The Spark: A Mother's Story of Nurturing Genius (7 page)

Still, I couldn’t help noticing that when Jake’s therapists had left and he was playing by himself, he seemed deeply engaged. To others, it might have looked as though he was simply zoned out, but I didn’t see his focus as blankness. When he was spinning a ball in his hand, or drawing geometric shapes over and over, or dumping those boxes of cereal onto the floor, he seemed to me to be completely transfixed. His attention didn’t seem random or thoughtless. He looked like someone who was lost in very important, serious work. Unfortunately, he couldn’t tell us what it was.

Occasional glimmers of light did come through, though, and when they did, they were extraordinary.

Because of the daycare, I always had hundreds of crayons stored in
big tins, and Jake loved to dump all of them onto the floor and then line them up side by side, just as he liked to arrange his toy cars. Late one evening, while I was tidying up the living room, I stopped for a moment to take a breath and to appreciate the precise and harmonious pattern Jake had left on the rug, a beautiful array that transformed hundreds of ordinary crayons into a rainbow.

As I knelt to pick them up, tin in one hand, a murky memory from high school science bubbled up out of the deep recesses of my brain: the mnemonic ROYGBIV, for the colors red, orange, yellow, green, blue, indigo, violet. A chill went up my spine. The pattern that Jake had made didn’t just
look
like a rainbow—it
was
a rainbow. Brick red was placed neatly next to burnt umber, cadet blue next to purple mountain majesty. The crayons weren’t only lined up meticulously, which would have been unusual enough for a child of two and a half, but they were also in the precise order of the color spectrum.

Jake was at the breakfast table the next morning when I told Michael about the crayon rainbow. Frankly, I was a little freaked out. “How can he possibly know the order of the color spectrum?” I asked. “I could barely remember ROYGBIV!” As if in response, Jake reached out to the table and turned the faceted water glass in front of Michael so it caught the morning sunshine pouring in from the sliding door, splashing a gorgeous, full-spectrum rainbow across the kitchen floor. All three of us turned to look at the vivid rainbow.

“I guess that’s how he knows,” Michael said.

Another day around the same time, I was hurrying to find the right gift at a toy store before Wesley started to fuss. Jake was occupying himself at a shelf full of music boxes, opening and closing the lids and listening to the songs. As I was paying for the gift, Jake went over to an electronic roll-out piano mat the store had set up for demonstration purposes by the cash register. While the woman behind the counter wrapped my present, Jake cocked his head to one side and, without missing a single note, began playing the tunes he’d just heard. The saleswoman’s jaw hit the floor. He was able to play each song after hearing it only once. That was shocking enough, but the saleswoman
didn’t know that this was the first time Jake had ever seen a piano keyboard.

Sometimes I felt as if I was the only person who could see any of Jake’s special abilities. The therapy reports grew more and more alarming, and Jake’s distance from Michael and me felt nearly complete. Our once affectionate boy didn’t talk to us, didn’t hug us, didn’t tell us he loved us. He wouldn’t even look at us unless we happened to get in the way of one of the shadows he was staring at.

Every day, it seemed as though there were fewer activities Jake would—or could—participate in. But I wouldn’t relinquish all of them. Because Michael worked in retail, his hours could be crazy. During the holidays, for instance, he might work from three in the afternoon until three in the morning. Whenever Michael’s work schedule had robbed him of coveted family time, Jake and I would wake him up for a quick good-morning hug and kiss before starting our own day. I can’t describe how happy it used to make me to open the door to our bedroom and see Jake’s face light up at the sight of Michael. “Daddy!” he would cry, and at the sound of his son’s voice Michael’s eyes would open—and his arms, too.

All that, of course, had gone away, but still I persisted, hoping that Jake would once again reach out for his father. One morning, with my hand on the doorknob to our bedroom, I thought about the look on Michael’s tired face the day before, wondering if it was fair to wake him up for nothing. Ultimately, though, I turned the knob. Maintaining routines that had once been filled with laughter and love was our way of keeping the candle burning in the window, lighting the way for Jake to come back to us.

It wasn’t easy. Every night, I’d get into the shower after I’d cleaned up the daycare space and put the boys down, and I’d just cry and cry—from the exhaustion, from the fear and the sense of hopelessness, from knowing another day had passed and I hadn’t done enough, and from knowing that we’d have to get up the next day and do the whole thing all over again. That year was so hard, some nights I’d stay in the shower crying until the hot water ran out.

Some days, it was especially hard to keep the faith. Joey, a little boy almost exactly the same age as Jake, had been coming to the daycare since he was a newborn and had been diagnosed with autism at roughly the same time as Jake. We began working with Joey and Jake together, and when we started hearing good reports about a casein-free, gluten-free diet, we started both of them on it.

Jake didn’t respond to the diet at all. But it worked for Joey, and so quickly that it felt like a miracle. After two weeks, Joey was speaking again. Every parent of an autistic child dreams of hearing his or her child’s voice again, and when Joey spoke for the first time, I wept with gratitude. Later that night, I wept again, because my own son still couldn’t talk, and I was starting to believe all the therapists and experts around me who didn’t think he ever would.

T
he state-funded First Steps program ends on a child’s third birthday, and all services stop. It’s possible to apply for a waiver to keep some of the therapy going, but there’s a long waiting list. I’ve heard of cases where the child was twelve or thirteen before he or she qualified for additional help.

Jake’s birthday is in May. His autism diagnosis meant that he would be eligible to get therapy through a developmental preschool—special ed—in the fall. But with First Steps over, we had an empty summer before school started, and I had no intention of wasting it.

All the research indicates that the best window for reaching autistic children is before they turn five. So every day for us was a race against the clock. We’ve all heard the urban legend about the mother who found the strength to lift a car to save her child. That was exactly the kind of drive I felt. I was going to do everything within my power to make sure Jake didn’t slip further away.

Michael and I knew enough, as most parents would, to keep the basic protocol going. But we wanted to do more. Some of Jake’s therapists, such as Melanie Laws, had become friends and were kind enough to answer when we pestered them with question after question. There was still a great deal to learn. Michael and I stayed up late every night, reading every book we could get our hands on. Our bedroom looked like a dorm room during exam time, open textbooks and notebooks strewn everywhere.

That summer, as we began working with Jake on our own, I was
determined to find a way to communicate with him again. Unfortunately, even though the whole family had learned it, our attempts with sign language had been fruitless. Watching Jake in his therapy sessions, I could see these were empty gestures for him, and finally, in a state of complete frustration, I ripped every one of the sign language posters down.

On an Internet newsgroup I read about a set of flash cards that had been developed for stroke patients. Called the Picture Exchange Communication System (PECS), the cards hadn’t been widely used with autistic children, and they were extremely expensive. But I kept thinking about the alphabet flash cards Jake loved so much and the way he gravitated toward pictures, and I thought that PECS might work for him.

It did. Within a few weeks, he could point to the right card when we said the word that corresponded to the picture. It felt like a tremendous breakthrough. After a year of practically no communication whatsoever, Jake was responding.

I rushed in to fill the void. I remember walking into the kitchen to find Michael, a puzzled look on his face, flipping through a set of photos he’d picked up from the drugstore. In the envelope, along with pictures of Wesley and Jake at the zoo and an apple-picking farm, as well as a few shots of Jake lining up Matchbox cars on the coffee table, he’d found some still lifes I’d asked to have printed on the extra-long paper used for panoramic shots. These included a basketful of crayons, a gallon of milk next to a sippy cup, a bowl of mac and cheese, and a CD player with some CDs next to it. In Michael’s hand was a giant portrait of our toilet. I laughed and explained: I had been trying to make Jake his own customized PECS cards, so he could use them to point to what he wanted to do.

Melanie was very excited by how quickly the cards had worked and advised me to keep going. “Let’s try to get him back to the high end of the spectrum this summer,” she said. “Let’s not let him lose any more ground.”

So the two of us put together a highly sensory program for Jake. Michael and I couldn’t do it all ourselves, so we got National Honor
Society kids from my old high school to come to our house to help. They needed volunteer hours, and we needed volunteers.

The kids were great, but nobody was having much fun. Jake wasn’t speaking, but it didn’t take a trained professional to interpret the way he felt about the activities we made him do. He was bored. Sometimes Melanie and I would laugh because he looked so much like a jaded teenager, his toddler body lolling away from the table, chin dropped wearily onto his chest. Sometimes when she’d take out an exercise, he’d roll his head back in exasperation, as if to say, “This again?” If he did the exercise, it was clear he was indulging us. “C’mon, Jake, work with me here, buddy,” Melanie would say, teasing and cajoling him along. Sometimes he’d yawn right in her face. Yet I continued to notice that when he was playing by himself, his focus was ferocious.

You can’t make too many generalizations about autistic kids, but I feel comfortable making this one: They
love
string. Jake would get into my knitting basket and play for hours with the yarn. One morning when I walked into the kitchen to refill my coffee cup, the scene before me took my breath away.

Jake had run different-colored yarn all around the kitchen—crisscrossing through the refrigerator handle and around the garbage pail, the table and chair legs, the cabinet pulls, and the knobs of the stove. The result was a series of brilliantly colored, intricate, overlapping webs. Using yards of yarn, he had created not a terrible, tangled mess, but a design of complexity, beauty, and sophistication. I was awestruck.

That phase went on for months. It must have seemed a little crazy to let him take over the house this way. Some days it was even impossible to get into my kitchen. But his intricate designs were spectacular to look at, and when the sun streamed through the windows, the shadows they threw moved and changed as the day progressed, involving the whole room in a complex play of light and dark. These creations were evidence to me that my little boy was in there, busy working on something magnificent. They gave me a way in, a glimpse into his private world and his extraordinary mind.

The contrast with his behavior in therapy was stark. When working
with the yarn, Jake was engaged and alert. Obstacles didn’t frustrate him, and nothing could distract or divert him. He was unstoppable. I began to find that if Jake had time to spin his webs in the morning, he was more tolerant of whatever therapy he had to do later in the day.

I also prioritized his comfort, even during therapy itself. Like many autistic children, Jake really liked to be squished. I had read all the research showing that compression is comforting for people with autism. I knew about the wonderful autism and animal rights activist Dr. Temple Grandin and the “squeezing” machine she had designed to compress herself when she was a child. So I made Jake a special pouch by folding a hammock, sewing it lengthwise up the back, then hanging it from the ceiling. When he was in the pouch, it enclosed him completely, but because it was woven, he could still see out. That was important to me. It meant that even when he was tucked up comfortably inside, he was still in the room with us. I’d swing him three or four times, which he loved, and then I’d hold up two flash cards, name the object on one of them, and ask him to point to the correct card. Invariably, we found that his ability to focus on the recognition games was much better when he was in his sling.

We snuck therapy in wherever we could. I took the wooden toy train table from the daycare, but instead of filling it with trains, I lined it with a velvety blanket and then dumped in thousands of dried beans I’d gotten from the bulk section of the supermarket. One of Jake’s favorite comfort rituals, especially if he’d experienced a stressor such as a change in his schedule, was to climb up and burrow into the beans with an alphabet book. I took advantage of the fact that the other children in the daycare also loved playing in the beans (it was like a sand table, only easier to clean up) and would ask Jake to take a break from his book to hand them a funnel or a sand toy to play with, incorporating some social goals into what would otherwise be solitary play.

The other change we implemented that summer was more subtle, but in my heart of hearts I credit it with Jake’s emergence from autism.

One afternoon Jake was working with one of the high school students at his little table in the living room. It was the first truly hot day of the summer, so hot we decided to turn the sprinklers on for the kids
in the daycare. After a long winter cooped up together, they burst out into the yard, their bare feet slipping on the wet grass as they laughed and squealed and splashed around. It was a glorious moment—the kind of typical childhood experience, I realized with a start as I looked out the window at them, that Jake hadn’t had since his diagnosis.