A Chance to Play
In 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 u
p 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.
It’s true that all these things were designed to make the activities appeal to autistic kids. But I also believe that it’s through our senses that we heal, and that’s true not just for autistic kids and other people with special needs, but for everybody.
Before Jake was born, I had a sweet little girl in the daycare named Rose whom I grew to rely on as a role model for the other kids. When her father Jim’s life partner was diagnosed with cancer, Jim completely fell apart. He was so focused on taking care of his partner and Rose that he didn’t have any time to take care of himself. He was such a mess, I worried that he’d lose his job. One morning I sat him down and covered the dark circles under his eyes with concealer from my makeup bag.
Not surprisingly, Rose began to be affected by the strain. She seemed listless and cranky, and she wasn’t taking a leadership role with the other children anymore. I grew concerned: Rose was my responsibility, and she was not flourishing.
When Jim dropped off Rose one day, his hands were shaking so badly that he couldn’t get Rose’s lunch out of his briefcase. I put my hands on his shoulders, looked him in the eyes, and said, “You are not okay, and if you keep going this way, your family is not going to be okay. You need to heal your own spirit so that you can take care of the people in your life.”
“I’m not sure I know how,” Jim said, distraught.
“Please, may I make some suggestions? On your way home from work tonight, buy a chicken, along with some rosemary and sage.”
“But I don’t know how to cook a chicken!”
“Turn the oven on to three hundred fifty degrees, put the herbs inside the chicken, and smear some butter and a little salt on the outside. Cook it for an hour and a half. While the chicken is cooking and all those wonderful smells are wafting through your house, take the softest blanket you have and put it in the dryer for ten minutes. Then wrap that comfy blanket around yourself, turn on some music you love, and look at a family photo album. Don’t get up until that chicken is done. When it is, sit down with your family and have dinner.”
I then sent him on his way with a pair of my own fluffy chenille socks.
Jim needed to reconnect with his senses. I firmly believe that we experience life through them. But when we’re too busy or going through a traumatic situation such as Jim was, we neglect them. We don’t think about the way that cashmere scarf keeps us warm when we’re frantic to get to an appointment on time. We don’t take the time to search the radio for a fun eighties station before we pull out of a parking space. Instead, we’re wound up too tight to feel much of anything at all.
The Jim who came to drop off Rose the next day was a different man—rejuvenated, and more rested and peaceful than I’d seen him in months. Yes, the rest of that year was still very hard for him and his family, but Jim had a rescue remedy he could use whenever he felt depleted, overwhelmed, or depressed. He could make himself physically warm and comfortable. He could make his house smell like a home. He could nourish himself and his family with a home-cooked meal.
Indulging the senses isn’t a luxury, but a necessity. We have to walk barefoot in the grass. We have to eat clean snow. We have to let warm sand run through our fingers. We have to lie on our backs and feel the sun on our faces.
That was why the kids who came to the sports program didn’t have to do anything but play. A lot of people were skeptical about this approach, and some of the families who’d been with us at Little Light left to use that time for more therapy. A lot of people were concerned that Jake wouldn’t get what he needed because of my single-minded focus on play and ordinary childhood experiences. Compared to more formal practices, my strategy didn’t seem like much: “Hit a ball to your friend, and I’ll cheer.” What kind of therapy was that? But I was like a broken record about it: “You don’t have to do anything. Just play.”
And it worked. I began seeing improvements right away. Activities that had seemed completely out of the question when we started, such as relay r
aces, became not only possible but fun. In the pictures from that first year, you can see most of the kids wandering around, totally lost in their own worlds. In the ones we took around Christmas, though, you can see that they’d started to get it, sitting in their spots on the parachute, facing me and paying attention.
Once a month wasn’t enough; we needed to meet weekly. The church said that we could, as long as we cleaned the buildings we were using before we left. I had to laugh. Twice a week when I was growing up, my sister and I would help my grandmother clean the interior of the church that she and my grandfather had built. She’d put a kerchief over her hair, load her bucket of supplies into the car, and drive my sister and me over there so that we could push the sweeper, wipe off the hymnals, and dust and wax the pews. For my grandmother, this was a type of community service.
In a similar way, Youth Sports for Autism was community service for me. Mike and I had stopped going to church in the years after Jake’s diagnosis. (This is very common among families with autistic children.) One Sunday morning, there had been an incident at church. While I was standing in the lobby with Jake, the mother of a girl I’d gone to high school with spotted me. Shrieking with delight and trailing perfume, she swooped toward us, her brightly colored shawl sailing out behind her. As she grabbed my face to plant a kiss on my cheek, Jake completely flipped out. He lay flat on the ground, screaming at the top of his lungs. When I tried to pick him up, he kicked at me, grabbing and ripping my silk dress.
It’s one thing when your child loses it in Target, but it’s another thing altogether when it happens in church. I was completely humiliated. Everyone stopped to stare at us, and someone even made a joke about sprinkling holy water on him. We finally made it down the hallway into the restroom, where I sat him up on the counter between the sinks, rubbing his back and wiping his eyes, trying to reassure him that everything was okay. Eventually, he loosened his grip, releasing sweaty handfuls of my dress.
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