Following Ezra (24 page)

“Do you mind my asking?” she says.

“No, it’s fine,” I tell her. Some people we know step gingerly on the topic. Some avoid it. Some say whatever comes to mind.

“I mean, will he grow out of it? Will he grow up and be normal?”

I take a sip of my latte and think about
normal
. What is normal, anyway? And when is anyone grown up? And do I know what
anyone
will be like in five or ten or twenty years?

As Ezra’s father, I often find myself in the position of trying to explain him—to friends or relatives or, sometimes, strangers, like the clerk at PETCO who watches him stand for thirty or forty minutes with his nose pressed up against the Plexiglas of the mouse cage, watching the tiny creatures swarm around the hamster wheel. The clerk, wearing a red vest and carrying a broom, finally speaks up.

“Is it autism?” he asks.

I nod.

“What kind?”

Over time, my answers have evolved, but the questions have remained consistent. Most people who meet Ezra or who know something about him have variations on the same three questions:

This is how Ezra learns that he has something called autism. We have never hidden it from him. He has sat at the dinner table (or paced around it) for years while we have discussed the topic. He has been to countless appointments with therapists and doctors when Shawn and I have discussed him and his challenges. Often, I have wondered how much he understands what we are talking about. At times I have assumed that he comprehends, but cannot express it. On other occasions, I have been fairly sure he was lost in his own thoughts, and simply not paying attention. Around the time he is twelve, Ezra begins to gain a semblance of self-awareness, perhaps begins noticing in subtle ways that he is unique.

We are on the Oregon coast, where my parents own a vacation home, a compact, geometric structure that perches over the Pacific on a stretch of beach populated by only a couple of hundred homes. Nearly every summer, we make the pilgrimage here, usually with extended family, to relax in the fresh air, stroll on the wide beaches, read novels, and watch the waves. When the boys were younger, Ami and Noam would spend long hours constructing elaborate systems of canals in the sand to channel the water from a creek that runs into the ocean just adjacent to the house. While they labored in collaboration with a few cousins and my brothers, Ezra would sit alone not far away, tossing fist-size stones into the creek, one after another, and listening to them hit water:
plop
,
plop
,
plop
. He did that for hours, a small boy lost in the addictive, repetitive rhythms of grabbing, tossing, listening, and tossing again.

On this day, he is alone in a different way. My parents have joined us for the weekend, and so have the families of both of my brothers. It’s an informal family reunion. By night we gather for large, communal dinners. By day, the sixteen of us (septuagenarians through toddlers) spread out in many directions—some jogging, some digging, some reading—except for one breezy Saturday afternoon when the whole group joins on a stretch of beach for a spontaneous game of kickball. Everyone, that is, except for Ezra, who gets shuffled onto a team, but seems less than enthused about it. He has never shown a hint of interest in team sports. (A single season on a T-ball team proved bewildering, as the rules seemed to defy his grasp and he showed up mostly to earn the postgame snacks of granola bars or Cheetos.) I’m on his team and I try to direct him as we spread out across the makeshift field, but after a short time, he grows defiant and cranky, marching off, arms folded, and collapses into the soft sand nearby. The game proceeds and he remains by himself. As I glance up at him from the game, it strikes me: Even here, among the people who love him most in the world, Ezra is alone.

I keep playing, but Shawn heads over to try retrieving him. He resists, striding with conviction toward the creek to throw his beloved stones.

“Come on, Ezzy!” I can hear her calling after him. “Everybody is here. We want you with us.”

Ezra silently folds his arms across his chest again, resisting his mother’s appeals with dramatic flair. She approaches him and he dashes farther away. From my place in the kickball game, I can see my wife chasing my son in crazy, pell-mell circles on the beach. Finally she catches him, throws an arm around his shoulders, and the two of them walk back to a spot a bit down the beach, where together they sink into the sand and sit side by side watching the waves and feeling the wind on their faces. I keep playing, my mind only half in the game, wondering how she will get him back.

She doesn’t. They get up and walk down the beach together, and I don’t see them until later, when the game is over and the cousins have dispersed across the beach and back toward the house.

“I told him,” Shawn tells me.

“You told him . . .” I say, raising my eyebrows, wondering what she means.

“I told him he has autism,” Shawn says. “We had the talk.”

For a moment I am stunned—not in a good way. Usually, Shawn and I are in sync on such matters. We have talked and theorized and even consulted with professionals about the appropriate time to explain Ezra’s diagnosis to him directly. As usual, I’m the one who delays the decision, weighing, researching, and waiting. Shawn is more intuitive.

“I’m sorry,” she says, seeing my puzzled expression. “I know we should have discussed it.”

“I assumed we would. . . .”

“I’m sorry,” she repeats. “It was just the moment to do it.”

I forgive her. “Did he get it?” I ask.

“I think so.”

“What did you tell him?” I ask.

Shawn recounts the conversation as it started, with her calling after him to rejoin the family.

“Why do I have to?” Ezra had responded.

“Because we’re all together and you’re part of the family,” Shawn had told him.

Ezra kept walking, picking up the pace and forcing Shawn to follow in pursuit.

“Come on; Ami and Noam are there,” Shawn said.

“But I’m different from Ami and Noam,” he said.

Shawn caught up to him and paused by his side.

“I’m not different?” he asked, backtracking.

“Do you
feel
different?”

“I’m different because I don’t go to the same school,” he said. “Three brothers can’t go to the same school? That would be against the rules?” As was his habit, he turned each sentence into a question.

“No, you
could
go to the same school, but you go to a school that’s better for you.”

“I’m not the same as Ami and Noam?”

“You’re not,” Shawn finally answered. Since he had broached the topic, she told me later, she decided to follow his lead. When she and I had discussed this very revelation with various professionals over the years, most agreed that there was no correct time to explain a diagnosis to a child. They did warn that for the child, the revelation is often followed by a period of depression—sadness that comes from the prospect of going through life never fitting in. Ezra, for all of his quirks and challenges, had always been at heart a happy person, and I dreaded seeing that cheerful essence shattered.

“Do you know what makes you different?” Shawn asked.

“I’m a different age?”

“That’s true, Ezra, but you’re also different because you have something called autism.” She paused and let that sink in. He didn’t respond. “Have you heard that word?”

He shook his head. We had used the word in conversations probably thousands of times over the years when he was present (physically, at least).

“Autism means your brain works a little bit differently from other people’s.” Ezra listened. “Autism is why you have such a great memory and you know so many things about animals and movies.”

“It means I’m smart?”

“You are very smart, sweetie. But sometimes it also makes it hard. You know how sometimes you repeat things a lot? And it can make it hard to play with other kids.”

“It’s bad?” Ezra asked. He was working so hard to understand.

Shawn shook her head. “No, sweetie. It’s not bad. It’s just part of you.”

“Aut—what’s it called?”

“Autism, sweetheart.”

“Autism is good?” he asked.

“Do you think so?” Shawn asked.

He smiled. “Yeah. It’s good.”

“I think it’s
very
good, because it makes you the Ezra that Ima and Abba love.”

“Yeah!” Ezra said, brightening. “Autism is good!”

“Do you want to ask any questions about it?” Shawn asked.

“No! Autism is good!” was all he said.

“You know what?”

“What?”

“We love you very, very much and we’re very proud of you.”

“Yeah, you’re proud of me,” he repeated. He leaped to his feet. “Yeah!” he shouted as the wind blew and they made their way back toward the house. “I have autism and I’m smart!”

 

 

I entered parenthood knowing nothing about neurological disorders, but with a PhD’s worth of wisdom about another condition Ezra had been dealt, through no fault of his own: He was the middle of three sons. So was I, and growing up with a brother two years my senior and another three years younger had left its scars from battles over things like bedroom turf, vinyl LPs, and parental attention. I knew what it was like to be neither the esteemed oldest child nor the coddled youngest, to be just, as I was known in my family, Tom in the middle. It meant that I could fall victim to an older brother who, at times, punched my shoulder at will, but then face certain punishment when I attempted to deliver the same tough love to my younger sibling. Of course, things improved as the three of us grew older, and the fluke of birth order placed me at the center of a nurturing family that sustained me into adulthood.

For Ezra, being the middle son is a mixed blessing. He has little social impulse and a tendency to operate in isolation, but his place in the family forces him to live in constant interaction with other human beings. As he fights his own turf wars over computer time and chocolate-chip cookies—the way any sibling does—Ezra by necessity learns to exert himself, engage in internecine combat, and constantly contemplate the motives and desires of the other boys. At school he can choose to operate in his own sphere; at the zoo he can wander in isolation; but at home, Ezra has no choice but to forge bonds.

Early on, we struggle with how and when to explain to Ami—two years older—the nature of his brother’s diagnosis. In our attempts to be sensitive and enlightened, it turns out that we aren’t unlike parents who fret over teaching Johnny about sex, only to discover that he has mastered the subject already at summer camp or on the school bus.

When Ezra is four and Ami is six, we begin attending a weekly support group for families of children with diagnoses similar to Ezra’s. Every Wednesday afternoon, I meet Shawn and our three sons at a church social hall, where a therapist with expertise in autism leads a discussion group for parents over a long conference table, while nearby, young adults supervise Ezra and his peers in one room, and their siblings—clustered by age—separately. Neophytes as special-needs parents, Shawn and I have both found value in the discussions, which mix emotional support with practical advice (“remove labels from new shirts—they drive the kids crazy”). It is the first time the two of us are meeting other parents of children like Ezra, and I find it comforting and encouraging—and occasionally frightening—to share time with others experiencing the same journey.

As much as we derive strength and fellowship there, we have never explained to any of the boys why, exactly, our family is participating in the program. We refer to the weekly meeting as simply “playgroup.” I wonder at times whether Ami has noticed that a disproportionate number of children in Ezra’s group are boys who spend the hour flapping their arms or spinning in circles instead of, say, playing Parcheesi. The question never comes up, and as far as I know, he considers playgroup just another family activity, along the lines of synagogue services or his soccer league.

One week, the five of us have just piled into Shawn’s minivan after the weekly meeting when Ami speaks up from the back row with a question.

“What’s autism?”

Shawn and I share a glance and I take a deep breath and let it out slowly.

“Why are you asking?” she says.

“Jennifer had us all go around and answer questions,” he says. “And then she said, ‘Now try answering the way your sibling with autism would answer.’”

I feel a surge of anger and frustration. How could the group leader have been so injudicious? How could she have broached that topic without checking first with the parents? I feel violated, like something precious we have been guarding has been destroyed. Shawn and I were offered no choice, no chance to discuss the matter, and now we have to muddle through the aftermath.

Then again, who am I fooling? Ami is an intelligent and sensitive little boy. For all of our attempts at euphemism, it
is
a program for families coping with autism. Maybe what pains me so much isn’t Jennifer’s slip, but something else. Maybe what I feel is sadness that Ami’s relationship with his brother will never be the same; that the idiosyncratic kid who shares his bedroom—the one who dumps toys instead of playing with them, the one who incessantly asks him if videos are “for big kids or little kids”—is now somebody else: his “sibling with autism.”

That evening, Shawn and I take some time to sit with Ami and explain the term, being careful to keep the description positive—or at least neutral: This is the way God created Ezra, and there is nothing wrong with it; it’s just the way he is. Ami looks back and forth at the two of us as we go to pains to couch the information—what little we understand then ourselves—in the least painful way possible, forgetting, perhaps, that he has watched us struggle with this for a couple of years.