The Spark: A Mother's Story of Nurturing Genius (22 page)

It might sound naïve, but that was the first time I realized that Jake’s autism meant he wouldn’t be able to participate in sports. Maybe it wouldn’t have hit me so hard if I hadn’t just met that little karate kid, but as I held Jake’s hand to cross the parking lot, I was really upset. Would my son never know what it felt like to shout “Gooooaaaaal!” or to douse the kid who’d pitched the winning game with Gatorade? Would he never know how it felt to slide into home plate, seconds ahead of the tag? Did his autism mean that Jake would never make a touchdown or get grass stains on his soccer uniform?

Five years later, my fears in that parking lot remained valid. Jake had successfully been mainstreamed into regular public school and had lots of friends there and in our neighborhood, but mainstream sports were still largely off-limits to him, as they are for many autistic
children. Gym class was the only place where Jake’s autism still tripped him up. When they were playing dodgeball, he made for an easy target, and he often felt bullied when his classmates ganged up on him. The idea that he’d agree to participate in a team sport with kids his own age was completely unrealistic. Even Little Leaguers (and, very often, their parents) really want to win. They can be cruel when a kid fumbles the ball or forgets where to run—especially an autistic kid who has physical delays or auditory processing glitches.

I knew from other parents’ stories that Jake’s experience wasn’t unusual. Still, all the things that make sports hard for autistic kids are also why they’re so important. Sports are an opportunity to give autistic kids the chance to know how it feels to
play
. Making or missing a goal, catching a fly ball, nailing a free throw—these were all childhood experiences I didn’t want Jake to miss. I hadn’t thought about sports much until Rachel’s question about a program I’d like to do. Then I couldn’t stop.

I
n 2005, with Rachel’s help, I decided to start a sports program for autistic kids. But our plan for Youth Sports for Autism almost didn’t get off the ground because I couldn’t find a suitable meeting place. We couldn’t do sports in the garage daycare area because there was barely enough room in there for five little kids and their parents, and our backyard was much too small. So I opened the phone book up to the letter
A
and proceeded to call every church and town hall I found within a sixty-mile radius to see if they had any space to rent.

Every phone call was a variation on the same theme. Oh, yes, they had a room. Of course, they’d love to rent it out on Saturday mornings. But as soon as the word “autism” was introduced, the person on the other end of the line would say, “Oh, I didn’t realize it was for kids with special needs. We don’t have the liability insurance,” or “We’re not wheelchair accessible,” or “I’ll need to run this by our board of directors.” I’d leave my name and number, but I’d never hear from them again.

We didn’t need wheelchair access, and we weren’t any more of a liability than an Alcoholics Anonymous meeting or a mommy and me music class. And I’m sure that if I’d been calling on behalf of a Girl Scout troop, we wouldn’t have needed board vetting. But what could I do?

I’d almost given up when a flyer came in the mail announcing a spring carnival taking place at a nearby church. There were going to be outdoor games and a bouncy house, and it occurred to me that if they had room for all that stuff, they had room for sports. Taking a
deep breath, I picked up the phone and gave it one more try: “Hi, I need a home for a sports program for a group of kids with autism. Would you let me rent some space?”

After months and months of hearing people say no, I almost didn’t trust my ears when the building manager said yes. And when I drove into the parking lot, I could barely believe my eyes. If I’d made a wish list of everything I could possibly want or need for sports with these kids, Northview Christian Life Church would have fulfilled every item on the list. Behind the enormous, modern church, there was a long, low outbuilding with two rooms, one with a rudimentary kitchen and a couple of couches where parents and younger siblings could hang out, and a large, empty room that could easily accommodate a group of active kids. Outside, a gently sloping hill led down to a soccer pitch, a track, and a baseball diamond, as well as a couple of basketball courts. Best of all, there was plenty of grass with no designated purpose at all. There a child could lie on his or her back and make a whistle out of a fat blade of grass or pick animals out of the clouds. There were buttercups in the baseball field, enough open space to run fast and far, and nothing but big, beautiful, blue Indiana sky above. It was perfect.

That spring, the church would allow us to come only once a month. My plan was to do a different sport, modified to make it autism accessible, every session. I’d spend the week buying whatever I needed for that week’s sport. When our alarm clock sounded at 4:00 a.m. on Saturday morning, we were off. I’d load up the van with the materials for the day’s activity and drive over to Northview, where I’d meet Rachel, who would help set up the room. Around nine, the kids would start arriving, and we’d stay most days until the daylight was gone.

As with Little Light, parents had to stay with their kids. Youth Sports for Autism wasn’t a drop-off activity (most of the kids weren’t independent anyway), and nannies couldn’t substitute. This had to be an activity the whole family did together. For the first time since I’d started working with children, I saw
dads
—dads in sweatpants and baseball caps, playing with their kids. This was an experience many of them thought they’d never have.

I made one thing clear to the families: After a week of nonstop occupational, physical, developmental, and speech therapy, Saturday morning was a time for fun. This was our time to play and be silly, to do all the weekend activities that ordinary families take for granted. Suspicious, parents would show up and ask, “Really? We’re just going to play? No therapy?”

“No therapy,” I’d say. “We’re just going to play.”

When you have a kid with autism, it’s not your calendar that needs to be cleared of serious work; it’s theirs. Sometimes what you
don’t
do is as important as what you do. I’m not sure that I would appreciate that as much if I hadn’t grown up in Indiana. We joke about living in the middle of a cornfield, and it’s almost literally true. (There’s one a block away.) There aren’t a lot of parties where we live, but there are a lot of bonfires. And barring the occasional cow or pig, there isn’t much to see except sunlight and sky and grass. That’s what makes Indiana so special.

And so on those Saturday mornings, we had only one goal: to celebrate our kids and their achievements, no matter how those achievements looked to the outside world. There weren’t any expectations for performance, and there was only one rule: When a child took his or her turn, everybody had to cheer, no matter what.

These certainly weren’t the fastest kids, or the most athletic. But even if a kid brought a single bowling pin down while holding her dad’s hand, we’d break out in cheers. If a low-functioning kid such as Max so much as picked up a bat, we’d run around screaming and high-fiving as if our team had won the World Series. And when Jerod made a touchdown, even if there wasn’t another kid anywhere near him to intercept the ball, we’d lift him up on our shoulders as if he’d just won the Heisman Trophy.

The very first day, I came up with an obstacle course that everyone could do. The kids had to pick their way through five hula hoops lying on the ground; cross a mat by stepping on four giant, brightly colored “feet” that I’d cut out of felt; and then pick up an extra-large beanbag (actually a buckwheat neck and shoulder pillow) and bring it back to the group. I’d bought bags of cheap gold medals at Walmart, the kind
you’d put in a little kid’s birthday party goody bag. I made sure I had enough for everyone. So even when a child stepped on every single hula hoop and none of the giant feet, he or she got a medal.

A few weeks in, I noticed that Adam, a nonverbal thirteen-year-old, was always clutching that medal in whichever hand his mom wasn’t holding. The medals weren’t very sturdy to begin with, and his was beginning to look a bit worse for wear, so after class I slipped a couple of spares into his mom’s purse. Turning to thank me, she had tears in her eyes. “You can’t imagine how much it means to him to have a medal,” she said. “He sleeps with it.”

Many of the Little Light graduates participated, but a lot of families we didn’t know came, too. Without realizing it, I’d hit on a universal need: Families seemed to have been yearning for a program like this one.

One of the kids who came was a six-year-old boy named Christopher. He was a year younger than Jake (though at least a head taller) and was already a really good basketball player. The two of them clicked instantly. That first week, after his class was over, Christopher didn’t want to leave. Later, we learned that he was getting bullied at school. Jake had to stay because he was waiting for me to finish the rest of the classes, so the two of them spent the afternoon together, playing hide-and-seek and mucking around with whatever sports equipment was strewn about from the earlier classes. By the time we were loading all the balls and mats back into our van, the two of them were already fast friends.

Saying our goodbyes, Christopher wrapped his arms around me again and again. He must have hugged me goodbye eight times. It was pretty extraordinary behavior for a kid with autism, and it showed me right away how much this program meant to these kids.

By the end of the month, Jake and Christopher were inseparable. That alone would have made the work we put into the program worthwhile. With his interactions at the university complementing his hangout time with the kids he knew from the neighborhood and from school, Jake was much less isolated than he had been. But with Christopher,
there was a real emotional connection, a bond he didn’t have with any other friend.

After a few weeks, I opened the sports league up to all age groups. Many of the kids who showed up were much older than Jake, some of them in their mid- to late teens.

My goal was that every child who came would feel as if he or she was part of a team. To achieve that, I had to make some modifications. Mike commented once that I wasn’t making sports autism-friendly so much as I was reimagining sports. With hockey, for example, ice was out. Fine, we’d play hockey on the carpet. But we couldn’t use real hockey sticks, or we’d have more casualties than players. Maybe brooms would work. How do you get an autistic kid to like the feel of a broom handle? You wrap it in foam tape to make it squishy. We used a ball instead of a puck, made the goal the kids’ height, and painted the posts colors they found appealing.

Mike and I certainly didn’t have a lot of money to work with, but as usual my creative, resourceful grandfather served as my inspiration. This was the guy who had welded together a totally watertight, operational submarine for his kids in his driveway. (My grandmother, terrified that someone would drown, called the scrap metal dealer and had it hauled away while my grandfather was out fishing. But I’m sure it would have been amazing!)

“If God has a job for you, he’s going to give you everything you need to get that job done,” Grandpa used to say, pulling his truck over to the side of the road to pick up some discarded timber or metal from someone’s trash pile. I often thought of him saying that when I was trawling Walmart or Target for items I could repurpose for sports. I bought huge rolls of Astroturf and cut it into pieces to make miniature golf greens. In the beginning, the kids golfed with balloons. And every holiday—Halloween, Valentine’s Day, Christmas—I’d decorate those greens in an appropriate holiday theme.

Bowling is fun, but bowling alleys are incredibly loud, which makes them nightmarish for many autistic kids. Strips of wrapping paper from the dollar store became color-coded bowling lanes. One week
Mike and I loaded a case of Mountain Dew into his car so that his co-workers could drink it and get the empty bottles back to me before the weekend. The green empties made for a nice contrast with the clear two-liter bottles that we had already discovered made great bowling pins.

Some people were concerned about my expenditures. “What about your kids and their college funds? What about your own retirement?” But I’d found my calling, and I always had faith that the money we needed would come in due time. Neither Mike nor I had grown up with much. We never even thought we’d own our own home. Everything we had seemed like a gift, and it felt like a further blessing that we could fight misconceptions about autism and help the families who were living with it. Thankfully, Michael was not only on board but also incredibly good-natured about it. We’d be at the hardware store, and he’d say, laughing and shaking his head, “I guess my bonus is going toward Astroturf!”

I called in every favor I could from friends in our community. We had the soccer coach from the high school come to teach the kids soccer. Again, we used balloons for balls at first so that the kids could learn how to pass and make a goal. When it became clear that broom hockey was a hit (Jake was the goalie!), we got members of the U.S. Hockey League’s Indiana Ice to come and play on the carpet with the kids.

When we finally moved out to the baseball diamond, I maxed out my credit card to buy different-colored T-shirts with the team names on them, so that the kids would know how it felt to be on a team. For many of the lower-functioning kids, sitting in that dugout was the first time they’d been apart from a parent or caregiver. But they were fine, because they were with their teams, and, of course, their parents were cheering them on like crazy from the bleachers. By that time, we all felt like one big, happy family.

I’d learned a lot from Little Light. I knew that the activities had to be attractive to the autistic brain, so I created lots of visual rules. Twenty different colors of duct tape created boundaries on the mats. Almost everything we did had a sensory component. There were inflatable
balls, squishy mats, and balloons. I scattered those sensory toys all over the silky parachute covering the floor so that the children would be enticed to sit there with me.