thunderstuck, as the two of them passionately hug and nuzzle each other. It’s one thing to hear about it, another thing to see it. We stand there, dumbly, hands fumbling. Then all together—in a moment of spontaneous parental choreography—we slowly turn our backs to them. Give them their privacy. It’s their life now. Not ours.
