Raising Cubby (29 page)

“Out,” he said, as he waited for me to leave the room before he would get up. I’d learned that was often a trick. If I went away and didn’t follow up, he might just go right back to sleep. I tried everything I could think of to change this ritual, to no avail. Some said, “Make it his responsibility. Let him suffer the consequence of missing school.” The trouble was, he did not care about the consequences of missing school. He was like me in that regard. The older he got, the less use he had for adults telling him what to do and trying to make him study boring dreck when he had his own topic in mind: chemistry.

If I’d left him alone, he would have happily slept till noon, and then woken up and studied chemistry and done experiments until
two in the morning. More and more, I was seeing my own Aspergian traits in him … his obliviousness to other people, his rigidity, and his all-consuming obsessions. The psychologists who had examined him earlier had never suggested he had Asperger’s, but of course Asperger’s wasn’t in the diagnostic lexicon when we started working with him and the school. And each report just built on the one before, which meant that we talked about ADD tendencies or problems with visual processing. All the while, the root cause—autism in the form of Asperger’s—was right there under our noses.

When I look back on those years, I’m shocked I didn’t see it sooner. He was so stuck in his routines, and his behavior was, in retrospect, totally Aspergian. It was his way or no way. Very regimented, and sometimes seemingly nonsensical. Like the fight over the bus on our first school day in the new house.

“I can’t ride the bus. You have to drive me.” He knew we expected him to ride the bus, just like every other kid. And he surely knew what I’d say when he objected.

“When I was a kid, I walked to school. You should walk too. It would be good for you.”

“Dad! It’s three miles! I can’t walk!” I just looked at him. It was six miles from my parents’ house in Shutesbury to the same school he was attending now.

“Of course you can. You’re a kid. Kids are full of energy. Pretend there’s a pack of monsters chasing you.”

“Dad!” He was getting to the age where monster threats were more aggravating than scary. As we argued, he became more and more agitated, and meanwhile, the bus came and went. That left me with no choice but to drive him or leave him home. Abandoning him did not seem like a good way to help him succeed in his first year in the new school, so off we went.

That experience seemed to establish the pattern for much of the school year. We would argue, the bus would pass us by, and I’d take
Cubby to school. Then I turned south and headed for work. At least he was going to school, I thought, even if he didn’t ride the bus. I hoped he was going to class.

I always wondered whether there was some reason he didn’t want to ride the bus. Was he being bullied? When I asked, he said no, he just didn’t like it. I finally concluded there was nothing more to it. Who wouldn’t prefer to be driven? I wished I had the parenting skills to get him onto that bus every day, but judging from the line of cars dropping off kids, I was far from alone in that predicament.

Cubby wasn’t doing extraordinarily well academically, but his ability to make friends was wonderful to behold. I’d been a total social failure, but he was downright popular! He didn’t say much about friends to me, but I couldn’t help noticing that when I picked him up at school he was always with other people. And once we were in the new house, he even started bringing friends home. By the time the school year ended, he was hanging out with friends at our house or in town most every day. First there was one, then two, and ultimately a whole pack. There were even girls. They’d come over and shoot paintball guns at the trees, or watch movies, or just sit in the living room and talk.

Of course, being Cubby, he also led his friends in some novel activities. “Check out what I just built,” he told his assembled audience one summer afternoon. I observed the scene as I stood by my toolbox, across the garage. Cubby was pointing to a large white pipe on a wood frame, with wires leading from the pipe to a homemade box.

“What is it?”

“It’s a cannon,” he said proudly. “I built it from leftover plastic drain pipe, and I made my own black powder. It’s fired by this electrical detonator, which sends a signal down these wires to a model rocket squib that I bury in the powder charge.”

My friend Neil saw that and encouraged him further, sending
my son a magazine with plans for a hair-spray-propellant-powered potato cannon that could shoot spuds a quarter of a mile. Or so the designers claimed. Cubby immediately set to work building his own, which he assured us would be even better.

His friends looked at him with a combination of amusement, skepticism, and disbelief. Their expressions changed when he rolled his creation outside and set it off. With a roar and a great cloud of smoke, a plastic ball was launched across the yard. It was truly remarkable, the amount of firepower a chunk of common plastic sewer pipe could deliver.

Over the next few months, he refined his homebuilt artillery until he could shoot holes in plywood sheets from halfway down the driveway. Even my friends were impressed. I questioned him about safety, but he reassured me and pointed out how many other young people were involved in black powder competitions, potato cannon making, and even pumpkin chucking. “We should do that,” he said excitedly. He got the idea that he’d like to compete in the world championship, and I almost went along until I found out it was held four hundred miles away, and the winners used homebuilt guns the size of the army’s medium-size field artillery.

I looked at Cubby’s experiments and marveled, and so did his friends. It seemed to me that I had a potential inventor on my hands. I thought of the sound effects and special effects I’d dreamed up in the music world, and envisioned him doing something similar with this. Never in a million years did it occur to me that his experiments would end up landing him in such hot water a few years later.

Impressed as I was by my son’s ingenuity and newfound social skills, I still had worries about his academics. Indeed, his problems had already surfaced with a warning from the school: “Jack is not doing his assignments, and he loses or forgets them all the time.” Those were the same sort of warnings he’d gotten in South Hadley; it was one of the problems we’d hoped to escape. With a dull sense of dread, I imagined my own high school failure playing out with my son. I never did my homework as a kid, and his homework load was far greater than anything I had known. We tend to look back and think we had it harder as youths, but when it comes to homework I know the reverse is true.

The note didn’t surprise me; I’d been primed to expect trouble. What did bother me was the news that he wasn’t doing his work. In anticipation of the upcoming high school workload, we had gone out and gotten him binders for all his classes. We’d set up colored dividers to organize things and purchased a little book that he could use to jot down notes. Could all of our organizational assistance have failed him?

A look in his room might have provided a clue. All teenagers
have messy rooms, but his was beyond normal. It was the kind of room they featured on TV shows and cleaned out with a front-end loader. The floor was so covered in clothes, toys, and books that you couldn’t open the door all the way.

I guess we should have realized the inside of his head might look sort of the same. Unfortunately, we didn’t make the connection between the mess in his room and the chaos elsewhere in his life. His disorganization was a sign of an executive functioning problem, something psychologists see in many autistic people. At the time, the best we could do was clean the floor when he wasn’t there.

When he came home from school, we learned we had to check his homework and review what he was expected to do. Martha often spent hours sitting beside him at the dining room table, going over his assignments line by line. Every night, we said, “Have you done all your homework?” and he answered yes. The trouble was, when I asked to see his papers, they were invariably covered in illegible scrawl. But when I pointed that out, he looked at me as if I were nuts and read what sounded like articulate prose from the paper.

I wasn’t sure what to do. Cubby had conquered the reading challenge on his own. Writing was another matter, and he was starting to struggle in math as well. With the addition of his organizational troubles, even I felt overwhelmed.

Not only did the school offer no constructive help, they acted as if we’d done nothing at all. Their indifference to Cubby’s plight made me furious. I was so mad I could not go see them, and I had to turn over school communications to his mother and Martha. I was sure the school had failed us but uncertain exactly how it happened. Worst of all, I felt powerless to do anything about it.

Finally, Martha suggested we try tutoring. We were in a college town, and there were plenty of students looking for jobs. At first, it seemed to work. The assignments the tutors helped him on did get better grades, and he understood the work more fully. But the notes about lost assignments and poor organization continued.

Then we got the idea to try the Sylvan Learning Center, a place we passed every time we went through Hadley. We stopped by, and it seemed a friendly environment, populated by grad students from the university, local teachers moonlighting after school, and a bunch of jolly-looking kids. So we spoke to a counselor there and over the next few days Cubby completed one test after another. Interestingly, he didn’t seem to mind. Apparently, he wanted help just as much as we did.

We returned to Sylvan the following week to talk about the results. Cubby was two years behind his grade level in writing and math. The good news, they said, was that with intensive work on both, and help with organization, Cubby could be up to grade level or better in six months.

The idea that we might fix his academic issues in one school year sounded too good to be true, but the Sylvan people had a plan, and we decided to give it a try. Every day after school Cubby would go to Sylvan, where he’d do handwriting assignments and get help organizing his assignments. On some days he’d get math tutoring. Instead of doing his homework at home, he’d do it there, and a teacher would make sure everything was complete before we brought him home.

I was stuck at work when school let out, but Martha had more flexibility. She shuttled him back and forth from school to Sylvan to home. I worked harder to make the money to pay for the program. The results were visible right away. His grades went up, and the threatening notes from the school tapered off and finally ended altogether. In a matter of months, he had advanced two grade levels in math, and his handwriting had improved dramatically. We were both shocked and thrilled by the speed and magnitude of the improvement. It was the same sort of change we’d seen years before, with reading.

My hopes of Cubby graduating from high school returned.

Unfortunately, his academic success wasn’t self-sustaining and
our financial resources were not unlimited. When we stopped bringing him to Sylvan, his grades plummeted. We weren’t sure why, because he retained everything they’d taught him in math, and his handwriting and grammar didn’t deteriorate. He just seemed to stop getting things done.
It must be the organization
, I thought. We’d watched them walk Cubby through the steps to complete an assignment, and he followed the tutor just fine, yet he was simply unable to follow the same routine on his own. Every time I got mad, or decided he was just lazy, I reminded myself of that day the Yale shrink had drawn a tic-tac-toe game on the blackboard and my son was unable to copy it on paper. Then I remembered how we could tell him which boxes to mark, and he’d do it right every time. I wondered how that translated to his present-day trouble, but I never found the answer.

(Today, almost ten years later, I serve on the federal committee that makes the government’s strategic plan for autism research. Simple as my son’s issues sound, I now know the best scientists in the world have yet to find all the answers to problems like these. A few new behavioral therapies can help, but they only take us part of the way. The mind is a complex thing, and the simplest observed behaviors may have complex roots.)

We signed him up for another round of help, and another after that. All was well, until the bill came due. We’d spent ten thousand dollars, and we weren’t even halfway through the school year! With a shock, I realized Cubby’s tutoring was costing as much as a good college. I did some quick calculations. At the rate we were going, it would cost a hundred grand to get our son through high school. What then? We couldn’t afford it.

I had just built us a house in what we believed was the best school district in the area. Before moving, I’d gone through the calculations of what the house would cost, the value of a better education for our son, and the other alternatives. The idea that he’d need costly coaching in addition to school had never crossed my mind,
but even if it had, it wouldn’t have made any difference. Forty or fifty grand a year for educational assistance wasn’t in the cards, wherever we lived.