The Spark: A Mother's Story of Nurturing Genius (6 page)

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, and 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.

M
y 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.

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.

W
esley’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.