The Spark: A Mother's Story of Nurturing Genius (5 page)

Over the next few weeks, however, it became clear to both of us that we were losing Jake. In October 2000, First Steps came to the house to conduct a formal evaluation.

The night before, I was such a wreck that Michael called my brother, Ben, to come and lend moral support. Ben is always hatching some wacky new plan, whether it’s turning the guest bedroom into a yoga studio or draping sheets of meat over every surface in his house to make homemade beef jerky. But even high-spirited, practical-joke-playing Ben was solemn on the day of Jake’s evaluation, and nobody on earth could have brought a smile to my face.

As we shook hands with the evaluating therapist, Stephanie Westcott, I was keenly aware that everything in our world was riding on the next few hours. This woman’s verdict would either leave us rejoicing or cast us out even further into the desert—and we’d seen enough to know exactly how bleak that landscape could be. My hands shook so badly that Michael had to press them hard between his own hands to get them to stop.

By midmorning, I felt physically ill. We didn’t need special training to see how badly the evaluation was going. Most of the time, Jake didn’t even respond when Stephanie spoke to him. He wouldn’t make eye contact with her. He wouldn’t point at the circle, put the star in the shape stacker, or put the rings on the tower. He wouldn’t sort objects by shape or by color, even though he spent a lot of time doing those types of activities on his own. He wouldn’t sing along with her for Itsy Bitsy Spider or show her with his fingers how the spider crawls up the spout.

When he recited the alphabet, my heart lifted. But Stephanie didn’t look as impressed as I’d hoped, not even when he recited it backward. At one point, when she tried to guide Jake to a new activity after playing with crayons on the floor, he cried and refused, his whole body stiffening. By the time she had convinced him to move along to the next exercise, my blouse was soaked in sweat.

Then Stephanie asked Jake to do a wooden puzzle with her. I let out a breath I didn’t know I’d been holding, and Michael and I allowed ourselves to exchange a glance of relief. We both felt certain that he would do well on this one. Jake had loved to do puzzles since his pudgy baby hands were big enough to hold the pieces, and he was a whiz at them. The puzzle she was asking him to do was similar to some of the ones he had—easier, even—so we were confident that here, at least and at last, Jake would score well.

But just then, as Jake’s moment to shine finally arrived, he decided that he wanted to play with his alphabet magnets.

Jake was obsessed with the colorful plastic alphabet magnets we kept on the fridge. He had dozens of them and carried them everywhere
he went. Hoping to avoid a possible distraction during the evaluation, we’d put his magnets away in a box on a bookshelf, thinking that out of sight would be out of mind. The tactic, unfortunately, backfired, and Jake’s single-minded focus was now squarely on getting those magnets off the shelf.

Jake would get up and make a beeline for the box, and Stephanie would gently but firmly lead him back to the table. The battle raged on as the minutes ticked by. I couldn’t bear to watch, staring instead at Michael’s hand clutched over my own, his knuckles a startling white. Finally, and after quite a bit of time, Jake agreed to stay seated, but his whole body was craning over the back of his chair toward the box of magnets. After even more coaxing, he finally did the puzzle—without looking at the puzzle itself or at Stephanie sitting across from him, instead still leaning over the back of his chair, his eyes trained on the box.

I felt as if the whole world had come crashing down. After all, this was something he
could
do, something he was good at. We’d been banking on this puzzle to be a bright spot in what had been a dismal performance so far. I realized how desperately hopeful I was that a success here could somehow make a significant difference in the overall results, and Michael must have been feeling the same way.

“Listen,” Michael said. “Sorry to interrupt, but he’s really distracted. He’s doing it by feel, and he’s using his left hand—he’s a
righty
! Give him another chance to show you how fast he can do it?”

Stephanie looked at Michael in open disbelief and said, “Mr. Barnett, usually it takes children of Jake’s age approximately two minutes to do a puzzle of this complexity.” She told us it had taken Jake—even with his nondominant hand and while looking behind him toward the box of magnets the whole time—just fourteen seconds.

“Attaboy!” Mike said, punching his fist into his open hand, and I felt a weight lift, too. He’d aced one! Now we were on the right track. I was sure that once Stephanie could see what Jake was capable of, those strengths would offset all the other tasks he either couldn’t or wouldn’t do. For the first time in weeks, I allowed a little hope to
creep in. We’d do more therapy. We’d do whatever they wanted us to do. All I wanted was to hear her tell me that my baby angel was eventually going to be okay.

After the hours of testing were finally over, Stephanie sat down with us and said, her face grave, “Jacob has Asperger’s syndrome.” A wave of relief washed over me; I had been prepared for worse.

“Oh, that’s great news,” I told her. “We were afraid he had autism.”

Stephanie went on to explain that Asperger’s is a form of autism. Ultimately, however, the distinction wouldn’t matter. Jake’s diagnosis would soon change from Asperger’s to full-blown autism.

That day was our introduction to the concept of scattered skills. Stephanie explained that it’s quite common for autistic children to be relatively high functioning in some areas, even if they’re coping with significant delays. At two, for instance, Jake could easily do a complicated maze more quickly than I could, but he couldn’t make eye contact, which is a developmental hurdle that a baby ordinarily clears between one and three months—and something that Jake had also been able to do until he was about sixteen months of age, when he began to regress. The term for these peaks and troughs in standard developmental milestones, Stephanie told us, is “scattered skills.” Children are diagnosed on the autism spectrum when their skills, instead of lining up neatly, are scattered all over the developmental map.

That was when I lost it. I suddenly understood that the bright spots Michael and I had pinned our hopes on during the evaluation wouldn’t lift his score or change the outcome of the assessment. Suddenly, it was all too clear: All the little things we’d been so quietly proud of—Jake’s early reading, his speedy ease with puzzles, his ability to concentrate and focus for long periods—didn’t contradict the autism diagnosis but instead confirmed it.

Jake’s gifts were inextricably tied up with all these terrifying shortfalls, and for the first time I allowed myself to face the ugly reality of what those shortfalls would mean for Jake and for the life we had dreamed of for him. I felt like a fool. What did it matter now if he could do a puzzle faster than some other kid if it meant that he’d
never be able to ask a girl out on a date or shake hands with someone interviewing him for a job?

Stephanie Westcott’s report from that day reads in part: “Interested in shadows, bright lights. Twirls himself. Limited response to minor pain.”

We went to bed absolutely shattered. Michael held me tight, but I didn’t close my eyes once all night. When I wasn’t consumed with worry about Jake’s future, I was racked with anxiety about whether the same fate was in store for our new baby—another son, we’d recently learned—who was on the way.

A
utism is a thief. It takes your child away. It takes your hope away, and it robs you of your dreams.

Whatever you did with your child, I did with mine. I took him to the petting zoo and the aquarium. I bought that cute little outfit with the matching hat. And I worried about which was better, Huggies or Luvs. We were an ordinary family, and Jake was an ordinary baby, having an ordinary babyhood. Then he began to withdraw from us, and with that initial diagnosis of Asperger’s, any hope of normalcy disappeared.

By age two and a half, Jake was a shadow of the little boy he’d been. Most of the time, it didn’t even feel as though he was in the room. He had stopped speaking entirely. He no longer made eye contact with anyone, nor did he respond when he was spoken to. If you hugged him, he’d push you away. The best you could hope for was that he’d let you hold him for a few seconds while he ignored you, staring at the shadows on the wall. He wouldn’t ever ask for food or drink, and would eat only plain foods prepared and served in particular ways. I had to keep close track of his liquid intake so that he wouldn’t get dehydrated.

He’d spin in circles until he got dizzy. He’d spin objects in his hands or on a flat surface, sometimes staring so intensely at the spinning object that his whole body would shake. These spinning behaviors are hallmarks of autism, referred to as “self-stimulation,” or “stimming,” in the autism world. He loved flash cards of any type, especially ones with the letters of the alphabet on them, and he carried them everywhere.
He was obsessed with cylinders and would spend hours putting smaller objects into an empty flower vase. His preoccupation with shadows and mirrors and light was all-consuming. He could spend a whole morning walking back and forth past the chairs arranged around the kitchen table, head down, studying the shadows cast by the spindles onto the floor and the way they changed as he moved.

Many of these new behaviors were truly mystifying. Even as a baby, Jake had shown a curious penchant for upturning any cereal box in reach. Now no cereal box was safe: No matter how cunningly I hid them, he’d find, open, and upend them, emptying the contents on the floor. Every time I looked around, one of the daycare kids would be gleefully running through a big pile of cereal that Jake had dumped out. No amount of sweeping could contain the mess. Michael and I grew used to finding rogue Cheerios in the most unlikely places—our winter boots, the glove compartment, the bathtub.

A great deal of the time, though, Jake simply disappeared into his own quiet world. When he carried his soft baby blanket around—a yellow Afghan with an open weave—it wasn’t for security, as it would have been for most children. Instead, he’d fixate for long stretches of time on it, staring, I now think, at the geometric shapes created by the weave. His obsession with plaid and any other pattern involving straight lines was so extreme as to be frightening. I’d had a lot of experience with toddlers, usually so active and squirmy it was hard to keep them still long enough to get a pair of shoes on them. But Jake could spend hours staring silently at a shadow pattern on the wall or floor, never moving a muscle.

Like many autistic kids, Jake liked to be in small, contained spaces. The bottom of his closet was a favorite place to line up his Matchbox cars. The tighter the quarters, the better. Often he’d cram himself into the bottom shelf of the armoire we had in our living room, or into one of the small plastic storage tubs we used to hold toys.

One panicked afternoon, I spent forty-five minutes searching desperately for him. I was about to call the police when I found him scrunched cozily atop some freshly folded towels in a small laundry
basket. Deep down, I had been reassuring myself that there was nothing to fear, not in our carefully childproofed house, where Jake usually had at least two sets of eyes trained on him at all times. But in those horrifying minutes, the boy who seemed to be disappearing a little more each day was suddenly—if only momentarily—
gone
. It was almost too much for me to bear.

Later that year, after another formal assessment administered by another therapist, Jake’s diagnosis was revised. She explained to us that Jake had likely been diagnosed with Asperger’s (a mild form of autism characterized by relatively high functioning) instead of full-blown autism because his IQ was so high—a shocking, off-the-charts 189 on the Wechsler Intelligence Scale for Children. Michael and I had seen that number when we’d pored over the reports together after the first battery of tests, but we had completely ignored it, in part because we were distracted by everything else in the report, but also because neither of us thought the IQ scale even went that high. We simply thought it was a typo.

It hadn’t been a mistake. But what did it matter? An astronomical IQ wasn’t preventing Jake from sinking ever more deeply into his own isolated world. By the time of the second evaluation, right before his third birthday, the diagnosis was full-blown, moderate to severe autism. Despite his remarkably high IQ, his functional scores put him in the so-called “retarded” range.

When my brother, Ben, heard the revised diagnosis, he said, “Get ready, Kris. This is going to be the fight of your life.” Even though I’d always been the easygoing peacemaker in our family, he knew—more, maybe, even than I did—that I would fight for Jake. But none of us yet understood the magnitude of what was to come.

Once you’ve gotten a diagnosis of autism, a horrible stranglehold takes hold of everyone in the family. You eat, breathe, and sleep autism. You fight autism every moment you’re awake, and you fall asleep knowing that you could have—that you
should
have—done more. Because there’s quite a lot of evidence that improvement depends on how much intervention a child gets before the age of five, life with an
autistic child is a constant race against the clock to do more, more,
more
.

The year before he turned three, Jake had state-funded speech therapy for an hour every day, five days a week. He also had an occupational therapist, a physical therapist, and a developmental therapist coming to the house once a week, each for an hour or more. Independent of his work with First Steps, we started doing another therapy protocol called applied behavior analysis (ABA), which required forty hours or more a week—an ordinary person’s workweek!—on top of all the other therapy. On the recommendation of Marilyn Neff, a wonderful therapist who worked with Jake, we later settled on a different type of therapy called Floortime, which is more child directed and more closely modeled on natural styles of play. Floortime required less drilling, but it was still inordinately time-consuming.