Following Ezra (6 page)

Hugh is a stout, balding man in his late thirties in a T-shirt and jeans. He works alone in a salon that’s simple and sparse: a barber chair upholstered in deep red vinyl, a table, one mirror, a magazine rack, a small TV, and a green plastic patio chair. Hugh is finishing another boy’s haircut when we walk in, so Ezra sits on the floor, where he is overjoyed to discover a large green bin full of plastic dinosaurs, just like his collection at home. He begins rifling through the dinosaurs until Hugh finishes with the other boy and pats the vinyl chair, indicating for Ezra to sit down.

I vaguely explain the hairstyle we’re looking for. What I don’t say is that, really, anything decent will be fine. Ezra’s hair has been so unevenly cut for so long that it will be a relief to have a trim, period.

“Sure, surfer cut,” Hugh says. He takes out a can of talcum powder and shows it to Ezra, letting him feel it on his fingers.

“Now, my friend, I’m going to put some of this on your neck, so it’s not so itchy,” he explains tenderly.

Before each step in the process, he offers Ezra a warning.

“My friend, I’m going to comb your hair now. That okay?” Before he sprays my son’s hair with water, he grabs Ezra’s hand and sprays gently into his palm.

“Don’t cut my ear off!” Ezra says at one point, ducking to avoid the scissors. “You’re going to cut my
ear
off!”

Hugh calmly takes Ezra’s little hand in his, and shows Ezra how to hold his own ear flap down to keep it out of harm’s way. When Ezra moans or cries, he asks, “Can you use your words, my friend?” Each time he speaks to Ezra, he uses that same phrase:
my friend
.

Even with all of that help, Ezra gets antsy, slouching to avoid Hugh’s comb and scissors, and eventually letting his body slide out of Hugh’s reach and onto the floor. I have been here before; I’m starting to feel like I’m back at the last salon, the site of the Great Haircut Disaster.

“Come on, Ezra!” I say. “Sit up! Let Hugh finish.”

But Hugh waves me off. “Give him a minute. He just needs a break.”

From the looks of it, Hugh is running behind schedule. His next two clients are already here, a girl sitting in the green plastic chair and a boy playing a video game in the corner. Now on the floor, Ezra scoots over to the bucket of dinosaurs, and starts reaching for them.

“Ezra! It’s not time for that!” I say. “Come on!”

Hugh waits patiently. “He’ll be up,” he says calmly. “He just needs a second.”

Ezra begins lining up the dinosaurs in a pattern, just as he likes to do at home, one creature at a time: tyrannosaurus, stegosaurus, triceratops. I look anxiously at my watch, peer at the waiting customers, and glance at Hugh. “It’s okay,” he says, nearly closing his eyes as he stands—unhurried, serene—with one hand on the back of the chair.

In a minute, Ezra has placed the last dinosaur. Without prompting, he stands upright and hops up in the chair. “Okay,” he says steadily. “Ready.”

Hugh keeps going. He has a magical, intuitive touch. I ask how he came to work with children like Ezra. Hugh has been cutting hair in children’s salons since high school. Whenever a child who seemed problematic or difficult came in, “everyone else would freak out,” he says, “and I would say, ‘Come on. What’s the big deal?’” He tells me that his colleagues had been afraid of what might happen, afraid of people different from themselves. “People don’t give children enough credit,” he says. “They’re
people.
”

By this point in the conversation, Ezra has slipped off the chair again, this time to explore the video game in the corner (the other boy has finished), a driving game with a steering wheel. Undeterred, Hugh trails him with his scissors, taking a minute to show Ezra how the game works, and then, as Ezra takes the wheel, putting the finishing touches on the back of his neck. As I watch the two of them, I feel grateful, even buoyant. In all of our searching for expert advice, for instructions to follow, I have discovered wisdom and insight in the most unlikely place—a children’s hair salon near the beach. Even if our lives have veered off the course of
What to Expect
, there is hope, there are answers, and if we know where to look, we just might find angels along the way.

CHAPTER THREE

Everyone is afraid of something: precarious heights, closed places, darkness, sharks. Ezra is afraid of many things, and he seems to accumulate new fears the way other people collect stamps or seashells. Certain toys, unexpected noises, particular moments in animated videos—any of these can instill dread and dismay, usually without warning.

It happens at the Regional Center, the agency that distributes state dollars for children with various conditions that are classified as developmental disorders: cerebral palsy, Down syndrome, and autism, among others. When Ezra is just over three, Shawn and I learn that we need to find a way to get Ezra into the Regional Center system in order to obtain services for him. I keep hearing that word:
services
. I’m not certain what it means, or why Ezra needs them. I don’t cope well with bureaucracies and lack the patience for paperwork. (I would never think of preparing my own tax return, instead handing my accountant an unruly heap of manila folders each spring.) But I know we need services—whatever that means—so we make contact.

A social worker named Denise visits the house on a sort of reconnaissance mission, a session to ascertain whether Ezra will meet the Regional Center’s criteria. Denise is in her late forties, with a friendly manner. She sits with Shawn and me in the playroom—we’ve straightened up a bit, but there’s no escaping the clutter of three children’s oversize Lego blocks and plush toys—and she runs down a list of questions about Ezra. They’re not much different from those we answered for Ruth—pregnancy, birth, first words—so we are prepared. I am also keenly aware of the strange, counterintuitive calculus at play. My instinct is to try to see our children in the best possible light, to find hope and filter out the more ominous indicators. Our goal in this transaction, though, isn’t to make Ezra shine; Shawn and I need to make Denise understand that our son is troubled and challenged—that he is the kind of child who needs
services.

We don’t distort the truth. We tell Denise about the solitary play and the lack of connection. We describe how Ezra won’t make eye contact, the way he repeats phrases, echoes questions, and often seems not to hear us at all.

“I think it’s a good idea for you to bring him to meet one of our psychologists,” Denise says when she’s finished. I feel an odd mix of satisfaction and heartbreak. I close the door behind her and my wife and I share a warped moment of pride in our accomplishment: We have succeeded in presenting our son as troubled enough to qualify for the next round in the process.

A couple of weeks later, the three of us visit a large, bland office building in a business park in Culver City, about six miles from home. We’re running late, and Ezra doesn’t help when he presses every button he can reach on the elevator. The man in the suit heading for the top floor heaves a heavy sigh.

The second we step into Dr. Miller’s office, Ezra gets a panicked look in his eyes and tries to turn around and head back for the door.

“What’s wrong, honey?” says Dr. Miller—a petite woman with large eyeglasses and a warm smile.

Barely looking up, and shielding his eyes with his right forearm, he gestures with his left hand toward the corner behind her desk.

“I don’t like that,” he says.

We all look to see what he’s pointing at. It’s a puppet, a likeness of a character from a 1980s sitcom.

“Oh, Alf?” Dr. Miller says. “He’s not scary; he’s nice—look.” She starts to mount the puppet on her right hand. Dr. Miller has a friendly, open manner and the kind of gentle, goofy enthusiasm children love in kindergarten teachers.

It doesn’t help. Ezra looks terrified, holding both palms out in front of his face like he’s fending off attackers. He shakes his head and looks downward, as if Alf ’s gaze will harm him.

“
Nooooo!
” he cries. “Make that go
away
.”

She complies, stowing the creature in a metal file drawer.

“Okay?” Dr. Miller asks.

Ezra looks toward the drawer warily, as if he suspects that Alf could crawl back out at any moment and spray the room with gunfire.

“I’ll even lock the drawer,” she says, showing Ezra her key chain. “See?”

That helps, but Ezra is clearly still focused on Alf. His brown eyes dart about the office, scanning the shelves and surfaces for the next threat.

“That actually happens a lot,” Shawn says to the doctor in a not-sohushed whisper. “Lots of little fears.”

Dr. Miller nods, trying to distract Ezra.

“Come with me,” she says, gesturing to a small table.

For the next twenty minutes, she engages Ezra in a succession of tests: He draws shapes; he stacks wooden blocks; she shows him a series of pictures and asks him to explain what is happening in the sequence. Ezra mostly repeats the questions, or fragments of them—“What do you see?” “What are they doing?” He won’t sit long at the table, instead wandering around the office, his back to the doctor as she speaks to him.

I don’t understand most of the tests, and can’t discern what would constitute success or failure, so it’s difficult to know how to react or feel as I watch. I experience a tangle of emotions: Half of me is desperately rooting for Ezra, as if my kid’s in a soccer game and I’m cheering from the bleachers. The other half deeply wants Ezra to fail. As I sit on a couch with Shawn, observing the process, I follow Dr. Miller’s eyes, wondering whether she will recognize the same things we have been witnessing for weeks and months at home. I want her to confirm my own feelings and fears. And, of course, I want
services
.

In the midst of it all comes yet another flash of Ezra’s irrational fear. Dr. Miller is leading us out of her office and down a corridor to visit one of her colleagues. Suddenly, without warning, Ezra starts and backs up, as if a wild beast has just dropped in his path.

“What is it, sweetheart?” Shawn asks.

He covers his ears with his hands—almost his whole arms—and hurries up the hall.

“Did something scare you?” she asks.

He hesitates, then finally answers.

“That,” he says, pointing.

I look up. All I see is a drinking fountain mounted on the wall. I survey the expanse of the hallway to see if there’s something I missed.

“The fountain?” Shawn asks. “You’re scared of the drinking fountain?”

The three of us stand there a moment with him.

“It’s okay, Ezzy,” Shawn says. “It’s just a water fountain.”

He keeps his palms on his ears, looking warily at the bubbler. I plant my hands on my thighs and lean forward, drawing my face close to his.

“Ez,” I say, “what is it?”

“It made a noise,” he says quietly.

“The fountain?”

He nods, then follows Dr. Miller and Shawn down the hall. A few paces up, he cranes his neck to glare at the fountain, as if he expects it to sprout legs and chase after him. Standing there a moment, I listen carefully. In a few seconds I hear the drinking fountain make a noise—the gentle hum of its electric motor. That’s the sound that caused my three-year-old to jump in terror:
whrrrrrrrr.

At least, I think, Dr. Miller saw what we wanted her to see.

A few minutes later, we’re back in her office, where Shawn and I settle into the couch and she sits opposite us while Ezra plays alone on the floor.

“So, let’s talk,” she says. And then this: “I do think Ezra is on the autism spectrum.”

It is the first time that we hear a professional give us the diagnosis for our son, who is just over three. In years to come I will listen to many parents who describe the moment they heard those words, or words like them, and how devastated they felt. Some will compare it to a punch in the stomach. Some will say they felt like they’d had all of the air sucked out of them. They describe disbelief, denial, shock. A blow like death itself.

I don’t feel any of those things. The words hit me less as a dramatic revelation than as a step in a bureaucratic process. By the time we hear the word
autism
applied to our son, it feels almost like good news—like we’ve won some very twisted form of the lottery. It means we’ll get services
—
which Dr. Miller explains could include a variety of therapies, enrichment programs, or help from caretakers to give us short respites from Ezra’s care
.

But before we get there, we ask her to explain.

“Autism doesn’t describe a child,” she says. “It describes a set of symptoms.” No two children manifest it in the same way, she says, but Ezra has many of the characteristics: the echoing of words and phrases, known as echolalia; the repetition of words and sounds and motions, called perseveration; the lack of eye contact; the oversensitivity to sensory input—like bright lights or loud sounds, or even the sound of a drinking fountain’s motor.

I ask her for an explanation. What accounts for this odd set of behaviors? She explains it not in terms of neurology or psychology, but with an analogy.

“Imagine that everything we experience is part of a movie,” she says. “In order to see the movie, you need to run it through a projector. You and I have a projector, so we can put those frames together and watch the movie.”

I nod, listening.

“Ezra can’t see that movie. He’s just got a hodgepodge of individual frames. When he tries to run it through the projector, it doesn’t work. It’s all fragmented. He can see an image here, an image there. But he can’t put it all together and make sense of it all.”

I find the analogy at once helpful and disturbing. It gives me a rough understanding of what is troubling my son, and why he seems to experience a fragmented, distracted reality.