The Spark

by Kristine Barnett

  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.

  A Dream Come True

  Most 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 d
own. There was no sidewalk outside, except for the occasional chunk of concrete sticking up between the weeds.

  Keeping my game face on, I tried the door to the side entrance. “That door’s not so good, actually,” Michael said.

  Once I got it open, I could see what he meant. There was nothing behind it but a gaping black pit. One more step would have sent me plummeting fifteen feet into the debris-filled basement. (I had nightmares for months about falling into that hole.) It got worse. The entire second floor in the back of the building had sunk and collapsed, so that it hung like a suspended bowl over the first floor. There was no way you could step in there without the threat of the whole second floor collapsing on you. Peering into the darkness with our flashlights from the safety of the doorway, we could see a bunch of creepy antique medical equipment and furniture left over from the building’s time as the town doctor’s office.

  The place was filthy, it was in the middle of nowhere, and it was obviously unsafe. But there was a lot of history there, and more to be made. When I closed my eyes, I could see it filled with the families we had come to know and love so much through Little Light and Youth Sports for Autism. In my mind’s eye, I could see the moms hugging one another, relieved to have a place to relax and share their worries after a long week. I could see groups of kids in beanbag chairs watching movies, and others paired off over chessboards and card tables. And where that bowed second story hung so precariously in the back, I could see Jake and Christopher alternating free throws from the half-court line of a big, beautiful, newly painted basketball court.

  I looked at Michael and smiled. “This is it,” I said. “This is the rec center.”

  Jake and Christopher were inseparable by then. I had also become close friends with Chris’s grandmother Phyllis, who was raising him. That summer, the two of us would hang out by their swimming pool and talk while the boys swam. Those were rare moments of relaxation for me, and I treasured them. Their family owned a car dealership and lived in a huge home, complete with outdoor and indoor basketball courts, a pool, and an elevator. Of course, Jake loved to go there. But Christopher loved to come over to our little house, too, to roast hot dogs and make s’mores in our backyard. He was incredibly fun to be with, the type of person who can turn even a disappointing situation like a rained-out picnic into a grand adventure.

  Christopher and Jake had bonded over the fact that they didn’t always fit in. It can be difficult for an autistic kid to distinguish between kids laughing with him and those laughing at him. When Christopher told a joke and the boys at school laughed, he couldn’t always tell what it meant. Had the joke gone over well, or was the laughter unkind? Jake’s years in elementary school and all our efforts to bring friends into his life had helped him. By the time he met Christopher, he felt more comfortable socially and could help his younger friend navigate his way through the awkwardness of that age, the uncertainty of never quite knowing what other kids thought or felt. There were no walls between them.

  Jake’s mentoring came to be a big part of their friendship. Jake was always saying, “Here, learn this. You need to know this weird little skill, or it’s going to be hard for you to get along.” On the very first day they met, Jake taught Christopher to hula-hoop. It seems like such a small thing—people don’t need to know how to hula-hoop. But there was an element of urgency to it, because every skill that a kid like Christopher has is one less thing he can be teased about, one less thing that sets him apart.

  Christopher also helped Jake. He was much bigger than Jake and had more natural skill at basketball. Jake’s skills got a lot better under his tutelage, and he came to understand the pleasure of practicing a sport.

  Christopher was also obsessed with magic. Jake loved to write letters to Christopher in code that he would have to decipher, and Christopher delighted in learning obscure tricks and demonstrating them for Jake, who would then have to figure out how they worked. Christopher’s dexterity and mastery of the principles of magic improved, and the tricks he did got harder and harder. The harder they got, the happier Jake became: It was rare for someone his own age to present him with a puzzle that truly challenged him. Sometimes the two of them would collaborate on an illusion together. For example, Jake helped Christopher design an elaborate trick that required a number of mirrors to be set at precisely the right angles, an activity that was right up Jake’s alley.

  They went to different schools, but they saw each other every Saturday at sports and again the next day at church, and they called each other on the phone every night to talk about sports. I’m strict about everyone sitting down for dinner together, but I was so glad to see Jake have such a good friend that I’d often make him a turkey sandwich and cut up some veggies for him so that he could eat while he and Christopher talked on the phone.

  Michael and I quickly realized that we’d bitten off more than we could chew as far as the rec center was concerned. The $5,000 we had left over to pay for repairs to the building was all we had in the world. I remember Michael looking at our bank statement, shaking his head, and saying, “If our furnace blows at home, we’re in for a cold winter.” Mike’s father is a carpenter, and he was genuinely alarmed by the scope of the work. The first time he walked into the building, he said, “You cannot afford to get involved in this. Seriously, don’t walk away from this—run.”

  We didn’t listen. Like a lot of people in America at the time, we’d taken advantage of the credit bubble. Michael had been promoted a number of times, and the daycare was booming. I had visions of expanding it, maybe even creating a little school out of it. With Ethan’s arrival, we’d also badly outgrown our little house. At one point, I realized that the whole family couldn’t actually fit in the living room together unless one of the kids was perched on the arm of the couch or sitting on the floor at our feet. If we couldn’t comfortably watch a movie together, we needed more space.

  The original plan had been that we’d live in the rec center and fix it up at the same time, but the town wouldn’t run electricity or water into the building until it was up to code. I don’t mind roughing it, but raising three young boys in a tent inside an uninhabitable building seemed a little extreme, even for me.

  So we took out a mortgage and put money down on a house being built in a new subdivision in Westfield, a middle-class suburb carved out of the farmland north of Indianapolis. Without exaggeration, the new house was my dream home, a place I never in a million years could have imagined living in, let alone owning. There was enough space for all of us—even more than we needed. In the plans, the kitchen, dining room, and living room were open to one another, so we could all be together in the same space. Nobody would need to be banished from the kitchen so that I could get dinner on the table. Ethan was very interested in cooking and baking, and at four he could even make some basic meals by himself. When I looked at the plans, I smiled to imagine the feasts he’d soon be able to produce.

  The new house would also have a huge garage, which could easily accommodate more daycare children and an assistant. Michael and I agreed that even though it would cost us a little money, we’d hold on to the old house until we moved into the new one. I wanted there to be minimal disruption for the daycare kids as a result of the move.

  As we watched the house being built over the spring and summer, we came to know our new neighbors. We’d stop by to see what progress the builders had made and then have a picnic in the little playground on the banks of the pond situated right across the street from our lot. While the kids swung and climbed, Michael and I talked to the other people who’d come by to see the progress on their own homes.

  The day we moved in, I honestly felt like a burglar. I’d grown up in a poor neighborhood on the east side of Indianapolis, and I kept waiting for someone to come along and tell me I didn’t get to live in this gorgeous house after all. Parts of my house still make me smile every day. The fact that Mike and I each have our own sink in our bathroom makes me feel like the queen of England.

 
; It became clear within the first day or two that the open kitchen–dining room–living room area was where we were going to spend most of our time. Friends who stopped by with housewarming presents would walk in, plop down on a couch, and end up staying for dinner.

  We’d been right about the community, too. I didn’t have any choice but to meet our next-door neighbor, Narnie, and neither does anyone else who crosses her path. (While out shopping with her recently, I overheard her introduce herself to someone while I was in the changing room. In the time it took me to try on two dresses, Narnie had found out everything about this woman’s upcoming wedding, her fiancé, and which of her emotional needs he did or didn’t meet. There she goes again, I thought.)

  As soon as our moving truck pulled up to the house that first day, out bounded Narnie from the house next door. And would you believe that she started unpacking the truck? Completely unself-conscious, with a wide-open face and a deep, full belly laugh, she had my closet in order by the time I’d introduced myself, and I hadn’t known her an hour before she was doing my dishes. There’s no such thing as privacy around this NRA-card-carrying, yoga-practicing grandmother, and that’s a good thing, because when she comes into your life, she will be there for you when you really need her, every single time.

  Having a neighbor who would come over for a cup of tea every afternoon (cocoa on Wednesdays) made it official: I had everything I’d ever wanted. Our new home was filled with the people I loved, and slowly but surely we were building the rec center we’d talked about for so long. I told Michael, “Okay, I’m done. This is it for me. I have every single thing I’ve ever hoped for.”

  Then the recession hit, and suddenly the rec center was the very least of our concerns.

  Dark Times

  The entire state of Indiana was hit hard by the recession, and fast.