—Like to have an apartment by yourself?
—Maybe.
—Don’t you think you’d be scared of that, be lonely?
—People could come in twenty-four hours to check on me.
—I think you’d be lonely being in an apartment by yourself. I think you’d be happier living with other people.
—Yeah.
—Because you’re going to get to that age of what to do once your brother Matt leaves high school and no kids are at home at your mom’s.
—Which will be 2011.
—We’ve got to figure out what to do.
—And by 2011 I will be I will be I will be twenty-seven I will be old so it won’t be until 2011.
—I’m worried about you living in an apartment. I would miss you.
—Yeah.
—It feels like somebody’s sending you to prison.
—Yeah.
—Do you know what that means?
—What?
—I just feel it would be like putting you away.
—Yeah.
—But maybe you would like it.
—Yeah.
—You seem really happy with your friends and maybe they could live with you.
—Yeah.
—That’s when you seem happiest, with Shanna and Andrew and Joe.
—Yeah.
—They make you smile. And you love it when new people come and you all tiptoe on the grass to see who is coming.
Zach removes himself into his silence, not because he is confused but because he is anxious. He pushes his seat back and closes his eyes. He falls asleep somewhere near Kenosha. I remove myself into my own silence. Zach’s friends all have impairments of one kind or another. Some have Down syndrome. Some have the same limits of comprehension that he does. Like all disabled people, they are unwanted by society at large regardless of strides that have been made over the past decade, particularly with the expansion of the diagnosis of autism.
Many psychiatrists and parents of classically autistic children feel the definition has become too broad and resulted in an unmerited explosion of cases. Aim has been taken at those said to have Asperger Syndrome—now included in the so-called autism spectrum disorders—because many are high-functioning intellectually, despite difficulties in social interaction. Within the disabled community, an unfortunate schism has developed, a civil war in which we are fighting each other: parents of children who are truly autistic resent parents who they believe are gaming the system by having their children labeled with Asperger’s to gain extra support from school districts—in effect free tutoring—and receive unlimited time on the SAT and other tests.
There are always parents gaming the system and there always will be. But the vast majority of cases, autism or Asperger’s or whatever else we choose to call it, are real and serious conditions. Regardless the level of function, if you are living outside the social mainstream, you need and deserve help. I know in the case of Zach what a difference intervention made.
As usual, the issue is one of money rather than diagnosis. Schools, looking for ways to cut budgets, want to pay as little as possible for children with disabilities, and make every effort to minimize the condition. So does the federal government, where Zach, for example, is clearly entitled to Social Security because of his disability, but only gets it after his mother makes the annual trek to some office and fights through the bureaucracy. Not to mention that Zach is absurdly given an aptitude test every several years, as if he might transform into a member of Mensa when he cannot drive or cook on a stove or add two-digit numbers.
Zach is just one of millions. It is a despicable situation, since these children should be a priority of our government, instead of the billions spent on futile wars. Many of them, with help, are capable of work and social integration. It is our moral obligation to make them into productive citizens. But without the assistance they deserve, they will always live outside the world or at best on the bare fringes of it. They will remain among the unwanted.
In 1992 we returned to Philadelphia from Milwaukee so I could write a second book. The boys were nine by then, Gerry at a private elementary school and Zach at Vanguard. He had been in self-contained programs all his life, but never in a school where all the students had severe disabilities and special needs.
The school had wonderful teachers and all the services a parent could want. It had small classes. It offered physical therapy and occupational therapy. But it was about twenty miles from our house and drew from a wide radius. Zach had no friends, at least no friends he could see easily. That was always how I justified our decision to stop sending him there: it was just too far away. There was truth to that, but not the whole truth. The rest of the truth was that I felt a shiver every time I pulled into the grassy parking space on the edge of a field and heard the crunch of gravel under my feet as I went to observe. Inside, there were jaunty watercolors and other artworks the students had made with endless coaxing. You could feel the determination in each wobbly stroke.
Zach’s classroom teacher was a marvel. There were eight kids in the class, all of them prepubescent boys. She had this ability to see no difference, to treat them as she might treat anyone else. But all I ever saw was difference, these boys scarred and severed from the world at large in their own lock box without a key, eyes receding and eyes darting and eyes befuddled and eyes looking vainly upward for some glimpse of celestial light of explanation. Some of the kids were verbal and some were not. Some could do the simple math and some could not, and some, like Zach, even though he was ten, could do some of it only by counting slowly on his fingers like the endless peeling of an orange. Some had to be constantly told to settle down, and the tiny classroom seemed combustible to me, a place of unknown and captive energy that could explode at any second, the brain being prodded to do what it could never do and these boys just tired of it fucking all, a flick of angry consciousness that nothing made the sense it should and why were they already sealed and shut off like prisoners? And all those boys, those boys, a hothouse of desires that would never be fulfilled because they would never know how to fulfill them.
Whenever I visited, I did my best to be upbeat and was upbeat and treated them with the vanity of normalcy. But I saw them as freaks, sweet lost freaks, a carnival come-on just like the exhibits of premature infants. Whenever I left the school I felt as if the whole world was watching me, had discovered my shameful secret. I walked back past the watercolors with the crooked smiles that broke my heart. I wished the receptionist a cheery goodbye. I waved to teachers I knew. I chatted a little. Everything’s fine, good, yup, Zach is doing great. He was doing great in the context of what he could do. He liked it there, but I couldn’t wait to get the hell out. And I couldn’t wait to get Zach the hell out.
The opportunity came when Zach turned high school age; his mother and stepfather and family moved to Haddonfield, a small-town gem in New Jersey about a half-hour from Philadelphia. I had once lived in Haddonfield. It had a smug tranquillity, and I liked the main street lined with stores like something out of a Currier & Ives print. It was safe. It was clean. The biggest crime was teenage drinking, the mice at play with the parents away. It was everything too much of Philadelphia was not for a child like Zach. I knew the time had come for my son to go with them. Most important, it had a public school system that could cater to my son’s needs without total isolation from regular students and provide him with a social network.
At the time, we were living on a quintessential Philadelphia block where the houses had been built in the 1920s out of solid stone and stucco and came with sunrooms. But the surrounding neighborhood was balky. Zach liked to walk when he got bored, but I only allowed him to go around the block. I was willing to let go of him because he would be moving to a town that was self-contained and would give him a freedom that even then he was beginning to covet. I also knew in my heart I could not match his mother’s ceaseless energy. She would fill his days with her kinetic energy that both awed me and m
ade me ready for a long nap.
I did not miss his daily presence because I no longer knew how to cope with it. I did not miss the nightly regimen of back-and-forth pacing and perseverative behaviors. Most of all I did not miss the abyss that had grown wider and deeper between us, as I watched him in the corner of the red couch silently watching a TV show he could not understand, folding and unfolding the map he always had with him hour after hour until I finally said it was time for him to go to bed. I hated that silence. It meant loneliness to me, his loneliness, his separation from me. My loneliness, my separation from him.
Plus I still had Gerry with me. I still had an unbroken mirror in which I could see many of my parental aspirations. I loved watching him play varsity high school tennis until he firmly told me that I could no longer come to his matches if I continued to bark instructions to him during points. I traveled with him to prospective colleges. I watched as he gathered in a girlfriend and amassed a collection of fine and steadfast friends he might keep for life, his band of brothers. They traveled with one another and partied with one another and consoled one another in the endless vagaries of teenage love.
Zach would never have any of that, but he loved Haddonfield, and Haddonfield loved him. He became the de facto mayor since he remembered every face and name and was boundlessly friendly and, like his mother, never shy. His warmth was a balm to the most savage soul. But he was still among the unwanted.
Zach knew virtually every student at Haddonfield High, since all he had to do was hear their names once. He adopted their style of dress, the baggy jeans sweeping the street and the floor-to-ceiling shirts. He adopted their vernacular as best he could. The wrestlers liked him, and the football players liked him, and the cheerleaders liked him, and so did the giddy girls in the skintight jeans with the exclusive butts. They were kind to him, the genuflection of their blond hair as they said hello, offering the airy enthusiasm unique to their genes. He craved their recognition. You could see it in his shy, lowered eyes and the back-and-forth play of his hands.
I watched him once when he didn’t know I was there. I heard him say Hey man to a football player because that’s what he had heard in the hallways of high school. I heard him ask What’s up for the weekend?, not so he would be included, because he would not be included, but just to feel what it might be like to belong to the common teenage world and its teenage tongue. Then the football player went in one direction and Zach in the other. It was always that way. It would always be that way.
Zach did not seem upset at being left out. All he wanted was the recognition. But I wanted more than recognition. I wanted them to go off together and finagle a six-pack of beer and talk about which giddy girl they wanted to screw. I wanted him to be invited to the hot Saturday night party. Tears formed as I watched my son from the shadows. I wiped them away before he saw me.
I cannot remember any Normals his age interacting with him out of anything more than noblesse oblige. A few of the Normals were kind. They liked him because he was so eminently likable. But as some can smell fear, the Normals smelled his disabilities. Nobody was mean. Nobody was cruel. But the iron curtain had gone up at his birth and no one would tear it down.
All Zach wants, all his friends want, just like everybody wants, is unconditional acceptance. That is what they give each other. Unlike the rest of the world, they see no difference in each other and make no diagnostic distinctions. They demand only proper behavior from each other. They express neither pity nor self-pity; as Zach told his mother when he learned he was going out to dinner one night with a girl who was blind and deaf, “That means I can order what I want from the menu.”
As I drive through Wisconsin, I ask myself: Shouldn’t Zach live with his friends one day? It could be done. Around the country parents had bought houses, found competent and caring twenty-four-hour-a-day in-residence counselors, met all state and federal standards, and then stocked the houses with disabled adults who all knew and liked each other. I found out through a friend a private group-style residence run by a charitable Jewish foundation that sounded perfect for Zach’s needs. He gave me the number of the woman who ran it, but I couldn’t bring myself to call her.
I still could not overcome the idea that I was sending Zach to prison, although it was becoming less and less clear where the prison was: a supervised home with his friends or living alone with one of his parents. I always circled back to the same aching question: What would happen when his mother and I were no longer here and living with his parents was no longer a choice? There actually was another alternative.
I believed it would be the best option for Zach, or at least the one that would give me the greatest peace of mind. It was also the most difficult choice of all. I would not even be the one to make it.
III
When Gerry was a senior in college, he applied for several teaching internship programs. We spent several days in Connecticut when he was interviewing. One morning, I drove him to the end of a long driveway outside a private school in Greenwich. As he prepared to go inside, I studied him in his coat and tie. I made a quick checklist of the things that were bugging the crap out of me, the shirt that should have been button-down and the black shoes that looked too scuffed. Still the father. I held back. He was nervous. So was I.
I sat in the car after he left, watching him as he walked up that driveway into a building at the top of a hill. I wanted to leap out of the car and call him back, promise to do a better job of parenting, ask for a mulligan. I wanted to apologize for interrupting him during his second serve, to be more communicative, to think less about my career, to tell him the secrets every child should know. But it was too late. At that very moment, I knew that he was leaving me to become his own.
You are filled with so many contradictory emotions when this moment comes. Part of you wants to sob as you recall the days when your child was utterly dependent on you. Part of you wants to cry because you are suddenly overwhelmed by an emptiness you have never encountered before—Okay, you have done your job as parent, thanks for the memories. Part of you just wants to sit in the car and beam with pride as you watch your child, who is not a child anymore, leave your confines and begin to build his own. All these feelings were only multiplied by the juxtaposition of Gerry with Zach.
Several weeks later, Gerry was offered an internship at New Canaan Country School. During the summer, on the way back from our vacation on Nantucket, Zach and I exited the bleak black heat of Interstate 95 and made our way to New Canaan so we could see the school-owned apartment that Gerry had been assigned for the coming year. The house, odd-angled and distended and painted lighthouse white, stood on a busy, tree-lined corner. Gerry led the way up a narrow staircase to his apartment on the third floor. He opened the door and there it was, his apartment, spacious, reasonably clean, albeit with a mottled carpet that smelled of the musky interchange of bodies and the ample spillage of beer and God knows what else, the earthy, beefy smell of young males.
Gerry started going through the apartment, figuring out which room would make the optimal bedroom and where to place the hand-me-down couch in the living room. Zachary stayed in the living room with a map of New York and Connecticut, locating the house so he would forever know how to get to it. Gerry and I talked about cable and Internet hookup and credit card rates and different types of mortgages, imagining a future in which he would buy a house. I thought about drawing Zach into our conversation. But he was still inside his map, tracing the routes and highways and streets to where his brother was going without him, and it was better to leave him there. The difference in my twins, always inverted mirrors of one another, never seemed greater than it did that day.
Several months later I visited Gerry again and watched him teach. His interaction with the fourth-grade kids, his confidence, his pat-on-the-head tenderness with the needy ones, and his firmness in squelching the fires of antsy silliness enthralled me. Where had he learned all this? How could he have learned it without me?
The next day,
a Saturday, we went to a little diner off the main street of New Canaan for breakfast. We picked it because it was the cheapest place in town, a place where you could still get eggs and home fries and bacon and toast for six bucks instead of the usual one hundred and twenty-five plus tip. The place was crowded and tiny; customers at small square tables ate voraciously and surreptitiously, as if getting such a deal in New Canaan was a felony. Gerry and I could only find seats at the counter. He plowed through his breakfast. I poked around because I was edgy, drinking one cup of coffee after another. What I was about to bring up with Gerry was yet another enormous consequence stemming from 3:30 P.M. on the Saturday when he’d entered the world three minutes ahead of his brother. It had brought him to this place of sole proprietorship. But it also carried with it a responsibility that seemed too awesome.
—How would you really feel if Zach lived with you at some point in your life?
—I don’t know.
—I wouldn’t think you’d feel so good about it.
—You don’t think I would?
I could hear in his voice confusion and hurt. Perhaps he was thinking, wrongly, that I believed he wasn’t up to the challenge, lacked the sense of duty and loyalty it required.
—It’s a big burden.
—I don’t think so. It’s a lot of responsibility but at the same time he’s my brother.
—You’re going to get married and you’re going to have kids. It will be hard.
—He’ll be part of my family, you know. I’ll take care of him.
He was all of twenty-two years old, and yet it was something he had to start thinking about. If Gerry placed Zach in a private group home, however caring and watchful, he could be consumed by ceaseless guilt. If Gerry decided Zach should live with him, the disruption could be intolerable.
“You’re a better man than I am,” I told him, and I meant it; nothing in my life would ever approach the difficulty of the decision Gerry would one day have to make. He didn’t reply.
Father's Day Page 10
