The blue box also documented all the missed milestones: not walking until he was nearly two; not speaking his first word until he was nearly three; unable to use language for conversation when he was five and difficult to understand when he did speak, a performance IQ in the .1 percentile. From one report alone written when he was eight: “highly distractible,” “hyperactive,” “unusual preoccupations,” “tends to shriek,” “assuming the role of clown,” “perseverative behaviors,” “echolalia,” “difficulties with tactile discrimination,” “visual and fine motor deficits,” “quite delayed,” “borderline range of intellectual function,” “capacity for empathy, social understanding, genuine social interaction is minimal.” From another report when he was nine: “severely learning disabled,” “poor social skills and judgment,” “wandered aimlessly around the classroom,” “looked out the window while he ate his snack for approximately fifteen minutes.” His reading skills then were at a kindergarten level, his verbal comprehension skills in the 8th percentile, his perceptual organization skills in the .1 percentile.
He was not easy to diagnose. Some said he was autistic. He had aspects but it was not a clear-cut diagnosis. Some said he might be having mini seizures. Wrong. One said he had Tourette’s. Ludicrous. Those who tested him saw a little boy who was charming and beautiful, with a prodigious memory that baffled them given his other debilities. They saw moments when he became suddenly engaged for reasons they couldn’t quite explain. He receded into emotional flatness and I have never seen him cry. Wrote Dr. Martha Benoff, when he was ten, in the best summation of him, “[He is] a child who defies simplification and clear-cut diagnosis.”
So I ran with it all into his early teens, found the Vanguard School, and fought to get the city and state to pay for it because it is their legal obligation although they do their best not to pay for it and insist your son or daughter is just fine in a regular school where there is none of the educational support they need if they are to have any chance in later life to become productive citizens instead of closeted.
Each year I dutifully went to so-called IEPs, Individual Educational Plan meetings. I sat there in a circle surrounded by the lead special-education teacher, the speech pathologist, the occupational therapist, the physical therapist, the school psychologist, and several others who were a mystery to me. They talked as if they knew my child. A few of them did, but most of them did not. I knew they meant well, but their good intentions were often of little help to Zach except for those who saw their mission as a calling. As I sat quietly in that circle, I listened to them set goals for him that I knew he could never meet but which they promoted to fulfill bureaucratic requirements—completing open-ended sentences eight of ten times, answering questions about a story eight of ten times, adding or subtracting two-digit numbers with a calculator. There were dozens of them, all equally absurd. I remember once getting in the car to go to an IEP meeting, convincing myself on the way there that I had left the coffeepot on at home and had to turn around in order to avert a fire. I knew the coffeepot had been turned off. I had conjured it up so I could have an excuse for missing the meeting. I simply could not go anymore.
I largely stopped making the circuit of doctors. I stopped the testing because there were just so many times I could read that my son scored in the .1 percentile on something. When Zach was about ten years old, Debra and I found a neurologist at the Children’s Hospital of Philadelphia named Larry Brown who realized that parents needed treatment as much as their children and gently tried to convince us, and especially me, to accept Zach for who he is. Dr. Brown saw a boy who had made remarkable progress from birth. To underscore the upside of Zach’s situation, he described some of the other cases he saw in his work, like the set of self-mutilating twins who had to wear muzzles because they bit so savagely. The nominal diagnosis for Zach was pervasive developmental disorder, but Brown acknowledged it was a meaningless tag because of Zach’s high functioning in certain areas accompanied by “very severe learning disability, attention deficit disorder and borderline cognitive functioning.” He was the first doctor who refused to slot Zach into some neat medical compartment. As he told Debra and me at one point, your son is a “mishgosh” of behaviors.
I stopped searching for miracles because I was making him a guinea pig, fodder for arrogant or clueless doctors. I stopped because I grew tired of looking for answers that would never come. I stopped because of prescriptions given for drugs whose names I could not pronounce without any real idea of what they did.
The most cursory and misguided examination was done by Dr. Joseph Biederman, affiliated with Harvard Medical School and Massachusetts General Hospital and a world-renowned child psychiatrist. He saw Zach when he was five, largely as a favor to my second wife. He examined Zach for roughly ten minutes, proclaimed he had Tourette’s, presumably on the basis of Zach’s tics, and prescribed a patch of clonidine to be placed on his thigh. I was shocked he had made the diagnosis so quickly. But he was world-renowned in his field. I obviously was not. Who was I to question him? All the patch did was cause an ugly rash on Zach’s thigh that he could not help but scratch. As for Tourette’s, at least three physicians said he did not have it. “Tourette’s syndrome is not a viable diagnosis in the absence of chronic, multiple motor and verbal tics,” Larry Brown wrote in an evaluation. Also, Tourette’s is believed to be largely inherited, and none of Zach’s relatives had it. So I was not terribly surprised when Biederman was found to have accepted roughly $1.5 million from drug companies between 2000 and 2008 without disclosing this income. In one case, Biederman took money from Eli Lilly while also being paid by the National Institutes of Health to examine the effects of an Eli Lilly drug.
Zach’s problem was in the brain, and I began to realize that the brain, however unfathomable, is driven by what Oliver Sacks calls the “the coherent self that exists in all of us.” It was an inspiring description. I began to envision Zach creating his own coherent self at his own pace. But I still struggled to accept who he was. I was still ashamed. I wanted bragging rights to my son. My parents, and my mother in particular, had lived for bragging rights to their kids. And I had always lived to provide them.
III
I grew up in a milieu where admission to the academic elite was presumed. My father had gone to Dartmouth. My mother to Smith. My grandfather to Harvard. My uncle and two of his children to Princeton and the other to Stanford. I graduated from Andover in 1972, where 60 kids out of a class of 260 went to Harvard, Yale, or Princeton. And that was an off-year. I went to Penn, then considered a safety school by fellow classmates for those desperate to get into an Ivy.
My parents had a house in Nantucket, which they filled with guests every summer. I welcomed all of them except the Bernsteins because the Bernsteins were perfect. The Bernsteins could hold their own against anyone with a combination of humor and intellect. The Bernsteins were even friendly and funny and kind. The Bernsteins scared the shit out of me. Father Bob had gone to Harvard and was the head of Random House. The two Bernstein sons I knew best, Tommy and Peter, set a new standard for precocious accomplishment. Tommy Bernstein went to Yale and it was assumed that he would become either a major politician or very rich. Peter Bernstein was the editor of the Brown University Daily Herald and had spent a semester as the only white at an all-black college at a time when race relations were both tenuous and tense. Everybody in the family read the New York Times from cover to cover. They watched the Watergate coverage on television for hours a day and then spent further hours debating its legal and social and political ramifications. I tried to watch the Watergate coverage but found myself bored beyond death except for trying to understand the thick southern drawl of Sam Ervin.
I felt great relief when the Bernsteins left. They were too intelligent, more current than the current events themselves. I went back to delivering newspapers on my bicycle at ten in the morning since the papers in those days came by the midmorning boat. I stopped taking The Sunlight Dialogues by John Gardn
er to the beach, which was not only incomprehensible to me but very heavy. It was an intuition, and it may well have had as much to do with my compulsive desire to please as it did with Mother’s desire to have me please, but I was convinced she felt disappointed in me after the Bernsteins left. She adored that I was going to Andover, but I had no chance of getting into Yale or Brown because of my inconsistent grades, exemplary in English and history and abysmal in math and science, the worst dissection of a frog in the history of biology. I was not going to be superrich given my misunderstanding of most things financial. I was never going to spend a mind-expanding semester at an all-black school in the Deep South.
My mother was not comfortable being a mother. She got dramatically better at it once my sister and I were out of the house. But when we were toddlers, she never cooked a meal for us. If she did hold me, I have no memory of it, whereas I do with my father. As she saw it, children were placed on earth to perform, just like she had performed for her own mother, who had gone to law school in the early 1900s and started a firm on Wall Street in the 1930s with her husband. My grandmother believed that work was the only reason for living. My mother was the same way, finding a full-time job in the late 1950s when I was three, ultimately leaving us in the hands of a hired woman named Dottie, who cooked and cleaned and helped with homework and gave me maternal love and what little sense of true self-worth I was able to muster.
I was scared of my mother. I never wanted to set her off. She became frustrated easily, her zero-to-sixty temper, her phrase “So help me Hannah!” code red for start running your ass off. The only way to gain her heart was through achievement. Failure was not an option in my mind. When I was in elementary school and moved from the top-tier math class into one that might be easier for me, she marched to the school and furiously demanded I be transferred back. When I arrived at Andover in 1968 at the age of thirteen, my father hugged me on the front steps of my dorm; he felt like crying because I looked so alone. My mother’s only comment was that I’d slouched and mumbled when I met the headmaster and made a mediocre impression.
I was determined not to subject any of my children to the same pressures I had felt growing up. Love came easily to me; few moments in life are more peaceful or more intimate than rocking a baby back to sleep in the shadowy dark of the wee hours of the morning, hearing the little gurgles as he downs the bottle of formula like a drunken sailor, feeling the soft skin in the nape of his neck drenched in the pungent blossom of baby powder, gently placing him back in the crib, until he wakes up after thirty seconds and wails and you rouse your spouse and say, “It’s your turn.”
I vowed that my children would never have to dance for me. But I did want them to succeed. I wanted them to make me proud. Like grandmother, like mother, like son, the rituals of inherited behavior could not be entirely eradicated. Until the traumatic birth of the twins put an end to those projections.
When my friends sent their kids off to the Ivy League, and then told me how great it was that Zach was bagging groceries, I hated what I perceived as their patronization. I knew I was taking it the wrong way, a finely tuned habit. I knew they were genuinely happy that Zach was working, even while they silently thanked God it wasn’t their own kid doing the bagging. Tragedy for most of them was Penn instead of Princeton, Bowdoin instead of Brown. It was a tribute to Zach’s progress and his character that he was working. But grocery bagging was not a bragging right. Grocery bagging was beyond humbling for a father awash in ambition with friends equally baptized in it. At least it was better than the job he also had at Pizza Hut.
I watched him working there once. I dropped him off next to a reeking plastic garbage container in a cracked asphalt parking lot. I drove a little ways off so I could watch him without him watching me. I saw him come out of the back entrance wearing an apron and holding a broom and a dustpan. I watched him as he went around the cracked asphalt, gathering cigarette butts and shards of glass and pizza crusts into a pile, the detritus of kids who didn’t give a shit and figured in some subliminal way that there would always be some retard around to clean up after them. He used the dustpan to pick up the pile and dump it into the plastic garbage container. I remember watching his face, dutiful and accepting, except for the slight curl of the nostrils when he lifted the lid off the plastic garbage container and could smell the reek and rank as if it were covering him. I stayed as long as I could bear to, about thirty seconds, before I drove off.
I could not live with that image. I could not allow my son to do that kind of work for a living, scraping sticky, stringy mozzarella off greasy plates when he wasn’t picking up cigarette butts in the parking lot. I could handle his part-time job at the supermarket. I could not handle his other part-time job at Pizza Hut. He needed something else. Because I needed something else. Which is why, after years of not wanting to impose, I contacted the managing partner of the most prestigious law firm in Philadelphia, Ballard Spahr, to seek from him the biggest favor I’d ever sought from anyone. I asked Arthur Makadon, whom I’d known for about twenty years, to find a job for my son, two days a week, any job, in the mailroom, as a messenger, anything to get him away from the rank and reek of that dumpster. Anything that would give him a toehold in the world of privilege and success that was mine. Arthur knew that I was asking for myself as much as I was asking for Zach, and he didn’t force me to list Zach’s pros and cons, his skills and unskills, dos and don’ts. He understood the code behind my request: Please don’t make me have to tell people anymore that Zach sweeps the parking lot at a Pizza Hut. He took one second to respond.
—Done.
Because of his encyclopedic knowledge of downtown Philadelphia, we hoped he could ultimately deliver mail to offices at other buildings, though he started by stocking supplies and delivering interoffice mail and filling the fax machines. But I didn’t care what his job was. I cared only about being able to say that Zach was working at a law firm, the most prestigious law firm in the city. I cared only about liberating him from working with people whose sweat streaked their faces from the heat of the dishwater and whose eyes held nothing because they had gone dead long ago. They were just trying to hang on, and I didn’t want my son to be a hanger-on with them. This was hard-core classism, I knew, but so is America.
It wasn’t Zach’s liberation. It was mine alone, since Zach made no distinction about people as long as they were decent to him. He had no concept of status so he did not care about it. I had never ever heard him speak with malice or jealousy of anyone, which had to do with his always seeing the world in the literal and concrete without the spin of his own agenda. Which does raise the question of why it takes brain damage to be kind and honest and true instead of insecure and behind-the-back vindictive as so many of us are. Why is abstract thought so inherently vicious, too often interpreting events so they tout ourselves and condemn others?
But I could look my friends in the eye now, even if I had to admit to myself that Zach didn’t quite grasp the subtleties of office etiquette. He saw the place as something of a commune, and he would sit at partners’ desks and use their computers while they were out at lunch. He was perfectly content but the partners were not. He repeatedly asked one back-office colleague if he could rub his bald spot. It is difficult to deny the irresistibility of bald spots. But this was a new riff on an old habit of his, which he’d started with his brother when he was four and inappropriate bugging was his only effective means of attention. Zach began to fixate on the coworker with the bald spot, or maybe just the bald spot. In any case he discovered his address, walked over to his home one day after work, and peeked in a window. He wasn’t there but his wife was. She became appropriately confused and scared. Who was this kid at her doorstep unannounced? I am not sure how it transpired, but the law firm found out and called me. They were gentle but also concerned about Zach’s odd sleuthing. I promised that I would teach Zach what could be tolerated in an office and what could not.
—Zach, this is a serious office where people do
serious things.
—You can’t ask people to rub their bald spots?
—No, you can’t. You should know that.
—I was just trying to be friendly.
—It’s not a good way to be friendly. How would you like it if somebody asked you to rub your bald spot?
—I wouldn’t mind I guess.
Not the answer I was looking for. I replaced reason with severity.
—You are to stay away. You are not to talk to him. No more going into anybody’s office. And you are never ever to go to the address of anybody.
—What about if Bill Slaughter invites me we’ve known each other for ages he likes me.
—Bill Slaughter is okay as long as he invites you.
—Okay.
—I mean it, Zach. You are lucky you weren’t fired. Do you want to be fired?
—No.
—You want to go back to Pizza Hut and sweep up cigarette butts in the parking lot and scrape shit off plates?
—No.
—Then shape up.
I had been giving Zach such bad-cop lectures since he was a young child. I hated giving them because they scared him, but it was the only way to end his bouts of teasing and bugging and pestering. He did shape up this time, and there were no more phone calls from the firm. In fact, he became popular at Ballard Spahr—a kind of a mascot. His openness became an antidote to the preternatural grimness that surrounds lawyers in their tiny offices. As the attorney Bill Slaughter said, in a comment that revealed as much about his colleagues as it did about Zach, “The great thing about Zach is that he genuinely is happy to see me.”
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