A Matter of Dignity

by Andrew Potok

  One-third of her students have mental illness in their family and are dealing with overwhelming grief and anger. “If you don't do anything with it, it's going to eat you up alive,” she says. “Working in the field is a rechanneling of the anger and the grief. The compassion these students find is comforting to them. Also, kindness generates kindness, plus the fact that the status one gets from altruism is not to be sneezed at.”

  A colleague in her field said her reason for being involved was that she's painfully shy, thus was able to identify easily with the shyness and loneliness of the mentally ill. “I suppose that anyone who goes into social work is also motivated by social injustice,” Mona says. “Every once in a while I get a student who says she has a calling, but I don't have a notion where that kind ofthing comes from.”

  What Mona teaches has very direct consequences on her son's life. Her students provide David and others like him with assisted living situations in their communities. These professionals work with them in their own environments, doing laundry with them, shopping, going out for coffee, showing them how to live, rather than talking about their conditions. “That's what I've been teaching my students to do for the past twenty years,” she says. “Because David's health care team is so good now, I'm free to be Mom, free to make cakes, to nag him about his fingernails, as well as to make music together and laugh.”

  It wasn't always like this. Mona tells me about the time of David's first schizophrenia diagnosis some twenty-five years ago, when the psychologist told her that it would be best if she didn't expect him to go to school or work. “It was very bad advice,” she says. “He went to pieces when I took all the expectations off. He knew then that the jig was up. But I stopped the frantic trying to make him normal and gave in to the horror of the diagnosis.

  “I have known people who were relieved when a label was put on their behavior or illness. I argue this point with my students when they talk about the stigma of labeling. It can be a stigma but for some there is relief in knowing that a name exists for what is going on. As for me, I didn't know what schizophrenia was so I went to the library and started reading. Now I know that it's a neurobiological brain disorder, which is some progress from the days when they talked about schizo-phrenogenic mothers and double-bind communication, but really not much is known about it, schizophrenia being a generic term for many different illnesses, like cancer is.”

  But before the first diagnosis, there was a devastating mis-diagnosis. “My son was very likable, sweet and charming,” she says, “so the psychologist who prescribed what we as a family should do misread him totally. As a matter of fact, he decided that there couldn't be anything that wrong, that all David needed was a kind of cold shower that would help him grow up. Well, that was a time of family bashing, and this idiot psychologist told him he should break off all relationships with his family. Imagine a kid seventeen years old being told that. And imagine us listening and kicking David out of the house, allowing him to live by himself at the YMCA.” She has a very hard time recalling this horror. “Mother bashing was in its heyday and I accepted for a while that it was all my fault. But the separation really broke him. Before that he had spirit. He was feisty. Even now I have to tell him to say what he wants to say, not what he thinks I want to hear. He still asks me if he can have a glass of water in his own house! He's still terrified of offending anyone.

  “He had all the symptoms and it was a great sin on their part for not seeing the schizophrenia earlier. I don't forgive them their ignorance. There was no excuse for it. It's like mis-diagnosing a cancer. How dare they be in the field and not keep up on the research? How do I feel about that person? If I met him on the street, I'd kill him.

  “It's different now than it used to be,” she continues. “The emphasis of David's care is to make sure he gets to his guitar and pottery lessons. Nowadays they rightly want to concentrate on his strengths, not the interior voices he still hears. I have to lecture myself that he's forty-four and I have to let go. It's hard to let go. My well children are now as competent and mature as I am, so when I get sick, they want to help me, to tell me how they think I should take care of myself. It's easy to let go of them because they're my peers. David will never reach that point.

  “I began to change a little about all this some ten years ago when David was put into a foster home. Until then he'd been in hospitals, group homes, on the street, in a hundred horrible crises. When we found the foster home and foster mother, I could again be a mother and not a case manager. The burden was off me, and David got a lot better in foster care. All in all, social workers have improved, letting families be families.

  “Even though his foster mom had said to me that he could do more than I'd thought he could, there's a natural tendency with a fragile kid to overprotect. So it's important to try to find out how much he can do and to learn to back off. It's also important to know your own limitations, to know what you can't make better, what you can't change no matter what you do.”

  I tell her what I know about some people within the disability community despising the idea of aborting a fetus solely for reasons of disability, and ask her what she would have done had she known David's future diagnosis while she was pregnant.

  “I would have had an abortion and wouldn't have given it a second thought,” she answers without skipping a beat. “The pain I have over him far outweighs the pleasure.” She tells me about first meeting Ann Deveson, an author and mother of a schizophrenic son. “It was fifteen years ago,” she says, “so the thinking about psychiatric illness was somewhat different.” In the first hour of getting to know each other, the two women admitted that their kids suffered so much, the situation and treatments were so hopeless, that they hoped their sons would die. “Even though Ann and I wished our sons dead,” Mona says, “we were both doing everything in our power to keep them alive and to make their lives okay.

  “Two years later, Ann called me from Australia to tell me that her son Jonathan had died of a drug overdose as he was trying to admit himself to a hospital. In light of our earlier conversation, I asked how she felt about this, expecting her to say that she was glad it was over. I actually felt envious of her. Well, she bowled me over with words I didn't expect. ‘I'd do anything to have Jonathan back,’ she said.”

  Recalling this, Mona stops, then begins to cry. With some difficulty, she continues. “The situation has improved in the last few years in terms of David's getting better care, and he's having some kind of a life so I guess I don't feel that way anymore. Still, if anything happened to my well children I don't know if I could bear it, yet I'm pretty sure I wouldn't feel that way if David died. There'd be a lot of sadness as well as closure. Our culture doesn't give us much permission to acknowledge the fact that you may love somebody and also wish them dead, wish that they would not have to continue living their unbelievably difficult lives. Many parents of the mentally ill are shocked by my attitude, but there are also many who nod and know exactly what I'm talking about. But I always recall Ann's words, and I have renewed respect for how we don't know how we're going to react to certain things until we're facing them.

  “Look,” she says, “it's so muddy and complex that I am absolutely thrilled with the dentist who gives so much loving care in trying to save some of David's teeth. I go in two directions at once: I wish he were dead and I love it that his teeth are being saved.”

  Even today, when David's life is somewhat better, his expression always shows intense anxiety and depression. He has a routine now. He does nothing in the mornings, goes to a club for the mentally ill for lunch, then goes to work for an hour cleaning a restaurant oven, then wanders around town and goes to bed early. “I don't think he gets any pleasure from life, but I don't know him that well anymore,” Mona says.

  David has more than a glimmer of his previous, healthy self. He watches his siblings and some of the people with whom he grew up with what seems to be great agony, a very pained nostalgia. “He's very much alone,” Mona says. “He has
n't had a single friend since eighth grade. When he was quite young, he read Plato, and now, aside from cigarettes and orange soda, which are his two great loves, he still goes into bookstores to buy yet another copy of Plato, which he can no longer read. Who knows what compels him to keep buying it? When he has to go to the hospital, he packs his pajamas, his toothbrush and his Plato. Even though he's functionally retarded now, he's trying to hang on to an old dream of himself as an intellectual.”

  When I tell Mona of Adrienne Asch's strong feelings about disability being no worse, no more difficult, than anything else, Mona says that to her, mental illness and mental retardation are entirely another sphere of disability, one that doesn't compare with physical disability. “It's our minds, our brains, that make us distinctly different,” she says. “With blindness or paralysis, people may be taken aback at first encounter, but then they relax and relate. At those times I can forget the disability, but I can't forget the mind's dysfunction. It's unpredictable. It makes us less human.”

  Mona tells me that her most dramatic moment as a grandparent came when she and her two granddaughters, ages five and eight, were in the park and a woman came by in a wheelchair pulled by a dog. A retarded man with a dog showed up and his dog attacked her dog. The woman in the wheelchair panicked, told him to get his dog back, and he screamed at her, “I got as much fucking right as you do!” Then he looked panicked and said how sorry he was that he'd lost control.

  “My grandchildren wanted me to say that everything was fine,” Mona says, “but I started to cry. They were puzzled. I told them that some people in this world have it so much harder than we do, that they can't think or walk straight, that they have a lot of problems and we have to be especially nice to people like that. My granddaughter picked a flower, handed it to the retarded man. I was proud of myself for passing on the mantle. I loved her, I loved myself, and I shook hands with the retarded man, to whom I said, ‘Yes, you lost control but you got it back again, and good for you.’ As Margaret Mead said in one of her books, it's the grandmother's role to hand down the family culture. I think about that a lot. For generations, my family has been very involved in music. Handing down feelings about mental illness is as important to me as handing down a feel for music.”

  She recalls that when she asked David to do something in the past, she would always end the request with “if you feel up to it, dear.” At Mona's retirement party, for the first time she put it in other terms: “If you would make music with the rest of our family, that would be an incredible gift to me.” And he did. Happily.

  One of the more important problems for a parent to solve is how to provide ongoing stability, including oversight of financial security, for the future of a mentally ill child, how to assure a continuing management of needs such as housing and health care. Who can ever love them as the parents have? Who can know the basic personality that lies behind the illness? And how can one depend on maintaining the former quality of service? These are the primary worries of many if not most parents of seriously mentally ill children.

  Case managers come and go, staff in supervised housing may be poorly trained and horribly underpaid and government funding might easily be cut. For everyone who must deal with these questions, there is enormous frustration with the available social services, a lack of housing options and the insensitivity of professionals to parental needs.

  Anne Larkin, the mother of an autistic son, works very hard at finding such solutions not just for herself but for all parents of disabled children, whatever the family's finances. One of the most important programs she and her husband helped create is called PALS, Personal Advocacy of Lifetime Support. Hoping to lighten their other children's future care-taking burdens, as well as looking ahead to their own diminished abilities in old age, the Larkins modeled their efforts after an existing Canadian program that develops networks of volunteers, supervised by a paid facilitator, to serve each disabled child. The volunteers take over different facets of the person's day-to-day existence, such as home life, work life, social life and medical needs. The aim of the program is to encompass not only autism but all kinds of disabilities.

  “There is no doubt in my mind that when we get our first network off the ground, the program will soar. The need is enormous,” Anne says. “The problems are so overwhelming that it's taking us a lot longer than we thought to get it all in full swing. It happened much faster in Canada,” she says, “where they've already initiated over a thousand networks. We will get there too, but slowly.

  “When Tom and I got married,” Anne says, “we simply wanted to have a family, certainly never anticipating that we'd have a child with a disability. But after John was born, I knew that if these were the cards that were dealt, we would have to move forward from there.” Her voice is Boston tough, a gravelly, no-nonsense voice. “Even though we knew nothing about autism,” Anne says, “we knew something was very wrong. John wasn't going through the normal developmental stages but we couldn't get the problem diagnosed until he was three years old. From the beginning, he was way beyond hyperactive. He never napped. He hated cuddling, became rigid every time we tried to hug and kiss him. You can't imagine how hard that is. My twins were a piece of cake compared with this. I could have raised quads.”

  Seeing to John Larkin's education as he was growing up called for constant vigilance, having to push schools and others to make unheard-of allowances, to take risks, to try harder. When John reached adolescence, Anne and her husband Tom finally put him in a residential program. Because he was home only weekends and vacations, it gave them a break, gave their twins, five years younger than John, some time of their own, and gave John a structure he desperately needed and, they realized, couldn't get at home. “Parents tend to become overly protective,” Anne says, “making their needy kids very dependent.”

  The Larkins, who seem to have left no stone unturned, have investigated, imported or otherwise examined many different programs here and abroad. They have found that what separates most of the foreign programs from the American ones is that the former promote a very disciplined approach to learning, well balanced in academics, performance, physical education, music and art. In these programs, every aspect of a child's behavior and learning is carefully guided, leaving little to chance or accident. Even though in the best of them, expectations are very high and the children do very well with the structure, the rigorous exercise, the control, the sameness every day from morning till night, when they leave, unless a lot of care has been taken to integrate them into the community as well, they tend to fall apart. “As parents,” Anne says, “we have to struggle to keep informed about things like this, actually about absolutely everything that is known about autism.”

  The severity of autism runs the spectrum from being indistinguishable from a learning disability to manifestations of extreme aggression toward one's self and others. It can be defined as a combination of problems with communication, social interaction and sensory intake. People are no longer buying into thinking that a majority of kids with autism are retarded, rather that their behaviors and developmental delays resemble retardation because of serious flaws in their processing mechanisms. It's now recognized that their cognitive levels are unknown and can change daily.

  Since the time of John's birth thirty-five years ago, the most drastic and effective change in the field of autism has been very early intervention. At three years old kids are now bombarded with all kinds of stimulation, with language therapy, communication skills, social and sensory integration and behavioral programs.

  As other people with autism might have difficulty processing sight or touch, John Larkin is hypersensitive to sound, reacting to it as if there were a sensory overload, a cross-wiring in the brain. Information floods his senses, overwhelming them, sounding like static. “As a child, John liked to spin and twirl things,” says Anne. “He was very echolalic, repeating phrases in an effort to understand something one step at a time but unable to grasp the concept. Now he's per-severative, stu
ck on a memory, repeating it over and over, wanting others to repeat it too, and if they don't he gets extremely agitated. He loves music but wants to listen to the same phrase over and over. Certain words are particularly pleasant to him. He would say, ‘Mama, say beautiful,’ then keep telling me what a wonderful word ‘beautiful’ is.

  “John is very lovable,” Anne continues, “though that isn't easy for most people to appreciate. He's very good-looking, almost six feet tall, with thick black hair, big brown eyes and an olive complexion. He's always in motion. His anxiety level and his perseveration get in the way of anyone's knowing who he really is. He has very few inhibitions and is certainly the loudest and most active man in his group home.

  “Though I wouldn't have missed having John for anything,” she says, “I tell prospective parents who are debating whether or not to keep a pregnancy of a disabled infant that they should be as informed as humanly possible and make their own decisions. No one knows what kind of a life their child or that family will have. Some families can't deal with a mentally disabled child and they know up front that they can't. I don't think anyone else—not a doctor, not a genetic counselor—should make that decision for them. Having lived through all the pain as well as the joys, all the issues John brought with him, I would never tell another parent to do the same thing we did. It takes a lot of patience, love, adjustment and a lot of sacrifices. Some families fall apart. When I hear people complaining that another family doesn't treat their autistic kid right or they never come to meetings, I get angry because no one should make such judgments. If you don't have a network of people who'll support you, you can't do it alone. But those of us who have the energy have to confront the bureaucracies, develop political relationships, keep plugging away at all that. One needs to be political, resourceful, assertive and very aggressive.”

  Anne and her group of parents are constantly in the faces of their governor and state representatives, a presence at all relevant legislative meetings. “I would guess that Massachusetts is a more responsive state than most,” she says, “and we feed them our concerns, making them aware of our issues. I just returned from a legislative breakfast at the state house, where we discussed the wages for direct-care staff workers. We will not give up until these important workers are making a decent wage. I don't nag, but they all know I'm not going away until I get what is needed and what our kids and their providers deserve. Most of the parents have become very politically active, realizing that it's important for the future of their kids regarding housing, trusts, wills, their financial and social security.”