Raising Cubby
Page 21
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.
Today, there is a whole industry built around advocating for services. Lawyers and consultants hire themselves out to parents to force school districts to provide the support the law says they must deliver. Schools might fight tooth and nail, but the lawyers usually prevail. However, it never occurred to us to pursue a legal remedy. We assumed we were on our own. Little Bear had fought with the schools back in South Hadley, but all she got was an agreement that they would pay for Cubby to be tested. And I had never looked to others to save me or anyone in my family. The way I saw things, from the moment I left home as a teenager, I worked or starved. There was no safety net. It never occurred to me that things might be different for my son.
I sure wish I’d known a little more and hired someone to fight hard for Cubby. Twenty hours a week of one-on-one coaching might have made a world of difference for him. But I didn’t know, and it didn’t happen. I told Cubby we had to cut back on tutoring. Instead, Martha volunteered to help with organization. She accompanied him to Sylvan and watched carefully to see what they were doing. His coaches were happy to help her and offer advice. It seemed pretty straightforward.
Unfortunately, it wasn’t. His grades dipped again, and stayed that way. The admonishing notes resumed and their tone made me feel as if our fitness as parents was challenged right alongside our son’s poor academic showing. At first we didn’t know about the warnings, because Cubby came home before us and he took to looting school correspondence from the mail. Weeks went by with no word from school, and I thought we were on track. The report card we pried from him set that notion straight.
I felt sad and scared and powerless. I could not afford the kind of help he needed, and the help I could afford didn’t seem to make any difference. The worst thing was, my son was losing interest in school. With every nasty note, he lost a little more hope that he’d ever actually graduate. At the same time, he saw his budding success with chemistry, and thought the same kinds of things I’d thought about school versus electronics many years before.
“If I’m never going to graduate, why should I stay? I�
�m doing just fine learning chemistry on my own. What do I need high school for?” I tried to tell him how hard it would be to land a job as a chemist with no academic credentials.
“You did fine,” he responded.
“Cubby, the situation was totally different. I joined a band, and used success there to get a job designing sound effects. And look at me now! I fix cars! Where’s the brainpower in that!”
If he wanted to be a chemist, I told him, he needed to go to college. In fact, college wasn’t even enough. His ambition was to do something big, like invent a new explosive or design a new antidepressant. To do that kind of work, I explained, he’d need a doctorate from a top-tier university.
He still didn’t give in. “I could invent things, like Bob Jeffway. If I bring a big company a chemical process that works, they aren’t going to ask where I went to college.”
I didn’t know what to say, because he was basically correct. Bob was one of my oldest friends. We’d been engineers together at Milton Bradley almost thirty years before. Back in 1979, Bob and I both earned a great living as engineers and thought we had it made. Yet the wages we earned then seemed like peanuts compared to the royalties Bob made later, when he went back to those same companies as a game inventor and designer. Cubby knew that. There was no personnel officer scrutinizing the credentials of inventors when they walked in the door. If someone brought Milton Bradley a winning game, they grabbed it. It didn’t make a shred of difference whether the designer walked out of a Florida swamp or graduated with honors from Harvard.
“It’s a hard road, Cubby,” was all I could think to say. “Being a freelance inventor, with no one bankrolling your lab or your lifestyle—that is a hard road to follow. No matter what you say now, life as a chemist will be a thousand times easier if you get a good education. I just want you to make the right choice.” All I could do was hope he was listening.
Teenagers are very different animals from little kids. Little Bear and I found that out when Cubby was about fourteen or fifteen and began making plans of his own with his new Amherst friends. We parents weren’t included. Actually, we weren’t even consulted. Cubby simply began riding the bus to his friends’ houses, or getting rides, and staying late into the evening. On days when he was supposed to be with his mother, he’d call her and say, “I wanna stay late. I’ll have Dad pick me up, and I’ll stay with him.” Over the space of a year, he went from staying with Martha and me three nights a week to living in Amherst five or even six nights a week.
There were times when his mom got mad at that arrangement. “I need to get a lawyer,” she would say. “You’re undermining our equal-custody agreement.” She thought I was conspiring to take Cubby away from her, but I wasn’t. I told her so over and over, and eventually she realized it was true. Our son was old enough to make his own decisions, and he was choosing friends and community over us. He might have spent more nights in Amherst, but I didn’t see him all that much either. If he was at home, he was in his room with the door shut, on the phone or on the computer. If he was out with friends, I didn’t see him except briefly on the ride home.
With every passing day, he was becoming more and more determined to run his own life. Parents who were once founts of knowledge became dumb as rocks overnight. Not only were we stupid, we were uncooperative, embarrassing, and totally useless. It was nice to be needed.
“Dad,” he would say. “I need a ride.” That became our principal conversational exchange. I wasn’t sure how to go beyond that. I realized I relied on Cubby to start and maintain conversations. He’d always launched into monologues when I picked him up after school. I’d spent countless hours learning about schoolmates, Beanie Babies, Yu-Gi-Oh! cards, or whatever else was on his mind. I didn’t have to do anything to keep the flow going; the challenge was making it stop. When that suddenly changed, I didn’t know what to do.
Being Aspergian, it did not occur to me to say, “Hi, Jack, how was school?”
Being a geek himself, it did not occur to my kid to expect any questions.
When we got home he’d go into the kitchen, wash his hands five or six times, look at them, and wash them once again for good measure. Then he’d head for his room. His hand washing—sometimes as much as fifty times a day—was the most visible of his compulsive behaviors, now that he had outgrown brushing the hair off his head. I thought it was mostly harmless, except when he washed his hands so much the skin turned raw. We went to the doctor, who prescribed creams, but we never found a treatment for the underlying behavior.
Despite the hand washing, for a long time he had a powerful aversion to the shower, and he’d stay out of it for a week at a time. Then something changed and he went to the opposite extreme, taking hour-long showers with the water on hot. He’d ignore my yelling through the bathroom door, and I’d get so annoyed at the waste of water that I’d shut the lines off in the basement. Then he’d emerge, swearing.
“Run the shower all day when you pay the water bill,” I told him. We learned to get along the best we could.
Maybe his eccentricities don’t need treatment, I thought. Not everything does. My dad had many Aspergian traits and he also washed his hands compulsively. Now that he’d gotten older and stopped drinking, he was okay and functional. My real concern was staying engaged with Cubby as he got older. That was hard to do when he stopped talking to me except to yell.
Of course, Cubby’s sudden lack of interest in friendly conversation didn’t stop him from pointing out my many defects and character flaws. Every week I’d hear some variation on, “You’re acting like a weirdo freak, Dad, all my friends think so!” I had known about my Asperger’s for a number of years, and I was willing to accept that perhaps I was somewhat different from the other dads in the area. However, I didn’t think that was what he meant. Sure enough, a bit of observation made it clear that the times he said I was weird, or a bad parent, or the worst dad of all were when I declined to do what he wanted. Thinking that through, I concluded that he had no idea if I was bad or not. How could he know? I was the only adult male he had ever lived with. He had no idea what his friends’ dads did, and they no doubt described their parents with the same pugnacious derision he reserved for me.
That insight certainly made me feel better. After all, I did want to be a good parent. But it didn’t change what I had to deal with. All Cubby knew was that I wasn’t fulfilling his every wish. For that I was deemed worthless.
I tried to take it all with good humor. He was still my Cubby, and I liked him a lot. Even when he was totally obnoxious, self-centered, and combative. For now, I controlled the house, the car, and the money. He would have to act nice and deal with me until he could move out. I wondered how soon that day would come.
Thinking about that, I realized he had abandoned parents for friends. The year before, I’d wondered how long my little boy would remain a boy. Suddenly and without warning, I knew the answer. He wasn’t a boy anymore.
“But he’s not a man yet, either,” my friend Bob told me. My buddy Neil had a better response. “This is when you chain him to a tree in the woods, and bring him a sack of food once a week. He’ll either get nicer and come home, or run away.”
Yet he wasn’t always nasty. There were times he’d still snuggle up to me and listen to a story, especially when he was going to sleep. I’ll bet he’d be embarrassed to admit it today, but there was still a little boy hidden deep inside.
Cubby had always been resistant to discipline. The more he moved from the parental orbit to the wider universe of his teen friends, the harder it was to obtain behavioral compliance. He was constantly testing us. “Call for a ride by eight,” I’d say, “or get yourself home by nine.” Sure enough, 9:05 would come and the phone would ring. “Come get me, I need a ride.”
What do you do in a situation like that? You can’t leave your kid at some other parent’s house. You have to get him. What then? The parenting books made it sound so easy, but it wasn’t. If I refused to get him, I ended up with a snark
y parent in my driveway, pissed off that he had to bring my kid home. “Tell him to walk home,” I’d say, but they never did.
Cubby became a master at playing me and his mother against each other, too. That made it very hard to impose consequences or levy any sort of punishment. We agreed that we wouldn’t whip him or cut off his ears, so what did that leave us? Cut off his allowance? All that got was a call to his mother, or my mother, or my brother, and someone would replace what we took away without our ever knowing. He’d learned to circumvent us very nicely.
The same situation applied for his other behaviors. When he rode that bus to his friends one time too many, he’d call Little Bear and have her get him instead of me. He’d stay at her house a day or two and hope I’d forgotten his previous transgression by the time he came back.
Like most teenagers, he was difficult to raise.
“You need a job,” I told him. “A working kid is a happy kid, and everyone knows children are born to the yoke.” He just looked at me, wordless.
Jolly fun parenting had come to an end.
In the spring of his fourteenth year, Cubby did something extraordinary. He got a girlfriend. Others may take girlfriend acquisition for granted, but for geeks like me and my son, romantic success is far from assured. I knew that from personal experience and years of loneliness. When I was Cubby’s age, I had only dreamed of holding hands or kissing a girl. My kid actually pulled it off.
Of course, I didn’t find out about the girlfriend because he told me. I had to deduce it from his behavior.
The first thing I noticed was that he stopped coming home from school on the bus. Instead, he began walking into town and hanging out with friends. At least that’s what he said. I didn’t mind him doing things after school, but I did mind the phone calls. “Dad,” he would say, “come get me. I missed the bus.” The first five or six times, I believed him. But when it became a daily thing, and I found myself picking him up at a café half a mile from school … something was up.