Following Ezra, page 11
Each obsession arrives mysteriously and unannounced, like a phantom that sneaks into our home in the night and seizes my son, snatching his focus. I cannot predict when one will depart and another will arrive. Nor can I ever imagine what might catch his attention next.
After Thomas comes Gumby. Gumby, the bendable green clay man. We are visiting the home of one of Ami’s best friends when Ezra sneaks away to explore on his own, and emerges from one of the bedrooms holding a flexible Gumby figure he has stumbled upon. None of the children seems particularly attached to the toy, so the parents suggest that Ezra take it home. It quickly becomes his constant companion. He carries it with him to school, to the park, to the supermarket, and to bed.
Unlike Thomas, Gumby is unheard-of among the preschool set. To them, Gumby is practically extinct, a toy that has gone the way of record players and Lincoln Logs. Ezra doesn’t care (or notice) that his peers are taken with Game Boy and Yu-Gi-Oh! Ezra likes Gumby. Something about the simple body, the bright color, the fixed smile, and the friendly eyes appeals to him, and he wants more.
I search on eBay, placing bids of a dollar or two on two-inch rubber figurines that anonymous strangers are discarding from their garages: Pokey, Gumby’s orange horse sidekick; a pair of red bad guys called the Blockheads; and Goo, a blue, yellow-haired, bloblike mermaid. Ezra celebrates each new arrival. Late at night, in the glow of the computer monitor and in the midst of bidding wars over hunks of rubber, I occasionally pause to wonder why I am doing this—why I am helping my son to pursue his eccentric interests. Other boys Ezra’s age are trading Pokémon cards or are starting to play soccer and learn karate. When Ezra pulls out his Gumby collection, they just stare, as if he has pulled liverwurst from his lunch pail. As Ezra accumulates characters and videos and builds a mental storehouse of Gumby’s animated adventures, he is doing so entirely alone.
Of course, Ezra doesn’t even realize how isolated he is. One Saturday afternoon, I am walking in the neighborhood with him when we cross paths with a doctor we know.
“Say hello to Dr. Becker,” I whisper to Ezra as we approach.
He smiles. “Hello, Dr. Becker!” he says with enthusiasm. “Do you know about Gumby?”
The man just looks puzzled.
It isn’t difficult to see what captures Ezra’s focus and brings him comfort. His sensory wiring makes normal sensations painful: He covers his ears at sudden noises and seems agonized by eye contact. Gumby doesn’t change much, barely moves, and asks nothing of him. It is Ezra’s small effort to exert some control, to make his world easier to take.
That might also explain the red period. For two years of his life, Ezra insists on wearing only red clothing: red tops, maroon sweatpants, bright red Stride Rites. He has a red fleece jacket and a red backpack and red sweatshirts. It starts with shirts—in particular, a red T-shirt he began to favor around age four. After a while he insists on that shirt exclusively. If Shawn or I try slipping another one over his head, he wriggles out of it, shouting, “Red shirt! Red shirt!” We buy him a half dozen red shirts. On days at the end of the family laundry cycle, when the red items are scarce, he wails and squirms and tosses clothing across the room.
Anytime he has a choice of color—crayons, felt markers, bedsheets, baseball caps—he chooses red. He insists on Red Delicious apples, ripe red tomatoes, Hawaiian Punch Slurpees at 7-Eleven, cherry Popsicles at the park. He methodically sifts through the Froot Loops like an archaeologist searching for treasure to separate out the red ones. He favors red characters in movies and TV shows—Lightning McQueen, the race car in Cars, Bob the Tomato in Veggie Tales, the entire family from the Pixar movie The Incredibles. He literally leaps with excitement when fire engines race by. Not because of the sirens and lights; he is simply thrilled to see so much bright red paint all in one place.
The red phase has its advantages. It is easy to shop for him, less stressful choosing his clothes in the morning, and when he wanders away from us and the other boys—as he so often does—at the supermarket or the park, we have only to search for the red blur streaking past.
Why red? I sometimes ask him. Ezra never has a reason. He just likes red. Press him more and he says: “It’s a bright color.” Ezra doesn’t like surprises, resists change, and craves sameness.
Yet his obsessions change unpredictably and mysteriously, coming and going like seasonal influenza viruses or diet fads. I can never discern why he grabs onto a particular fixation, can never predict when he will abruptly drop it, and can never imagine what he might seize upon next. Mysteriously, Thomas gives way to Gumby, Gumby to Veggie Tales, The Simpsons, and Star Wars, Star Wars to geography. For a while around age seven, he obsessively draws maps of the entire Western United States from memory, neatly fitting Montana into Idaho, precisely interlocking the panhandles of Oklahoma and Texas, producing detailed hand drawings with remarkable recall over and over and over.
Then come breakfast cereals. It isn’t so much about eating them. Ezra talks about Cheerios and Cap’n Crunch, reads their boxes, commits their ingredients to memory, yammers about their mascots, and launches into discourses about cereal taxonomy, drawing elaborate family trees of the Kellogg, General Mills, and Post clans. Toucan Sam—the Froot Loops spokesbird—and the Trix rabbit feel larger than life to him. He treats the nutritional panel on Rice Krispies and Life like sacred texts, reciting calorie counts and grams of sugar per serving like holy mantras.
Visiting the homes of friends or relatives, Ezra blurts out a question to the first person he encounters: “What kind of cereal do you have here?”
Usually he is met by stunned silence, as the host tries to make sure she has heard correctly. “Cereal?” she says. “Oh, can I get you a snack?” By then, Ezra has scurried past and found his way, uninvited, to the kitchen, where he is rapidly opening and shutting one cupboard after another, quickly scanning in single-minded pursuit of Cocoa Krispies.
“You want a cookie, sweetie?” the hostess will say. “How about some yogurt?” The first couple of times this happens, I am as mystified as anyone. I feel alternately chagrined at his behavior and frustrated that I can’t figure out how to turn off whatever it is that compels it. I understand that it has little to do with eating cereal. Ezra simply feels a need to see what products are there. Being in a house without knowing what cardboard boxes lurk in the cupboards fills him with an intolerable anxiety. That knowledge makes his world more complete. Weeks or months later he will spot adult acquaintances at the library or in the drugstore and recollect their breakfast choices with perfect recall.
“Hi, Bonnie,” he says. “Do you still have Post Honeycombs?”
Those encounters leave people both stupefied and charmed. And so am I. As Ezra grows and develops, I live with a juxtaposition of feelings: concern about what might capture his fancy next and fascination and pride in my son’s ability to master a topic and use it to engage with other people. Even if that subject is breakfast food.
I do understand the instinct so many parents have to fight battles, trying to nudge children toward more mainstream pursuits. I gauge our other sons’ progress by the kinds of standard measurements most mothers and fathers use: We have watched Ami’s evolution through the ever-larger trophies he collects at the end of each baseball and soccer season, a series of student government positions, and friendships; Noam rises through the ranks at the karate studio, each new belt and patch marking another level of accomplishment, and makes his way through the Suzuki violin book, showing ever-increasing ability and focus. Tracking Ezra’s advancement is different. With each passing month and year, he grows more singular.
At some point I realize that is precisely the way to build a relationship with my son: through the trains, the Gumby figures, the endless trail of red. Instead of seeing his obsessions as traits to change, Shawn and I come to view them as opportunities to build a bond—a quirky, unpredictable, whimsical bond, to be sure, but a strong one. Instead of lamenting that we can’t have an ordinary conversation with our son about the Dodgers or sitcoms or what happened in school that day, we join him. We follow his lead.
Sometimes that brings me to unexpected places. I find myself sending my hard-earned dollars via PayPal to a guy in Missouri selling decadesold clay-animated characters, or standing in line at the Target store, my shopping cart filled with red jerseys and pajamas. Sometimes I pause and wonder whether we are doing the right thing.
Over time, though, I come to realize a reward: Ezra understands that another human cares about what he cares about. Slowly, over time, our connection grows, and so does his potential to have other relationships with people, friendships based on something more than Gumby.
That is why it is worth enduring what comes to be known in our family as the Homer incident—that awful outing to the Aahs!! store, an adventure that concludes when I finally drag him, sobbing and wailing, across Westwood Boulevard and back to the car. “I just wanted the Homer!” he keeps crying, his face distorted in exaggerated pain, his hands clenched with tension and pleading.
“I know, sweetie,” I tell him, trying to calm him down. “I know it’s hard.”
He cries all through the fifteen-minute drive home, and then runs from the backseat of the car across the lawn and into the house, slipping silently into the bedroom he shares with his brothers.
After a few minutes, I go in and find him in his top bunk, the covers stretched over his head. When I pull them off, his eyes are red from the sobbing.
“I wanted the Homer so bad,” Ezra says.
“I know,” I say. “Sometimes you don’t get what you want.”
That evening, I offer Ezra a way for him to earn the Homer doll he wants so dearly. I draw up a chart with twenty-eight boxes and tell him that if he can control his behavior and avoid those kinds of tantrums for four weeks—and curtail the begging—then maybe we can venture back to Aahs!!
“I can get the Homer?” he asks, brightening for the first time all evening.
“If you’re good.” I point to the chart in my hand. “Can you be good for four weeks?”
“I can be good.”
“No talking about the Homer?”
“I will be good,” he says, and, in seconds, he stops crying. His entire countenance changes, as if a demon that has been possessing him has fled, leaving the same gentle, sweet boy who accompanied me to the store a few hours earlier. Then, in a calm, singsong voice, less ecstatic than relieved: “I can get the Homer.”
Every evening that month, when I get home from work, Ezra excitedly reports to me that he has had a good day. Whenever he starts asking for the doll, I raise a finger or an eyebrow in warning—and he stops.
Four weeks after the disaster, the two of us pile into the car and drive back to the Aahs!! store. Together, we walk into the store. Together, we stroll to the Simpsons display. I reach up and grab the doll for him, and hand my charge card to the surly woman behind the register, who, I am thankful, doesn’t seem to recognize us. We walk out into a warm Los Angeles evening, I clutch Ezra’s hand, and he hugs his new two-and-a-half-foot-tall yellow doll.
“I got the Homer,” he says, matter-of-factly.
“Yep,” I say. “You got the Homer.”
CHAPTER EIGHT
Typing Lessons
When Ezra is six years old, my editor at the magazine calls with an intriguing assignment. He wants me to interview a boy who cannot speak. Tito Mukhopadhyay has made international headlines for an extraordinary ability: Though his severe autism renders him unable to utter a meaningful sentence, he is composing sublime poetry that reveals a complex and unusual intellect. Tito and his mother are visiting Los Angeles from their home in Bangalore, India, so that scientists can benefit from his unparalleled ability to explain the workings of his mind.
I have covered scores of heartrending human-interest stories for the magazine. This one is different. This time I bring my own questions.
I feel excited and curious as I arrive on a warm December afternoon at the white stucco apartment building just off Hollywood Boulevard. Only a few blocks from the tourist bustle of Grauman’s Chinese Theatre and the Hollywood Walk of Fame, it seems an odd home—even temporarily—for a boy from a small flat halfway across the world. Tito’s mother greets me. Soma is in her early forties, tiny and self-assured. She introduces me to Tito, fourteen and in the midst of an adolescent growth spurt. He is a bundle of tremors and paroxysms, in constant motion and with eyes that seem permanently locked in a far-off gaze. Immediately I recognize shades of Ezra. Tito does not speak, except for some occasional phrases, almost whispered.
While Tito paces the small living room, gazing at his hands fluttering in front of his face, I interview Soma. She tells me how she ignored doctors’ early warnings that Tito would never be able to communicate in a meaningful way. She watched Tito stare intently at a calendar, clearly focused on understanding it. Then she taught him how to count and to read the letters of the alphabet on a paper chart. She read him one of Aesop’s fables when he was three, then asked him what it was about. He pointed to the letters on the chart: C-R-O-W.
“Once it started,” she says, “there was no limit.”
Instead of giving up on him, she began reading to her son from classics—Dickens, Hardy, and Shakespeare—confident that, although his body showed almost no outward sign, his mind was taking it all in.
I think about all of the times I have watched Ezra’s eyes and wondered what he is thinking, what he was feeling, what he understands. I envy Soma’s maternal instinct and consider the pure faith that must have driven her. I try to imagine what must have gone through her mind as she sat in her Bangalore home and turned pages, day after day, reading A Tale of Two Cities to her mute little boy as his body rocked and convulsed and his eyes stared off into the distance.
Soma tells me how she taught her young son to write, first fastening a pencil to his right hand with elastic bands and slowly guiding him as he traced the alphabet on paper. Over months and years, the boy scratched out one letter at a time in broad, uneven strokes as his mother sat by his side offering encouragement. In time, he was writing poetry—about trees, trains, and how he experiences life.
“May I ask Tito some questions?” I ask Soma.
She prompts her son to sit. He settles beside me on a couch. I hand him a legal pad and a pencil. Soma sits on his other side, issuing verbal prompts—“Go ahead! . . . Next, please!” The combination of his flailing body and distant look give a sense of a kind of wild, untamed energy; the apartment can barely contain him. When he begins writing, he reveals himself as refined, clever, and sophisticated. Though I am a quarter century his senior, I feel like I am drinking in wisdom from an older, wiser soul.
I ask why he moves around so much. He explains that he cannot feel his body unless it is in motion. Best of all for him, he says, is being submerged in water. I think of Ezra, who thrives in the bathtub, who opens up and communicates in swimming pools in ways we have not seen anywhere else.
I ask about eye contact, and Tito tells me that his brain is incapable of using more than one sense at once. “I can either see or hear,” he writes. “I cannot do both at the same time.”
In the midst of the interview, Tito stands up without warning and walks across the room. Soma tries to guide him back, saying, “Sit, sit!” and firmly nudging him, but he moves toward an open window, apparently drawn by a gentle wind sweeping into the apartment. He looks upward and smiles, the way golden retrievers delight in catching a breeze in a moving car.
When he returns to the sofa, I tell him about Ezra. I ask him to explain why my son is constantly asking lately whether faces he sees are happy or sad.
“He’s stimming on the question,” Tito writes. Stimming. In autism circles, it’s shorthand for self-stimulating behavior—repetitive movements that somehow prove arousing. I have never thought of Ezra’s incessant questions this way.
“You mean he knows the answer,” I say, “but it makes him feel good to ask?”
“Yes,” he writes.
I have more questions, but Tito, then thirty minutes into the interview, can no longer sit still for long enough to keep writing. He’s asking Soma for dinner, and he doesn’t have the focus to continue. His mother beckons him back, but then apologizes. I assure her it’s fine.
Leaving the building, I walk up Hollywood Boulevard, clutching the pad with Tito’s writing. The pages are much more than the notes I will need to write my article. I feel like I’m carrying something sacred.
Part of what makes the papers so precious is the promise they hold for Shawn and for me. I have long believed that Ezra has more thoughts than he is able to communicate. I understand that his habit of verbal dumping conceals what Ezra carries deep inside: a lucid mind, an eager soul, a yearning to connect. As he repeats his Winnie the Pooh line for the hundredth time, I have looked into his eyes, certain that something else is going on in his mind. Part of me feels disappointed that I couldn’t ask Tito more questions about Ezra, but I also realize that another boy, no matter how brilliant, cannot explain my son to me any more than doctors or therapists or books can. I will need to find my way in, just as Soma did.
When I get home, Shawn and the boys are waiting for me for dinner. Four of us sit down, and Ezra leaves his chair empty, as usual, moving about the house, flapping his arms, and entertaining himself. Stimming. As I look at him, I don’t see the six-year-old boy, but try to imagine him at Tito’s age, a young man entering adolescence. I wonder: When Ezra turns thirteen or fourteen, what parts of himself might he be able to share?
I ponder the irony that Tito cannot speak, but can be so articulate, while Ezra can talk easily, but so much of what he says is . . . stimming. I wonder, if I could get him to sit for long enough to write or type, what profound worlds might my son reveal? While Ezra has been watching Disney videos and Bear in the Big Blue House, should we have been reading him Shakespeare? Have I already failed him by not undertaking the kinds of heroic, selfless measures Soma has?
