We had a family membership at the “new” YMCA in downtown Durham, and enjoyed the juice bar in the lobby and the aquatics center, with its two huge pools and ceramic tile hot tub. There were steam rooms, and saunas, and child-care. I had never visited the “old” Y, until I went to watch Sarah compete in Special Olympics. It was a block away from a once busy strip mall, where dark windows faced an empty asphalt parking lot tufted with clumps of grass struggling through the cracks. At one end of the long low building, a Salvation Army Store had opened. Next door, a storefront tabernacle had closed.
On a drizzly Saturday morning I was standing in the gym of the old Y with the other parents. Sally and I were waiting for Sarah to do her routine. The windows were way up near the ceiling. Small and dusty, they gave a faint amber glow. The air had a subtle, pungent smell of stale sweat and a dry, autumnal smell of heating ducts. An astringent note of chlorine floated in from the small, tile-lined pool that was down the hall. John and Sam had gone to the other gym, to watch a pickup game of basketball.
In any competition, someone wins and someone loses; that’s why they keep score. In Special Olympics, the judges have stopwatches and scorecards, pens and paper. Everything is carefully tallied and recorded. But care is taken that there are no “losers.” The participants are carefully grouped by age and ability, and the lowest score in a given event has to be within 10 percent of the highest. Since athletes are grouped by ability, everyone competes against people with similar capabilities. In basketball, for instance, an athlete who couldn’t compete in an actual game can compete on individual skills: target pass, 10-meter dribble, and spot shot.
Everyone gets a ribbon or a medal, and everyone gets a chance to stand on the podium. Most of the athletes understand that a medal is better than a ribbon, and that gold is better than silver, which is better than bronze. Many of them keep meticulous track of their standing in the competition—how many pounds they can deadlift, their best time on the 100-meter backstroke.
Good sportsmanship is stressed, and it’s rare for a gold-medal winner to lord it over a competitor who was given a ribbon instead of a medal, but it sometimes happens—it’s human nature. Some of the local athletes will advance to regional and state competitions. Some may go to the national competition, or even all the way to the world games.
Sarah had never been that competitive, and didn’t seem to care much if she won or lost. And it didn’t matter that much to Sally, or me. We were there to have fun.
A small-framed woman standing next to me asked, “Which one’s yours?” She had fine dark hair pulled back in a yellow scrunchy. I recognized her but couldn’t remember her name. We must have met at Special Olympics last spring.
Sally, who was talking to two other moms a few feet away, knew all the kids’ names, and the names of their moms and dads. Siblings, too. After an event, she’d refer to someone’s kid by name, and I’d stare at her with a blank expression, and she’d say, “You know her. The one with the two long braids down her back. And the crutches that fit around her arms.” Sally would clamp her hand around her forearm to demonstrate. “Oh,” I’d say. “Her.” Sally would then go on to tell me how her mom had to write a letter to the school system, to make them provide a physical therapist.
“Sarah,” I said to the woman next to me. “She’s the next one up.” With my chin, I gestured toward my daughter. “Yours?”
“Marybeth. She just went.” The woman smiled toward a gangly girl sitting on a folding chair, her feet on the crossbar, her knees prominent, bony. There was nothing that looked dramatically wrong with her, but her neck extended just a little too far, and her ears were just a little too high. She sat with her mouth open. She didn’t talk with the girl next to her, or watch the other contestants.
“She did great,” I said. After her event, each of the three judges sitting behind a long table had held up a card: 6, 7, 7. I hadn’t been to enough events to know if that was a high score or a low one. Marybeth didn’t have Down syndrome or cerebral palsy. No other syndrome I could recognize. During her routine, she’d moved slowly, as if she’d been overmedicated; she had done all of the moves precisely, but with the same indifference with which she sat with her hands in her lap. After her routine, she sat with her face turned slightly upward, as if watching dust moving slowly in the air. I wondered what had gone wrong.
“How old is she?” I asked.
“Nineteen.”
I nodded, and watched the child who was going before Sarah. Like Sarah, this girl had Down syndrome, but her face was less animated, and her body movements slower. She had rounded shoulders, a wide, pear-shaped body, and large fleshy thighs. Sparse bangs spread across her placid, unwrinkled forehead. She lifted a large red rubber ball and lowered it, without any apparent anxiety that she might mess up, and no excitement that her mom and dad, younger sister, and grandparents were there to watch her. She tossed the ball in the air, maybe two or three inches. Caught it. She gave a workmanlike performance, plodding though her moves.
“How long has Marybeth been doing Special Olympics?” The music stopped, but the young woman continued her routine, her breathing audible.
“Since she was ten,” she said, without turning.
I nodded again. “Sarah’s been doing it a couple of years. She’s eleven.”
“She’s a cutie.”
“Thanks.” The heavyset child tossed the ball and caught it one last time. We were lucky Sarah hadn’t gained a lot of weight.
The girl waited for her score: 6, 7, 6.
“Does Marybeth live with you?”
“We’ve been looking at group homes.” She turned to look at me. “And we’ve thought about starting one. My husband’s a contractor. He could adapt a house in the neighborhood. Find a few other families that could go in on it.”
“Sally and I have talked about that too,” I said, “but she thinks it would be hard, hiring staff, working out the benefits, salaries.”
The other mom nodded. “Still, you’d know things were being done right.”
I nodded.
“Of course, we’ve not done anything so far,” the mom said. “Except talk about it.”
“We’ve got Sarah on a waiting list,” I said. “Over in Chapel Hill.”
“RSI?” she said. “We’ve heard good things about them.”
“The group home we visited was nice,” I said. I was pretty sure we were talking about the same outfit. It had been a couple of years. Sally would know.
“Sarah’s eleven?”
“We heard it could take years for a name to make it to the top of the list, so we went ahead and put her name in. If she’s not ready when her name comes up, her name just floats up there near the top. We figure she’ll move when she finishes high school. Her brothers will be going on to college, and we anticipate that she’ll probably be ready to move on, too.”
“How’s Sarah doing in school?”
“She’s in a self-contained classroom, but takes art and gym with the regular kids.” Admitting that our daughter spends most of her day in a special education class, instead of full inclusion with other kids, made me feel as if I’d failed, especially when talking to another special needs parent.
Some parents insisted that their kid be included in regular-kid classes, and that the school provide an “inclusion assistant,” a full-time person to help their child keep up. The problem was that there weren’t enough inclusion assistants to go around. And I felt as if Sarah was already getting a lot of extra help from occupational therapists, physical therapists, speech therapists, and special education teachers. To threaten a lawsuit against the local school system, forcing them to pay someone to stay one on one with my child, seemed unreasonable. And I really didn’t think Sarah would do that much better in a regular-kid class, even with someone sitting beside her, whispering encouragement and explaining assignments.
She needed to continue working on her basics. Simple math and reading. She could read a “chapter book,” cover to cover, one word at a time, sounding out new words, reading the words she knew with fluency. It sounded as if she was actually reading. But if you stopped her after one page and asked her what it was about, she didn’t know. I didn’t think that sitting in the back of a classroom of regular kids would make her read better, or feel better. Or get along better. But maybe I was just rationalizing.
“Same with Marybeth.” Her voice sounded tired. “She’s in an EMH class, but a lot of the other students seem more EBD.” There are a lot of acronyms to learn in the special needs community: TMH meant “trainable mentally handicapped,” and in those classes students worked on life skills: dressing themselves, eating with a spoon, tying their shoes. EMH meant “educable mentally handicapped,” and in those classes they learned academic subjects: math and writing. EBD meant “emotional–behavioral disabled”—I knew there were specific criteria for EBD, but the EBD students seemed like regular kids who were too disruptive, needy, or noisy to be in with other students.
When I’d visited Sarah’s special education class, most of the students seemed placid, earnest, and intellectually disabled. Other children looked normal but needy, intrusive and kinetic. Sarah tried to show me her daily journal, with its carefully penciled misspelled words, and drawings of princesses with dots for eyes, small noses, and oversized hands with five bulbous fingers. Some normal-looking kid came over, grabbed my hand, and insisted that I look at his finger painting.
Parents of EBD kids have complained that their kids are stigmatized by being put in classes with kids like mine. Parents of EMH kids wish the EBD kids wouldn’t use up so much of the teacher’s time.
“We’ve been having some problems,” the mom said.
“Oh?” I didn’t know if it was because we’d been lucky or if we’d just been too easily satisfied, but Sally and I hadn’t had many problems with the Durham Public Schools. The school system was required to have an IEP—an Individual Education Plan—for each child with special needs. A committee met twice a year, to list goals and objectives. “By the end of the term Sarah will be able to add and subtract sums up to 100.” Or, “By the end of the term Sarah will be able to write a simple sentence, with no more than two spelling mistakes.” Once she’d met all of the objectives, another set would be written.
When Sarah was eight years old, her physical therapist told us that she didn’t need PT any more: she walked up and down stairs without holding a handrail, and managed all of the physical tasks required to go to school. We took it as a good sign, that she’d progressed, rather than as evidence that the school system was withdrawing services or shortchanging our daughter.
“Marybeth has been getting over-affectionate.”
“Over-affectionate?”
“Oh, yes.” The other mom turned to face me, eyebrows up, a wry smile on her face. “Once puberty hit, it was ‘Katie bar the door.’ ”
“Yikes,” I said, looking over at the lanky teenager, now sitting with her feet in her chair, her arms around her skinny knees.
“Yeah, no kidding.” The mom shook her head. “Her teacher called us last week. And at home, she’s been talking about sex. A lot.”
Sally walked over. “Sarah’s up next.” Sally made an “eek” expression and hunched her shoulders, in play-nervousness.
I smiled back. No one in our family was that competitive about sports, but I knew Sarah would do better than 6, 7, 7. She’d get at least an 8 and a couple of 9’s.
Stepping onto the mat, Sarah had the proud and jaunty walk of gymnasts on TV. In her leotard—blue and red, with white trim—she looked confident and poised. She stood in front of the judges’ table, her head tilted just half a degree, as she waited.
The music started, and Sarah stood a bit straighter and then, holding the red rubber ball in both hands, she raised it above her head and swept her arms to the right, making a slow circle, like the hands of a clock. She stopped with the ball in front of her chest. Her elbows were sticking out to the sides. I didn’t know if they were supposed to be, or not. She took three large steps forward, and stood for a moment with her feet together. She then extended her arms, holding the ball straight out in front, and took three steps backward.
Sarah was moving quickly. Her coach held her arms out, palms down, making a “slow down” motion. Sarah tossed the ball about a foot in the air, and caught it and pulled it to her chest. She then held her arms straight out and lowered them, letting the ball roll from her chest down to her hands. There was a brisk efficiency to each of her movements, and she seemed to be enjoying herself. At the end of the routine, she extended her right leg, and held the pose. The music continued on for two more beats, then stopped.
“Wow,” the other mom said as we all started clapping. “She did great.”
I waved at Sarah, who smiled but didn’t wave back. “She did, didn’t she?” I said.
Sarah stood in front of the judges’ folding table and waited for them to lean over, make notations on a spiral-ring notebook, and then flip the white cardboard squares over, showing her score: 7, 7, 7.
I looked over at Sally, and then back at the numbers. That was at least a 9, 8, 8, or at worst, an 8, 8, 8. But Sarah seemed happy enough with her score, and Sally seemed pleased. I thought it was better than a 7, 7, 7. Way better.
Sarah walked over to where her team was sitting. Her shoulders were back and her chin up, as if still performing. She smiled at Clarisse, a tall African American girl with her hair brushed back into a blue hairband. Clarisse clapped her hands and shouted, “Go, Sarah!” Clarisse was Sarah’s best friend. She had dark, wide-set eyes and a quick smile. There was just a little something “off” in the tone of her voice and the cadence of her speech, but she was outgoing and had a wry sense of humor.
Sarah sat cross-legged, and Clarisse patted her on the back. I was glad to see that Sarah’s friends were on the less impaired end of the spectrum, rather than the profoundly so. Sarah was polite to all of her peers and clapped when her more disabled teammates walked up to stand in front of the judges’ table. But just like the popular kids when I was at Ferndale Junior High, Sarah seemed to have an ease and confidence about her standing in her group.
In each of her events, she did better than some, not as well as others.
The awards banquet was covered-dish: paper plates, quart bottles of soda, and takeout boxes of fried chicken from several different fast food chains. I noticed a couple of classic standbys: string bean casseroles with onion-flavored snacks sprinkled across the top, macaroni and cheese.
Sarah’s name was called, and she stepped up onto the platform without looking right or left. She ducked her head, her facial expression solemn, as her coach draped a ribbon around her neck. When she stepped down, she looked to her mom and me. She grinned and gave us a quick, excited wave. By the time it was over, she had two blue ribbons and one red, four certificates, and two medals.
I turned toward Sally, who was talking with a mom next to her. They were talking about Sibling Support Group, a monthly program for the siblings of children with special needs who met in a church meeting hall and ate pizza. They were supposed to share their feelings about having a sibling who was intellectually disabled.
“I have to force Roger and Elizabeth go,” the other mom was saying.
“Same with Sam and John,” Sally said. She turned to me and patted my leg. “Getting bored?”
“No,” I said. “Yes. “
Sally and her friend laughed.
“Boys,” the other mom said with an exaggerated roll of her eyes. They laughed again.
All these moms working so hard, I thought. All this energy to give all of their kids the best shot they can.
I had no idea how to be a Special Olympics dad.
Sarah walked over to where Sally and I sat. She had changed into a white top and pink knit pants.
“Let me see,” I said, gesturing toward her medals.
“Mom first,” Sarah said, laughing loudly.
I chuckled, not sure I got the joke.
Sarah handed a silver medal to her mother. “Ladies first,” she said to me. “It’s polite.”
“Oh,” I said. “My mistake.”
“Yeah, yeah,” Sarah said. “Always in a hurry.” She handed the bronze medal to me. It felt light in my hand. “Good job,” I said to Sarah, holding my arm out for a hug.
Sarah moved closer and leaned against me. “You ready to go home?” she asked.
“In a minute,” I said. “Let me savor the moment. Bask in your glory.”
“Yeah, right.” She pulled away and looked at me, and smiled. She reached for her ribbons and medals. “I’ll put them on my bulletin board up in my room. I’ve got some thumbtacks.”
As I pulled out of the old Y’s parking lot, Sally and Sarah chatted about her performance, and the other contestants and their families. They continued to talk as we drove past the half-empty mall, with its still-vacant lot.