The Spark

by Kristine Barnett

  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.

  Inside the Diagnosis

  Autism 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 m
ild 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.

  It was almost impossible to squeeze those additional Floortime hours in on top of all the other appointments and therapies and interventions. The calendar on the kitchen wall was so jam-packed that nobody but I could read the microscopic handwriting I used to cram it all in. A friend who worked as the secretary to a busy executive took one look at it and commented that my little boy’s lightest day made her boss’s worst one look like a walk in the park.

  On top of all the hours with the therapists, the whole family (even Ruby, the young woman who worked with me at the daycare) was learning American Sign Language, in the hope that Jake would eventually be able to communicate with us that way. Every wall in our house was papered with sign language materials. My belly growing bigger every day, I was still also operating the daycare, and Michael was working full-time. We were exhausted.

  It seemed there was no respite, ever, for any of us. Right after breakfast, it would start: The doorbell would ring, announcing the first therapist of the day. Then, for hours, Jake would sit at the little table we had set up in the kitchen. The therapists would encourage him to make eye contact or to label what he was doing or what he saw: “in,” or “fish,” or “one.” Often they would use a technique called “hand over hand,” using their own hands to demonstrate how to perform simple tasks such as opening a box.

  You could see how frustrating all of it was for him. I learned that many autistic children get upset during therapy; they throw toys, scream, or have tantrums. Jake didn’t do any of that. He was simply unresponsive, preoccupied as always with the shadows on the wall. Occasionally, he’d get upset, usually when the therapist did something differently than he was used to. One of the only times I remember him losing it was when his developmental therapist, Melanie Laws, asked him to do one of his favorite puzzles upside down.

  Most of the time, he simply looked peeved—and today I think, No wonder! The emphasis all day and every day was on what Jake couldn’t do. He couldn’t hold a pencil with a proper grip. He couldn’t go up the stairs one leg after the other. He couldn’t imitate clapping. He couldn’t mimic the facial expressions or the noises the therapists made. Those compassionate and dedicated therapists would sit there at that little table in our kitchen with Jake, laboring hour after hour. But despite their patience and determination, he’d look right through them as if they weren’t there at all.

  It never ended. After Jake went to sleep, Michael and I would spend hours reading books or combing the Internet for new research, new therapies, or other parents’ groups. The news out there was even bleaker than we’d thought. Michael memorably nicknamed one newsgroup ParentsWithoutHope.com.

  I think of that year as living inside the diagnosis. Obviously, the toll on families with an autistic child is extreme, and the fallout is well documented. It is common knowledge that divorce rates skyrocket after a child is diagnosed. Thankfully, Michael and I weren’t among those casualties. If anything, Jake’s diagnosis seemed to bring us closer together. We didn’t always agree, but we remained each other’s port in the storm. I was completely focused on Jake, doing anything and everything I could for him, and Michael channeled whatever anxiety he had into taking care of me. Sometimes he’d bring home dinner, and after Jake was in bed, we’d spread out a blanket on the living room floor and have a date-night picnic. And without fail, a bouquet of fresh flowers arrived every week.

  There was more heartbreak on the way for us, though. Now in his early eighties, my indefatigable grandfather was gradually losing his battle against the strokes that had battered his body over the previous year. He moved into hospice care. I spent a great deal of time with him there, often getting into the car to go visit him as the last daycare child was leaving. Sometimes I sat with him while he slept.

  When he talked, he sounded the same as he always had. Certainly, his sense of humor was still very much intact, and he delighted in teasing me about my ever-expanding belly. (Along with the rest of me. I am naturally quite petite, but I gained ninety pounds with that pregnancy!)

  It was hard for me to believe that he was dying, that this pillar of strength and good sense—the bulwark of my childhood—could now be so weak and frail. One afternoon I drove up to the church he’d built to drop off some baked goods for my mother, who was cooking the church lunch that week. As I got out of the car, I heard the sound of the tractor used to mow the grounds.

  My grandfather had never hired anyone to landscape the grounds. He took pride in keeping the property beautiful for the people who used it. As meticulous as he was, he never failed to make the chore fun, inscribing figure eights and zigzags in the grass to keep the grandchild on his knee screaming with delight.

  Before my brain could catch up, my heart lifted, and I turned, fully expecting to see him careening toward me on the tractor he’d fixed a thousand times. But someone else was driving the tractor, soberly edging the church lawn, and my heart broke at the sight.

  It was from his example that I’d learned the value of lifelong curiosity, the pleasure to be found in hard work, and the importance of family. I’d seen the sense of purpose he felt in dedicating his life to ideals larger than himself, and the satisfaction he derived from doing so. As sad as I was about his decline, I felt incredibly grateful that I’d had the opportunity to tell him how much he had meant to me.

  Late one afternoon, while I was changing the water in a vase of flowers in his room, he asked, “What is this autism?” I was startled by the question. Not wanting to worry him, I hadn’t told him about Jake’s official diagnosis. Apparently, someone else in the family had, and now I searched for the simplest way to talk about it.

  “Jake can’t talk to us right now, a
nd they don’t think he ever will,” I explained.

  He nodded and was silent for a while. And then he put his gnarled hand on top of mine, looked right into my eyes, and said, “It’s going to be all right, Kristine. Jake is going to be all right.”

  I truly believe that those words were his last gift to me. From anyone else, the comment would have felt like a shallow platitude, the kind of meaningless comment that people make when they don’t know what else to say. But when my grandfather told me that Jake was going to be all right, he said it with complete conviction, and I believed him. For a minute, in that hospital room, I was a little girl again, and he was the pillar of strength, the person who could fix anything in the world at his tall workbench in his garage. I gave myself over to the comfort of the idea that my strong, brilliant grandpa knew something about my son that I couldn’t see.

  An Ending, and a Beginning

  My grandfather’s funeral was beautiful. He had been deeply beloved in the community, and his had been a life worth celebrating.

  I was, however, sick with grief. Although I’d been able to say everything I wanted to say to him, his passing had left a gaping hole in my life. I missed him so much, and the fact that he would never know the baby I was carrying devastated me.

  After the funeral, my sister, Stephanie, was supposed to drive me back to my grandparents’ house for food and remembrance. We pulled into the procession at the graveyard, but as she was about to turn right, I put my hand on her arm and said, “Go left.” She turned to me, confused.

  “We need to get to the hospital,” I said. “The baby is coming.”

  It was a month early, but no matter. I had felt the first telltale pangs as my grandfather’s coffin was being lowered into the ground.