The Spark

by Kristine Barnett

John Wesley was in fact born the next day. Michael and I decided to name him John after my grandfather.

  The feeling of those early days with baby Wes are marked indelibly in my mind. Although I was still actively mourning my grandfather, even that terrible sadness was blunted by the sheer delight of having this wonderful brand-new child at home. Michael and I couldn’t get enough of Wesley’s delicious milky smell. We marveled over his impossibly tiny feet and wondered at all the funny, adult-seeming expressions that flitted over his face. Grandpa John, with his strong faith, would have appreciated the symmetry: As one life had ended, another had begun.

  As I’d done after Jake was born, I reopened Acorn Hill a few days after Wes arrived. Once again, the daycare kids had a new baby to play with. From the very beginning, it was clear that Wesley was a boy’s boy. Planes, trains, automobiles: If it had wheels, he loved it. Michael would hold him in the back of one of Jake’s oversized toy trucks while I’d gently roll it around the room. This induced gales of contagious baby laughter, and the faster we went, the louder Wes laughed. He would kick and shriek with excitement every time our beagle puppy (so loving and utterly useless as a guard dog that Michael ironically insisted on calling him Cujo) entered the room. We couldn’t stop ourselves from laughing, too.

  Jake seemed unperturbed by Wesley’s arrival, which was, of course, disturbing in itself. It was the first time (though not the last) that I’d wistfully hope for a little sibling rivalry between the two of them. But after so many months of tension and anxiety, Mike and I were grateful simply to relish the tiny, ordinary moments with the new baby.

  Then we noticed that Wesley seemed to gag and cough more than was usual when we were feeding him. I became hypervigilant, carrying him with me everywhere, snuggled inside a baby sling. One day while I was giving him a bottle when he was about two and a half months old, he not only stopped moving but also began turning blue. He looked like he was dead.

  Leaving my terrified assistant, Ruby, in charge of the daycare, I rushed over icy roads to the emergency room at St. Vincent Carmel Hospital. Michael met me there. We’d been through a lot, and we didn’t scare easily, but this was terrifying. Our pediatrician happened to be away, so we waited and watched as a team of covering doctors did test after test. Nobody could tell us what was wrong. Eventually, someone told us that our doctor was flying home from his vacation to speak to us in person.

  Our doctor, who had already been through so much with us, looked heartbroken to share more bad news. He explained that Wesley had been diagnosed with a disease called reflex sympathetic dystrophy (RSD), a neurologic disorder that can affect every system in the body. Although no one knows for sure what causes the condition, the doctor explained that it is widely suspected to be the result of a malfunction in the nervous system.

  Locking eyes with me, he went on to say that RSD is almost never seen in infants. When it is, it can be catastrophic, because it can interfere with the autonomic nervous system—all those essential actions our bodies do that we don’t think about or control, such as maintaining a normal body temperature, a steady heart rate, and regular breathing.

  Our doctor knew that Michael and I were fighters, but he gently explained that he’d seen only two other cases of RSD in infants over the course of his long career, and both those babies had died before the age of one. How we made it out of his office and back home, I don’t know. We allowed ourselves briefly to fall to pieces and then soldiered on, determined to help our baby fight to beat the odds.

  Wesley began to have seizures, sometimes eight or nine a day. His beautiful new body seemed rigid all the time, and to us it appeared that he was in more or less constant pain. He now had his own battery of therapists who came to administer neurodevelopmental therapy, stretching exercises designed to improve his range of motion and train his muscles.

  I knew the treatment was necessary, but there is absolutely nothing worse for a mother than hearing her baby cry, which meant that this stretching therapy was torture for both of us. Poor little Wes would scream and scream and scream, and I would pace the kitchen, my clammy fists clenched and my heart rate skyrocketing. It took every bit of faith I had to believe that we were helping our son, not making things worse.

  Michael surprised me one day by coming home from work right in the middle of one of Wesley’s sessions, just to check in. During the session I was, as usual, beside myself in the kitchen—white, shaking, and in tears. I’d told him how awful the sessions were, of course, but nothing could have prepared him for experiencing it firsthand.

  He took one look at me and said, “Stretching therapy? More like screaming therapy.” Then he picked up the phone to call his boss. That afternoon, Mike rearranged his work schedule so that he could be home during Wesley’s therapy sessions. It meant he would have to work Saturdays, but Wes would get the care he needed—and I could be in the daycare, safely out of earshot.

  It was a harrowing time. We were in the emergency room a couple of times a week for months. Wes couldn’t swallow liquids, so he survived on formula thickened with rice cereal. Sleep was impossible for me. I was convinced that without constant vigilance, Wesley would stop breathing, so I spent every night by his crib. I couldn’t entrust his care to anyone else; I knew I would never be able to forgive them or myself if anything happened to him. All this was happening amid everything that was going on with Jake. And while I was doing daycare, Wesley was once again with me in a baby sling, every second of the day.

  Rainbows

  Wesley’s urgent health issues and therapy didn’t change Jake’s needs, of course, so it was important for us also to maintain his schedule and ordinary routines. We were still spending hours upon hours at that little table in the kitchen, but we weren’t seeing much improvement—and certainly nothing commensurate with the tremendous amount of work being done. Life was doubly difficult at this time because of the daycare, where I was surrounded by typical kids. I remember watching a child much younger than Jake zoom by his therapy area, effortlessly reaching over to drop a ball in a cup—a skill that Jake’s therapists had spent six months working on, to no avail. I tried to accept that a little girl I’d known for only a week would give me a huge hug goodbye at the end of the day when my own child no longer acknowledged that I was in the room. But it was hard.

  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 a
bout 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.

  Breakthrough

  The 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 e
xercise, 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.