“Max gets a real kick out of almost everything,” Susanna said. “He’s full of curiosity. There’s nothing that makes him scared, except very big dogs. He’s well-adjusted and feels very loved. Because he goes to a special school, he’s never been ostracized or teased. Also, Max doesn’t have any physical deformities that make people shy away. That’s helped him a lot. I, frankly, was never all that good-looking. But I think he really is. He’s extremely affectionate. He doesn’t have the muscle control to kiss, but he hugs hard and often. It used to happen all the time that we would sit around with Veronica, and Max would put his arm around her. If we were laughing, he’d look at her, to make sure she was laughing, too. He’s very sweet that way.”
Max went off to a special summer camp for the first time when he was nine, and Susanna phoned the camp every day to check on him. Finally, one of the other campers took the call and offered some friendly advice: “Mrs. Singer, Max is having the time of his life. My parents always go away when I’m at camp; maybe you should consider doing that.” Later, Max attended a camp run by the Hebrew Academy for Special Children. The Singers are secular Jews, but summer camps for special-needs children are often run by religious organizations. “I don’t like religion, but I’ve learned it’s not about me,” Susanna said. “Every year Max goes to that camp, he comes back more mature, and he learns incredible amounts.”
Max is comparatively well socialized and psychologically independent. When he got on the bus to go to the Special Olympics for the first time, he pushed Susanna away. “I was proud of that,” she said. “From the beginning, I wanted this child to feel like he was the greatest thing in the world. I succeeded in that. Sometimes I wish I hadn’t because he can be so arrogant, but I did.” She smiled. “It is not a joyful thing, by any means, to have a special-needs child. But Max, himself, has given us a lot of joy. I had to change my ideas when he was born, about what it means to be successful, for him and for me; his happiness is his success for him, and mine for me. I wish that he would work a little harder at school. I wish he were willing to accomplish more, rather than be satisfied with hanging out. But maybe he would have been that kind of kid anyway. His basic disposition is like mine. Maybe that’s why I like it. Buoyant and even. Basically happy, and willing to adjust.”
Max loves Jim Carrey movies, has a sense of humor, and is a classical-music enthusiast. “My father’s a huge opera buff, and I was named Susanna after The Marriage of Figaro,” Susanna said. “Somebody gave me a CD of Cecilia Bartoli, and I put it on, and Max was entranced.” Susanna has taken Max to see Cecilia Bartoli at the Metropolitan Opera and at Carnegie Hall. They went to see her give an interview at Hunter College. He has gone to her record signings. “He’s a groupie,” Susanna said. “Cecilia Bartoli, who has a dog named Figaro, has, I have to say, been very nice to Max over the years.” She’s signed albums to him; she’s even signed a photograph for him. Susanna herself had an old, mean dog who died when Max was twelve. “Nobody particularly liked him except for me, and Max, who loved him like a brother,” she said. “Max was going off to camp, and I said, ‘Max, I really want a new dog. Is that okay?’ He kept saying, ‘No, no, no, no.’ Finally I said, ‘Max, suppose we name it after Cecilia Bartoli? He said, ‘Yes.’ We got the dog, but it was a boy, so the name is Bartoli, and we call him Bart.”
When I first met the Singers, Max was twenty. “Adolescence is not easy with children like this,” Susanna said. “This little angel that I once had, I don’t have anymore, at least not so much of the time. He loves girls, especially pretty girls, but he’s not necessarily appropriate with them. He has friends in a way, but I wouldn’t say that they’re really bonded together. I know he knows the difference between people like us and himself; he’s dependent on everybody.”
Things had taken a sharp turn for the worse earlier that year, and Peter and Susanna couldn’t understand why. Max’s behavior became so bad that they took him to a neurologist, who put Max on medication that seemed only to make things worse. Eventually, they learned that Veronica had been telling Max that she was leaving after the summer. She hadn’t yet mentioned this to Susanna or Peter. Max had no way to explain what was wrong. “That’s one of the hardest things about having a child who can think, and react, and love, and have the feelings we have, but not be able to tell us. I can’t even imagine not being able to express such incredible fear and sadness. Once we talked it through, he accepted it; by the time he got back from camp, we had a new person and he’s very fond of her. He’s adjusted better than I thought, and better than we have; I cried and cried.”
Veronica’s departure was occasioned by her being tired after twenty years, by Max’s being so large that he was becoming physically difficult to move, by her wish to return to Trinidad, and by her horror at the thought that Max would someday be moved to a group home. “Every time we talked about it, she cried,” Susanna said. “I kept saying, ‘You know this is the best thing for him.’ She knew that. I felt like Max should be out of the house around the time he would have been going to college. I find it sad to see kids in their forties living with aging parents. I’d like to be around while he’s transitioning, to help him, so when something happens to Peter and me, he isn’t suddenly thrown into chaos.”
It can be hard to find a place that can deal with someone who is as physically disabled as Max, but where staff are prepared to talk to him even though he can’t speak and to cope with the depth of his understanding. His parents eventually found a place that seemed right, but it was still under construction when I met them, and they were waiting. Susanna is matter-of-fact about the group home. “It’s not going to feel like a big void when he goes. It doesn’t when he’s in camp. Peter and I get along better when Max is away. We don’t have help on weekends, and if Peter plays golf all day one day, that means I have to be with Max all day. Peter has the same problem if I need to do something. I don’t believe that we’ll have an empty-nest problem. I think that would have been very different with a normal child, so I get sad about not being sad.”
• • •
I have heard mothers of healthy children express a fantasy of the child who would be forever tender and vulnerable and dependent, who would not go through the rebellion of adolescence or the detachment of adulthood. Be careful what you wish for. Disabled children are forever the responsibility of their parents; 85 percent of people with mental retardation live with or under the supervision of their parents, an arrangement that remains common until the parent becomes disabled or dies. This can cause the parents terrible anxiety as they age; it can also give them a permanent sense of purpose. Some parents who begin with gusto become overwhelmed by children who require special attention and, in midlife or later, begin to despair. Others who had originally wanted to give up their children for adoption fall gradually in love with them.
The life expectancy for people with disabilities is increasing; in the 1930s, the average age at death for institutionalized mentally retarded males was about fifteen and for females about twenty-two; by 1980, the figure for males was fifty-eight and for females it was up to sixty, though people without mobility die younger. For the parents—before the routines are learned, the emotional bond is made, and the fantasy of the imagined healthy child has been lamented—the initial stress is often overwhelming. Within a diverse sample of aging parents of developmentally disabled adult children, however, one research group found that nearly two-thirds felt their continuing role as caregivers gave them a sense of purpose, while more than half felt less lonely with their child still at home.
• • •
In 1994, Bill Zirinsky and Ruth Schekter, owners of Crazy Wisdom bookstore in Ann Arbor, Michigan, welcomed their first child, a red-haired boy whom they named Sam. He had a healthy birth, but things fell off over the next few months. Sam had no appetite, poor muscle tone, and wasn’t reaching normal developmental milestones. He couldn’t sit or roll over. At first, his pediatrician thought he might have a virus, but at six months, neurological an
d endocrine testing showed that Sam had a grave disorder. The pediatrician said he had “a hunch” that Sam would have a short life span; that his illness might be degenerative; that he might have demyelination of his nervous system, which can damage sensation, cognition, and movement; and that he would probably be “vegetable-like.” The information was dropped, as Ruth described it, “like a lead balloon.”
Bill and Ruth devoted all of their energy to finding out what was wrong. “For six months, we had thought our son was just developing slowly,” Bill said. “In one weekend we had to deal with learning he was on a completely different life path.” They contacted pediatrician after pediatrician, only to be told that they were mistakenly reaching “well-baby doctors.” Finally, Ruth called one of the pediatricians on her list and described her son to the nurse, who said, “Dr. Weinblatt loves these kind of cases.” They next made their way to the neurologist who would be with them for the long haul, Darryl De Vivo, at Columbia-Presbyterian Hospital. Bill remembered, “When we asked him, ‘Is Sam likely to have a normal life? Is it still possible?’ Dr. De Vivo said gently, ‘It would appear that that won’t be the case.’ I knew that we were dealing with something that was not going to be remedied.”
Bill’s older sister has cerebral palsy, so he felt he had been trained to take care of a disabled child. Ruth said, “It would have been different if he’d been diagnosed at birth. All the bonding in those first six months was critical. I was so committed to him by then. I remember very clearly, in those weeks right after, wondering whether I would ever feel joy again, and wanting to sacrifice my own life for his, knowing I would gladly give up everything if he would be okay. Those were two really profound and totally new feelings for me.”
Sam would never walk, talk, eat, or hear. He received nutrition via a gastric feeding tube (G-tube), was in a wheelchair, and had a seizure disorder. At the age of nearly ten, he weighed only thirty-two pounds. He suffered from constant reflux and pain. His condition was determined to be an undiagnosable, degenerative neurometabolic disorder. “There were relatives who, over the years, might meet or hear about Sam,” Bill said. “Their conception of Sam was, quote, ‘vegetable,’ kind of a 1950s idea. Many more friends and relatives didn’t always get him, but understood that there was more than meets the eye to him. Then there’s the twenty percent of our friends who really spent time with Sam and got to know him, who would look in his eyes, then play a game or read a book with him. Sam was a mirror for how people understood consciousness.” People asked Ruth whether she thought he knew who she was, and she explained that he knew who many people were. Sam loved visual things; he loved being in the water; he loved therapeutic riding. “He puts a smile on his face when he’s riding a horse,” Bill said. “When he is feeling good, it’s really rich.” Among the family photos of Sam are the wedding photos of one of his child-care providers. She had asked Sam to be the ring-bearer in her wedding, and there he was, strapped into his wheelchair and holding the rings on a velvet cushion. “He had a horrible weekend,” Ruth said. “He had a lot of seizures, and we had to really drug him. But when it came time for him to go down the aisle, he totally pulled himself together and looked radiant. I feel he understood that the ceremony was something special.”
Because Sam’s disorder was unknown, the risk of a recurrence could not be predicted. After he turned four, Bill and Ruth decided to try for a second child. Juliana seemed healthy at first, but at about four months, the not-eating-well pattern started. In her fifth month, Ruth and Bill brought her to Dr. Weinblatt. When I first met the family, Juliana was almost seven, and her disorder was somewhat milder than Sam’s. She was severely hearing-impaired, not deaf. She could walk, though not far and with great difficulty. Instead of having a G-tube surgically inserted through the abdomen into the stomach, she received nourishment through a less invasive nasal-gastric tube, which Ruth had learned to insert whenever Juliana pulled it out. Juliana did not have a seizure disorder and her health seemed less tentative than Sam’s. Like Sam, she was tiny: though she was seven when I met her, she looked perhaps two. “She is a faerie sprite,” Bill said, “a delightful and funny little girl from another planet. Like Sam, she is very sensitive and has continued to develop emotionally, even while her cognitive development is limited. Their emotional response to many things is age-appropriate: love, jealousy, excitement, attachment, sadness, compassion, desire, hope.”
Ruth had more of a sense that the children weren’t going to live for long than Bill did. Though Juliana seemed stable, Sam’s illness was clearly progressive, and his life became steadily more difficult. In an average week, he would be good two days; three days he would have some hours when his stomach hurt, or he had mild seizures, or he would need to throw up; and two days he’d be disconsolate and have to be held much of the day. “I really wanted people to understand that our lives weren’t utterly miserable,” Ruth said. “Sam was beautiful to me and continued to be beautiful to me. I can’t fault somebody for giving up a child like Sam or Juliana; it’s a very tall order. But I never wanted to.” They had all spent summers on Long Island with Bill’s parents in a house by the sea, and as Sam’s condition deteriorated, they contacted a local pediatrician. The pediatrician mentioned that while it’s easy to let a child go by refusing life support in New York, it’s extremely difficult to disconnect a child once he has been connected. They were furious at her. “We felt violated by it,” Bill said. “She didn’t understand that we thought Sam wanted to be here in this world.” Bill and Ruth went for a long walk, and Ruth said that she thought Sam would tell them what to do. “By anybody else’s standards, he was already living an incredibly impaired life,” Ruth said, “but we had spent nine years with him and knew he could have pleasure, feel love, enjoy his environment, get a kick out of going to school. If that was still true, then I felt it was unfair to let him go.”
A few years earlier, Bill and Ruth had decided to adopt a child, and Sam’s escalating illness coincided with the notification that a daughter had been found for them. One of them had to go to Guatemala when the adoption was finalized. They kept putting it off, but Sam had been in the hospital for thirty-five days and their new daughter was waiting. So Bill and Ruth agreed that Bill would wait at the hospital while Ruth went to Guatemala. “It was really hard to go,” Ruth said. “But he waited. He died the day after I returned.”
When I visited Bill and Ruth two years after Sam had died, they were on Long Island again. Age two, Leela, their adopted daughter, was already bigger than Juliana, who at seven weighed twenty-two pounds. Pre-adoption, social workers had expressed concern that a normal child would struggle in their household, but that did not appear to be the case. “The way we love Leela is just different,” Ruth said. “I’m constantly juggling those two things, and feeling like Juliana is getting short shrift because Leela is such a magnet for people’s attention: she’s verbal, she’s interactive, she’s loads of fun. But then, am I paying too much attention to Juliana? There’s no easy path.” Bill said, “Many people pay a lot of attention to Leela. Juliana watches. She’s constantly measuring and evaluating every bit of it. It’s painful to us, sometimes, to watch her watching as people pay so much attention to her sister.”
Unlike Sam, Juliana was not confined to a wheelchair, and her diminutive size seemed congruous with her cognitive deficits; what would have been odd in a girl who looked like a seven-year-old was less odd in a girl who appeared to be not yet two. Aside from the nasal feeding tube, she didn’t look unusual. Bill and Ruth waited until she was out of earshot to say that they had no idea how long she would live. I asked whether she could understand speech. Bill recounted reading aloud his notes on Sam’s death when the family visited a neurologist. Juliana suddenly began to cry. “Juliana’s response wasn’t necessarily receptive language, but it’s receptive something,” Bill said. “It’s receptivity to her parents’ feelings or the vibrational field. We’re both sensitive to not talking in front of her about things that might upset her, just
the way you wouldn’t with a kid who is more obviously cognitively normal. Just in case.”
Juliana died two years after my day in Long Island, at about the same age as Sam. Her condition had deteriorated, and before she died, she lost the ability to walk, then most of the rest of her motor control, and was eventually unable to sit up. “Yet one senses that Juliana is not entirely discontented about her path,” Bill wrote in an e-mail. “She is frustrated at times, and she cries sometimes when she feels sorry for herself. Yet there has descended upon her a certain wisdom and meditative resignation, which is very becoming. Meanwhile, she does suffer physically, and that is painful for her and us.” When I praised the quality of care he was giving to her, he wrote, “I think most people I know, if a child had been given to them who was profoundly disabled, would have risen to the occasion. I need to believe that. It’s how I construct a good world.”
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