Today's Down syndrome children growing up in a friendlier world Acceptance, education, therapy help them fit in

October 24, 1997|By Douglas M. Birch | Douglas M. Birch,SUN STAFF

As a child with Down syndrome, 11-month-old Caroline Bodley faces a lot more obstacles than most children do. Even learning to walk and sit up correctly will be a challenge. And the toddler, who will turn 1 year old next week, may find that some people won't accept her for who she is.

As scary as this may seem, Caroline was born into a world growing far friendlier toward people with her disability. And her chances of growing up to lead a happy and reasonably independent life are better than might be expected.

Testimony by the mother of a 3-year-old Down syndrome boy in a Howard County medical malpractice lawsuit that ended this week suggested that such children always face a bleak future of dependency and ostracism. Physicians and some other parents of Down syndrome children say she painted an exaggerated and unduly pessimistic picture.

"These kids need to be given as much encouragement as possible and not be put away somewhere and put on the shelf for the rest of their lives," said Martin Conover, a 45-year-old mortgage lender from Catonsville whose 8-year-old daughter, Alexis, has Down syndrome. "These are very loving children; they're very special children."

"My hope is that people won't read about this trial and say, 'Oh my God, a child with Down syndrome,' " said Towson lawyer Mary Bodley, Caroline's mother. "The danger of stereotyping is you miss the potential. Forty years ago, nobody would have envisioned the progress that children with Down syndrome are making."

The hundreds of thousands of children with this genetic condition face daunting medical and intellectual problems. They range from borderline to profoundly retarded, with IQs between about 30 and 80. (Normal is 100.) They have characteristic physical features that set them apart and are predisposed to heart problems and hearing loss.

But with advances in therapy and education for disabled children, and a society that seems more willing to accept them, Down syndrome children are finding it easier to fit in.

'Bright' prognosis

"I think the prognosis is certainly bright compared with what it used to be," said Dr. Michael Bender, vice president of education at the Kennedy Krieger Institute in Baltimore. "Many of them learn a lot more than they used to. They are certainly excellent workers in the job force. People have accepted them as part of regular society."

Once, Down syndrome children were automatically regarded as

so profoundly retarded that "they weren't able to do much," Bender said. "Fortunately, that's not true. These kids manage to do a great deal."

Bender runs the Kennedy Krieger School in East Baltimore, which serves about 200 children with physical and mental disabilities. About a decade ago, he said, the school's students included many children with Down syndrome.

"But all those kids now are in public school," he said. "I think the future for most of those kids is pretty good. They have a lot more potential than people ever gave them credit for."

Dr. George T. Capone, a developmental pediatrician who runs Kennedy Krieger Institute's Down syndrome clinic, said, "Prospects for these kids, especially in terms of social opportunities, are better than they ever were."

And therapies are more sophisticated.

Mary Bodley is helping Caroline learn cognitive skills through a program of play designed to teach her cause and effect. It includes simple things such as playing peek-a-boo, getting her to pretend to feed others and encouraging her to play with a crumpled piece of paper.

"She loves playing with paper," Bodley said. "Just something that simple. She loves the crinkly sound."

Customized instruction

Once in school, the children receive specialized help. They are given customized instruction in such areas as speech, language and motor skills that matches the disabilities Down syndrome children share.

Capone said the children's parents are encouraged to teach their children not to develop what he calls "maladaptive patterns of movement" -- ways of crawling, sitting, standing and walking resulting from the weak muscles characteristic of the syndrome.

"It's something that needs to be gently corrected and monitored," he said.

Some new treatments haven't worked, Capone said. Megavitamin therapy, injecting freeze-dried animal cells into patients and intensive therapy programs called "motor patterning" are fads with little, if any, proven benefit, he said.

Other innovations show some promise. Kennedy Krieger is testing piracetam, a drug originally intended for Alzheimer's disease patients, that might help Down syndrome children think more clearly and efficiently.

Even if piracetam isn't successful, Capone said, it could represent the next phase of Down syndrome treatments.

'Glass ceiling'

"Specialized speech and language, specialized physical therapy, are only going to be able to take us so far," he said. "And I think we're very quickly going to approach something of a glass ceiling. The next breakthrough that has to happen is in the biological realm."

Once scientists better understand the mechanisms underlying the mental and physical problems caused by Down syndrome, Capone said, they can begin to design new drugs and therapies for it.

"That will happen in the lifetime of children born today," he said.

Still, the biggest problem faced by Down syndrome children isn't necessarily their physical handicaps, their advocates say. Sometimes it's the lingering bias against them.

"Most of these are very wonderful little kids," Capone said. "There's no denying that they have special needs, cognitively, educationally and physically. But this is something that we as a society have to come to grips with, and sooner rather than later."

Pub Date: 10/24/97

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