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.
The sight and sound of those kids breaking free, sliding and shrieking as they laughed under the cold water, brought me up short. For the past year and a half, every moment that Jake had been awake had been about autism: drills and therapy and pattern recognition to work on his lowest skills. In all of this, we had forgotten something vitally essential: childhood.
Typical childhood experiences—like watching your cold fingers wrinkle up under a sprinkler on the first superhot day of the year—are important for everyone, not just typical kids. Every family needs to have special traditions that celebrate who they are and what matters to them. I knew from my own days growing up that such traditions don’t have to be a big deal to be meaningful. Something as simple as packing a cooler with peanut butter sandwiches and heading to the beach to fly a kite can bring a family together to make a memory. But we weren’t doing any of those things with Jake, and suddenly I realized that if I didn’t fight for my child to have a childhood, he wasn’t going to have one.
I picked up the phone and called Michael at work. “Sweetheart, I need you to take care of Wesley alone tonight. I’ve got a date.” Michael was startled. Wesley was so incredibly ill that I hadn’t spent more than ten minutes away from him since he’d been born. But that very evening after dinner, I did. As Michael got Wesley into his pajamas, I put Jake in the car, opened the sunroof to the sweet-smelling summer air, and drove out into the Indiana countryside.
In only a few minutes, we’d left our familiar neighborhood behind. The narrow road that stretched out in front of us was only a single lane in each direction, edged by a wall of tall corn on one side and miles of dark green soybeans on the other. After the pavement ended and the gravel began, ours was the only car for miles, and the only lights we could see came from farmhouses in the remote distance. People always say they go to the country for peace, but the truth is that a country night is loud, and the chirping of crickets and the hushed sounds of the wind rustling through the cornstalks filled the car.
I was driving us up to the land surrounding my grandfather’s church—miles and miles of open pasture around the lake where Grandpa John had loved to fish. In the summertime, he’d often bring the grandkids along, packing all thirteen of us and a case of grape soda into his van, along with the coffee cans full of night crawlers he’d sent Stephanie and me out into the rain in our ponchos to catch. I spent many long, blissful days with my sister on that lake. All day, we’d chase butterflies and bullfrogs, and when the sun went down, we’d catch fireflies in jam jars to light up our forts. It was a place I so strongly associated with my childhood that it seemed like the right place to begin Jake’s.
I turned on the fog lights and cranked up a jazz station as loud as it could go. Leaving my shoes in the car, I got Jake out of his car seat and gathered him in my arms. As I danced with him in the warm night air to Louis Armstrong’s Takes Two to Tango, it felt as if it had been a long time since we’d just been together, without anything to work on.
When my arms got tired from swinging him around, we lay down on the hood of the car, and I pulled Popsicles out of the big cooler I’d brought. Sticky drips from the ice pops stained our necks as we lay back and looked at the enormous sky. I pointed out the constellations I knew, and when I ran out of the ones I could name, we lay there in silence, looking up. There’s very little ambient light pollution from Indianapolis when you’re so far out in the country, and that night the stars were so close and so bright, it felt as if we could reach out our hands and grab one.
Jake was utterly transfixed by the stars. I hadn’t seen him so relaxed and happy since he’d started therapy. I felt that way, too. As exhausted and scared as I was, for the first time I felt confident that I was doing the right thing.
All that summer, we chased the long, hard, exhausting hours of therapy during the day with a few hours of frivolous kid fun in the evenings. It wasn’t easy. After therapy, there weren’t very many hours left in the day, and I didn’t want to broadcast what we were doing. The received wisdom was unanimous: When children are broken, work supersedes play. The other moms I knew with autistic children would have been appalled if they’d known we were sneaking off, and most of the experts as well. I could hear their shocked reactions in my head: “But what about your hours? Did you get in your hours?”
I made sure we got in the requisite hours of therapy, of course, but I knew in my gut that Jake also needed the chance to play and to feel dirt between his toes. I was determined to give him both. There were times when it would have been easy not to prioritize Jake’s childhood—to stay an extra hour doing occupational therapy at the gym or spend a little more time at the therapy table. But if it came down to choosing between extra therapy and blowing dandelion fluff at each other in the backyard, we went with the dandelions every time. I truly believe that decision was a contributing factor in enabling Jake to rejoin the world, and it is one that has guided and animated all the decisions, large and small, that Michael and I have made on his behalf in the years since.
Many kids spend their summers playing at the beach. Jake couldn’t do that without compromising his therapy because the beach was too far away. But we could still build sand castles together in the backyard sandbox, even if we had to do it by moonlight. We had a little brazier in our backyard. It wasn’t a real fire pit, but it was good enough to allow Jake the pleasure of licking melted chocolate and gooey toasted marshmallows off his fingers while the mosquitoes made their own meal of our ankles.
We made frequent trips out to my grandfather’s land. Grandpa John’s presence was so strong there, it almost felt as though we were visiting him. When I felt frightened and alone, as I often did in those days, I allowed myself to be comforted by his reassurance that Jake would be okay.
Jake loved those trips. It occurs to me now that he may have tolerated dancing under the stars because he was also getting to do what he really loved: looking up at the night sky. But he couldn’t tell me that, and I was only trying to cram as much old-fashioned fun as possible into the spare time we had.
That pasture out in the country was where I found my son again. He still wasn’t speaking or making eye contact, but by the end of the summer, I could sometimes hear him humming along with the jazz I played, and he’d laugh when I’d swing him around under the bright stars. While we were lying on the hood of the car and looking at the stars, he’d turn around to hunt for the Popsicles, handing me the box to open. It might not seem like much, but it was more of a connection than we’d had in a year. Then, right before he was to start special ed preschool, we had another breakthrough.
Many parents complain that they have
a hard time putting their kids to bed. Not us. Unless Jake and I were out having a nighttime adventure, he would put himself to bed promptly at eight o’clock, every night.
To be honest, this was sometimes a little annoying. In Indiana, summer days are long. Kids run around until nine or ten on weekend nights, sneaking an extra ice cream out of the cooler while the adults talk with their neighbors around the barbecue. Not Jake. If we were at someone’s house, he’d put himself to “bed” on their floor—or, on one memorable Halloween, in the unoccupied bed of our friend Dale’s daughter Allison.
We didn’t realize exactly how precise his timekeeping was until I tried putting him to bed early one night. We had an out-of-state wedding to drive to the next morning, which meant the whole family would have to be up and out of the house much earlier than usual. Thinking that we’d all benefit from a good night’s sleep, I put Jake into his Volkswagen Bug bed and was surprised when I couldn’t entice him to lie down. Perplexed, I called Michael into the room. We tried to coax Jake to lie down, but as usual he just ignored us, instead watching the shadow on the wall. There was no clock in Jake’s room, but at eight o’clock sharp he lay down and pulled the covers over himself.
“Oh, my,” I said to Michael. “The shadow on his wall—it’s a clock.”
We tested my theory on subsequent nights by throwing towels over the cable box and the kitchen clock and turning our bedroom alarm clock toward the wall. Every night, Jake put himself to bed at exactly eight o’clock—not at 7:57 or 8:03, but at 8:00 on the dot.
Our bedtime routine had become very precise. Like many autistic children, Jake liked the events in his life to be predictable. So I’d always do exactly the same thing when I tucked him in. I’d lean over, kiss his forehead, and say, “Good night, my baby angel. You’re my baby angel, and I love you.”
When he was small, he’d hug me back, but over time he’d become completely unresponsive. People ask what the hardest thing is about having an autistic child, and for me the answer is easy. What mom doesn’t want to hear her baby tell her that he loves her or to feel his arms around her? And then one night toward the end of the summer, about six months after we’d started making those trips out into the country, my wish came true. As I was putting Jake to bed, I leaned over to kiss him, and to wish my baby angel good night. Completely without warning he reached up and hugged me back.
I will never forget that moment as long as I live. It was the first sign of affection, or even interest, he had shown toward me in more than a year. I was in a state of complete shock, hiccuping back the sobs, scared to move in case he’d stop. I could have stood there forever, tears streaming silently down my face, his little arms tight around my neck.
And then, his sweet breath hot in my ear, my son spoke for the first time in eighteen months. And what he said was, “Night-night, baby bagel.”
Through my tears, I started to laugh, and once I’d started, I couldn’t stop.
A Step Backward
All the gains we’d made over the summer were incredibly encouraging. It had even been a little bit fun. But the summer came to an end, and when it did, special ed began. Off Jake went to developmental preschool.
Right from the beginning, these life skills classes felt wrong to me. In regular preschool, the first days include an emphasis on helping the kids separate from their parents for the first time. But there was no such luxury with special ed. Instead, the little yellow school bus showed up outside our door the first day, Jake got on it, and then several hours later the same bus dropped him off at home. What happened in the hours in between remained largely a mystery to me.
To be fair, I suppose the separation anxiety was more my issue than Jake’s. With the exception of that one heart-melting bedtime hug, he still barely acknowledged my presence when I was in the room, let alone when I left it. But as a parent, it was terrifying to put him on that bus. At three and a half, he was so little—still a baby really. And although he had begun to speak an occasional word here and there, an actual conversation with him was still unthinkable. Jake couldn’t tell me about his day at school, about what had happened or how he felt. He couldn’t share any of his fears or anxieties or concerns. On any given day, I couldn’t even tell if he’d liked his lunch. So I had to put my trust in the system.
Unfortunately, maintaining that trust became increasingly difficult. I had nothing to go on except how Jake acted when he was at home, and what I saw filled me with doubt. He wasn’t improving. In fact, it seemed to me that he was losing some of the gains he’d made over the summer. By summer’s end, I had for the first time dared to hope that he was rounding a corner. I prayed that the few words we’d been able to coax out of him meant that more would follow, and I was even becoming more optimistic that he might really talk again. But as school started and the weeks passed, my hopes once more seemed out of reach.
The start of special ed prekindergarten also coincided with a host of new behaviors I found alarming. Most notably, one evening when I asked him to come to the dinner table, Jake lay down on the floor and wouldn’t budge. When I went over to pick him up, I found that he’d let his body go completely limp, so it was almost impossible to carry him. He wasn’t crying or even visibly upset—just floppy. Over time, I noticed him doing this more and more, always when I asked him to do a task he didn’t particularly want to do.
His teacher came to our house for a state-mandated conference once a month, and the next time she came, I mentioned this new behavior. She laughed and said, “Oh, he must be getting that from Austin, another boy in the class. Austin has cerebral palsy, and when he doesn’t want to cooperate, he goes limp.” On one level, I could see that it was funny, but on another I felt real concern. How much specialized attention could each child possibly be getting if all of them were lumped together into one classroom, regardless of their special needs? More specifically, I found the floppy behavior itself unsettling. The goal wasn’t for him to become less responsive.
Michael was sympathetic to my concerns, up to a point, and he’d patiently act as a sounding board whenever my doubts about Jake’s progress in special ed surfaced. He became the calm mouthpiece for all the same sentiments I’d repeat over and over to myself whenever he wasn’t around: “They’re the experts, Kris. We wouldn’t second-guess a cardiologist or an oncologist. Shouldn’t we trust them to know what the best plan is for our son?”
I rode that seesaw for months. My doubts would simmer until they boiled over, and then I’d be steadied by Michael’s sensible impulse to stay the course and trust in the experts. But my worries about the school finally came to a head a few months in, when Jake’s special ed teacher gently but firmly asked me to stop sending Jake to school with his beloved alphabet cards.
That misunderstanding was a clarifying moment for me. Michael and I were sending Jake to school to learn. But his teachers—the people responsible for his education—were telling me they didn’t think he could be taught. As gentle as Jake’s teacher had been with me, the underlying message was clear. She had given up on my son.
Later that day, while I was taking a chicken out of the Crock-Pot for dinner, I tried to talk it through with Michael. “He’s not going to read? Ever? Why not at least try? This is a kid who’s already totally obsessed with the alphabet without any encouragement at all. Why hold him back from what he’s naturally doing?”
Michael was slightly exasperated with me. “Kris! These people have a lot more experience and training than we do. We have to let the experts be the experts.”
“What if carrying around alphabet cards everywhere he goes is Jake’s way of saying he wants to read? Maybe it’s not, but what if it is? Do we want him with people who won’t even try to teach him simply because it’s not part of the life skills program? Why would they say no to somebody who wants to learn?”
I realized that all of my questions—indeed, all of the niggling doubts I’d been unable to squelch in the months since Jake had started preschool and even before that—could be
boiled down to one big, basic issue: Why is it all about what these kids can’t do? Why isn’t anyone looking more closely at what they can do?
Michael’s arguments for staying the course had always worked to calm my doubts—until that night. Suddenly, my doubts evaporated. As any mother would instinctively know to snatch her baby back from the edge of a campfire, I knew I had to snatch my baby out of special ed.
Michael could sense a tidal shift, and he was alarmed. “Kris, honey, I understand you’re frustrated and upset, but you’ve got to be reasonable,” he said. He often trusted me to take the lead, but this time he saw me heading into waters he wasn’t comfortable sailing, not when the stakes were this high. I understood his position completely. After all, I’d been in complete agreement with him twenty-four hours before. But now it was absolutely clear to me that what he considered to be the more prudent and rational course would only spell disaster for our son.
To look at us, you would have thought that Mike was the rebel. He was the one who drove too fast and played elaborate pranks and wore ripped jeans and a leather jacket. But the fault lines in our relationship were not always turning out to be what we expected. Of the two of us, it was Michael who felt more comfortable proceeding by the book, who needed the safety of a narrowly prescribed set of rules. I was the one, it turned out, who was more likely to embrace the uncharted path when the need arose.
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