Raising A Child With A
by Leslie Garisto Pfaff
Printed in "American Baby" March 2002 Issue
From the moment you hear the news, your family's life will change forever. Here's how to deal with the realities and discover the rewards.
Like most expectant parents, Sandy and John Wimsatt of Encinitas, California, shared a dream of the family life they'd soon be living. Avid fans of the outdoors, they had baby-makes-three visions of T-ball games, mountain biking, and long hikes through the countryside. But when their son, Michael, was 15 months old and started taking his first steps, the Wimsatts noticed with increasing alarm that his legs seemed to be collapsing under him. They took Michael to his pediatrician, who ran a battery of tests and diagnosed him with Spinal Muscular Atrophy (SMA), a disease of the spinal cord. "There I was dreaming of taking my son to soccer and going on these great family ski vacations," says Sandy, "and suddenly, instead of sports equipment, I was thinking about wheelchairs." At that moment, she says, "I felt as if my life had just shattered."
For parents first learning of a child's disability, shattered expectations are a near-universal reaction, accompanied by a wide variety of emotions, including anger, disbelief, shock, guilt, and sorrow. Essentially, says Margaret Silberman, PhD, a psychologist in Aurora, Illinois, who counsels families with special-needs children, "these parents are grieving, mourning the loss of the idealized child." No one who's been through it would deny that raising a child with special needs is a life-altering experience. But as the Wimsatts and so many other parents have learned, with support, planning, and access to the right resources, it can also be life-affirming.
In the first days and even months after the diagnosis, parents may feel overwhelmed. Even simple things like giving the news to family and friends can seem daunting, especially for new parents who were dreaming of stringing up balloons and sending out engraved birth announcements. But there's no reason you shouldn't do those very things, says Audrey Lewis, executive director of the support group Friends of SMA: "It's okay to be proud and to celebrate even if your child's not 'perfect.'" Sandra McElwee of Rancho Santa Margarita, California, whose son, Sean, was diagnosed prenatally with Down Syndrome, used his birth announcement to explain the disability to friends and family; the announcement also confirmed that his birth was a joyful event and invited phone calls and visits. "Congratulate us," it read. "We have a baby; we're a family now." If you're not comfortable with a printed message but don't have the time or stamina to call everyone yourself, consider designating a close friend or family member as spokesperson, says Lewis.
Caring for a baby is demanding under any circumstances, but caring for one with special needs is often exponentially difficult and demands inspired solutions. Kathryn McKellar and her husband, Rick Barto, of Cupertino, California, had to contend with the normal new-baby stresses of sleep deprivation, diaper-changing, and doctor visits. But because their daughter Jackie was seriously developmentally delayed (she was finally diagnosed with mild mental retardation at age 5), they faced additional challenges. Seeing other children-including cousins-who were progressing normally was particularly hard, says McKellar. And day-to-day life was draining. "We had to teach Jackie how to sit, how to crawl," she says. Because Jackie had difficulty processing sensory information, anything new or unusual was frightening and overwhelming for her. "Just going to the doctor was a nightmare," says McKellar. To ease the demands on their time, McKellar and her husband agreed that she should take a leave of absence from her job as a business manager. In fact, many parents find it necessary to reconfigure their lives-cutting back on work, selling secondary businesses, hiring full or part-time help--especially in their child's first few years.
For parents like Martha and Alexander Bootzin of San Francisco, attending to medical needs can be a round-the-clock job. Their son Everett, was a "micropreemie." Born at 25 weeks and weighing only 1 1/2 pounds, he spent three months in the intensive care unit. When he finally went home at 4 months, pulmonary, eye, and digestive problems necessitated constant monitoring. "He was on oxygen and many, many medications," says his mother. "His intestine was leaking, and he had doctor's appointments nearly every day for months." The most difficult aspect of her son's multiple disabilities, she says, was "our immersion in the medical world"--at a time when she had expected to be worrying about nothing more than getting her baby to sleep through the night. The solution for the Bootzin family was ample support--in their case, from their church, where Alexander was music director. "We had twelve people we called 'cuddlers'--nurses, pediatricians, and super-qualified grandmothers--who'd rotate and come over to take care of Everett. It was just phenomenal," Martha says.
Lean on Many
In fact, setting up a support system to help with day-to-day duties and unanticipated crises, and to give emotional support, is crucial for parents of a special-needs child. Symme Trachtenberg, director of community education at the Children's Hospital of Philadelphia, advises parents to start close to home, as the Bootzins did, with family members, friends, or clergy. However, in a culture that puts a premium on self-sufficiency, this isn't always as easy as it sounds, "especially for couples who've worked hard to become independent," Trachtenberg says. But if you need help, ask for it, she stresses,; don't expect others to intuit your needs. McKellar wrote to family members right after Jackie was diagnosed with Developmental problems, both to offer information and to ask for their support. Her sister Debra in particular has been an invaluable source of aid, moving to California from Wisconsin to be closer to the family. "Aunt Dub", as Jackie calls her, "has been willing to learn along with us," says McKellar, and can now step in whenever the family needs help, whether that means taking Jackie out for pizza or calming and comforting her. While most friends and family can't be expected to offer this kind of extensive help, they'll almost certainly be willing to babysit, pitch in around the house, lend a sympathetic ear, or help with other siblings when time is tight--as long as you make your needs known.
To be the best possible advocate for your child, you need to learn as much as you can about your child's particular disability--not just medical details but information on resources, government programs, and educational and recreational opportunities. Barbara Cheadle, founder of the National Organization of Parents of Blind Children, advises parents to "blink back the tears, reach out, and get information. If you live in denial, you can't help your child."
This is especially true in the years from birth to age 3, when children can benefit most from early-intervention programs, like those mandated by the Americans with Disabilities Act of 1990. These programs are tailored to your child's individual needs and offer physical, psychological, occupational, speech, and other therapies, provided either in your home or in a center. (For information, contact your state department of mental health or local board of education.) For the McElwee's son, Sean, an infant stimulation program for babies with Down Syndrome-in which parents are taught to administer physical therapy to help children raise their head, sit up, and achieve a host of other milestones--was a huge benefit. "It sped my son's development incredibly", says his mother. "He sat up on time and walked at 22 months"--well before she expected.
Other excellent sources of information and assistance are national support groups or parent-to-parent networks, some of which focus on a specific disease or disability. Linda Rowley of Mineral Point, Wisconsin, whose son< Mitchell, is paralyzed from the neck down and a result of Spina Bifida, started her own Internet network, Spina Bifida Parents, six years ago, partly in an effort to find other families whose children were as severely affected as her own. "A lot of the other parents I'd met talked about bracing and walking," she says, "but walking wasn't even an option for my son, so it was hard to listen to that." Finally speaking to people who knew what she was going through was "enormously comforting".
Many organizations hold annual conventions, which offer an extraordinary opportunity to meet experts and other parents face-to-face. For Sandy Taboda of Baton Rouge, Louisiana, whose son Michael lost his sight at 2 1/2, a visit to a National Federation for the Blind convention was a turning point in her life and his. When Michael's blindness was first diagnosed, Taboda says, "the only thing I could think of was the stereotype of the blind man on the corner selling pencils--it was devastating." The convention not only taught her about the resources available to her son, but it also completely blasted her misconceptions. "I saw hundreds of blind individuals who were successfully living their lives," she says. "It was such a boost to see what my son might become."
Keeping Your Balance
Daily care and finding the right services for your child can easily become the entire focus of your family life, and that can put a strain on your marriage. For any married couple, it's important to communicate and make time for each other, but it's especially critical in special-needs families, where stress can whittle away at relationships. Ever since their son, Mikey, was born with Down Syndrome, Michel Paul and her husband Thomas, had been focused intently on his needs. Then, not long ago, "we realized we were drifting apart," Michel says. "We saw that we had to start taking care of ourselves, too." The Pauls found a sitter they trusted and made going out as a couple part of their routine. Their rule for those nights out: "not to worry about our son and not to talk about the hospital."
Even more critical than spending time alone together is talking openly about your emotions. "Parents often have particular trouble discussing 'difficult' feelings--being angry with their disabled child, for instance," says Stanley Klein, PhD, author of You Will Dream New Dreams; Inspiring Personal Stories by Parents of Children with Disabilities (Kensington Books, 2001). But it's important to remember, he says, that it's normal to feel angry and frustrated, and sharing these feelings is crucial to help you deal with them and to cement your marital bond.
Like spouses, siblings in special-needs families are often unduly stressed, either from the responsibility of caring for the disabled child or because they feel ignored. "Any child is going to miss the attention when there's a new baby in the family," says Mary McHugh, author of Special Siblings: Growing Up with Someone with a Disability (Hyperion, 1999), "But if the baby has a disability, there will be even less time for older siblings." Although it may be tough to arrange, it's key to spend exclusive time with each child, says Trachtenberg, and to make sure you don't overburden siblings with caretaking responsibilities. If things get rough, look into programs where kids get a chance to blow off steam with others in similar circumstances, such as the Sibling Support Project, a Seattle-based organization that promotes workshops around the country (www.seattlechildrens.org/sibsupp). There is also an upside for brothers and sisters: Trachtenberg's research on siblings of children with disabilities showed that they demonstrated "increased maturity, a sense of responsibility, a tolerance for being different, and enhanced self-confidence and independence."
In the end, the greatest asset for special-needs families is a positive attitude. Raising a child with a disability offers a host of rewards that may not be evident in the early days, says Trachtenbert: a new sense of personal competence for parents, the thrill of watching your child make strides, and increased appreciation of family and life in general. Of course, it takes time and experience to get there, along with a concerted effort to find as normal a life as possible for your child and the entire family. Sandy Wimsatt, who dreamed of sharing her love of sports and the outdoors with her son, says success in dealing with a child's disability comes from adjusting your goals to reflect life's new realities. She and her husband, for instance, were able to find a wheelchair soccer program for Michael, and they've taken him to adaptive ski school, where he's learned to ski using specialized equipment. They've even managed to go on family biking expeditions with the help of a heavy-duty bicycle seat. "And so we have our dream," says Wimsatt. "It's just a different dream now."
Talk About It
Once considered unmentionable, disabilities are increasingly visible in our society--in films, TV dramas and sitcoms, and in cartoons such as Nickelodeon's Pelswick. At home, it's even more critical to treat your child's disability in an open, honest manner.
As they get older, children will inevitably have question. "Am I 'different' from other kids?" "Will I be able to do the things my brothers and sisters do?", but "they may not be able to articulate them", says Barbara Cheadle, founder of the National Organization of Parents of Blind Children. Left unaddressed, questions can blossom into fears or misunderstandings. Cheadle cites the example of blind children who simply believed they would "grow out of it" because no one told them otherwise.
Siblings too benefit from straight talk, says author Mary McHugh, who grew up with a brother with Cerebral Palsy. "Parents are often so busy running around trying to find the right doctor, the right help, that they forget to sit down and explain things to the other children in the family," she says. Tommy Slivinski of Landing, New Jersey, was 4 when his 6-month-old sister Francesca, was diagnosed with a seizure disorder. But it wasn't until several years later that he began to manifest anxieties about it. "He was crying every day," says his mother, Carmela. "And there were times that he was afraid of having seizures himself." In fact, a fear of "catching" the disability, or guilt at having somehow caused it, are common reactions.
According to McHugh, communication--giving the disability its proper name and explaining what that means--can head off anxieties. Sandy Taboda, who has always discussed her son Michael's blindness honestly, says that for him and his younger brother, Robert, the disability is just one of Michael's many characteristics: "He has brown hair, he's eight years old, he's blind."