Playing Down

We used to have Martin in “adaptive” (special-needs) soccer and karate.

The soccer group comprised six kids, ages six (Martin) through 12, and even more coaches and volunteers. Basically, each kid had a dedicated volunteer, and on top of that were a coach and an assistant coach. The coaches were energetic special-needs professionals who’ve obviously been doing this work a long time. The volunteer assigned to Martin was a patient high-school kid willing to work hard to get Martin moving. The lessons took place in a well-equipped indoor sports facility, on a Saturday morning, which is an ideal time because Martin is not exhausted from school.

The whole soccer thing was a disaster.

Martin was not the highest-functioning—that’s a stupid, despicable term, and I’m sorry I can’t find a better choice—soccer player. The group had a super-competitive Aspergery kid who sprinted every sprint fastest, shot every shot farthest, and even knew how to dribble. After each maneuver he ran to the sideline and asked, “Dad, did you see me? I was first!” There also were two kids whose attention spans were even shorter than Martin’s, and who needed hands-on physical assistance for every exercise: a wrist held while running, a foot guided to meet the ball.

I wish that Martin, in a situation like that, would rise to the occasion. I wish he would chase the Aspergery kid and try to kick just as accurately. I wish he would perform to the best of what surrounds him.

Alas.

Martin, instead, assumed every behavior we’re worked to alleviate. He ignored directions and ran where he wanted. He flopped to the ground and refused to move. The ball, he picked up and carried to the goal. The field cones, he kicked. When asked to participate properly, he whined, “No, no, no.”

It was painful to watch, and when the same scene replayed weekly, I grew to detest taking Martin to adaptive soccer.

Karate was worse still. That group was larger, probably a dozen kids, and met in a regular martial-arts center, with mirrors on the walls and a waiting area right next to the performance mats. Karate entails more instructions than soccer, which means more sitting and listening. Can Martin sit and listen? No, he can’t. And those stupid mirrors! He spent his time admiring his handsome mug while making faces. Many of the karate kids were fully engaged, executing the obstacle courses and jabs and punches. Martin used every distraction to divert himself from karate, and when he didn’t have a specific distraction, he rediscovered me in the waiting area and scampered to the edge of the mats to say, “Mommy, am I doing a good job? What am I doing? Am I doing karate?”

I started asking Adrian to take Martin to karate. Or my brother or parents to take him, whenever they were visiting.

Those were our experiences with adaptive sports.

Adjusting Upwards

For the past two years, Martin has attended our church’s “Kids’ Klub” on Tuesday afternoons. (I use quotes around “Kids’ Klub” because of Club being intentionally misspelled. Ugh. Ugly.) The “Kids’ Klub” is for all kids; in practice, Martin is the only participant with autism, and we send a special-education professional along to assist him as a sort of one-on-one aide.

During the same time that Martin was running amok on the soccer pitch and ignoring his karate lessons, we were getting updates from his Tuesday-afternoon facilitator that sounded like this: “He’s participating more every week,” or, “He really doesn’t even like me helping him anymore. I just step back and let him do his thing,” or, “During the art project, he asked one of the older boys to help him with the scissors. He said I could go do something else.”

Two different portraits of Martin were emerging: The Martin in adaptive sports, whose performance matched the lowest expectations, and the Martin in a regular church class, who was doing his best to match the typical kids. Was it a fluke?

Adrian and I decided to find out. On Saturdays, Martin attends a three-hour fun program for kids with special needs at the Jewish Community Center near our home. The JCC also has a variety of after-school activities that are open to all children, but geared toward the typically developing. Last month, I met with the director of special-needs programs (who knows Martin well), and then with the director of after-school activities (who didn’t know Martin at all), to discuss whether Martin might try attending, alone, a program geared toward typically developing kids. The director of special-needs programs said she thinks Martin is in a kind of “middle space,” still with challenges but not necessarily needing the attention of an adaptive program. The director of after-school activities said she was willing to let Martin give it a shot, though she wanted us to consider sending a one-on-one para along if the instructor decided Martin needed that help.

Finally, we all agreed on a good choice: an after-school gymnastics class for five- and six-year-olds. The group is small and well-organized, it entails almost constant movement, and Martin would be one of the older participants.

Whence My Anxiety?

I have had many painful moments in the journey we have taken since I first understood that my only child has autism. The moment I usually count as most painful came more than four years ago, late 2010, after Martin was diagnosed but before we started biomed. Martin had been attending a “Twos Club,” two afternoons a week, at the Manhattan-based, for-profit “City Kids Club” (not the real name). We enrolled Martin in the Twos Club, originally, before his autism diagnosis. Even then, we had noticed that he had trouble following directions, and didn’t seem to pay attention like other kids his age, and we were worried that he would perform poorly on his preschool admission interviews. My word, we’ve come a million miles since our days of high-pressure, well-off New York City parenting. When we signed Martin up with City Kids Club, they said they could help. They wouldn’t coddle him. They’d teach him to listen and to follow directions. In no time, he’d be in shape to get into a top-notch preschool.

It didn’t work out that way, of course. When the Twos Club let out, Tuesday and Thursday afternoons, half a dozen toddlers would sprint from the classroom and into their parents’ arms, showing off the art projects they’d made. Martin would wander out last, appearing not to notice me, shuffling under the direction of a staff member who carried his incomplete art project. The differences were becoming more apparent. And then we realized, y’know, autism.

Martin was still participating in the Twos Club when we were in the process of procuring Early Intervention services. I met with a director of our City Kids Club location. Would the services include a SEIT or a behaviorist? she asked. Maybe we could ask that person to accompany Martin to the Twos Club and help him participate? Okay, I said. I’ll see if that’s possible.

We aren’t getting a person who can accompany Martin here, I told her at a subsequent meeting. We’re going to receive center-based ABA services instead, so we’ll keep this the way we’ve been—

“Actually, we really need someone like that to come,” the City Kids Club director said. “Keeping Martin in the Twos Club without an assistant is becoming impossible. We have to assign an extra instructor to the Twos Club just to deal with Martin, and we don’t have the staff to do that for every class.”

The director and I stared at each other.

Come again? Were we being kicked out of the City Kids Club Twos Club? Holy cow. My son was about to be kicked out of an open-admission toddler program.

We had paid for the entire semester. The lawyer in me wanted to shout, “You’re kidding me, right? You’re kidding me? Because you are not going to remove my son from your program. You will allow him to participate.”

The shell-shocked autism newbie in me panicked and decided not to give the director that chance. I lied, “Martin’s Early Intervention class is going to overlap with this time, so he won’t be able to do both. Next Thursday will be his last day in the Twos Club.” The director did not offer me a refund for the remaining weeks, and I never requested one.

The following Tuesday, Martin’s second-to-last session, Samara, who had picked him up, brought me a disturbing report. At the session’s end, the Twos Club proceeded into the gymnasium area, adjoining the lobby where Samara waited, and the instructors blew bubbles for the kids to chase. The “extra instructor” assigned to Martin had clamped her hand tightly around Martin’s wrist and not allowed him to chase bubbles. She held him just to the side, where he could see the other kids having fun but could not participate. According to Samara, Martin had struggled against her and tried to reach the other kids and the bubbles. The extra instructor had responded by looking annoyed. She released him only when the bubbles were done.

My two-year-old son, deliberately withheld from participation. Made to watch. Punished. For what? For autism? My word, who would do such a thing? To what kind of program had I submitted my child?

I let Martin attend his last session that Thursday, because I had told him he was going and did not want him to perceive further rejection. I took the afternoon off work and picked him up early, before the other parents. The head instructor emerged with Martin. She handed over the day’s art project, and a City Kids Club t-shirt, and a “certificate of completion” for the program he had not completed, and all the while she smiled and told me how they would miss Martin. In my head, I pictured Martin held to the side, made to watch bubble fun and not allowed to join. As the instructor talked, I busied myself buckling Martin into his stroller. Then, because I knew I would not be able to speak without crying, I nodded dumbly and turned away.

Somehow—and I made a point of this—as I pushed Martin out of the City Kids Club for the last time, I managed to walk tall and dignified, despite the tears dripping from my cheeks. Forget you, City Kids Club. I’m proud to be the mother of the kid you don’t want. Once on the sidewalk, I knelt and told Martin that he was the best boy in the world and that I never imagined that I could love anyone as much as I love him. He stared past me, to the city traffic, and didn’t respond.

I’m crying as I write this. Seriously. I’m sitting in a Chipotle with my laptop and crying.

“It’s called ‘The City Kids Club’,” I lamented the next week to an old friend, “not ‘The City Club for Typical Kids’.” My first life-lesson in inclusion, in exclusion, had come and gone.

A New Martin, a New Me

Much has happened in the years since the City Kids Club did not want Martin. I have had better experiences with general (non-adaptive) programs, such as the aforementioned church Kids’ Klub, and the variety of one-afternoon events sponsored by our local park and preserve. (I’ve noticed that not-for-profit and volunteer-run activities tend to be more receptive to kids with differences than for-profit establishments are. I’m generalizing wildly. And eagerly so.) I’ve had time to meditate on Martin’s (current) limitations, and to ponder the economics of inclusion. That’s a fancy way of saying I’m marginally more forgiving of the City Kids Club. Yet however much wisdom I’ve acquired these last several years, what happened there still stings, and I fear putting us into a place where such rejection in possible.

… Which brings us back to gymnastics. Martin has been attending non-adaptive gymnastics at the JCC, weekly, for a month. The first class, Martin’s behaviorist accompanied him. She reported that he followed directions well, and that she physically assisted him only on the balance beam. (Martin, Mr. Mitochondrial Disorder, who sometimes falls out of chairs, on a balance beam!) Beginning with the second class, Martin attended alone. That class, and every week since, Samara or I have made, to the head coach, some version of this speech: “We want Martin to do everything himself, and to be included as much as possible. That being said, we know you have a class to run. Please don’t hesitate to tell us if Martin needs extra help, and one of us will come help him.” And so far, the response consistently has been, “Martin is doing fine. He does not need one-on-one help.”

Major. Victory.

The third week, I lurked around the gymnasium, observing while trying to stay out of Martin’s sight. The class has about a dozen kids, three of them boys. One of the boys seems to be apraxic and in fact does come with a one-on-one aide. The other boy has some behavior problems, diagnosed or undiagnosed. While I was watching, he disrupted the class several times and had to be asked to return to his spot, wait in line, and so forth. Martin, for his part, needed more assistance than other kids on coordination tasks, such as somersaults. He didn’t complete the obstacle course with the same urgency. Twice he cut a line, once he invaded the personal space of the boy with behavior problems (hugged him), and he required a few “refreshers” on directions. But overall he did well. He did not disrupt the class. He participated. More importantly still, he wanted and tried to participate.

Sometimes, Kids Suck

Almost at the end of the hour that I observed, Martin was waiting in line to use the balance beam when he turned and spoke to a girl he doesn’t know. Wow! I thought. Martin is addressing a new child. Great! What he said, I don’t know. But when he turned away, the girl caught the eye of another little gymnast, pointed to Martin, and then twirled her finger around her ear, making the classic “he’s crazy” gesture.

Martin didn’t see her, thank goodness.

But I did.

Kids will be kids. A six-year-old girl’s cruelty is not equivalent to an adult’s indifference. I hatched a plan: If one day I happen to see that girl with her mother, I will introduce myself, explain in the kindest terms possible what happened when my son spoke to her daughter, and ask if they might like to do a play date sometime, so the kids can get to know each other. I hope I do see the girl with her mother. The situation could turn positive for everyone.

The End of the Post and, Like, the Middle of the Story

Nine times out of ten, I know how I will conclude a blog post almost as soon as I draft the first lines. This post is different. I’ve written it over many days. (The Stanley Cup Play-Offs are happening. I’ve had a lot of hockey to watch.) I’ve not yet come up with the ending, so indulge me a microcosm/analogy:

Gymnastics is going great. Not perfect. Not without bumps. I’m not even sure where this “typical” class will end up, but all signs point to Martin’s full, independent participation. Eventually.

Our autism-recovery journey is going great. Not perfect. Not without bumps. I’m not even sure where this life will end up, but all signs point to Martin’s full, independent participation. Eventually.