Challenging families

Statistics show a higher divorce rate among couples with special-needs children. Can that change?

disabled child 298.88 (photo credit: Courtesy photo)
disabled child 298.88
(photo credit: Courtesy photo)
Nineteen years ago, Miriam (most names in this article have been changed) delivered her second son in a major Jerusalem hospital. As with her previous birth five years earlier, the labor was quick but intense and the baby was born relatively easily. The attending physician wore a serious face, and Miriam remembers feeling confused because no one said, "Mazal tov." "Can I have my baby?" Miriam asked, reaching to the nurse holding the freshly swathed bundle. There was silence and whispering and finally she asked, "What's wrong? What happened?" "I can't be certain," answered the doctor, "but I think your baby has Down's syndrome." Without skipping a beat she repeated, "Can I have my baby?" A moment later, her husband walked out of the delivery room and disappeared for four days. The newborn was whisked away to the nursery and Miriam was attended to. She still had neither seen nor held her new son. Less than an hour later a social worker entered the room and asked, bluntly, "Are you going to take him home?" Miriam took her baby home and rallied all of the available love and support she could, which was offered by her moshav community and doting, elderly parents. She named her son Ariel and raised him the only way she knew how: with high expectations, strong moral codes and unconditional love. Soon after, the couple divorced and she raised her boys alone. Her ex-husband remarried but remains aloof to his oldest son as well. That son is today a student of psychology at a major Israeli university. Ariel was educationally mainstreamed until second grade and thrived in his special education program. Today he reads at a third-grade level and is warm and affable. He learns in the afternoons with local yeshiva students and has a yellow belt in karate. Miriam has a suitor who is reportedly quite close to the boys and has formed a close attachment to Ariel. For many families, the decision to raise a special child at home is often fraught with agony. Life is consumed by a daily struggle to accomplish that which for others is routine. It takes time, energy and spirit to raise a healthy child, but the special-needs child impacts these realities in ways not easily imagined by others. Developmental disabilities affect far more than the person born with limitations; anyone who lives with, cares for or cares about a disabled person is keenly aware of the pronounced social and emotional attitudes of the surrounding society. "Professional literature speaks of eight stages of grief and grieving which includes denial, grief and acceptance," says Goldie Marans, director of training at Shalva (The Association of Mentally and Physically Challenged Children in Israel). "As with illness, some people adjust faster, some get stuck, some skip to acceptance. Many of the evident coping skills are based on family strength, community networking and access to information. "I've seen couples who were not unified suddenly pull together. I've seen finger pointing and blame. Suddenly, in-laws are named as culprits. I've seen fathers who are totally uninvolved in the lives of their normal children continue the pattern by not paying attention to the new, challenged arrival. And yet, there are some dads who come to the program weekly, finding great comfort in meeting other men during open sessions." Family therapist Rona Michelson concurs. "A special-needs child brings more closeness to a family that is well-settled, and only creates rifts in families who were already experiencing some problems. I see this over and over." Couples that do not resolve conflicts well are easily overwhelmed, and less able to cope without earnest intervention. And while tales of baby abandonment are often exaggerated, stories of unions that have fallen apart after the birth of a disabled child are easy to find. Many of the partnerships may have been fragile to begin with, and the introduction of this unexpected element is often the excuse needed to claim that the "marriage is dead." In most of the cases this writer came across, it was the man who walked out, often sabotaging his relationships with the other children as well. In one case, however, a man insisted that the new baby was coming home with them despite his wife's despondency. She languished for months, part of the time in a mental-health facility, but later resumed parenting in a secure setting with full spousal support. A family without comparable support will suffer burnout. Some studies indicate that parents in this situation are liable to abuse their children and the rates of divorce are higher. On October 22, 2006, The New York Times published an article titled "Living with love, chaos and Haley." The story outlined one family's experience living with a special-needs adolescent and the routine struggles to provide appropriate care. The profound emotional effect on each family member was greatly detailed, including a frank portrait of a sibling who considered suicide. Some more alarming quotes included: "Her illness dominates every moment, every relationship, every decision." "Excruciating worries permeate her parent's sleep; unanswerable questions end in frustrated hopes." "The illness, and sometimes the treatment, can strain marriage, jobs, finances. Parents must monitor medications, navigate therapy sessions, arrange special school services... Parents can feel guilt, anger, helplessness. Siblings can feel neglected, resentful or pressure to be problem-free themselves." Evidence abounds that the non-challenged siblings who do not receive counseling or meet with peers in support groups function poorly, and don't reach their potential due to the pressure at home. The challenged child in this kind of family is more likely to be institutionalized, because his family simply cannot cope with the boundless financial, emotional and physical demands on them. FOR Irit, whose third daughter has Angelman syndrome, a genetic disorder that causes developmental delay and neurological problems, her relationship with her older children is a major hurdle. At the time of our interview, the struggle was reaching an apparent climax, with Irit reporting at the outset that she was leaving her second husband. Irit came to Israel from Sweden in 1981 as a kibbutz volunteer. When she left the kibbutz and began living in Haifa, she realized that she wanted to stay in the country but must seriously consider the question of conversion, and eventually realized that she could only live here as a Jew and finished the conversion process in 1984. Almost immediately, she met her police-officer husband, and together they had three children. Fifteen years ago her third daughter was born. She appeared normal at birth but soon after developed all of the classic symptoms: feeding problems, jerky movements, a protruding tongue and seizures. At one point, Shiri had developed a vocabulary of seven words. Today they are all gone. While Irit wouldn't speak badly about her ex-husband, it became evident that Shiri was the ultimate reason he left. Irit was caring for her daughter 24 hours a day and always on edge. She rejected calls for institutionalization, even though Shiri's fragile health includes spinal deformity, weak lungs and epilepsy, making frequent hospital visits and crisis watches the norm. Today the father has a good relationship will all of his children and is involved with Shiri's care when called upon to do so. Irit remarried a much older man who was a father to several children, and while she and Yehuda are very devoted to one another, things aren't good. Irit's older children won't visit her in her new home, and Yehuda's adult daughter lives with them, but doesn't speak with Irit or relate to Shiri at all. In the interest of providing balance to this picture, it must be mentioned that therapist Michelson feels that cases like Irit's are not the norm. "I found that the other siblings did very well," says Michelson, who was the coordinator of clinical services of an adult day treatment program in New York, and today is the supervisor for family therapists in training in the master's program at Neveh Yerushalayim. "By and large they grew to become compassionate, caring people who often chose professions in care-giving when they got older. And although the literature seems to point to a high divorce rate among parents caring for special-needs children, that was not my experience. After accepting the diagnosis and getting a realistic idea of the challenges the child faces, most of the parents I met worked together as a team and their marriages were solid." Irit and Yehuda have been to family counseling and marital counseling but, while he wishes he could help Irit more, he says, "I'm too old to change. I don't have the strength." When I sat down to conduct the interview, Irit held Yehuda's hand and told me, "I'm moving out next month. This house has too many stairs, both inside and out and I can't give to Yehuda as much as I want. We will try to remain married, but there are too many things destroying our lives in this context." Indeed, in addition to the emotional fortitude required to face each new day with such a severely challenged child, the physical stamina that is needed just to keep her clean and dressed is almost Herculean. Shiri has to be washed, dressed and out the door by 7:15 a.m. for her special education program. Immediately after school each day she attends the after school activity center at Shalva in Jerusalem's Har Nof neighborhood. If not for this added "time off" each day, Irit would be unable to work, because special ed school is over in the early afternoon. Shiri awakened during the late night interview and all of the quiet dynamics were immediately erased. She is the size of an average woman and can only walk with assistance, lest she topple over and injure herself. She sat on her mother's lap for much of the time. At one point Shiri teetered over to the refrigerator and began emptying the contents onto the floor. She then crawled to the antique, upright piano and banged on the keys. Yehuda sat calmly at the table, but it was clear that this was a home dominated by Shiri's presence and difficult choices were being made. "I hope she will live with me until she is 21. We pray that we'll find a good place. Maybe Beit Uri near Afula." Still sitting on her lap, Shiri nuzzled her face into her mother's neck and smiled. SPIRITUALITY AND prayer were mentioned time and again in discussions which led to this article. Belonging to a faith-based community is a clear factor for many couples who are resolved to find peace with their unexpected circumstances. Expressions of caring, love, inclusion and acceptance from a community are vital components which can empower many families to advocate on behalf of their challenged child. For countless couples, many of these elements are found through religious observance. When approached for this story, Bernie and Iva Kastner requested that their real names be used. They felt that in time, people would look at their situation, need guidance and hopefully, role models. They sensed that eventually they'd be called upon to offer advice based upon their experience. When Bernie and Iva Kastner's fourth child Zev Chaim was born 17 years ago, everything seemed normal. But he was small at six months, and the couple received a diagnosis of "failure to thrive." Iva supplemented her nursing with formula and visited a well-known endocrinologist with the baby, but still couldn't get a clear verdict. Halfway through a course of antibiotics for an ear infection, Zev Chaim got a "flat affect" and stopped smiling, giggling and crawling. After a battery of grueling tests, he was finally diagnosed as having Leigh's disease, a rare inherited neurometablolic disorder which is characterized by degeneration of the central nervous system. At two years old, Zev Chaim was often lethargic, and cried and suffered from seizures. The Kastners were told in June of that year that by December, he'd be dead and his death would not be kind. Although Bernie had just begun a new job as a hospital psychologist, together he and Iva took a week off to "mourn." They mourned dreams which would never come to be for Zev Chaim. They mourned for their own expectations and the fulfillment they'd never see. They planned on how to tell their other children and elderly, devoted parents. When they shared with a dear friend their joint decision not to tell anyone out of their immediate circle, she reacted with great indignation: "Not tell? You MUST tell! It is an obligation! This isn't only about you. Everyone needs to pray, because that is what we we're supposed to do. Zev Chaim is counting on them!" Suddenly their thinking changed and they switched the dial from despair to optimism - cautious optimism. But now they expected him to live and rallied prayers from wherever and whomever they could. Spirituality became an umbrella and, even though he was still very sick, Zev Chaim was alive. By the time he was two, he started reacting to the world around him, gaining weight and smiling. "He even pulled himself up for a short time and, for a very brief period, used a walker," reminisced Bernie. Both parents spoke with nostalgia about this period. It was clear to both of them that they also had other children and needed to maintain balance in their home. A simple cold for Zev Chaim can often be a harbinger for more terrible things. When he was four he had the flu, and reverted back to infancy. Today he has a vocabulary of about 20 words and suffers from crippling migraine headaches. Iva told me that she used to cry a lot but she had given herself the "emuna [faith] pep talk" so many times that it is now ingrained. When asked to state a mini-version of the pep-talk she said with a smile, "God knows what each of us can and must do, what we're capable of and what the end of the story is. My job is to hope for the best and prepare for the worst. Crying is a luxury." When asked if he thought Zev Chaim is happy, Bernie answered without hesitancy, "He shines. He doesn't have much, but a hug can make his heart soar. He'll never marry or have children or cure anyone's illness. But he has friends. So many friends." When approached about the more serious question of what is the glue that holds them together, they grew solemn and I could see them choosing the words carefully. "The neshamas [souls] of disabled people are special. If Zev Chaim could talk, we wouldn't be able to stand it. What he'd have to say would be too holy," mused Bernie. "Oh, we laugh a lot. Without laughter and a sense of humor we'd be goners. When one of us is down, the other one picks up the tempo," Iva said. "Last night at the dinner table, Bernie blew his nose really loud and I shouted 'tekia' the way you do after they blow the shofer on Rosh Hashana. Zev Chaim roared. He thought that this was a riot." Together they hold a firm belief that Zev Chaim chose them; that all neshamot choose their parents. "This makes the responsibility of raising him much bigger than we originally thought," they said. "He thought we could deal with this and so we want to meet his expectations. We wouldn't want to let him down." What if Zev Chaim hadn't been born? "I don't go there too often," said Bernie. "We don't mention it. People mean well and want to spend time with us and ask, why can't you be there at 7:30? Why weren't you at minyan again? Many times we don't go out even if we have the rare chance because we simply are exhausted - both physically and mentally. We just prefer to veg-out at home." The Kastners are also preparing for the future, when Bernie's siblings may have to take over caring for him. "We've spoken with the other children about this, and are putting money away so taking care of their brother won't be a greater burden than necessary." "His school, Beit Sefer Ilanot, is only for students up to the age of 21. After that, there is no school or program in Jerusalem with a framework that will suit his particular needs. The parent-body arranged a mini-conference last year which was attended by a Knesset member and several municipal authorities. They hope to raise awareness on this issue. Hopefully, something will be in place by the time he ages-out of the school." Goldie Marans of Shalva holds firmly to the belief that one's religiosity has nothing to do with whether or not he'll be more or less involved with his challenged child. "There are dads who learn 18 hours a day in kollel and some who spend those same 18 hours working in hi-tech, and they both make it their business to partner with their wives in learning what is best for their child. And then there are other fathers who are unemployed with many free hours, and they still can't find the time to learn about making life better for their child and family. Religion has nothing to do with it." Ultimately, it is not the event that determines whether something is traumatic to someone, but the individual's reaction. Remember Ariel, who might have been left in the hospital? His mom read all the standard Down's syndrome publications and memorized projected milestone moments, which told her what her delayed child would and wouldn't do. Every time he accomplished a new skill, Miriam laughed and said, "He forgot to read the book!"