Dr. Pehl looked thoughtful. “You know, I’ve never thought about that,” he said.
The answer wasn’t in any of the textbooks either. Later, Dr. Pehl helped me to see that this tendency to take a well-understood concept and build on it is the engine behind Jake’s tremendous creativity. He is always pushing a theory or concept he’s read or learned about one step further.
Jake took all the quizzes and all the tests in those early classes with Dr. Pehl, and he aced them all. (I remember Dr. Pehl telling him whom to write to after he’d found an error in the textbook.) When Stars and Galaxies was over, Jake signed up to take the first course on the solar system again. He’d exhausted the astronomy courses offered by IUPUI.
To keep himself occupied while he was waiting to ask Dr. Pehl his inevitable questions at the end of class, Jake would move slowly through the rows of desks in the enormous auditorium, picking up discarded coffee cups and wadded-up pieces of paper. He’d put the abandoned Coke cans into the recycling bin or stick a student’s forgotten calculator into his backpack, holding it for the person until he saw him or her the next week. It was as if IUPUI had hired the world’s smallest janitor. By the time he’d made his way down to the lectern, the other students would be finished asking their questions, and he’d present Dr. Pehl with his.
After he’d been taking classes for a year or so, Jake floated an idea, an alternate theory he’d been thinking about. Did Dr. Pehl think it could work?
“I don’t have the slightest idea,” Dr. Pehl said. He sat down in the front row and tossed Jake a whiteboard marker. “Here’s a marker; there’s the board. Go ahead. See if it works.” For the next fifteen minutes, the two of us sat and watched as Jake blazed through equation after equation.
This was the first of many after-class sessions, but it represented a turning point for me. With a real sense of shock, it occurred to me that I’d never seen Jake talk about the things he was most passionate about with someone who actually knew what he meant. Here, finally, was someone who could parry with him, question him, correct him, challenge him, and truly appreciate him. Here, finally, was a conversation.
I saw how quickly Jake picked up the material and how his scary speed with the math worked to his advantage. I recognized how Dr. Pehl’s direction could focus Jake’s voracious mind. There was a lot of math he didn’t know. After all, he was only nine. But that represented only a temporary stumbling block for Jake. Unlike the other students, he could make a note, go home, learn what he needed to learn, and then start from there the following week.
“Every time I turn around, he’s jumped up another level,” Dr. Pehl told me once, shaking his head.
Jake had a million ideas, and the university environment fed them. At the end of any given class, he’d run through ten theories on the whiteboard while Dr. Pehl sat in the front row and watched him do it. Better than most people at seeing patterns, which are fundamental in math and science, Jake was not afraid to draw associations between them even if they occurred in unlikely places. If he saw any connection at all, he’d run with it, and if it turned out to be wrong, he’d just move on. Dr. Pehl encouraged his daring. “Nobody’s going to remember a mistake you made when you were nine, Jake,” he’d say, laughing.
Watching Jake at the front of that classroom, I was impressed once again by his confidence and how resilient he seemed to be. If Dr. Pehl pointed out a potential problem with one of his ideas or asked him how he’d resolve a discrepancy, Jake didn’t take it personally. There was no ego involved, no “Back off; this is my theory.” Instead, it was more like “Another puzzle! I’ll have to think about that for a second.”
I genuinely appreciated Dr. Pehl’s support. He was as shocked as I was that people had been so ready to give up on Jake. Every once in a while, he’d turn to me, eyes wide, and say, “And this is the kid nobody thought would ever read!”
Nor was he quite ready to give up on me. After I’d been coming to class for a while, Dr. Pehl insisted on giving me the day’s quiz. “Come on, he’s got to be getting this talent from somewhere,” he said.
“Whatever it is, it skipped a generation. I promise you, it’s not from me,” I replied.
It wasn’t as if I was spending my days in some kind of heady intellectual pursuit. I’d spent most of my professional life singing “The Wheels on the Bus.”
But Dr. Pehl persisted, and so I took the quiz. I got one of the four questions right. For those of you as pathetic as I am in math, that’s 25 percent. I’m not one to make excuses for myself, and in this case I didn’t have to, because Dr. Pehl was only too happy to do that for me: “You weren’t expecting a quiz. Pay close attention next week, and we’ll try again.”
I didn’t know how to tell him that I had been paying attention! But I was up for a challenge, and the next week I buckled down. I took notes and thought I had at least a rudimentary grasp of what was going on—until I took the quiz. This time, I didn’t get any of the questions right. Zero percent. Even I could calculate that.
“Anyone can have a bad day,” Dr. Pehl said, still encouraging me. “Let’s see what happens next week.”
So the next week, I gritted my teeth and concentrated so hard my head hurt. By the time the quiz landed on my desk, I was sweating through my blouse. The questions swam in front of me. Just when I was about to give up, I heard a compassionate voice in my ear: “B. The answer to number two is B.”
I thought Jake was the culprit and was gearing up to deliver a lecture on academic honesty and the importance of letting other people make their own mistakes. But Jake wasn’t even paying attention to me. He’d finished his own quiz in a matter of seconds and was reading ahead in the textbook. My rescuer was, in fact, Dr. Pehl, who was smiling and shaking his head. He’d seen that it was hopeless and had taken pity on me.
Once, when I thanked Dr. Pehl for taking an interest in Jake, he made a remark that stuck with me: “A great mind is just a great mind, and I try not to worry too much about what package it’s in.”
I had cause to think of that comment when an older woman leaned over during a break in class to compliment me on how well behaved my little boy had been during the lecture. It gives you some idea of how far we’d come that for a minute I genuinely didn’t know what she was talking about. Jake had spent the class filling a notebook with equations tangentially related (as far as I could tell) to the topic Dr. Pehl had been lecturing on. I’d been looking forward to hearing what Dr. Pehl had to say about Jake’s many thoughts after class. But all that woman saw was a smallish nine-year-old with a not-so-clean face, wearing Crocs and drawing in a notebook.
That moment, I realized that I no longer saw Jake as a little kid or a student. I’d begun to see him for what he was—a scientist. We had finally found a place where Jake could just be Jake.
Two Pies
After Jake had settled into attending astronomy courses at IUPUI and most of the kids at Little Light had been mainstreamed, I began skill development classes at night for the lowest-functioning kids. I felt a huge responsibility to help parents see what their kids could do so that they wouldn’t give up on them.
The first time Katy, a severely autistic nonverbal seventeen-year-old, walked into my house, she made a beeline for the kitchen. She opened every cabinet, looking at all my pots and pans, and when she got to my mixer, she caressed it as though she’d been reunited with a long-lost pet. She also had a sweet tooth, and her mother always kept a pack of strawberry wafer cookies for Katy in her purse.
Reminded of Meaghan and how much she’d loved our play dough projects, I whipped up a quick batch of white icing, brought Katy a spreader, and showed her how she could ice her cookies before she ate them. The next day, I greeted her with a giant bowl of that same white icing, as well as a couple of boxes of food coloring. That week, Katy learned that yellow added to red makes orange and that the more yellow you add, the lighter and brighter that orange becomes. Over the course of the next two weeks, we made every color we could with the l
imited palette available to us.
The next week, I gave Katy a pastry bag so that she could create stars and flowers with individual petals. As the weeks went by, I watched as her decorations got more and more sophisticated and ornate. Eventually, I went to a special baking supply store and got a much wider range of food coloring and pastry tips for her to work with. There were beautiful jewel tones and pastels in the color kit, but they paled in comparison with the shades Katy made, colors with names I know only from the catalogs: dusky violet, carmine, cyan, cerulean, goldenrod, fawn.
Eventually, Katy and I began making cakes to decorate together. I’ll never forget the wedding cake she copied from a magazine, with sugar pansies so real I was afraid to put them in my mouth. I was so pleased when her father called me a couple of months after we’d started working together to tell me that she’d gotten a job working in the bakery department of a supermarket in our community. Like the parents of so many autistic children, he’d been worried that Katy would be dependent on her mother and him for the rest of her life. She’d gone all the way through the special ed system, and they’d had very little to show for it. Of course, my goal hadn’t been to get her a job, but to find an activity that she could enjoy doing during the day. It had worked so well and so fast because she loved it.
“Katy has been in this world with you since you had her,” I told her dad. “She’s been to every party you’ve taken her to. She’s heard every conversation.” I believed that, just as I believed that Jake had been with us at that party so long ago with Clifford the Big Red Dog. When he was a toddler, he got lost in his alphabets because he couldn’t handle the social requirements. Since he couldn’t tell me what color balloon he liked or what kind of cupcake he wanted, he hid behind that book. But he’d been there all along.
I began acting as an advocate for a number of Little Light children in the public schools. I went to their IEP meetings with their parents, bringing with me a portfolio of the work we’d done together. I remember one meeting for a little boy named Reuben, who had joined us in our second year at Little Light and had done some skill development classes with me. Reuben was obsessed with boats, so we’d spent months learning about yachts and schooners and catamarans. We’d classified boats, written reports about boats, and made models of boats, just like the ones I used to watch my grandfather piece together in his garage for the grandchildren to play with at the lake.
During this time, Reuben had learned to read. He’d been motivated by a sumptuously illustrated book about the luxury liners of the early twentieth century. His handwriting and fine motor skills also had improved immeasurably due to the tiny lettering he’d used to write names on the sides of the boats we’d built together.
Everyone related to Reuben’s therapy and education had gathered around a big table for his IEP meeting. His physical, occupational, and developmental therapists were there, along with his mainstream classroom teacher, his special ed teacher, and the school psychologist. Everyone took his or her turn giving an up-to-date evaluation of Reuben’s abilities, and then the group used those to determine what percentage of the day Reuben should spend in a mainstream classroom.
When the group’s conclusion was declared to be 20 percent, I cleared my throat and opened his portfolio. His occupational therapist, for instance, had said that he couldn’t draw a circle—but there was an o and an a in “boat,” and I could prove that he could write that word beautifully. Reuben could do a lot more than they thought he could. We went through the whole folder together, and we were able to get that percentage up significantly.
Rachel’s son, Jerod, had been coming to my skill development classes, too, and he’d made a lot of progress as well. Rachel and I had become friends, and it drove her crazy that I wouldn’t accept money for the work I did. I tried to explain to her that it was simply the way I’d grown up. When I was little, Grandma Edie baked two pies every morning. The family would make short work of one of them at dinner, and there was always someone in the community—a recent widower, a family with a loved one in the hospital, or a couple with a new baby—who was grateful and happy to receive a gift of the second pie.
The truth is, that second pie didn’t feel like a “good work” to us. Doing charity was so much a part of our lives that we almost didn’t think about it. After all, it wasn’t much more work to make two pies when you were already making one. Helping other people who were going through a hard time, supporting the other members of our community—these weren’t lofty ideals that we spent a lot of time talking or thinking about; they were just what you did.
That model was my template for Little Light. I felt lucky, to be honest. How many people go through life wondering what their purpose is? I’d never had to wonder. I’d known that I had been put on earth to help children since I was a child myself. Between the daycare and Little Light, I got to be who I was and to do the work I loved. It was hard work, yes, but it was also incredibly fun. I felt filled up every day, knowing that I was contributing to an ideal bigger than myself. And I didn’t even need to leave the house! The doorbell rang, and there the kids were, my life’s work. What could possibly be more important than those children?
Since I wouldn’t take any money from her, Rachel would bring me sandwiches. Five pounds later, I cried mercy and was ready to listen when she asked if there was another, more meaningful way that she could help. Was there a program I wanted to do, for instance, that she and I could set up?
Yes, there was something that I felt was missing from the choices available to families with autistic children. The program I was thinking of would give these kids a place where they were celebrated while also helping them to establish a network of friends. It would allow them to have the ordinary childhood experiences that other kids took for granted.
Michael and I had both continued to prioritize happy childhood experiences for our own kids. We wanted them to make memories they’d think back on fondly their whole lives, little traditions they’d be able to pass along to their own children. For instance, we liked to go fishing at the lake, just as I had when I was a child. We caught frogs (actually, I caught the frogs while the boys made faces like they were going to throw up). We played laser tag and went to the community swimming pool. I planned epic Easter egg hunts with live rabbits, handmade chocolates, and hundreds of hand-painted eggs. We took homemade cookies in our picnic basket to the Holcomb Observatory grounds and made s’mores together in our backyard. Yet one crucial aspect of childhood was missing for Jake, an essential ingredient in a wholesome childhood, and that was sports.
I first had the idea of setting up a sports league for autistic kids back when Jake was two. At that time, other kids his age were attending movement and music classes, and even though he was still very much locked in his own world, I took him to a trial class at one of those toddler gyms. I thought he might like the giant padded-vinyl tunnels, the squishy ladders, and the cushioned obstacle courses. He did. What he didn’t like was sitting in a circle to sing songs at the beginning and end of class. We had only recently begun Little Light, and Jake hadn’t yet learned about circle time, so he kept wandering off to visit a giant inflatable ball they kept in one corner. The behavior wasn’t disruptive, however, and as soon as the children were allowed to leave the circle, he would rejoin the group.
While Jake bounced on the trampoline, I struck up a conversation with an older boy of six or seven, who was waiting with his mom for his little sister, who was in the class. He was wearing a handsome karate uniform, and when I complimented him on it, he puffed out his little chest with pride, making sure I saw the yellow belt at his waist.
By the end of the class, Jake was obviously having a great time, and I was very pleased by the progress he’d made. Still, when I told the instructor we’d like to sign up, he told me after an awkward silence that he didn’t think Jake was ready to participate. “If he can’t stay with the group, he can’t stay in the class,” the instructor said.
It might sound naïve, but tha
t 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.
The Spark Page 16