Following Ezra (25 page)

“I knew all that,” he finally says when we pause. “I just didn’t know that word.”

Once he does, he embraces it. When they were both toddlers—before Ezra’s diagnosis, or any inkling of it—Shawn worried aloud that our two oldest children didn’t seem to play together with the kind of natural chemistry she had seen in other pairs of young siblings.

“They will,” I assured her. “Just give it some time.”

But as they grew, they only became more different. Practically from birth, Ami cheerfully socialized with adults and peers alike. Even in our house, he constantly seeks out company and connection. When he learns to play guitar, instead of holing up in his bedroom, he seeks out Shawn and me to demonstrate a new chord he picked up or a song he has mastered. Where Ezra lacks any impulse to interact with most people, his older brother rarely prefers to be alone. Despite the gulf between them, Ami seldom expresses anger, or even regret, about Ezra. They don’t fight; they don’t play. They coexist, with little in common but genuine caring. Ami doesn’t naturally gravitate to Ezra as a companion, but he looks out for him, sharing his own friends with him, and in some ways understands him better than anyone.

When Ami is twelve, the organizers of an educators’ conference invite him to speak on a panel. The topic: siblings of special-needs children. Shawn and I watch from the back of the room as Ami ably fields question after question from the sixty or so professionals, all the while exuding a kind of sweet nonchalance, as if the entire topic is of little consequence.

“He’s just a person,” he says of his middle brother. “He’s a little unusual, but the way I see it, he’s just another kid.”

Noam’s relationship with Ezra is more complex. Just under two years younger, Noam was still an infant when Ezra began veering off course, and for a time, the two boys are nearly constant playmates, Noam trailing after Ezra, imitating or joining his every movement, however wild or irrational. If Ezra dumps a box of wooden blocks, Noam dumps one too. If Ezra swings at high speeds on the backyard swing set, Noam joins him with pleasure.

When they are five and three, Shawn travels for several days to New York. Ezra, on one of his routine search-and-destroy missions through the house, somehow breaks into a box of her tampons, opening two dozen one by one and laying them out across the carpet outside the bathroom. Pleased with his brother’s handiwork, Noam runs to alert me.

“Look, Abba! Ima’s going to be so happy!” he says. “Ezra found her candles!”

We develop a tongue-in-cheek title for him: Ezra’s best therapist. When nobody else knows what to do with our middle son, when I run out of patience, when Ezra flees contact and runs out the back door into chilly winter mornings in only his underwear, Noam plays with him, undeterred. He has an essential kindness, and doesn’t have a fixed idea of what an older brother is supposed to act like—or realize that most of them don’t incessantly repeat bits of dialogue from
Veggie Tales
and flap their arms like birds. Noam spins around like Ezra, rolls in blankets with him, watches his videos, and joins in his silly revelry.

Shawn and I both know it will end someday—that Noam will pass Ezra by. One day Noam will tire of the swinging and the blankets and the zoo visits and want to move on and do what most boys do at five or six or seven: Little League, karate class, video games.

A therapist tells us that siblings of children with diagnoses like Ezra’s often react with anger—at first subconscious, then more overt. At six, all Noam wants is for the world to make sense. That logical universe doesn’t have much room for an older brother who acts like a younger brother, so Noam does occasionally display frustration beyond the typical sibling conflict. It is lucky for Ezra that these subtle nuances of the social world pass him by like helium balloons floating past. He doesn’t seem troubled as his younger brother slowly loses interest in most of the things he so loves—otters, Disney movies, juvenile games—and moves on to his own passionate pursuits: violin, origami, and a growing circle of close friends. The two still occasionally play Wii games together or giggle over a YouTube video of a cat. It’s different, but a reminder of the bond they share. Increasingly, they get into little tiffs—just the kind of squabbles I had with my own brothers.

One summer afternoon when Ezra and Noam, twelve and ten, are at sleepaway camp, I receive a phone call from Tova, a counselor who has known them both for years.

“It’s about Ezra and Noam,” she says. At first I’m concerned—such calls are rare—but then she explains. “I just spotted the sweetest thing—they were off together, just the two of them, hunting for frogs,” she says. “I just thought a parent would want to know.”

I smile, grateful for small moments.

 

 

In a cabinet in our bedroom, Shawn and I keep our family memorabilia: finger-painted Mother’s Day cards the boys created in kindergarten; summer camp group portraits, shoe boxes stuffed with photos from the early years, back when you got two sets of prints in a yellow envelope with your negative strips. Toward the back of a deep, cluttered shelf sits one box I have rarely touched: a plastic bin stuffed with videotapes we shot in the first years of our children’s lives. With our busy schedules working and coordinating three children’s packed days and weeks, we rarely have a moment to indulge in watching nostalgic footage. There is another reason—an unspoken one—we haven’t ventured into the video box: We both know that before he was two and a half, that rocky season when he began lining up plastic animals and overnight seemed to become lost in his own thoughts, Ezra’s development had been more or less normal. I didn’t articulate it, even to myself, but I was not sure I ever wanted to see the Ezra of six months or a year before that, the preautism Ezra.

One summer day, when all three children are away at camp, Shawn, missing her sons, gets a hankering to peek at the videos. I resist, though my hesitation is tempered by curiosity, so I retrieve the bin and the two of us sit on the carpeted den floor, sifting through the miniature videotapes, most of them untagged.

I find one with my handwriting on the label: “Ezra’s bris.” I pause a moment, shrugging in reluctance, then insert the tape into the player.

The blurry, poorly lit images show a crowd gathered in our rented apartment in Manhattan for the ceremony marking Ezra’s circumcision. It’s January of 1996. Chilly winter sunlight streams into the windows. I’m wearing a suit and a tallit, a prayer shawl; Shawn, a black dress with small white polka dots. A babysitter holds Ami, at twenty months, a grinning, blond, wide-eyed ray of sunshine. I see our four parents—in their late fifties, looking fit and happy, clearly buoyed by the celebration of a new grandchild. We fast forward through most of the ritual, except for a few seconds when, with baby Ezra crying just after the circumcision, the camera focuses on Shawn, sitting out of view of the baby, listening to her newborn’s sobs, wiping a tear, then closing her eyes in contemplation. I wonder what she is thinking at that moment, what hopes and dreams she holds for this tiny boy with his thick head of black hair.

We watch our younger selves explaining his name: Ezra Moshe, for two of his great-grandfathers. Shawn is congested, and still recovering from her four hours in the operating room a week earlier. I sound eager and upbeat and maybe a bit naive when I express our wishes for our new son.

The rabbi shares a Jewish teaching on the importance of names: the one parents give, the one a person is known by, “and most of all the name he will make for himself with his own life.”

“Seen enough?” I ask Shawn in the den.

She grins. “Let’s look at another.”

I pop in a tape that turns out to be from two years later. Shawn is pregnant, weeks away from delivering Noam. The camera follows Ami—nearly four and endlessly loquacious—and Ezra—brown eyes, long, gorgeous lashes, playfully eating a slice of cheese pizza about half the size of his body. Then he wanders about his bedroom, holding on to a hunk of red Play-Doh and mugging for the camera. That scene ends abruptly and then Ami and Ezra are in the bathtub splashing each other, talking, singing. Off camera, I’m ticking off names of relatives, waiting for Ezra to complete the pairs.

“Bubbe and . . .” I say.

“Grandpa!” he says.

“Shana and . . .”

“Alex!” he says, naming a cousin.

In the den, I scoot my body closer to the wide-screen television, looking closely to see if I can detect a sign of anything amiss, but all I see is a nearly two-year-old little boy—sly, charming, sweet, engaged, looking straight back at the camera, directly at me.

As we watch, I reach out and squeeze Shawn’s hand. Neither of us says anything. There’s nothing to say. It’s like watching a Hitchcock movie, where the suspense lies in the audience knowing what the characters on-screen haven’t figured out yet: what’s going to happen next.

But in real life, you can’t predict the future. You just never know. In later years—long after the bris, the bath, the diagnosis—people who know Ezra will occasionally ask me what his life will look like when he’s an adult.

The question can come in the most awkward ways. When Ezra is nine and we are in the midst of our home renovation, I run into Doug, a neighbor, who inquires about progress on the project.

“So,” he asks, “are you guys going to add a wing with a bathroom for Ezra?”

I’m not sure I have understood the question correctly. I tell Doug that there will be a lavatory for the three boys to share.

“But I mean, you’ve got to think about down the line,” he says, “when he’s going to be living with you as an adult.”

Ezra is nine. Every year since his diagnosis, he has grown and progressed in ways that have exceeded most of our expectations and left me in awe of the new aspects of himself he has revealed: his remarkable memory, his growing self-awareness, his sense of humor. I have never considered that he might spend his adult years under our roof. Doug, who hardly knows him, has put limitations on my son. But I see the future as an open question.

I once ask Dr. Robinson, Ezra’s autism specialist, whether our son might ever earn a driver’s license. It has struck me how much difficulty he has with ordinary judgments and coordination, and I wonder what the chances are that he might overcome those challenges enough to drive a car. I picture him at twenty or thirty, alone, riding the big blue buses I see roaring by on Pico Boulevard, gazing out the window at the movie billboards passing by.

“Will he go to college? Probably,” Dr. Robinson says. “Will he have a job? I think so. Will he drive?” She pauses. “My patients surprise me all the time.”

For his part, Ezra has never liked talking about the distant future. It’s not unusual for adults to ask children what they want to do when they grow up. Seeing his interest in animals or his passion for animation, acquaintances frequently ask him if he might like to become a veterinarian, say, or an artist. As early as ten or eleven, he devises his standard response—one that sounds uncharacteristically mature. “Right now,” he says, “I just want to focus on my childhood.”

The unknown has always been what Ezra fears the most—who doesn’t?—and this is his way of protecting himself from having to think too much about it.

One Thursday a few weeks before his bar mitzvah, I pick up Ezra from Hebrew school. He takes part once a week at our synagogue’s after-school program, and rarely chooses to share much about the experience with me. I ask anyway.

“We made a frame,” he tells me. The class has been studying the traditions surrounding Jewish weddings. As an art project, each student has decorated a picture frame meant for photos. As he decorated, he tells me, he painted words.

“I didn’t write ‘wedding,’” he says.

“What do you mean?” I ask.

“I just wrote ‘born—bar mitzvah—blank,’” Ezra says.

“What do you mean?”

“On the frame, there were three spaces. I wrote ‘born: January nineteenth, 1996. Bar mitzvah: April twenty-fifth, 2009. Wedding: blank.’”

I think I understand.

“Do you think you’ll get married?” I ask.

“Of
course
I will,” Ezra says.

“Who will you marry?”

Silence. At thirteen, Ezra has never had a close friend. At least, not a peer his own age. But he is certain he’ll get married. I feel gratified by his healthy sense of optimism.

“Whoever marries you,” I say, “will have to be really interested in . . .”

“. . . in me?” he interrupts.

“Well, yeah. But I was going to say she’ll have to be really interested in Pixar movies.”

Silence.

“Because you are.”

Silence.

“You think you can find someone like that?”

He starts to get agitated, the way he does when things take a turn he wasn’t expecting and he feels out of control.

“Let’s talk about this another time,” Ezra says.

We drive home, and I look in the rearview mirror at my son, sitting in the same seat in the car where he has sat as we have shared so many conversations. And for right now, I try to focus on his childhood.

CHAPTER FOURTEEN

Seven days before his bar mitzvah, Ezra is stuck.

It’s not the Hebrew prayers he will have to recite that are bothering him; after many months of hard work, he knows those. It isn’t the
d’var Torah
, the speech he will be delivering, that’s causing the problem. That, after considerable struggle, is under control. It is not the sizable crowd of relatives and friends we are anticipating; such things don’t make Ezra nervous. It isn’t the party or the packed schedule of events at which he, as the guest of honor, will be expected to greet and mingle, hug and kiss. Much of that is still difficult to imagine, but that isn’t the problem.

It’s the gifts.

The envelopes begin arriving in late March, a couple of months after Ezra turns thirteen and a full month before the event. Each weekday afternoon, he hops off the school bus, sprints up the walk, bursts through the front door, drops his red backpack on the foyer’s hardwood floor, and dashes to the mail table.