Parents of Down’s-Syndrome Child Shake Off Disappointment and Act : Retardation: When Eric was born, the Hoefts saw no services to help him. They took charge and now publish a magazine for others in need.
Soon after Eric was born with Down’s syndrome, a social worker floated into Debra Hoeft’s hospital room like a life raft.
Here is someone who can help me help my son, the new mother thought. Here is someone who understands. She brightened until the social worker asked: “So, Mrs. Hoeft, are you going to keep him?”
The life raft deflated, no land in sight.
“You hope to have perfect kids. You expect it. So I was devastated, of course,” Debra said recently after laying her son down to nap. “But this was my child. I wasn’t going to abandon him just because he wasn’t perfect.”
Nearly a year later, Eric remains her much-loved child. It is Debra and her husband, Peter, who have changed. They’ve taken charge and floated a life raft of their own--a magazine to help the parents of Down’s syndrome children.
When Eric was born, Debra was totally unprepared. Although 80% of some 5,000 Down’s syndrome babies are born each year to women under 35, she’d believed herself exempt from risk.
The Hoefts had no reason to suspect this child would run any slower, or dream any smaller, than their other three rambunctious sons. The pregnancy was normal, the mother 34 years old and healthy, the delivery smooth.
But Eric was born with an extra chromosome, a single blip on the genetic map that would reshape his family’s lives. Debra sensed something amiss the first time she held her son. His tongue appeared oversized, his eyes mildly slanted. “But what did I know about it?” she said.
Debra and Peter had no idea of how much they could teach this child, or how much he would teach them. They’d never really thought about retardation at all, except to silently count their blessings.
Thank God ours are healthy, they’d think. Thank God ours are “normal.”
“Then God dealt us a different hand,” said Peter, a stocky firefighter who wept like a child when he learned this son would never be like the other kids. “I felt sorry for him because I knew things would never be easy.”
For Debra, the sight of healthy, pink babies in the maternity ward was nearly unbearable. And when a nurse sent her home with the standard package of complimentary magazines for new parents, it seemed a bitter joke.
“All I could think was: ‘Why are they giving me these? These magazines have nothing to do with my new baby,’ ” Debra recalled. “Nobody came to explain what Down’s syndrome meant. Nobody told me how to care for this child, what kind of programs he would need, what kinds of programs were out there.”
There were no signs pointing the way to help. It was up to the Hoefts to grope their way from isolation to a close-knit web of support--a process begun in a somewhat desperate lunge.
“Not long after Eric was born, I saw a girl--a girl with Down’s syndrome--standing on a street corner with her mother,” Debra recalled. “And I just grabbed that mother’s sleeve, held on and began crying. She was the first person I’d met who knew what I was going through.”
By the time her eyes were dry, Debra had found an invaluable friend and adviser in JoAnn Vindigni. Finally, that much-needed life raft had arrived.
Soon, the Hoefts had researched their son’s condition, joined local support groups, contacted national associations and tracked down whatever literature they could find--but Debra wanted more. So she set about starting “Down Syndrome Today,” a quarterly magazine designed as a lively and practical compendium for parents of children with special needs.
Based at the Hoefts’ ranch-style home in this community about two hours outside of New York City, the magazine is a grass-roots operation funded largely with credit card advances the couple can ill-afford.
Fortunately, a spontaneous network of writers, artists and general boosters like the Vindignis and their 12-year-old daughter quickly rallied around the fledgling magazine.
There was Jim down at the copy shop in nearby Holtsville. It turns out that his sister has Down’s syndrome and he’d be happy to do the typesetting gratis. Soon a bookstore chain executive whose daughter has Down’s syndrome volunteered to help with distribution. Then Chris Burke, the star of TV’s “Life Goes On,” agreed to a cover story for the inaugural issue.
Peter and Debra aren’t crusaders. All he ever wanted was a city job and a steady paycheck. All she craved was a couple of kids.
But Eric changed all that. He drew the Hoefts into fellowship with some 250,000 families touched by Down’s syndrome. He brought them new friends and a commitment to helping people who otherwise would feel alone.
Although thousands upon thousands of people with disabilities function in the mainstream today, retardation still is mysterious and a little frightening. Myths are stubborn; stereotypes linger.
“We’re not very sensitive to these parents,” said Ruth Nemzoff of the Center for Research on Women at Wellesley College in Massachusetts.
“Back in the ‘50s and ‘60s, people would basically be told, ‘Here’s your kid. Send him to an institution,’ ” Nemzoff said. “That is no longer considered acceptable, but unfortunately it still happens.”
Do you offer congratulations or condolences to the parents of a newborn with Down’s syndrome? Do you speak in hushed tones, forgo the traditional gushing and gifts? “Absolutely not!” Debra said. “Mourning is for death.”
Nevertheless, Nemzoff said, parents of newborns with Down’s syndrome often go through stages of mourning “the death of the fantasy of a perfect child.” They are alternately shocked, disbelieving, angry at the fates.
During those first days, parents often are disappointed to find doctors and hospital staffs ill-equipped to advise them about special services and financial aid for children with disabilities.
Many feel overwhelmed and respond by withdrawing in shame or, sometimes, anger. “It’s an understandable reaction. But it doesn’t have to be that way. There is support out there,” said Diane Barounis of the National Down Syndrome Congress in Park Ridge, Ill.
“Parents just have to get educated,” Debra said. “If you don’t fight for your child, no one will. You have to learn the ins and outs, how to get around the roadblocks.”
Together, the Hoefts have learned how to help Eric practice the speech, physical and occupational techniques prescribed by the cavalcade of therapists who visit their home each week. His three brothers, all under 11 years old, are tireless playmates and protectors who provide nonstop stimulation.
“It’s a big thing for parents when a child takes a first step. For us, it’s if he sits up or reaches for something,” Peter said without bitterness.
At barely 20 pounds, Eric is a veteran of exercises designed to help him acquire muscle tone and motor skills other babies come by naturally. Such “early intervention” is key, experts say, to ensuring children with Down’s syndrome the fullest possible development.
Most have mild to moderate mental retardation, which means they may learn slowly--but they do most definitely learn. Many attend school, hold jobs and enjoy close, even romantic, relationships.
“As he grows up, if he wants to play baseball, he’ll play baseball. If he wants to join Cub Scouts, he can do that,” said Peter, 35. “But he’s also got to learn there will be certain things he cannot do.”
Eric never will head a corporation or command an army. Like all but the rarest males with Down’s syndrome, he is surely sterile and so will not father children. He’ll never drive a car or make first string.
“Let’s face it,” Peter said. “He’ll always be different. He’ll never be a cop or a fireman. But he can be a whole lot of other things. He can be happy.”