The Spark: A Mother's Story of Nurturing Genius (23 page)

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 races, 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.

I believe that tantrums aren’t a symptom of autism, but a symptom of the failure to understand autism. It wasn’t that Jake didn’t
want
to
go to church; it was that he
couldn’t
go. The experience was just too much for him. If I had forced him to go, I would have only ended up with a miserable child and another torn dress. And if he couldn’t go to church, then—for a little while anyway—neither could I. I picked him up off that counter, and with the whole church watching, I walked back through the lobby and out the door. Then I put Jake in the car, and we left.

Although we were back in regular church attendance, I found that doing service through sports brought me a tremendous sense of peace and community. I thought of my grandfather often on those Saturday mornings. He had instilled in me a sense of play and an understanding of its importance. He’d also taught me to see my own misfortune as an opportunity to create a community rather than closing myself off from one. It was through his example that I’d learned that helping others means you are never alone.

The families of these autistic children hadn’t taken joy in anything for a long time. The parents were exhausted and demoralized, and their wonderful children had been told over and over they were worthless. Hadn’t it been practically impossible for me to find a place that would even allow them on the property? Bringing these families together and helping to put some joy back into their lives meant everything to me. In a way, Youth Sports for Autism was my church.

Our whole family loved it. Wesley was in his element. He could do even more extravagant running flips than usual on the mats we used to cover the church floors. Ethan was growing up around all different kinds of people, and his steady, calm demeanor made him a favorite with the older autistic kids. And I could see Jake starting to shine.

When people ask me today how Jake can be so social and at ease with people despite his autism, I tell them that we owe a lot to sports. On those Saturdays, we weren’t training him for the Mathematical Olympiads or taking him to the science fair. Instead, we were out on the soccer field or the baseball diamond or the basketball court, prioritizing friendship, social interaction, community, teamwork, and self-esteem. In sports, Jake wasn’t a prodigy or an autistic kid with physical delays. He was a kid standing in the outfield, scuffing the rubber
sole of his sneaker into the sunburnt grass, exactly like thousands of other kids all over America.

Very quickly, sports became more than just sports. Christopher had started a trend by sticking around after class. Every week, I noticed that more and more families were hanging around, too. They’d spill out onto the soccer field, lazily kicking a ball around or throwing a Frisbee. They’d bring lunch, and many of them would stay until the sun went down. In the winter, people would bring sleds, and the kids would shoot down the hills over and over until a steaming mug of hot chocolate with marshmallows was the only thing that could thaw out their little hands and cheeks.

We started a Facebook group. Every few days, someone would post a story of triumph, always with the same coda: “Take that, autism!”

It had been a long time since a lot of these families had laughed together, since they’d felt hopeful, since they’d teased one another and hung out without worrying. I loved seeing the moms sitting on the bleachers, hands wrapped around a cup of coffee, gossiping with their friends, while their husbands played horse on the basketball court with the kids. A lot of these people had forgotten the importance of childhood, of simply having fun.

I understood that. For a while, Michael and I had forgotten it, too. But then we had remembered, and now we could help these families learn to have fun again, too.

M
ost couples share dreams about the future that they discuss at night when they’re lying in bed and the rest of the house is quiet. For some people, it might be a luxurious cruise to the Caribbean or winning the lottery. For Michael and me, our dream was a little closer to home.

In 2006, I won a GasAmerica Hometown Hero Award for Youth Sports for Autism. The prize was quite a bit of free gasoline, which we were excited about. But the word “hero” embarrassed me. On the news, I saw soldiers leaving their families to fight for freedom and democracy in Afghanistan. Our next-door neighbor is a firefighter. Every day he goes to work, he faces the possibility of risking his life to save someone else’s. Those people are the real heroes, not a mom in capri pants making miniature golf greens.

It was Michael who helped me gain perspective, and galvanized by the award, I was determined to go even further. We’d seen that sports could be transformative for autistic kids. How much more amazing would it be if we had a permanent home for these activities? We’d had to move Jake and Wesley into one bedroom so that we could keep the storage bins crammed with sports equipment in the other one. We’d jerry-rigged the church space to make it work, but we would be able to do incredible things if we had a place of our own.

Sports had exposed us to older children with autism, which meant that we could see into the future for some of the younger ones. Being a teenager is hard. Being an autistic teenager can be
really
hard. We understood that there would be a time when Jake and Christopher
and their friends would be in need of a respite from whatever social difficulties they might encounter at school. In that respect, the search for our own sports space felt a bit like a race against time.

Little Light and Youth Sports for Autism had become a safe haven for Jake and his friends. Michael and I wanted to take this step a further and create a recreation center where autistic children and teenagers could play sports or watch movies, get help with their homework, or play a game of tag without anyone trying to “fix” their autism. Many years before, when we’d needed an official name for the charity behind Little Light, Melanie had suggested that we call it Jacob’s Place because it sounded friendly, not like a hospital or a treatment center. We’d only ever used that name on our tax returns, but it was the perfect name for a recreation center. Making Jacob’s Place a reality became our dream.

The sports program had grown so rapidly that the church space we were using was badly strained at the seams during the winter months. Instead of cutting back, we chose to see this as an opportunity to grow. In the summer of 2008, we sold one of our cars, cashed out Michael’s 401(k), and went looking for Jacob’s Place.

We had to look in the country. I had my heart set on a whole building, but our budget was laughable. One real estate agent actually did laugh when she heard what we had to spend: $15,000 for the building itself and another $5,000 for whatever improvements or equipment we’d need. That wasn’t nearly enough money to buy anything close by, even in Indiana.

At the time, Michael had to drive all over the area for his job, and he kept an eye out for anything that looked promising. One day he called home and said, “Kris, you have to come. I think I’ve found it.”

We’d bought a beat-up Ford Bronco for $500 to replace the car we’d sold. It was a noisy eyesore, with more rust on it than paint. The kids loved it because you could see the road passing underneath the car through the holes in the floor—sort of like the car the Flintstones drove. I trusted it only to get me back and forth to the grocery store, so I was a little nervous when I looked at a map and saw how far away
the building was. But I clunked along and finally made it to the tiny town of Kirklin, Indiana—blink and you’ll miss it—about an hour from our house.

Transportation anxiety aside, the drive there was beautiful, much of it on single-lane gravel roads through real farm country. I imagined this trip could be a kind of therapy in itself for stressed parents and kids.

When I got there, I saw Michael’s car parked at the end of the main street, which seemed mostly to be made up of abandoned storefronts. He was standing in front of the most dilapidated brick building I’d ever seen. It looked old. I mean really old—like nineteenth-century old. You could plainly see that it hadn’t gotten any love or attention since at least the middle of the twentieth century. There were no intact windows, and the back wall had caved in and was falling down. There was no sidewalk outside, except for the occasional chunk of concrete sticking up between the weeds.