The Spark

by Kristine Barnett

  The conversation went on late into the night, even though Michael understood early on that my mind was made up. Over the next few years with Jake, I would come to see over and over again that if one door closes, others can fly open. But as I tossed and turned that night in bed, hearing his teacher’s voice in my head, I didn’t yet have that knowledge to comfort me, which is why the decision to pull him out of special ed was the scariest thing I’d ever done and required the biggest leap of faith I’d ever made in my life.

  I got out of bed without disturbing Michael and walked down the hallway to Jake’s little green room, which had an orchard painted on the walls to match the one outside. His quilt had a pattern of black Labrador puppies riding in red pickup trucks through apple trees. Scattered all over it, as always, were hundreds of his alphabet flash cards.

  I put my hand on his back to feel him breathe. He was so special, so unique. But he was also autistic, and just because of that, his school had labeled him and then prematurely decided what he could and couldn’t do. He needed me to be his advocate, his champion; he needed me to be his voice.

  The next day, I did not put Jake on the little yellow school bus. Instead, he stayed home with me.

  Michael hit the roof.

  “What do you mean he’s not going to school? Are you crazy, Kris? Have you completely lost your mind?”

  “Michael, we’re going to lose him if we keep doing what we’re doing.”

  “This isn’t a joke, Kris. School is where Jake gets therapy. We can’t afford to have an army of private therapists come to the house. We can’t afford a single one of them! How is he going to get the help he needs?”

  “I’m going to do it myself.”

  “What about the daycare? What about Wes?”

  “No one else is going to do it, Michael. The experts have it all backward, and I don’t want to waste time trying to change their minds.”

  Jaw set, arms crossed, he didn’t say anything.

  I tried one last time. “I can do this, Michael. I have to.”

  Still angry, Michael turned away from me, his shoulders tight. I didn’t blame him for being angry. I wasn’t formally trained to administer the kind of therapy Jake needed. But like every other parent of an autistic child, I’d been in the trenches with Jake’s therapists since day one. Plus, I knew my child better than any expert could. And I saw a spark in Jake. Some days, true, there was only the faintest glimmer. But while I couldn’t claim to fully understand Jake’s passions and interests, neither could I justify discouraging those interests just because the rest of us didn’t understand them, or because they didn’t match up with some so-called normal template for childhood development. If we wanted to help Jake, we had to stop focusing on what he couldn’t do.

  After a few moments of tense silence, Michael turned back to face me. I could see that I hadn’t so much convinced him as worn him down. He agreed, on the condition that we reevaluate in a few months. I suspected that the outcome might have been very different if we’d been talking about kindergarten and not preschool.

  “You’ll see, Michael, I promise. By kindergarten, Jake will be ready. And not for special ed, but for regular public school. I’m going to make sure of it.”

  The New Normal

  The silence on the other end of the phone was uncharacteristic. Then Jake’s developmental therapist, Melanie Laws, said, “Are you sure?”

  Before picking up the phone that day, I sat in my living room and tried to remind myself to keep breathing: in and out, in and out. The enormity of what I had signed myself up for had hit me hard. I’d taken this stand with Michael, and I’d won—but now what? There was no book, no Ten Easy Steps to Mainstreaming Your Severely Autistic Child waiting for me on my shelf, and I didn’t have the slightest idea where to start.

  So I called someone I knew could help: Melanie Laws. But to get her on board, I first had to convince her that I hadn’t gone completely bonkers.

  Warm and motherly, Melanie had worked with Jake from the beginning, and she and I had clicked right away. She had the effortless authority that comes with experience—in her case, working with hundreds of children over the years, as well as raising seven of her own. I related immediately to her work ethic: Melanie was someone who always went the extra mile. That was something my grandfather had always taught me to do, and he’d taught me to appreciate it when I found it in other people. Melanie also had a great sense of humor, and Jake, even at his most stubborn, cracked her up. “I’ve got my work cut out for me with this one,” she’d observed wryly, shaking her head as Jake, never making eye contact, used one finger to push the matching work she was trying to get him to do right off his little table. Most important, Melanie treated the children she worked with as people, not problems to be fixed or objects of pity.

  Melanie was the perfect person for me to talk to for another reason: She’d been a teacher before she’d been a therapist, which meant she’d know exactly what I’d need to do to prepare Jake to enter regular kindergarten. Still, the silence I heard when I told her I’d pulled Jake from special ed was worrisome. Her reservations were almost identical to Michael’s.

  “I’m not sure you completely understand what you’re getting into,” Melanie said. “Jake needs a lot of help—a lot of help, Kris. And to be frank, that help is best coming from someone who’s had years of training and a lot of experience with autistic children. Not to mention you’ve got your hands full with your sick little one.”

  I launched into my argument. Uncertain as I might have been while watching that school bus come and go, my fundamental conviction remained strong. I knew this was the right thing for Jake. But would my conviction be enough? Melanie was a professional, and like Michael, she sounded far from convinced.

  We went back and forth for a while, and then Melanie asked for a little time to think about whether she wanted to participate.

  The next morning, I heard a honk outside. There in the driveway was Melanie, unloading box after box from the back of her station wagon. She looked at me, then said, “You just going to stand there? Or are you going to help me carry this stuff in?”

  My impassioned arguments hadn’t entirely won her over, but she agreed to help me mainstream Jake. And so the two of us spent the day sitting on the floor of the daycare, kids playing all around us, while Melanie showed me every one of the toys and tools and exercises she used in therapy. She pointed out what she thought might be helpful, while I made list after list after list. She had brought books and worksheets and manuals from her own training for me to photocopy.

  Then she walked me through every minute of a typical day of kindergarten, from story time to raising your hand; from asking to use the bathroom to Duck, Duck, Goose; from putting your lunch in a cubby to “The Goodbye Song.” Then I made yet another list—this one of everything a kid would have to know how to do in order to succeed in a mainstream kindergarten.

  We were both worn out when she finally got up to leave, but her smile was not unkind when she asked me one more time, “Are you sure about this, Kris?”

  I said that I was.

  I set up new routines for Jake. But instead of constantly pushing him in a direction he didn’t want to go, drilling him over and over to get his lowest skills up, I let him spend lots of time every day on activities he liked.

  For instance, Jake had moved from simple wooden puzzles to complicated jigsaws, blowing through thousand-piece puzzles in an afternoon. (One Saturday afternoon, when we were trying to complete the last, frustrating part of a house project, Michael dumped all the pieces from five or six of those puzzles into the gigantic bowl I use for popcorn on our family movie nights. “That should keep him busy,” he said. It did—but not for long.)

  He also loved the Chinese puzzles called tangrams—seven flat, oddly shaped pieces that you put together to form recognizable figures. I found it incredibly difficult to arrange these irregular shapes so that they resembled an animal or a house, and I always had to shuffle them around, tr
ying many different options before landing on the right arrangement. Jake, however, seemed to have no trouble flipping and rotating the shapes in his mind. Then he’d lay the pieces out easily, as if that was the only way they went. Soon we began combining sets, making large-scale patterns that were much more beautiful and complex than anything the instruction cards suggested.

  I spent as much time doing puzzles and tangrams with him as I’d once spent on therapy, and slowly I began to see a change in him. He was more relaxed, more engaged. Over the next month or so, he regained some of the ground I felt he’d lost while he was in school. In particular, Jake’s language began to come back. It wasn’t conversation—I couldn’t ask him a question and get a response, for instance—but he was talking.

  Most of the time, he recited strings of numbers. Numbers had always been comforting to Jake. He would carry an old grocery receipt around for a week, smoothing the list of numbers under his fingers. But once the floodgates were open, Jake was actually quite chatty. We couldn’t pass a numerical street sign or an address that he didn’t read out loud. Running errands with me in the car, he’d call out a constant stream of numbers from the backseat.

  This was how we figured out that Jake already knew how to add. At some point, I realized that some of the numbers he was saying were telephone numbers that he was reading off the sides of the commercial trucks and vans we passed on the road. But there was always an extra, larger number at the end—and I practically drove off the road the day I figured out the final number was the sum of the ten digits in the phone number added together.

  Driving back from a doctor’s appointment with Wesley, I caught fragments of what Jake was saying to himself in the backseat. This time, it wasn’t only numbers but the license plates of the cars we were passing. Then it was the names of the businesses: “Marsh!” “Marriott!” “Ritter’s!” At age three, just a few months after his teacher had told us we wouldn’t ever have to worry about the alphabet with him, Jake could read. I really didn’t know how he had learned or when it had happened—maybe it had been that Cat in the Hat CD-ROM after all. All I knew was that I had never gone through any of the typical pre-reading steps with him that I’d taken with so many other children in the daycare, teaching them the alphabet and all the different ways letters can sound. I had never so much as sounded out a single word with Jake. And yet now that he was talking a little more, we were learning that I wouldn’t have to.

  His memory was another surprise. Jake had been obsessed with license plates since he could walk. Everyone in our subdivision had gotten used to seeing him in their driveways, tracing the numbers on their plates with his fingers. But on our nightly stroll, I was still shocked to realize that the numbers and letters I could hear him singing softly under his breath belonged to cars that had already been put away for the night in the garages we were passing. Apparently, Jake had memorized every single license plate in the neighborhood.

  That was a cool trick, but there were hints that something much more interesting was happening. Going to the grocery store with Jake during that period took forever. Before I could put an item in the cart, I had to tell Jake how much it cost so that he could say the number back to me. This drove me crazy. Especially with antsy Wes in the sling across my chest, grocery shopping was a chore that already took too long. One day about six months after we’d pulled him out of special ed, I was swiping my credit card at the checkout counter, and Jake started yelling, “One twenty-seven! One twenty-seven!” I couldn’t get him out of the store fast enough, but when I did and had the presence of mind to check the receipt, I saw that he must have been totaling up the prices as I was putting the items in the cart. The checkout person had accidentally rung up a bunch of bananas costing $1.27 twice. After that day, he always gave me the running total as we joined the checkout line.

  The “math people” in our lives found Jake fascinating. One day I was having a cup of coffee with my aunt, a high school geometry teacher, while Jake sat at our feet, playing with a cereal box and a bunch of Styrofoam balls I’d gotten from a craft store so that the daycare kids could make snowmen. He was putting the balls into the box, taking them out, and then doing it again, and it sounded as if he was counting. My aunt wondered aloud what he was doing.

  Jake didn’t look up. “Nineteen spheres make a parallelepiped,” he said.

  I had no idea what a parallelepiped was; it sounded like a made-up word to me. In fact, it’s a three-dimensional figure made up of six parallelograms. Jake had learned the word from a visual dictionary we had in the house. And yes, you can make one out of a cereal box. My aunt was shocked, less by the fancy word than by the sophisticated mathematical concept behind it.

  “That’s an equation, Kristine,” she said. “He’s telling us that it takes nineteen of those balls to fill a cereal box.” I still didn’t understand the importance of what he was doing until she explained to me that an equation was a concept that she saw kids in her tenth-grade class struggling with every day.

  Jake’s capacity to learn certain types of things astonished us. He seemed curious about chess, so we taught him how the pieces move, and soon he was beating the adults in our family, some of them quite competent players.

  We bought him a set of plastic alphabet tiles, the kind of toy he’d always loved. As usual, he took them to bed with him. The next day at breakfast, I noticed that he was fooling around with his Cheerios, arranging them in patterns. I didn’t get it until I put him down for his nap and noticed that the new tiles featured a series of small raised dots at the bottom of each one. Jake had taught himself Braille.

  Maps were another great passion of Jake’s at that stage. He could barely contain himself when Dora the Explorer sang the character Map’s special song. He loved nothing more than to trace the intertwined roads and train tracks on a gigantic state map with his finger. This particular interest of Jake’s was useful. By age four, he’d memorized a driving atlas of the United States, so if you asked him how to get from Indianapolis to Chicago, he would tell you to take I-65 North until you hit I-90 West, including all the little access roads and connections you’d need to make.

  In a city, his skills were particularly invaluable. Mike’s family is from Chicago, so we went there often. I’m not ashamed to admit that I completely relied on Jake to navigate the maze of downtown. He knew all the buildings and every one of the shortcuts. What four-year-old directs his parents through traffic in downtown Chicago? But Jake loved telling us where to go, earning him the nickname “JPS,” for “Jake Positioning System.” Long before GPS became standard in many cars, JPS was standard in ours.

  Michael and I marveled at the evidence of his precocity, but in truth the new normal was still hard. In particular, we weren’t making much progress on real conversation. He was talking again, and for that we were grateful. But reeling off numbers and store names and answering questions are different from engaging in conversation. Jake still didn’t understand language as a way to make a connection with other people. He could tell me how many dark blue cars we’d seen on the trip to Starbucks, but he couldn’t say how his day had been, and I was always searching for common ground.

  Also, Jake’s extraordinary academic abilities wouldn’t really help us to mainstream him into public school. Simply put, social skills are more important than academics in kindergarten. Kids in kindergarten have a lot of playtime. They have to interact with their classmates, they have to follow simple directions, and they have to share. If Jake spent the whole day in the corner, even if he was teaching himself the periodic table, they’d send him right back to special ed.

  It was imperative that Jake learn to function well in a group. Of course, he was around the kids in daycare every day, but Melanie thought it might be easier for him if there were other autistic kids in the group as well. With her help, I sent an email out to the parents in our community, hoping some of them might want to join.

  My call for participation was the first real clue that there was an autism epidemic. I
was hoping for five or six responses. Instead, I got hundreds, from parents of children of all ages. I was stunned by the level of desperation in the emails. These were people, just like me, who could see that what they were doing wasn’t helping their children. Many of them had run out of options within the system. There wasn’t anyplace left that would work with them or their kids. In most cases, I was the port of last resort. “Please help us,” one mother wrote. “You’re our last hope.”

  That was a huge turning point for me. I looked at my flooded inbox and thought, I’m not going to turn any of you away. You can all come. Jake was going to learn what he’d need to get into kindergarten, and we were going to take as many kids with us as we possibly could. Nor would we leave the older or lower-functioning kids behind. We are going to build a community, I thought. We are going to believe in our kids, and in each other’s kids, and we are going to do this together.

  Let It Shine

  “Kristine, there appears to be a live llama in our living room.”

  Michael’s tone was resigned. Two years after we’d pulled Jake out of Life Skills, my husband had become accustomed to the scope and scale of my schemes, but nothing had quite prepared him for this. Of course, the llama wasn’t supposed to be in the living room. She was supposed to be in the finished garage we’d converted to house my daycare, a space that was now also moonlighting twice a week as a highly unorthodox kindergarten boot camp I’d set up for autistic kids. Whatever Michael had been expecting when I’d told him I was determined to mainstream Jake into kindergarten, it wasn’t this.

  Receiving that flood of emails from those desperate parents had been an eye-opening experience for me. In response, I had decided that in addition to my daycare, I’d start a new program, a series of evening classes for autistic children and their families with the goal of helping the kids to be mainstreamed into public school. Melanie Laws, thankfully, once again agreed to help, and she suggested that I register the program as a charity, because I was determined not to charge anything for it. I couldn’t bear the thought that a family might not be able to afford to come, or that they’d have to skip another therapy to do so.