We think of these children as missing; we think they need to be cured. But I believe that curing autism would be the same as “curing” science and art. I always told the parents at Little Light that if they could get into their children’s worlds, instead of expecting their kids to come out to them, they’d find some beautiful things. It’s up to us to build a bridge to our children, so that they can show us what they see and we can begin to draw them back into our world. In Jake’s case, astronomy and the stars gave me the connection with him I had so desperately craved. Before the observatory, the planets had always seemed like boring balls to me. But when Jake started giving me glimpses of this world through his eyes, I could see how spectacular it is. Soon after he turned four, he called me over one day to show me some pictures of a nebula on the computer. He had become interested in examining light and colors chemically, and the pictures he showed me knocked my socks off. The nebulae were like fireworks, or spectacular stained glass windows.
Seeing my tiny son point out the chemical signatures of the gases was a revelation for me. I realized that this was art to him, an experience as profoundly moving and emotionally intense as an architecture buff seeing the cathedral at Chartres for the first time, or a lover of Impressionist art left alone in a room lined with Monet’s water lilies.
By their second year at Little Light, all the kids were starting to thrive. “How did you do it?” people would ask me, sure that there was a magic bullet. The gains were tremendous, given how little it sometimes seemed we’d been doing. Sure, we’d done some repetitive therapies with the kids, but not nearly as much as was recommended. Nobody would have believed me if I’d told them what we’d really spent our time on! “Well, with one of these kids, I spent six hours at the museum looking at a single painting. I bought another one a used drafting table on Craigslist and dropped it off at his mom’s house. I taught one of them to read by baking hundreds of cookies with her and then decorating them with the letters of the alphabet in icing. And then there was the llama …”
The results we were getting spoke for themselves, and as more and more people heard about what we were doing at Little Light, more and more began to come. They came from all across Indiana, even from Illinois. They brought grandparents and therapists to see their kids do what they’d once thought was impossible.
The fact that people would make this pilgrimage, some driving three hours for an hour-long class on a weeknight, seemed a little crazy to me. I don’t know what those parents were expecting at the end of that long drive, but I’m pretty sure it wasn’t a daycare in a suburban garage at the end of a cul-de-sac. They had all been to gleaming, high-tech medical facilities; they’d all paid for cutting-edge therapies; they’d all seen the brightest doctors. Yet here they were, sitting on the floor of my little garage.
As my pregnancy progressed, I was really uncomfortable. As with all of my pregnancies, I had grown very big, and getting up and down off the floor with the kids was increasingly hard. Then one afternoon in July, while I was tidying up some blocks from the daycare, I fell to my knees in excruciating, intolerable pain. Something was seriously wrong.
I was rushed to the emergency room and immediately admitted. I thought the baby was dying. I thought I was dying. I was terrified of hurting the baby, so I was on the minimum dose of painkillers. After days of tests and unrelenting pain, my doctor told Michael and me that they’d hit a dead end. To find out what was wrong with me, they’d have to operate. At eight and a half months pregnant, I went in for major exploratory surgery.
I had been in full-on organ failure. The surgeons removed my gallbladder, which had completely failed and turned out to be horrendously infected.
Two and a half weeks later, our third son, Ethan Michael, was born. I do not recommend delivering a baby less than three weeks after abdominal surgery. But on the other side was our beautiful baby boy.
After we’d found out that we were expecting another boy, Michael and I had talked about what it would be like. “This kid is going to have a hard time, Kris,” Michael mused. “No matter what he does, we’ll have seen it already—twice—with his brothers. He needs to have something cool of his own.” As a joke, he started calling my bump “Joey Danger,” as in “My middle name is Danger.”
The closer we got to the birth, however, the less of a joke it became. I was still rolling my eyes, but Mike finally talked me into naming this new baby “Joseph Danger Barnett.” After all, I thought, it was only a middle name. If he hated it when he got old enough to care, he could drop it.
But when the doctors put Ethan into my arms, both of us knew instantly that Joey Danger wasn’t the right name for him. It would absolutely have been the right name for Wes, but we could tell at a glance that there wasn’t anything dangerous about this new little boy. So within the first few days, he acquired a much more appropriate nickname, one that stuck for the first couple of years: “Peaceful.”
Every parent thinks that his or her newborn is perfect, but Ethan actually was. He didn’t cry. He didn’t fuss. He ate well. He slept through the night. He smiled if you made a funny face, and he smiled if you didn’t. He was so quiet and happy that I honestly thought something was wrong with him until our pediatrician convinced me that I was just torturing myself. Unlike both of his brothers, Ethan was 100 percent healthy, right from the get-go.
In truth, we were constantly on the lookout for a problem; we knew the statistics. More than once, I caught Wesley’s therapists surreptitiously checking Ethan’s muscle tone or his ability to maintain eye contact, in the guise of cuddling or playing peekaboo with him. But they never found anything wrong. Ethan was a perfectly happy, perfectly healthy, sweet, calm baby boy.
And he cuddled! After the first year, Jake had been too autistic for cuddling, and Wesley had been in too much pain and then too active. But “Peaceful Ethan” would snuggle in for the long haul. The denim sling I carried him in was always covered with finger paint and cookie dough from our activities in the daycare, but I didn’t mind. Wherever I went, Ethan went, too.
Kindergarten Pro
Michael likes to say that I snuck Jake into kindergarten. In a sense, he’s right.
By the time the back-to-school sales started in August 2003, the kids in my Little Light groups looked like kindergarten professionals. Even the lowest-functioning children were vastly outstripping whatever forecasts they’d been given when we started. I felt certain we were ready. The bigger question was, were the schools ready for us?
Every year before school starts, the new kindergartners attend a Welcome to School event, where they meet their teachers and see their classrooms for the first time. That was a big night for us. It was my chance to draw parallels for Jake between all the Little Light sensory centers we’d been working with and the classroom he’d be in for the next year. “That’s where you’ll be sitting during circle time,” I whispered to Jake, “and that box is your cubby.”
He nodded to indicate that he knew. But I was glad to meet his teacher, Mrs. Hoard. I liked her immediately for her gentle intelligence and warm personality, and I felt grateful for her many years of experience. I could tell that she’d seen a lot of children with different issues and learning styles over the years.
I told Mrs. Hoard about Jake’s diagnosis and reassured her that I was confident he’d get along fine. We’d been “doing kindergarten” every single night at Little Light for two years. In response, Mrs. Hoard put her arm around my shoulders and said, “Let’s give him a little time and see how it goes.” I was grateful to know that she wasn’t going to go looking for an excuse to drop the hammer on him. But I also knew that she’d have twenty-five other kids in her class, each deserving of equal attention, and nobody’s patience is limitless. To stay in mainstream school, Jake would need to succeed.
To Mrs. Hoard, Jake was a regular kindergartner. But the school administration wasn’t so sure. While I was walking in to Welcome to School night, the principal intercepted me and said, “Mrs. Barnett, can I se
e you in the hallway, please?” She wanted to talk to me about Jake’s Individualized Education Program (IEP). After a panel reviews a special-needs child’s most recent evaluations, they draw up a document setting down the goals—academic, behavioral, and social—the school has for him or her over the coming year, including details such as how much time the child will spend interacting with nondisabled children and the kinds of supplementary services and aids he or she can expect in the classroom. Jake was still classified as a special-needs student.
Three-year-old Jake had been stimming, nonverbal, and unresponsive. He hadn’t seemed like someone who was ever going to speak, read, or make friends. The people evaluating him then didn’t think he could learn at all, so the school was expecting him to be the same at age five as he’d been at age three. He wasn’t, of course. We’d made tremendous strides since his time in developmental preschool. But the school administrators didn’t know that—yet. I didn’t want to be confrontational. All I wanted was the chance to show them what Jake was capable of. For that, as Mrs. Hoard said, we needed a little time.
So I apologized to the principal and stalled. I told her that I had a brand-new baby and was really busy over the next few weeks. I wouldn’t have a spare minute to meet with her until the third week in September. All I wanted was for them to have some time to see that Jake wasn’t the same little boy he’d been. I skimmed through my ultra-packed calendar (daycare, daycare, Wesley’s first dentist appointment, more daycare) and set the meeting for three weeks out.
In all fairness, it was very hard for me to find someone to take the daycare for the day, and the school didn’t mind the delay. The administrators had so many other kids to evaluate that Jake just slid down to the bottom of the list. After all, if it went badly in the mainstream classroom, they knew they could always make updating Jake’s IEP a priority.
Jake’s first day of kindergarten was a big day for the whole family. That night, Mike made dinner for us, and he thanked me for giving us back our son. Then it was my turn to be grateful. It’s one thing to support someone when you agree with him or her, but another thing entirely when you don’t. I knew how hard it had been for Mike to take that leap of faith with me. He’d believed with every fiber of his being that I’d been begging for disaster when I’d pulled Jake out of special ed. The counsel of those experts had been more powerful for him than it had been for me, and yet Mike had not only allowed me to take the risk, but he had supported me every step of the way.
Jake didn’t give anyone an opportunity to complain. When I called later in September to find out if we needed to meet about his IEP, the principal agreed that we could hold off for a bit. I could hear the bafflement in her voice. “Is this the same kid?” she asked, only half joking.
Jake was far from the only Little Light success story. That first month, the phone rang off the hook with triumphant Little Light parents all across the state and beyond, calling to share their happiness and relief. Kids who doctors had said would never talk not only talked but also got into mainstream kindergarten. Kids who had come with such serious behavioral issues that their parents were told they’d never be outside a special ed classroom got time in mainstream classrooms. Parents who’d been told that their children would have to be in all-day therapy programs saw those children go to school. Even the lowest-functioning kids needed much less assistance than anyone had dared hope. There were a lot of baffled school administrators across Indiana that year.
I was as proud of the community we’d built as I was of the children. We hadn’t waited for the system to come and save our kids. Through resilience and hard work, we’d done it ourselves, and we’d done it together.
Whenever I meet an autistic kid who has made progress, I know that someone fought hard for that kid. No matter what the accomplishment—whether he’s toilet trained or in secondary school, whether he’s recently started talking again or has gotten his first job, I know that someone behind that child believed in him and that they fought for him.
Every parent has to be a fighter on behalf of his or her kid, not only the parents of kids with autism or developmental disorders. Every parent comes up against difficult choices over the course of the child’s life, although those choices might not be as stark as mine were. Whether dealing with physical illness or disability, bullies or mean girls, the politics of a Little League team or competitive college admissions, every parent has to face down challenges on behalf of his or her child. Each of us experiences pain and fear, and each of us needs to muster courage. We do fight for our kids; we do it out of love. That willingness is, I believe, what makes us parents.
When confronted by all those experts (and modern parents are dealing with a lot of experts), it’s easy to say, “What do I know? I’m just the person who makes the macaroni and cheese.” But I think my example gave a lot of the parents who came to Little Light, especially the moms, permission to follow what they knew to be true in their hearts.
I came to see my maternal intuition as a compass pointing true north. Ignoring it could never yield a good result. In those cases where the needle was pointing away from where the experts wanted me to go, I had to trust what I call “mother gut.” I know that if Jake had stayed in special ed, we would have lost him, and this light that now burns so brightly would have been extinguished forever.
Once he was in kindergarten, it was plain to see that Jake’s academic skills were quite advanced compared to the rest of the kids’. Most of his classmates weren’t reading, for instance, and certainly not elementary school science textbooks. But we had a deal with Jake that he wouldn’t let the cat out of the bag to anyone at school. We’d worked so hard to get him into regular school that we just wanted him to be another kid in the class. That said, his basic reading skills were probably about third- or fourth-grade level by the time he entered kindergarten, and I suspect that if we’d understood exactly what was going on inside his head, we would have seen that he was actually doing high-school-level or college-level math and physics. Our parenting work was far from over, though, because what Michael and I still had to do was teach Jake how to relate to the world.
Mrs. Hoard was as good as her word: She did give Jake a chance. But Jake was also a comparatively easy kid, and I think that probably helped quite a lot. Was he distracted? Sure, sometimes. But he was never disruptive, which definitely helped him stay under the radar.
Jake still needed the occasional nudge, though. At Little Light, we’d never done a boys’ line separate from the girls’ line, which was how they did it at school. So I’m sure Mrs. Hoard had to gently remind him which line to stand in, maybe even more than once. But Jake was never a behavioral problem, even at the height of his autism. He was never going to get into a fight with another kid over a tricycle in the schoolyard, for instance, which is the kind of squabble that happens all the time in kindergarten. He just didn’t care. So while little Devin and his buddy Aidan were duking it out over the Big Wheel, Jake would fade to the back of the line. He’d play happily (if silently) next to Corey at the clay table, and if Corey reached out his finger and put a big dimple in Jake’s pot, Jake would simply leave Corey with the pot and walk away. Jake didn’t throw tantrums or start fights. As long as no one tried to take away his cherished books about rocks and weather systems (and that was a relatively safe bet), he was happy. Mrs. Hoard continued on with the occasional quiet reminder, and with a little time and extra help, Jake mastered the routines of his new classroom.
In truth, Jake had difficulty only when something out of the ordinary occurred. The prospect of being called in to discuss his IEP loomed over our heads, so I worked hard to prepare him for any deviation from the regular schedule.
Every morning, I took him out for breakfast, and while he ate his cinnamon roll, I alerted him as best as I could to any anomalies that might be coming up: a field trip or a special movie during lunch, a whole-school assembly in the gym or an early dismissal before a holiday. I thought of those breakfasts together as our pregame meeti
ng. He was the star quarterback, and I was his coach.
“Please don’t tell the other children that Santa Claus isn’t real,” I’d say a couple of days before a holiday party. “Even if you can see it’s actually Mr. Anderson, please don’t call him that. Address him as Santa Claus and play along. You might have to sit on his lap and ask for a present while someone takes a picture. Okay?” With preparation, he could tolerate it.
Ironically, nothing alienated Jake more than the goofy activities the school created to appeal to kids his age. He didn’t get that wacky, upside-down humor; it confused him. He’d never understood Halloween, for instance, which was one of my favorite holidays, because dressing up didn’t make sense to him. Why would you pretend to be something other than what you were? Why would you ask a neighbor for candy when there was a big plastic pumpkin full of it on your own porch?
I’ll never forget the look on his face when I broke the news about another time-honored kindergarten tradition. “Guess what you’re going to be wearing to school tomorrow, Jakey? Your pajamas!” He looked at me, genuinely worried that I’d gone stark raving mad.
“I don’t wear pajamas during the daytime, Mommy. I wear them at night.”
I persisted, and he did, too. “I don’t wear my pajamas to school,” he kept explaining to me, patient to the end. “I wear my pajamas to bed.”
On one level, it was funny, but I also felt there was an important lesson he needed to learn. I know a lot of parents would have gone to the office to get a note so their autistic kid could be excused from participation. But as my grandfather used to say, you can’t get a pass every time life stretches you. Instead, we had to give Jake the tools he needed to overcome his discomfort, so that he could function in a world that sometimes has a Pajama Day.
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