The Spark: A Mother's Story of Nurturing Genius (15 page)

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 meeting. 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.

It’s not clear that what we did would work with all autistic children, but I had some insight into Jake and how he’d reacted in the past to the unexpected. A few years before, he’d come with me to the
Department of Motor Vehicles so that I could get my license renewed. The storefront was being repaired, so we went around to the back, but Jake just wouldn’t—or couldn’t—go in through the “out” door. The DMV was a place with clearly delineated rules. There were arrows painted on the floor showing you where to stand if you needed your picture taken for a learner’s permit. There were stanchions marking which line to wait in if you needed a nondriver photo ID. This was a place Jake could relate to, and yet there I was, trying to make him walk in through a door that was clearly marked “Exit,” and he wasn’t having it.

I thought I was going to have to come back after they’d fixed the front door, but I needed my license. I took a deep breath, picked him up, and took the plunge: In through the “out” door we went. He recovered, eventually, but the incident gave me some insight into his mind. Going through the wrong door was so distressing for him, it almost seemed to be causing him pain.

The real payoff came later that day, when I watched him playing with Wesley on our porch. Jake had a two-level car wash toy that you could drive Matchbox cars into. Both boys loved to play with it, but it was the one toy they couldn’t share. As soon as they began playing with it together, there was trouble. After the incident at the DMV, I realized why.

Jake would drive a car through the door marked “In,” wash the car, and then push the clean car through the ramp marked “Out” before parking it neatly outside. Wesley was somewhat less interested in operating a well-run car wash. He’d swoop the cars through the air and land them on the roof, drive them in backward at the Matchbox equivalent of seventy miles an hour, or run them off the ramp, staging a ten-car collision at the bottom.

The fact that Wesley didn’t take the rules seriously was driving Jake nuts. So I sat him down and explained it to him: “Jake, you’re a very serious boy, and you always do the car wash right, by the rules. But Wesley is a silly boy. When he plays with the car wash, he likes to play it silly, and when it’s his turn, that’s okay. When it’s your turn, you can play it serious. There’s more than one way to play with this car wash.”

After that, he got it. The idea that people play differently and that it’s okay if someone wants to act silly during his or her turn was surprisingly helpful when trying to explain an event such as Pajama Day. Yes, it was silly, but he needed to learn to tolerate it, as he needed to tolerate the way Wesley played with the car wash.

I always made sure that Jake got his turn. This was hugely important. If I knew that Jake was going to face a challenge that day at school, I’d go out of my way to reassure him at breakfast that he’d be able to do whatever he wanted to later. If he had to sit through a loud movie at lunchtime, for instance, I’d tell him that when he got home, we would count all the coins in his room. If he went to a class with a substitute teacher, when he got home he could do the biggest, baddest five-thousand-piece jigsaw puzzle in the house, or we’d go for a walk and look at license plates for as long as he wanted to.

These promises weren’t “Do this, and I’ll give you candy” bribes. That wouldn’t have worked. The message was, “Get through this—and it might not be easy—and later, I promise, you can be your real, authentic self.”

Jake had as much time to do the things that were important to him as he had to do the things that were important to other people, to me, or to the school. I wasn’t telling him that he couldn’t do his puzzles. He could, and for as long as he wanted, but only after he’d worn his pajamas to school. He did have to get through the day, but he didn’t have to change who he was to do it.

T
hey say that God never gives you more than you can handle, and we never marveled at how easy and sweet baby Ethan was during his first year without thinking about that.

My own health was not great. I never took more than three days off after any of the boys were born because there were so many special-needs children in the daycare. The fact that I didn’t rest meant that my healing from the abdominal surgery I’d had at the end of my pregnancy was slow and very painful. In addition, the autumn after Ethan was born and Jake started kindergarten, I started to experience terrible, blinding flashes of pain along the side of my face. These episodes were totally incapacitating. It felt like thousands of hot needles were being inserted into the side of my eye socket and all the way down my face. Most disturbing was that there didn’t seem to be a cause. Even a cool gust of wind could trigger an attack.

I was also incredibly exhausted all the time. That, at least, made sense. Everybody is tired during the first six months with a new baby. But no matter how early I went to bed (most nights, minutes after the boys) and no matter how many vitamins I took, I couldn’t seem to catch up on my rest.

I woke up on Christmas morning so tired that I could barely drag myself out of bed. Raising our tiny digital camera to take pictures of the boys opening their presents required an effort that felt almost superhuman.