Soon Alec was paying attention to the people around him. By the time he was four, he knew almost as many words as a four-year-old is supposed to know.
“It was as if a light had been turned on inside him,” Amy told me.
She hired graduate students and teachers and trained them to do the program. Some of these young people lasted no more than a day, some no more than a week or two, some no more than a month; some quit, some she fired: she didn’t want anyone working with Alec who didn’t appreciate the value of what they were doing; eventually she refused to keep anyone who didn’t share her fervor for his recovery; and finally she decided to get rid of anyone who didn’t love her son.
Her zeal was contagious, and after a year she managed to assemble a small group of devoted tutors, all of whom had the fierce conviction of converts. They were all convinced, as Amy herself was convinced, that it was just a matter of time and hard work before Alec was cured.
Together they celebrated Alec’s every triumph, every fleeting glimpse of normalcy they saw in his eyes or in something he said or did, and they faced all difficulties with optimism, courage and grit. It filled them with pride to be participating in this ambitious project of the rebirth of this beautiful child. Most of the people Amy hired were artists of one sort or another, and many of them were thinking that this would be the work they would choose for themselves if their careers as painters or dancers or musicians didn’t pan out.
What would Alec be like? Amy wondered. He wouldn’t be perfect. She didn’t want him to be perfect. He could be selfish or vain; he could have a bad temper or maybe be a little sneaky. (Yes! Please let him be sneaky.) He was entitled to have his share of flaws. Like any other parent, she would just have to deal with problems as they came up.
Still, certain as Amy was that recovery was within reach, she sometimes found it more than she could bear to contemplate. It was too big. Too wonderful.
One morning when Amy went to wake Alec up, he didn’t reach out to her, and at breakfast his grip on his spoon was clumsy, and he made the same strange noises that he used to make when he ate. She touched his forehead. She took his temperature. It was normal.
She considered calling off the therapy session for the day, but Alec didn’t seem to be sick and today was Maura Conway’s day—Maura was Amy’s favorite; she was a sweet girl, a graduate student who had responded to the ad Amy had put on craigslist. When Maura arrived, Amy warned her that Alec seemed a little off today.
Maura reminded Amy that Alec had his good days and his bad. Everyone had their good days and their bad.
An hour later when Amy was sitting in the kitchen writing up the week’s schedule of programs, Maura came in. She was so overwrought, she couldn’t speak at first.
“What is it?” Amy asked. But she knew.
“Amy, we lost him,” Maura finally said, tears streaming down her cheeks. “He’s gone. His words are gone. His affect is gone. All he wants to do is lie on his bed and stare at the wall.” Later that day when Amy took Alec to the park, he refused to do anything but sit in the sandbox, watching the sand running through his fingers over and over and over again.
She allowed herself to hope for a while that what had been taken away for no apparent reason would be restored for no apparent reason and that one morning Alec would wake up whole again. But he never did. She started all over, with the earliest and simplest programs. He’s only four and a half, she would tell herself. There was still time.
Maura Conway tutored Alec for a few sessions after that, and then one afternoon after her shift was over, she told Amy she just couldn’t do it anymore. “I’m sorry,” she said. “I’m not strong like you are.”
The panic of those early years sometimes seems so distant to me that every now and then I have trouble recalling exactly what it felt like. There is, however, one incident that has always stayed with me in its entirety.
It was two weeks after our last session with Stan Shapiro and a week before Jake and I decided that we were going to cure Danny with this fantastic new therapy. I was still calling parents across the country day and night. A woman in Chicago told me that jumping up and down on a trampoline helped “organize the brain” of autistic children and I spent two days searching for a trampoline small enough to fit into our apartment. I visited every sports store listed in the Manhattan phone directory while Danny and Jake waited for me in the car. One day I extended my search to the Bronx. It was just Danny and me in our little Honda. I forget why Jake wasn’t with us.
I got stuck going in the wrong direction in rush-hour traffic that was at a standstill for over an hour and a half. This was something that usually would have had me cursing myself out for taking the wrong exit. Danny was asleep in his car seat in the back, and there was nothing for me to do but wait. It was the first time since his diagnosis that I wasn’t spinning around in circles, doing three things at once.
Sitting there trapped in my car, surrounded by gas fumes and honking horns, I couldn’t think of a place in the world I would rather be than stuck on this highway to nowhere. I wished I could stay there forever.
There was a brief period of three or four weeks when Amy visited me in my apartment every Sunday. She had to get away from her family, she said. Amy lived in Battery Park City, which was at least an hour away by subway from Washington Heights; when the A train was running local or when it stopped running altogether, which it often did on weekends, she could end up riding the subway for as long as an hour and a half. But Amy said she enjoyed having nothing to do but sit and wait and watch the lights of the long dark tunnel passing by. I laughed when she told me that and she laughed when I told her about those moments of peace being trapped in my car during my search for a trampoline. Amy didn’t have any trouble understanding why being stuck in traffic, breathing in poison, surrounded by the clangor of outrage, frustration and distress, was my idea of a good time.
If it was lunchtime, I would make Amy scrambled eggs and toast. It was always scrambled eggs and toast since her diet was extremely limited, due to the various medications she took to control her terrible depressions, which were unresponsive to the usual mix of SSRIs and tranquilizers that made life bearable for most of us other mothers.
Fortunately sweets were not off limits for her and I always made sure to bake something when she visited. It made me happy to think that I could do this one small thing for her. Also, baking had always had a calming effect on me—it gave me a wholesome feeling, and I always made too much: cake and pie and cookies. When she arrived, I would invite her to sit at the kitchen table before my assortment of treats. If her visit extended to twilight, I would move us to the living room in time for Amy to see the sun set over the George Washington Bridge.
A terrible loneliness had settled into me, and Amy was the only person who could offer me any relief from it. It was like a chronic illness, this loneliness of mine; there were occasional remissions, but it was always there; I could feel it when I laughed, a couple of times when I opened my mouth to sing, and once, at a party, when I got up to dance. Jake couldn’t understand how I could feel so lonely when he was always within reach—figuratively and literally. Everyone has trouble of one sort or another, he would say to me. Autism just happens to be ours. This is life. But I’m not you, I’m me, I would say in response.
It was comforting for me just to know that Amy was out there, enduring and persevering. I had to know she was there. I had to know that I was not alone. We both had suffered from recurrent depressions all our lives, and this thing with our sons tipped us over the edge many times. Neither of us had managed to get past the initial shock and heartbreak of it.
We saw each other very occasionally over the years. There were our infrequent meetings at the café on the Upper West Side, and that brief period of time when Amy visited me at my apartment every Sunday. We would also sometimes run into each other at an autism conference or meeting. One morning we found oursel
ves in the same elevator on our way to a seminar on sign language. (Amy had told me about the seminar. The idea of trying out a new form of communication with Alec intrigued her.) It was September. Danny was thirteen by now, and Alec was fourteen, and both of our sons were stuck in schools that were all wrong for them because we had been unable to find any viable alternatives. Our depressions had reached new lows. For me, walking down the street felt like I was walking through glue. As for Amy, she spent entire days with her head buried under the covers.
The moment we saw each other in the elevator that morning, we embraced with all our might. Neither of us said a word. I nuzzled my face into Amy’s neck, and she nuzzled her face into mine. We stayed locked in each other’s arms until the elevator reached the eighteenth floor.
I can’t remember exactly when Amy’s visits to me in Washington Heights began or when they ended, but my recollection of what they felt like to me is quite vivid. The friends I said good-bye to after Danny’s diagnosis would call every now and then to see how I was doing, but talking to them was like talking to the air. None of the other mothers were of any consolation to me either. They all seemed to have moved on—back to their lives, back to themselves. Maybe that was because their children were making progress, whereas Danny remained the same.
The last mother I had spoken to was someone I had befriended at a support group meeting years before when I was on the hunt for playmates for Danny. She reported that her son was now attending a regular school and thriving there. I told her I was happy for her, really I was, and then I burst into tears and hung up the phone.
Since Alec’s miraculous recovery when he was four, which was followed by his horrific relapse, he hadn’t undergone any dramatic transformations either, but that never stopped Amy from trying to recapture what had been lost.
Her days and nights were spent thinking up new ways to teach him, and then sitting down with him and teaching him step by patient step by patient step. There were the schedules for the tutors, and the constant back-and-forth dialogues she had to maintain with them, keeping track of Alec’s progress and dealing with meltdowns and crises; the endless search for speech therapists and occupational therapists and behaviorists. And then at least two or three times a year, Amy and Steven would hire a car service to take Alec to Maryland, Connecticut, Pennsylvania and New Jersey for consultations with doctors considered to be the leading authorities on autism in the country.
Then, of course, there was always The District, trying to block her every step of the way.
Amy was like a character out of Greek mythology. She was like Prometheus getting his liver eaten every day or Sisyphus rolling that big rock up the mountain. I once mentioned this to her. I wanted to know why she, with all her mysterious illnesses, her intractable depressions and the haunting memory of Alec’s horrifying regression never complained about anything, and during one of her visits to me in Washington Heights, I asked her why she was such a stoic.
That was when she told me about her collection of blue and yellow pills, a combination of opioids and benzodiazepines she had been squirreling away over the years. She had two little zip-lock bags, one for Alec, and one for herself.
“Amy,” I said. “How serious are you about this?” I didn’t know what to do. Should I report her to wherever one goes to report such things?
Smiling the smile that was always accented with a slight undercurrent of pain, she reassured me that she could never go through with it. She was too much of a coward. Still, it comforted her to know that she had the power to put an end to all this if she chose to. She said that she probably enjoyed thinking about her little murder-suicide kit as much as other people liked fantasizing about having superpowers, like being able to fly like a bird or breathe underwater like a fish.
“If I seem like such a stoic to you, that’s because of the nuns,” she added. “They taught me all about suffering.”
Amy told me that she had spent her childhood and early adolescence under the rule of nuns, who’d trained her to sit perfectly still at her desk with her hands clasped together. She had retained the ability to sit for hours at a time without moving a muscle; her husband said it was like a circus trick.
The nuns told her what God did to children when they were bad, and then there were the pictures of slaughtered innocents and martyred saints everywhere, and Jesus hanging on the cross with nails hammered into his hands and feet, and all those scary stab wounds. Amy said that her Catholic upbringing was one reason she had married a Jew. Her husband couldn’t understand why she never let him buy a Christmas tree. His family always had one.
Amy’s father wanted her to be a doctor like him, and when she was an undergraduate at the University of Nebraska, she had obediently pursued his plan for her. She was a stellar student, completing a rigorous curriculum of science and math in a semester less than the usual allotted time. After she graduated college, she was about to take the MCATs, but right after the monitor had finished handing out the exams, she got out of her chair and left the room without saying a word to anyone and headed straight for the art studio, where she spent the next several months creating a series of paintings that earned her a Fulbright to study art in Paris.
That year Amy spent in France was the happiest of her life. When she returned to America, she had a one-woman show at one of the top galleries in Soho. It was there that she met her husband, Steven Kantor, who bought one of her paintings, a watercolor that in retrospect seemed to eerily predict her future, filled as it was with images of maternal distress, symbolized by broken eggs, a big blotch of cloudy black paint and a woman shot full of jagged holes.
I had never met Steven in person, but I had spoken to him on the phone a couple of times. He always made me feel like an idiot. Amy told me that he had that effect on everyone, including her. This surprised me because I knew how much he adored her. During the one real conversation I ever had with him, I blurted out that I was in awe of Amy. I have never met anyone like her, I told him. She’s a saint. I went on like that for quite some time. He didn’t say anything for several seconds, and then in a voice free of his characteristic irony, he said that it amazed him how much he loved his wife. That he never thought he could be capable of so much love.
“I want to paint so badly that sometimes I just lie in bed and will myself to sleep just so that I can dream about painting,” Amy told me. “That’s the only time I paint. In my dreams.”
Her face lit up with an almost manic ecstasy as she told me about how much she loved painting. Then she spoke about a recurring fantasy of hers to leave everything and move to the Dende Coast in Bahia, where she had heard you could live for less than four hundred dollars a month.
“That’s my dream,” she said. “To go there and paint.”
I was so intent on coming up with a solution for Amy’s problem (it took me forever to realize that this was something she hated), I don’t think it even occurred to me that moving to Bahia meant she would be abandoning her husband and son. I just set my mind to solving the problem the way I always did.
But how to figure out a move to Bahia had me totally stumped so I said the first thing that dawned on me, which was that she should go on Queen for a Day. I told her I bet she would win. “You could win a trip to the destination of your choice,” I continued. “I think that’s an option.” It made me nostalgic in a weird sort of way to remember that perverse game show from the 1950s. I recalled the slightly soiled feeling of watching it on my tiny TV. Queen for a Day was on Saturday morning, and whenever my parents were out of the house when it was on, I would sneak my little TV out of my closet and watch it.
“The destination of my choice!” Amy exclaimed.
We went to my computer and there it was on YouTube, just as we remembered it: the opening parade of leggy dancers dressed up in cardboard boxes advertising the sponsors’ products; the slimy middle-aged MC with his glib responses to those tales of illness, poverty and despa
ir, and those wretched, wretched women. Looking at the announcer now, with his jolly manner and his pencil-thin mustache, the kind favored by movie villains, Amy and I decided that he must have been an alcoholic.
At the show’s end the woman chosen by the applause meter to be Queen for a Day sat on a velvet throne, draped in a velvet cape, wearing a crown and buried under a heaving bouquet of roses as the MC told her about all the treasures her life of endless misery and toil had reaped: silver-plated flatware, toasters, vacuum cleaners, refrigerators, freezers, washers, dryers and an all-expense-paid vacation for two.
It was months before I heard from Amy again. She sounded so happy on the phone. The timbre of her voice had changed; it sounded an octave lower, and where there used to be all those shades of darkness, there was only pure bright light.
“Amy. You sound wonderful!” I exclaimed.
She told me that two weeks ago she had spent a weekend in the country, alone at a little bed-and-breakfast in Upstate New York, with her charcoal pencils and sketchpads. The inn was near a Buddhist monastery, and every morning at five before she got to work, she would sit on the front porch and wait for the parade of monks strolling in peaceful silence down the dirt road in their ritual predawn walk.
Since her return she had been spending every minute painting. She painted when she woke up in the morning; she painted into the night until she was so tired that the paintbrush fell out of her hand. There were days when she was so busy painting, she forgot to eat. I wondered what she was doing with Alec all that time, but I didn’t dare say anything that might disrupt her happiness.
We made arrangements to meet at our café the following Sunday, but when she arrived, instead of being happy, she seemed more miserable than I had ever seen her before.
She said it was impossible. She had been painting in her bedroom, but last week Steven had developed an allergic reaction to the paint fumes and so she had been trying to create a little spot for herself in the living room. But there was so much clutter. Boxes of notebooks containing all the programs she had created for Alec over the years, boxes of papers documenting the various lawsuits they had brought against the The District, boxes of speech therapy reports, occupational therapy reports, physical therapy reports, psychological reports—all of them useless, but she had to hold on to everything until Alec was twenty-one. Who knows, she might have to hold on to this shit forever!
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