The tires of the station wagon thumped across the expansion joints of the bridge crossing the Ohio River. The steel beams above formed angular shadows that crisscrossed the pavement, making a syncopated strobe of the winter morning sun. “Sarah,” I said, pointing through the windshield toward an Orthodox church. “Do you see the golden roofs?”
In the back seat, Sarah leaned forward against the straps securing her in her car seat, and squinted. She gave up and looked up at me in the rearview mirror. She must not have been able see over the front seat. We were heading for a different church, the Mother of Sorrows, for Sarah’s Early Intervention class, a preschool for children with developmental delays, but I wished she could see the glints of sun from the gold bulbs rising above the trees. They looked like something in St. Petersburg or Moscow. I winked at her.
Sarah was five years old. She returned my wink by squinching both eyes. Her nose wrinkled and her mouth twisted. Sarah was able to raise both eyebrows to show surprise, or one eyebrow to express disbelief or to register irony, but she hadn’t perfected her wink. She was working on it, though.
I was driving a dove-gray Buick station wagon my mother-in-law had given us when we moved to Pittsburgh. It had velour seats and power steering. The sides of the car were laminated with a plastic film that was meant to look like wood.
We turned down a steep and narrow street of two-story houses with aluminum awnings and close-trimmed shrubs. We passed a house with blue canvas lawn chairs leaning against a cinderblock foundation, and asphalt shingles crumbling at the edges of the roof. We pulled into the parking lot of the Saint Peter’s Mother of Sorrows church, and got out of the car.
Sarah had a jaunty walk, as if she were eager to see what was next. I took her hand, and we walked across the street to the tan brick church. I didn’t know what to expect, or where to go, but Sarah did; Sally had been bringing her here for a year.
Sarah led me to a classroom on a lower level, with a row of windows at the ceiling. The room had the feel of being halfway underground—a partial basement. The walls were cinderblock, painted a glossy white. The blinds were opened to bring in as much sun as possible, and light slanted downward across the floor.
Child-sized chairs formed a circle in the middle of the room. Sarah’s classmates sat next to their moms, who sat with knees in the air, pocketbooks on the floor next to them. I smiled and nodded at the teacher and to each of the five mothers, careful not to stare at their kids, but also careful not to look away.
I couldn’t help comparing Sarah to the other children, and at first glance, she had much more sparkle than any of the other children.
One boy didn’t have a mom next to him. Must be Kevin, the child we were supposed to take home with us, so his mother could come by our house to pick him up that afternoon.
“Hello,” I said to him. “Are you Kevin?”
His neck was twisted to the right, and downward, tucking his chin down almost to his collarbone. To look my way, he leaned his body back, and raised his eyebrows as far as he could. His forehead wrinkled with the effort, and his eyes bulged, giving him an expression of surprise, or pain. He looked at me, his head bobbing slightly.
“You must be Sarah’s dad,” the teacher said. “I’m Ms. Hines. Kevin’s mom said that you’d be taking him home.”
“Yup.” I gave Kevin a thumbs-up. “Glad to give you a ride.”
His head bobbed. I couldn’t tell if it was a nod or a twitch.
Sarah sat beside me and looked at Ms. Hines, who was standing next to a felt board on a low, A-frame easel. I had a feeling she was ready to begin class, and that we might have been late. I snuck a look at my watch. Dead on 9 am.
“Good morning.” Ms. Hines spoke clearly and distinctly. She smiled.
“Good morning,” the mothers and I answered in a chorus that matched her tone. Sarah’s response was just half a beat behind. Sarah had to try her best when she was talking, because her speech could be indistinct and difficult to understand. Her voice had a torque that I’d noticed in the speech of other children with Down syndrome. Not nasal exactly. Not thick-tongued. But there was a brogue, or a lilt or a slurring that became more prominent when she was tired or talking too fast.
Ms. Hines had long, delicate fingers. She held small patches of colored felt. Her movements were slow. Careful. Deliberate.
“Do we remember what we went over last week?” She looked at each child. “Our shapes and colors?”
Kevin, a few seats over, made a guttural sound. His neck muscles tightened and his mouth opened wide, and he twisted his head up and further to the right and shrieked. It was a loud, squawking sound, as if a sheet of tin was being torn loose from rusty nails.
I flinched at the sound, and then glanced around. No else seemed to notice the shriek. I was embarrassed at having been startled, but no one seemed to notice that, either.
Kevin’s eyes widened as the shriek scaled up further, and then subsided. His muscles relaxed.
Ms. Hines paused for another moment, as if to make sure Kevin was through. She smiled at him and continued. “We have a green square.” She held a piece of felt between her forefinger and thumb. She turned right, and left, to make sure everyone saw it. “And a red circle, a blue star, and a yellow triangle.” She held each shape up in turn.
A girl sitting across from us was looking down at her hands in her lap. She also had Down syndrome. When she looked up, her face was slack, as if gravity had more effect on her expression than her nerves and muscles, as if inertia had more power than her thoughts and feelings. Her hair was thin and mousy brown. Her mouth was open and her tongue protruded slightly, just covering her lower lip.
I had an impulse to reach over and tap her tongue with my finger. When Sarah was just months old, a physical therapist told us that if we tapped Sarah’s tongue every time we saw it hanging out, she’d quickly learn to keep it inside her mouth. It wasn’t that the tongue was too big, the therapist told us; it was habit, or decreased muscle tone, that made the tongue protrude.
In the past, some experts advocated trimming the tongues of people with Down syndrome. I couldn’t imagine cutting off part of Sarah’s tongue. An article in a medical journal from the 1970s shows photographs and drawings of a nine-year-old girl with Down syndrome who had undergone six operations in the same day.43 The epicanthal folds were removed. The slant of her eyes was corrected. The bridge of the nose was lifted with an insert. The tongue was made smaller. The receding chin was corrected with an insert. Fatty tissue under the chin was scraped away. A line drawing of the procedure on the tongue surgery shows a pie-shaped chunk cut away from the front of the tongue, leaving a huge V-shaped gap that will be drawn together and sewn. Like a dart or pleat.
In the “after” photographs, the girl was prettier. But when her parents pulled the bandages off to stare into the bruised face of their daughter, did she still look like herself?
There is no doubt that if Sarah were burned, we’d do skin grafts. If she’d been born with a cleft palate, we’d have the gap in her upper lip closed. But changing her eyes, or ears, or nose, would seem like we were trying to change her identity. How could we explain it to her? If there were a new technology that could remove the extra 21st chromosomes in each of Sarah’s cells—if the Down syndrome could disappear and Sarah would be “just Sarah,” rather than “Sarah who has Down syndrome”—I would do it.
That technology, however, did not exist. Sarah would always have Down syndrome. Her slanted eyes and low-set ears gave people a cue that she was different. Hopefully they’d cut her a little slack. And if Sally and I helped her enough with physical therapy, speech therapy, Early Intervention classes, she might not “pass” as “normal,” but maybe she would be included by the rest of the world.
Ms. Hines repeated the shape and color as she placed each swatch on the felt board and smoothed it with her fingertips. “Did everybody see?” She reidentified each shape. “Do we remember?” The moms all nodded, almost imperceptibly.
“Bobby,” Ms. Hines said. “Can you show me the red circle?”
A boy stood, his face serious, cheeks flushed. In his flannel shirt and jeans cuffed up at the bottom, he looked like a farmer looking over a large field he had to plow. He walked up to the easel and stared at the shapes. He slowly raised his right hand, and then let it drop back down. He paused again and then pointed. Red circle.
“Good!” Ms. Hines’s voice scaled upward in praise. “You picked the red circle.”
Bobby slowly walked back, his stride slow. Face serious. When he got back to his seat, he put his hands on his knees. His mother, a thin woman with deep-set eyes and pink snow boots, touched his arm and leaned down to say something.
He nodded.
“Kevin,” the teacher said. “Can you show us the green square?”
Kevin’s head bobbed, and he muffled a shriek. Maybe he had Tourette’s syndrome. His facial features were symmetrical, normal, except for the wrinkled forehead and bulging eyes.
Kevin stood.
“The green square,” Ms. Hines’s voice was calm, encouraging.
Kevin leaned back at the waist to look at the easel.
“You know this,” the teacher said. “You can do it.”
The other kids looked from Kevin to the easel and back.
Ms. Hines gestured toward the felt board and nodded at Kevin.
He walked toward the easel, his body turned to the left, his head twisted to the right, gathering momentum, as if he’d lost his balance and was trying to catch up with himself. His right hand was extended, pointing at the board. When he reached the board, he abruptly stopped, his hand pointing to the yellow triangle.
Ms. Hines gently deflected Kevin’s hand down and to the left. “The green square,” she said. “Good job. You’re pointing to the green square.”
Kevin gripped a corner of the square and peeled it from the board.
“Let’s leave it here,” Ms. Hines said, prying his fingers free. “We leave the shapes on the board.”
He continued to clutch the green square.
“Kevin,” the teacher said. “We leave the shapes on the board.” She pulled harder, and the square slipped from between Kevin’s fingers.
“Good,” she said, as she turned Kevin toward his chair. “You can sit down now.”
He walked back to his chair, his arms angled slightly out to the side, if walking across the deck of a moving ship, or back to his seat in an airplane that has just hit turbulence. The teacher held the green square, which had been pulled out of shape. She tugged on it from several directions, and then smoothed it back to the board. The edges were wavy, and it was skewed into a new shape.
“Sarah,” Ms. Hines said as she turned to face the class again. “Can you show us the blue star?”
Sarah stood. She was wearing her favorite clothes: pink corduroy pants and a white turtleneck. She walked to the board and without hesitation pointed to the blue star.
“Good, Sarah,” the teacher said.
Sarah smiled as she walked back to her chair. After she sat, she let out a deep breath. She’d been nervous. I patted her leg, and then she patted mine.
The moms looked like average PTA or bake sale moms, sitting with their pocketbooks beside their feet, giving pats and hugs in encouragement or consolation.
Kevin’s mom had left a car seat, a big, bulky plastic thing with checkered padding. I wrestled it into the back seat of the station wagon, jostled it, cinched down the seatbelt, jostled it again, cinched it down again.
“Okay, Kevin,” I said, “in you go.”
He reared back so he could look up at me.
I patted the car seat with the palm of my hand.
He lurched up into the car, and climbed into the car seat. He struggled as he threaded his arms though the straps in the seat, but eventually sat there, the straps over his shoulders, his chin tucked down against his collarbone.
As we crossed the Ohio River, Kevin screeched. It was a squawking, birdlike sound, like a crow or a falcon would make.
In the rearview mirror, Sarah’s eyes met mine. She raised her eyebrows and shrugged.
Kevin’s body pulled against his seat belts, and then the screech began to wind down. The expansion joints of the bridge kept making their thumping sounds.
I looked in the rearview mirror again. Sarah winked by squinching her eyes at me. I winked back.