The Spark: A Mother's Story of Nurturing Genius (14 page)

Some of the Little Light moms had been so worn down, they weren’t even looking at their kids anymore. First they’d lost them to autism, then to the strain of having an autistic child. I could understand
that. During that first summer off with Jake, I’d learned this lesson myself. It wasn’t only Jake who needed typical childhood experiences; I needed them, too!

Jake began to talk more, and we started to get an idea of what had been going on inside his head all the time he’d been lost to us. He could finally tell us what he’d been doing and thinking about. “I’m going to need a cup of chicken soup to handle that one,” I’d say (and still do) when he knocked us flat with one of his pearls.

For instance, one of Jake’s favorite games had always been to spin people. He would walk around the daycare, choose someone, lead him or her to a very specific spot, and then set the person in motion, spinning him or her like a top. If you were spinning, you couldn’t move out of your spot, and you had to maintain your speed. Then he’d lead someone else to a different spot and set that person in motion, too. The kids in the daycare thought this was a blast, so sometimes everyone in the room would be standing and spinning at different speeds.

We had always chalked this up to his autism—a meaningless and repetitive behavior that gave him pleasure—until one afternoon when he was about four and had begun communicating with us a little more. Slightly under the weather, I kept slowing down as I was spinning. Jake returned over and over to correct me, until I finally put my foot down: “I’ll spin, honey, but I have to go slow.”

“You can’t spin slow, Mommy,” he said, exasperated. “The ones closer to the sun go faster.”

We were planets. Only after I searched Google did I fully understand that Jake had been using the children at the daycare to model the planets, which rotate at different speeds depending on where they are in relation to the sun. Jake hadn’t picked that up through osmosis, but by intuition. Somehow, while he’d been locked deep inside his autism, he’d figured out Kepler’s laws of planetary motion.

The more we learned about Jake, the more I realized how fortunate it was that we hadn’t taken away everything he’d been using for self-stimulation in those early days. The cereal he’d dump out onto the
kitchen floor? He was figuring out the volume of the boxes. The webs of colored yarn that made it impossible for me to get into the kitchen? Those were equations, using a parallel math system that he’d invented.

After years of what had felt like relentless gray rain, we’d finally gotten a break. There had been glimmers of light all along, glimmers that sometimes only I could see. Now we were learning that in the silence, Jake had been steadily working his way through some of the great breakthrough moments in science. Can you see what I mean about needing to sit down with a little chicken soup to calmly digest it all?

Most amazing to me was the evidence of Jake’s creativity. I had heard about savants—human calculating machines, people with photographic memories who could remember every fact they’d ever seen or heard. But Jake wasn’t parroting information he’d read somewhere. He actually understood how to analyze the facts he’d been learning; he knew what they meant. Even before he could read, when we thought he’d just been staring at the shadows on the wall, Jake had been making real scientific discoveries. It was incredible to realize that all this potential had been there the whole time. My beloved boy hadn’t been missing after all. He’d just been working. And now that we were beginning to understand what he was capable of, it was even more terrifying to think about how much might have been lost.

I’m sure it is no coincidence that some of Jake’s work in physics today concerns light waves and how these travel. He believes that his research will lead to a much more efficient electronic transmission of light. That’s why I always ask the parents I work with about their children’s earliest and most persistent interests. In the case of parents whose children are locked in, I ask what kinds of activities their kids were interested in before the onset of the autism. A good friend of ours is a brilliant engineer. It’s no wonder that his mother says he started taking household appliances apart as soon as his fingers were big enough to hold a screwdriver. Our strengths and skill sets are there, right from the beginning, but they need time and encouragement to flourish.

This is an important point. Because of his autism—because we couldn’t reach him—Jake had a lot of time and space to do what he was naturally drawn to do. Simply because he was so locked in and unreachable, he was afforded much more time in his day than most kids to focus on the things he cared about: light and shadows, angles and volume, and the way objects move in space. Nobody was telling Jake
how
to learn, because nobody thought he could. In that way, autism had given Jake a bizarre gift.

We think of these children as missing; we think they need to be cured. But I believe that curing autism would be the same as “curing” science and art. I always told the parents at Little Light that if they could get into their children’s worlds, instead of expecting their kids to come out to them, they’d find some beautiful things. It’s up to us to build a bridge to our children, so that they can show us what they see and we can begin to draw them back into our world. In Jake’s case, astronomy and the stars gave me the connection with him I had so desperately craved. Before the observatory, the planets had always seemed like boring balls to me. But when Jake started giving me glimpses of this world through his eyes, I could see how spectacular it is. Soon after he turned four, he called me over one day to show me some pictures of a nebula on the computer. He had become interested in examining light and colors chemically, and the pictures he showed me knocked my socks off. The nebulae were like fireworks, or spectacular stained glass windows.

Seeing my tiny son point out the chemical signatures of the gases was a revelation for me. I realized that this was art to him, an experience as profoundly moving and emotionally intense as an architecture buff seeing the cathedral at Chartres for the first time, or a lover of Impressionist art left alone in a room lined with Monet’s water lilies.

By their second year at Little Light, all the kids were starting to thrive. “How did you do it?” people would ask me, sure that there was a magic bullet. The gains were tremendous, given how little it sometimes seemed we’d been doing. Sure, we’d done some repetitive therapies with the kids, but not nearly as much as was recommended.
Nobody would have believed me if I’d told them what we’d really spent our time on! “Well, with one of these kids, I spent six hours at the museum looking at a single painting. I bought another one a used drafting table on Craigslist and dropped it off at his mom’s house. I taught one of them to read by baking hundreds of cookies with her and then decorating them with the letters of the alphabet in icing. And then there was the llama …”

The results we were getting spoke for themselves, and as more and more people heard about what we were doing at Little Light, more and more began to come. They came from all across Indiana, even from Illinois. They brought grandparents and therapists to see their kids do what they’d once thought was impossible.

The fact that people would make this pilgrimage, some driving three hours for an hour-long class on a weeknight, seemed a little crazy to me. I don’t know what those parents were expecting at the end of that long drive, but I’m pretty sure it wasn’t a daycare in a suburban garage at the end of a cul-de-sac. They had all been to gleaming, high-tech medical facilities; they’d all paid for cutting-edge therapies; they’d all seen the brightest doctors. Yet here they were, sitting on the floor of my little garage.

As my pregnancy progressed, I was really uncomfortable. As with all of my pregnancies, I had grown very big, and getting up and down off the floor with the kids was increasingly hard. Then one afternoon in July, while I was tidying up some blocks from the daycare, I fell to my knees in excruciating, intolerable pain. Something was seriously wrong.

I was rushed to the emergency room and immediately admitted. I thought the baby was dying. I thought
I
was dying. I was terrified of hurting the baby, so I was on the minimum dose of painkillers. After days of tests and unrelenting pain, my doctor told Michael and me that they’d hit a dead end. To find out what was wrong with me, they’d have to operate. At eight and a half months pregnant, I went in for major exploratory surgery.

I had been in full-on organ failure. The surgeons removed my gallbladder,
which had completely failed and turned out to be horrendously infected.

Two and a half weeks later, our third son, Ethan Michael, was born. I do not recommend delivering a baby less than three weeks after abdominal surgery. But on the other side was our beautiful baby boy.

After we’d found out that we were expecting another boy, Michael and I had talked about what it would be like. “This kid is going to have a hard time, Kris,” Michael mused. “No matter what he does, we’ll have seen it already—twice—with his brothers. He needs to have something cool of his own.” As a joke, he started calling my bump “Joey Danger,” as in “My middle name is Danger.”

The closer we got to the birth, however, the less of a joke it became. I was still rolling my eyes, but Mike finally talked me into naming this new baby “Joseph Danger Barnett.” After all, I thought, it was only a middle name. If he hated it when he got old enough to care, he could drop it.

But when the doctors put Ethan into my arms, both of us knew instantly that Joey Danger wasn’t the right name for him. It would absolutely have been the right name for Wes, but we could tell at a glance that there wasn’t anything dangerous about this new little boy. So within the first few days, he acquired a much more appropriate nickname, one that stuck for the first couple of years: “Peaceful.”

Every parent thinks that his or her newborn is perfect, but Ethan actually was. He didn’t cry. He didn’t fuss. He ate well. He slept through the night. He smiled if you made a funny face, and he smiled if you didn’t. He was so quiet and happy that I honestly thought something was wrong with him until our pediatrician convinced me that I was just torturing myself. Unlike both of his brothers, Ethan was 100 percent healthy, right from the get-go.

In truth, we were constantly on the lookout for a problem; we knew the statistics. More than once, I caught Wesley’s therapists surreptitiously checking Ethan’s muscle tone or his ability to maintain eye contact, in the guise of cuddling or playing peekaboo with him. But
they never found anything wrong. Ethan was a perfectly happy, perfectly healthy, sweet, calm baby boy.

And he cuddled! After the first year, Jake had been too autistic for cuddling, and Wesley had been in too much pain and then too active. But “Peaceful Ethan” would snuggle in for the long haul. The denim sling I carried him in was always covered with finger paint and cookie dough from our activities in the daycare, but I didn’t mind. Wherever I went, Ethan went, too.

M
ichael likes to say that I snuck Jake into kindergarten. In a sense, he’s right.

By the time the back-to-school sales started in August 2003, the kids in my Little Light groups looked like kindergarten professionals. Even the lowest-functioning children were vastly outstripping whatever forecasts they’d been given when we started. I felt certain we were ready. The bigger question was, were the schools ready for us?

Every year before school starts, the new kindergartners attend a Welcome to School event, where they meet their teachers and see their classrooms for the first time. That was a big night for us. It was my chance to draw parallels for Jake between all the Little Light sensory centers we’d been working with and the classroom he’d be in for the next year. “That’s where you’ll be sitting during circle time,” I whispered to Jake, “and that box is your cubby.”

He nodded to indicate that he knew. But I was glad to meet his teacher, Mrs. Hoard. I liked her immediately for her gentle intelligence and warm personality, and I felt grateful for her many years of experience. I could tell that she’d seen a lot of children with different issues and learning styles over the years.

I told Mrs. Hoard about Jake’s diagnosis and reassured her that I was confident he’d get along fine. We’d been “doing kindergarten” every single night at Little Light for two years. In response, Mrs. Hoard put her arm around my shoulders and said, “Let’s give him a little time and see how it goes.” I was grateful to know that she wasn’t going to go looking for an excuse to drop the hammer on him. But I
also knew that she’d have twenty-five other kids in her class, each deserving of equal attention, and nobody’s patience is limitless. To stay in mainstream school, Jake would need to succeed.

To Mrs. Hoard, Jake was a regular kindergartner. But the school administration wasn’t so sure. While I was walking in to Welcome to School night, the principal intercepted me and said, “Mrs. Barnett, can I see you in the hallway, please?” She wanted to talk to me about Jake’s Individualized Education Program (IEP). After a panel reviews a special-needs child’s most recent evaluations, they draw up a document setting down the goals—academic, behavioral, and social—the school has for him or her over the coming year, including details such as how much time the child will spend interacting with nondisabled children and the kinds of supplementary services and aids he or she can expect in the classroom. Jake was still classified as a special-needs student.

Three-year-old Jake had been stimming, nonverbal, and unresponsive. He hadn’t seemed like someone who was ever going to speak, read, or make friends. The people evaluating him then didn’t think he could learn at all, so the school was expecting him to be the same at age five as he’d been at age three. He wasn’t, of course. We’d made tremendous strides since his time in developmental preschool. But the school administrators didn’t know that—yet. I didn’t want to be confrontational. All I wanted was the chance to show them what Jake was capable of. For that, as Mrs. Hoard said, we needed a little time.