The Spark: A Mother's Story of Nurturing Genius (12 page)

We did that every night. There were some nights when I fell into my own bed, too tired even to brush my teeth. But compared to where we’d been the year before, that was a great problem to have.

After we’d been doing Little Light for about a year, my original daycare began to attract more special-needs children through word of mouth. This mixture of special-needs and typical children during the day and autistic children at night and on the weekends made for a kind of laboratory in my garage where I could quickly determine what worked to reach the kids—and what didn’t. Sometimes the tricks that worked were surprising, but they almost always boiled down to building a relationship with the kids.

Jerod was eleven when I met him and nonverbal. He’d been that way since he’d turned three. Over the years, his parents had tried all the traditional therapies, and every doctor they’d seen had told his mother, Rachel, that he would never talk. Rachel’s lip quivered when she told me this: “They say there’s nothing to work with.”

The very idea that someone would make a comment like that about a child made me feel sick. I spent ten minutes with Jerod and knew they were wrong. Yes, he was nonverbal, and it was immediately apparent that his autism was severe. Eleven was indeed late not to have any language at all, but there was something more inside him.

Even during that first meeting, while his desperate mom told me all the things he couldn’t do, he kept peeking out from behind her. I could see a sense of humor there, a curiosity, and that led me to believe that Jerod was capable of much more than he was letting on. When I’d smile at him, he’d peek back out at me again. The whole time this funny game of peekaboo was going on, his mother kept telling me how she’d been told to give up on her child.

Rachel mentioned that Jerod could make some noises, so I asked her which sounds he could make. (In other words, was there a physical delay or a neurological one?) “Can he make a hard
k
sound, like the
c
in ‘cat’?” I asked her. At that moment, Jerod started to grunt
loudly: “Uh, uh, uh, uh.” And he started to bang on the rug with his open palm. “Uh, uh, uh, uh.”

His mom was apologetic. “I’m so sorry!” she said, as she tried to settle him down. “Shhh, Jerod, please, we’re talking.” Then she reached into her bag, still apologizing. “Let me give these to him and he’ll be okay.” She pulled out a box of chicken nuggets. Jerod took one out and started to eat it in a way that will be instantly familiar to anyone who’s spent time with kids with autism—spinning it, nibbling around the edges and taking tiny caterpillar bites, still stealing peeks at me every once in a while. I was smiling because I knew that Jerod had been answering my question. He had been showing me what he could and couldn’t do.

The whole thing struck me as hysterically funny, and I started to laugh—and then Jerod started to laugh, too. Poor, astonished Rachel was wiping the tears from her eyes, trying to pull herself together, and there Jerod and I were, cracking up. By the time they left, I was 100 percent sure I’d be able to make strides with Jerod.

The next time Jerod and Rachel arrived, they found hundreds (and I mean hundreds) of customized alphabet cards scattered everywhere, all over the rug and the floor. Alarmed at the mess, Rachel asked helpfully, “Do you need me to help you pick these up?”

“No, thanks,” I said. Making eye contact with Jerod, I continued, “Actually, these are for Jerod.”

There were two important details about these cards I knew Jerod would appreciate. The first was the sheer number of them. The floor looked like the bottom of a snow globe. The second was the way they looked. Most alphabet cards are brightly colored or feature cartoon characters, because they’re designed for very small children who are learning to read. I had deliberately made these cards small and simple—bold black letters on white card stock. It was intended as a gesture of respect. Even if Jerod couldn’t read or speak, he wasn’t a baby, and he didn’t deserve babyish learning materials. As I had hoped, his eyes lit up when he saw them.

That day—our very first session together—I put the letters
A
and
T
on a blue Velcro bulletin board I’d made for him and asked Jerod to find me the letter that went together with them to spell “cat.” He looked around, found a
C
, and came right back to me. His mom’s mouth dropped open as I put it on the board to form the word. “Perfect,” I said. Then I ripped the
C
off the board and threw it over my shoulder to show him that we weren’t going to go through it a million times. We did the same thing with “hat” and “sat.” In short, we made more progress in an hour than he’d made in the previous eight years.

At the very end of the hour, I said, “Listen, Jerod. I want you to do something very important for me. I don’t care how it sounds. I want us to read the words that I spell out together.” I gathered a whole bunch of those little alphabet cards and started picking through them until I found all the letters I needed. Then I used them to spell out “I love you Mom” on the board.

“Okay, Jerod,” I said. “We’re going to do it together. This is a really important job, okay?” I reached up to touch my own mouth, and then I reached out to touch his. “I don’t care how the sound comes out. We’re going to go really slowly.” And then—and I can’t think about this without crying, remembering the look of shock on Rachel’s face—Jerod and I read the words that I’d spelled out on the board.

By watching and really listening to the children at Little Light, we could get a glimpse of what was inside them—and then all we had to do was get out of their way! I knew that the parents who participated were taking a huge leap of faith. I just hoped I’d be able to reward them for their trust. Because underneath the bravado, I was honestly scared that our kindergarten boot camp wasn’t going to work. Special-needs children don’t instantly “get better.” Instead, it’s more like two steps forward and one step back. If we were going to achieve our goals—and for Jake, that meant kindergarten readiness by age five—we couldn’t afford to lose any of our hard-won gains. We needed to aggressively reinforce any progress the kids made, or it would disappear again.

The llama in the living room was more the rule than the exception. Mike truly never knew what he was going to come home to, especially because I made so many of the things we used at Little Light myself.
For instance, I noticed that Jake loved holding and playing with beanbags, so I had the idea of using them to make a sensory-based exercise for Little Light.

I went to the remnant bin at the fabric store and scrounged up as many different types of cloth as I could find: soft velvet, ropy corduroy, slippery rayon, painfully scratchy burlap. I cut the fabric into squares and sewed them on three sides to make pockets. Then I filled them with sunflower seeds, which were inexpensive to buy in bulk (and safe if they happened to find their way into someone’s mouth), and left them like that in the kitchen, intending to stitch the last side of each pocket after Jake and Wesley were asleep. I must have made fifty of these beanbags, of all different sizes and fabrics, by the time Michael got home from work. And then from the kitchen I heard, “Kris, what the heck is going on?”

When I went to investigate, I saw that Jake had dumped all the sunflower seeds, from each and every pocket, into a set of cylindrical glass vases. Of course, his not-quite-four-year-old motor skills meant that there were as many sunflower seeds on the floor as there were in the vases. There were seeds
everywhere
. (We’d had a similar incident a few months earlier with Styrofoam packing peanuts. I’d let the kids at the daycare run wild with them, and we were still finding tiny smashed bits of them all over the place. Lesson learned: At least sunflower seeds are biodegradable.) I threw my hands up in the air, Michael opened the sliding door, and we swept the seeds right out into the yard.

I can’t emphasize enough how important it was to have Michael’s support, even though he had initially been opposed to the whole idea, and even though my work at Little Light meant that he was frequently coming home to chaos of one kind or another. None of what I was doing would have been possible without him. In fact, the daycare and the charity completely dominated our lives. For instance, sometimes I had to do our household grocery shopping in the middle of the night because there was no other time to do it.

One afternoon, while sitting in the car outside the bank filling out some last-minute forms, Michael noticed a little boy standing by himself
at the preschool next door. The boy was off to the side, looking through the fence while his classmates played behind him. Mike noticed him because he was flapping his arms, a telltale sign of autism. Paperwork forgotten, Mike sat and watched for half an hour, then got out of the car and went inside to suggest ways to get the boy more involved with his classmates. When he got home, he held me close. “The whole time I watched, nobody came to him,” he said. “There may be glitter on our ceiling, Kristine, but none of the kids who come to Little Light ever feels as alone as that little boy did today. I could not have seen that without you.”

Our shared understanding was essential, especially because I charged nothing for Little Light—not for the sessions themselves or for the materials—which put a serious strain on us financially. In those early years, Mike worked at Target, and I earned money through my daycare. We didn’t have an extra $150 lying around to spend on Ring Pops, even if they were great tongue and mouth exercise tools for kids with apraxia. But we always found a way to make it work.

Sometimes families would try to pay me, but I couldn’t accept money from them. These people were already living the kind of torment you can’t understand unless you’ve lived through it yourself, and I wasn’t going to contribute to that. I felt then—and still do now—that my mission in life is to bring hope to these families and to help realize the full potential of children, both special-needs and typical.

The yard behind our little house was tiny. I often said that we were lucky it wasn’t bigger because at that moment in our lives, we didn’t have much time to spend on ground maintenance. Even so, when spring came, I was surprised to see the little patch outside the kitchen completely overrun with weeds.

“What in the world is going on with those weeds?” I asked Mike one morning as I was trying to coax Jake to take one more bite of his breakfast.

Michael headed out to investigate, and I heard him start to laugh. “These aren’t weeds, Kris. They’re sunflowers!”

Ah, right
, I thought.
Sunflower seeds—not just beanbag filler
.

The discarded seeds we’d swept out into the yard in the fall had taken root—and with a vengeance. To my delight, over the course of that summer, those sunflowers grew to over six feet tall. By August, to get into our backyard, we had to wade through a field of those gigantic flowers, all slowly turning their faces toward the light.

T
he news that I was pregnant again was a shock. Michael and I had always said we wanted a houseful of kids, but my previous pregnancies had been so difficult and Wesley so sick when he was born, it seemed impossible to believe that this one could have a happy outcome. My own doctor’s response, when he heard the news, was not encouraging. He referred me instantly to a high-risk specialist, saying, “I don’t deal well with casualties.”

But between Wesley and Jake and the daycare and Little Light, we simply didn’t have much time to dwell on our fears. Whenever I got scared, Michael would say, “Whatever happens, we’ll deal with it—together, and one day at a time, the way we’ve dealt with everything else.”

In fact, Michael and I were beginning to feel cautiously optimistic about our sons. Mike had been taking Wesley for aquatic therapy, which was similar to the stretching therapy we’d been doing with him, except that it took place in a pool at the hospital. It seemed to be working. Although Wes still wasn’t walking at two and a half, he seemed much more flexible and in much less pain. He was also choking less, and even though he was a long way from being able to eat solid foods, he was beginning to tolerate liquids. At least I wasn’t staying up all night anymore just to make sure he was still breathing.

By the time Little Light was in its second year, nobody provided us with more reassurance than Jake. Not long after we pulled him out of special ed, it became clear that Jake’s particular passion had to do with astronomy and the stars. By age three, he could name every constellation
and asterism in the sky. I believe Jake’s interest in the planets had its roots in his obsession with light and shadows, which we’d noticed even when he was a tiny baby.

Right after we started Little Light, Jake became preoccupied with a college-level astronomy textbook someone had left unshelved on the floor at the Barnes & Noble near our house. The book was huge for such a little boy, but he dragged the huge cover open and then sat absorbed in it for more than an hour.

It was certainly not a book for a three-year-old. Taking a peek over his shoulder, I was put off by the minuscule text and arcane content. Most of the pages were taken up by maps of different parts of the solar system. There was no narrative at all—no retelling of the Greek myths that gave the constellations their names, not even any scientific explanations—just maps. My eyes glazed over as I flipped through it. What did Jake want with this book?

But when it came time to leave, there was simply no separating boy and book. I would put it back where it belonged and take Jake’s hand to leave, and he’d break away from me and make a beeline right back to it. After a few go-rounds, I could see we weren’t going anywhere unless that book came with us. I heaved the gigantic thing into my arms, took his hand, and got into line. At least it was heavily discounted.

To my complete surprise, that cumbersome book became Jake’s constant companion. Its heft meant that his only way of transporting it around the house was to open the cover and drag it with both hands. After a while, it got so beat-up that Michael had to reinforce the spine with duct tape. Every time I looked through it, I couldn’t believe that this highly technical manual, clearly intended for advanced astronomy students, could possibly be of interest to my little boy.