by Loriann Hoff Oberlin
After much anticipation, the birth of a child brings joy unmatched by most other experiences. For parents who learn that their little miracle may face a more daunting development that joy becomes mixed with unexpected emotions. When my first son arrived six weeks early, I was thrilled that he never saw a day of the neonatal intensive care unit (NICU). Five years later, when Alex arrived three months premature as a result of pre-eclampsia (again) and an emergency cesarean section, I was beside myself with fear. Fortunately, he grew stronger with eight weeks of NICU care, coming home with bronchopulmonary dysplasia that later turned into asthma, and developmental delays that weren’t diagnosed as mild cerebral palsy until he was seven. The asthma vanished between ages eight and ten (as doctors predicted it might), but gross motor, fine motor, and neurological symptoms that contribute to some learning disabilities linger.
Like other parents, I understand the uncertainty that comes with raising a special-needs child, how home visits and intervention is helpful but at the same time feels intrusive, and how your schedule must fit in countless medical appointments as well as prescribed activities. Much of this occurred during my six years as a single mother. I used to feel a certain tension myself when my son’s breathing seemed off, but we camped out in the ER (always at night) with activity books, crayons, snacks for my oldest, a thermos of hot tea, and stuffed animals. All told, we’ve been pretty fortunate. You can never quite anticipate new needs and what they will require of you, but you learn as you go, summon strength and support, and like Fred Rogers once told me in an interview, most parents do the very best job they can.
Adjusting to a New Normal
“It can be very lonely when you have a child with disabilities,” says Nancy, the mother of “miracle daughters” who lives outside Washington, D.C. Her oldest was born after a seven-year struggle with infertility, her youngest adopted from Mainland China. Even as a former special education teacher with many resources at her disposal, Nancy admits that it took three years to figure out what was going on with her youngest who has severe posttraumatic stress disorder and reactive attachment disorder. “We’re concentrating on just getting through one night’s sleep without having our daughter awake in a state of anxiety,” she says. “No one really knows when this began, but we believe we’re seeing a direct result of early trauma in infancy coupled with the constant pain of acid reflux and multiple caregivers.”
Ann, of Fairfax Station, Virginia, says that the only problems daughter Katie had at birth was Strabismus (crossed eyes) and a heart murmur. But immediately after her first immunization against measles, mumps and rubella at four months, Katie began having developmental problems. “We finally got her evaluated at the Kennedy Krieger Institute in Baltimore, and that was pretty much the definitive diagnosis of autism,” Ann says. Katie was 3 1/2 years old. Ann calls the preservative Thimerisol (mercury) used in that shot the “possible culprit” of Katie’s autism. Many parents who don’t know exactly what caused their child’s disability are often anxious to understand more, given literature, and sent on their way. Too often the answers don’t easily appear.
In Pittsburgh, Joey, now 15, was also diagnosed with autism right around his third birthday. His mother Eileen helps to raise money for autism research and frequently tells of her family’s struggle. Joey didn’t start to talk until he was four and as a teenager he uses roughly 100 words. He can’t carry on a conversation (intellectually he’s two), and understands only simple things. While he likes adults, Joey can’t relate to other children. Their biggest challenge: Watching Joey’s out-of-control, manic behaviors where he’ll obsessively run and slam himself into a wall over and over, jump on and off furniture or kitchen counters….or worse yet, onto your lap while you’re driving the car. Joey would bolt out of doors or windows or laugh hysterically setting everyone on edge. His mom says it was hard having strangers yell at you because he’s grabbed a drink from their table at McDonald’s. Feeling like they were losing a war, they made the heartbreaking decision to find residential placement for Joey when he was 8 1/2, for they could no longer cope with the overwhelming stress.
The Effect on the Family
“I feel like I lost a lot of my 30s to autism,” says Eileen. “In some ways though, I was very fortunate…our marriage was never hurt by this.” She credits the closeness she and her husband have as pulling them through. “We never blamed each other, but just accepted that these things happen and that it was no one’s fault.” Still, she admits that they each internalized the diagnosis differently. Eileen plunged herself into trying to “cure” Joey pursuing everything that might work, including speech and occupational therapy, special schools, applied behavioral therapy, but when substantial progress remained elusive, it forced her to accept the situation much earlier than she may have without all the interventions. Her husband gave up hope, early on, remained fairly crushed by the news, then moved on with life, but more through distance from the situation than dealing with it. Realizing that her husband also loves their son, Eileen admits, “He doesn’t really know how to hang out with him, how to interact, and doesn’t seem to want to spend the time to figure out what to do.”
Larry B. Silver, M.D. has a practice in Rockville, Maryland and counsels many families. He’s written about the grief process many parents go through when they hear of learning disabilities in The Misunderstood Child, but like any lifetime disability, nothing truly describes the impact of such news. Parents do react differently. “Often the working parent (father) may have guilt, and so he escapes through work, longer hours, business trips because if denial is working well, you’re not aware you’re doing it,” Silver says. Being at home is too painful for some, who may feel the best they can do is to have a successful career with the needed income and benefits.
Bob Field, Ph.D. in San Ramon, California has worked with hundreds of families also learning to cope. “How individuals deal with the loss can be characterized by the traditional stages of denial, anger, depression/self-abuse, and acceptance,” Field says. “As adults who are hopefully prioritizing their children’s needs ahead of their own, parents often become too invested in the child for their own ego fulfillment. I have seen many more mothers experiencing great loss when realizing their child’s disability.” He says some women assume that during prenatal development, something must have happened.
Field raises an important point that there is no magical fix, and that unfortunately many target parents with claims for procedures like brain scans, biofeedback, and exercise and diet products for which there is little support among traditional professionals. They prey on desperate parents who hope that their child can be completely normal, and this blinds their objective judgment, he says, as they spend thousands of dollars and much energy unnecessarily trying things that only delay what is necessary — consistent support and assistance.
What Helps – What Doesn’t
“I truly feel that lack of support has a major impact on a family dealing with a special needs child,” says Patty in Pennsylvania, whose family made life more stressful dealing with a daughter having cerebral palsy and other developmental delays. When others, often out of ignorance, suggest potential causes of a disability or how it might have been prevented, this only intensifies feelings of guilt and leaves overwhelming despair.
Often people shy away from supporting a family because they don’t know what to say or do. “People do less and less as the years go by,” says Eileen. She wishes other parents would extend extra sensitivity instead of reciting a long list of their child’s accomplishments. Other kinds acts: Simply validating “this must be difficult,” asking “how can I help,” or providing tangible support such as an occasional home-cooked meal, play dates or transportation for siblings (often overlooked) means more than you can understand.
“The doctor told me to make Jimmy as comfortable as possible for he’d probably be no more than a vegetable,” says Darlene, whose son was born with cerebral palsy and a seizure disorder. “This was the last thing said to me before we took him home.” It was an extremely difficult time that brought about a marital separation, but somehow she and Jimmy, now 15, have grown from it. Parent support groups reduce the isolation, provide answers to questions that may have stumped or confused the family, and foster friendships not only for the parents involved but also for the children. “Jimmy is the happiest child you will ever meet — a sweet blessing.” Darlene reports that he’s not a “vegetable” at all, that he sees, hears, and while he has his share of health problems they’ve gotten easier, too. “Jimmy has made me a better person. The most important thing I can do as his mother is to simply love him and appreciate the things he can do and not dwell on the things that he cannot.”
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Loriann Hoff Oberlin is a Maryland-based freelance writer. She’s the author of Surviving Separation & Divorce, Writing for Quick Cash as well as The Angry Child and Overcoming Passive Aggression, co-written with Dr. Tim Murphy. Reach her through her websitewww.loriannoberlin.com.