When my son is on the field, we all, however briefly, escape the “special needs” label.
The gift-shop owner is annoyed. From behind her counter she frowns at my 6-year-old son, who is calmly surveying the broken glass at his feet. Along with a puddle of glittery fluid and some tiny figurines, the shards are all that are left of the snow globe–shiny! irresistible!–he had snatched from its shelf a moment earlier.
“That’s my new carpeting,” the shop owner says accusingly.
“He couldn’t help it,” I blurt. “He’s autistic.” The word–the betrayal–is barely out when I feel a clutching sensation in my chest. It worsens as the shopkeeper tells me I need pay only the wholesale price for the breakage, since, as she puts it, “You have enough to deal with.”
Outside, I squeeze my son’s hand and wish I could apologize to him. He wouldn’t understand, but my daughter, who is shopping with us, does. “It’s the lady’s fault,” she says, with a third-grader’s fierce certainty. “If she hadn’t stood there talking to her friend for ten minutes instead of waiting on us, he wouldn’t have broken anything.”
She’s right. My son got fidgety, and I overreacted, violating my own rule against naming his disability for strangers. I had sold him out for the price of a snow globe.
PLAYING THE DISABILITY CARD
My son is now 9, but the gift-shop incident still flares in my memory, especially when the issue of labeling him–the need to play what you might call the disability card–arises. This fall, I registered him for soccer and explicitly identified him as a “special needs” child. I had to, if I wanted him to participate in a mainstream league. “Mainstream,” of course, is common parlance for “normal.” It signifies the routine round of school and homework, sleepovers and music lessons. And soccer. For children like my son, going mainstream successfully–“passing,” as a fellow mom of an autistic child calls it–can be tantamount to leapfrogging up Everest.
In the six years since my son was diagnosed, I have concluded that labeling a child who has disabilities is a simultaneously necessary and lazy act. You must identify “deficits” (a terrible word) in order to treat them.
And yet, if supplying the name for my son’s behavior makes my life easier, even nobler–people nod sympathetically–it also diminishes his humanity. Once the A-word is applied, he devolves, before my eyes, from an extraordinarily attractive child, who loves music and silly puns and his big sister, into The Other.
Our soccer season kicks off when a friend tells me about a league that is welcoming to disabled kids. The first official I call, a parent volunteer, instructs me to check in with the special-needs coordinator. I weigh how much information to give this unknown person. In my son’s short life, I have spun out his story for at least a dozen specialists, not counting the school district’s diagnosticians. Isn’t that enough? But I take the plunge, sort of. I tell her he has PDD.
“I’ve never heard of that,” the coordinator says.
“Pervasive Developmental Disorder.” A silence. “Well, autism. Sometimes he’s not very focused, and”–I reach for a familiar symptom –“he’s kind of hyper.”
“That sounds all right,” she says briskly. “We’ll play him down a year. That’s what my child does. She has Down’s syndrome. She’s played for two years now, and she loves it.”
I ask if she accompanies her daughter onto the field, as a sort of personal helper, but she politely brushes me off.
“I cheer for all of them,” she says simply, refusing to expose her child to my scrutiny.
“Good for you,” I say enthusiastically. “It sounds great.”
On the first day of practice, my husband, my son, and I leave the house an hour early. We had raced to finish work and dispatch our daughter to gymnastics practice. Now we are crawling through 20 miles of rush-hour traffic.
“We could have tried the YMCA league,” my husband reminds me. “Ten minutes from the house.”
“It will be fine,” I say. I have decided that long-distance soccer has its benefits. We are unlikely to bump up against anyone who knows us. I will not encounter the parent who, watching my son and his classmates in a school activity, stage-whispered to his own boy, “THAT’S THE SPECIAL EDUCATION CLASS.” To everyone but the special-needs coordinator and our coach, who has been put in the picture, my son is a blank slate. Perhaps–the irrational thought flutters up–he will pass.
Interestingly, the tendency to equate “special” with “the other” also colors the attitudes of some autism experts. But maybe this is not surprising, given the professionals’ track record in treating the disorder. Well into the 1960s, most people, even the “experts,” heeded psychologist Bruno Bettelheim’s now-famous dictum that, by withholding affection from their children, “refrigerator mothers” caused autism. In the 1970s and early 1980s, psychologists advised parents to institutionalize their young autistic children and never look back.
At the turn of the millennium, the institutionalization rate has dropped drastically. Treatments are more effective, the number of research studies has multiplied, and celebrities with autistic kids have raised awareness of the disorder. And yet, nobody knows what causes autism or has come up with a consistent cure. The frustration factor–disavowal of the patient who cannot be helped–may explain why some professionals continue to distinguish between “human being” and “autistic.”
In my least favorite article, a young medical student writes gushily about encountering autism for the first time, in a 4-year-old child. When the little boy recoils from a doctor’s stethoscope, she takes it as proof that he is a species of space alien: “The little boy began to moan–no, not moan exactly. It was … a sound I have never heard come from a child.” She had also never heard that autism is a spectrum disorder (meaning it can range from mild to severe), that early intervention is crucial, and that many small children, normal as she, are afraid of the doctor. The Journal of the American Medical Association published her essay anyway.
As we slowly progress along the freeway, I turn toward the back seat. “So, are you ready to play soccer?”
“I am all ready,” my son says. Unlike most of his activities, we haven’t talked this up too much. We haven’t had to. Last night, he tried on his shin pads. They fit, he loved them, and, delighted, he wanted to wear them to bed. I can’t remember whether it happened when I was driving him to speech therapy, or occupational therapy, or music therapy, or the special private school he currently attends, but one day, out of nowhere, he said, “I want to play soccer like my sister.”
So here we are.
FIELD OF DREAMS
The soccer field abuts a Houston Community College building that is closed for renovations. It features hard-packed dirt and sparse grass, the result of a scorching summer and rainless fall. Somehow, though, Houston’s mosquitoes have survived the drought–and are hungry.
We search the crowd of arriving kids and families for our coach, who is easy to spot in his red shirt. The name of a sports bar adorns the back. He greets us a bit brusquely, and I devise a new worry: Will our son respond to him? Obediently enough, our child lines up with a gaggle of other little boys for a kicking drill. The parents hang around, watching and slapping at their ankles. I find the most anxious-looking mom and introduce myself.
“I hope this is going to be okay,” she confesses to me. “Alex has never played soccer before.”
“My son never has either,” I say conspiratorially. We watch Alex race up to the ball and kick it in a long, high arc, like a miniature Pele.
“Attaway, Alex,” his mom calls. “Good job,” I echo dutifully, realizing that she and I are not in the same boat after all.
According to the rules of our league, all parents must exhibit positive, affirming behavior. You cannot scream advice to your child (as the Parent Manual points out, directives like “Kick it! Kick it!” are “obvious”); you cannot bawl out criticism.
Impeccable in theory, the Parent Manual has the practical effect of a gag order. Well into the season, we grown-ups sit timidly on the sidelines for fear of hollering the wrong thing. Yet none of the boys seem to miss the roar of parental voices, and the calm is certainly beneficial for my son, who always recoils from cacophony.
At this first practice, he manages to attempt the drills about half the time, but by the end of the session he is tired. He begins to ignore directions, to withdraw into himself.
The coach is patient but clearly a bit puzzled. I suspect the explanatory note he received from the special-needs coordinator was pretty vague. I also sense that his brusqueness, expressed in a growly voice that most of the boys heed immediately, is really a form of shyness.
Gamely, the coach ensures that our son tries out every skill. In his own instinctive way, he is as effective as any therapist we have visited. Half seriously, I consider asking him to record a series of edicts–“Time to get dressed!” “Brush your teeth now!” “Let’s start on your math homework!”–that we can pop into our son’s cassette player at home.
Back in the car, at the start of the long drive home, we ask our son if he had a good time. Does he like soccer?
“Yes,” he declares emphatically, as if, like those silly parents in the manual, we have just said something obvious.
Soccer games in general tend to run together for me, especially when played by young children. In my son’s league, keeping score is prohibited, so you can’t even sort their weekly outings into “won” and “lost.” Despite this rule, the boys on my son’s team are well aware that, on most Saturdays, they score more goals than their opponents. The name they bestowed on themselves–the Hotshots–has proved apropos.
My husband believes that success breeds tolerance; it helps the Hotshots ignore our son’s obliviousness to the team effort. I don’t think it matters. With 7-year-olds, there is little team effort. All the children try to control the ball, all of the time. Sometimes it rolls out of the tight scrum of frantically waving feet over to our child, who is hanging back from the action, and he gets in a tentative kick. Sometimes he aims for the right goal. Overall he does better at practices, which are more structured than competition. Slowly he learns to trap the ball, dribble it, kick it into the net. My husband and I agree that soccer has improved his gross motor skills, happily ignoring our resolution to avoid treating it as a therapeutic exercise.
Like the coach, the Hotshots don’t quite understand the nature of my son’s disability, but they come to accept him. During practice scrimmages they occasionally form a motionless semicircle, patiently giving him open access to the ball. At one game, a teammate insists that it is my son’s turn to be team captain (this honor consists of wearing a sticker that says “Team Captain”). So far as I can tell, no adult has suggested these gestures, at least not within earshot of my son, and I am grateful.
The parents’ reactions are similarly low-key. It could be the influence of the Parent Manual (“It Is True INCLUSION When ALL Kids Can Play TOGETHER”). Or maybe they have their own problems to deal with. The families on this team are less affluent than many in our neighborhood. They include immigrants, single parents, and stepparents, and everyone works full-time. When my son’s foot touches the ball, they cheer, in an acceptably restrained way. No one ever draws me aside–like the Good Samaritan in a music class he’d once taken–to suggest, gently, that his development seems delayed and have I consulted my pediatrician? For this reason alone, the soccer experiment has been a resounding success. And my son has loved playing the game, or rather, the idea of playing it, of wearing the uniform just like all the other kids.
When the clock runs out on the last game of the season, we fold up our lawn chairs and set off for the league party at one of those “family-oriented” pizza places where the cheap food is a Vegas-like stratagem for luring kids into playing the video games. When the Hotshots straggle in, four or five other teams have already arrived. Our coach emerges from the buffet line. My husband and I congratulate him on a great season, and he beams at us. “I don’t suppose you’re coaching in the spring?” I ask casually.
“No, I do T-ball in the spring.”
“That must be fun,” I say insincerely.
After the party ends, we load our children–with our son’s trophy and our daughter’s vending-machine prizes–into the car and turn onto the freeway access road. It’s the last time we’ll make this drive on a Saturday, I think, and I begin counting how many new hours have been added to the week. Five, at a minimum. Oh, luxury.
A voice from the back seat interrupts my calculations.
“When do I start playing soccer again?” my son asks.