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Parents Find the Joys Are Special, Too : Down's Syndrome: Not Without a Silver Lining : 2 A week after Carrie's birth, Becky Raabe contacted PROUD. In several long telephone conversations, the president of the group convinced her that Carrie's potential would largely be defined by her family's expectations. "A whole new world opened up," Raabe said.

November 17, 1985|BOB SIPCHEN

Sandra Hembd of Cypress and Becky Raabe of Orange have learned a lot about the myriad "syndromes" that can affect children.

On a recent Wednesday afternoon, for instance, Hembd's 16-year-old son, Mike, hovered over his twin brother, Mark, punching buttons on a calculator and offering Mark help on his math homework. Sandra Hembd gave a resigned sigh. Some "mothering" by one sibling is a common aspect of "twin syndrome" and should be expected, she said.

On Thursday afternoon, Raabe's 25-month-old daughter, Carrie, danced some nutty toddler steps in the family's living room and shrieked with unbridled exuberance. Becky Raabe took the high-decibel enthusiasm in stride. After all, she explained, noise is an unavoidable part of the syndrome known as "the terrible twos."

And Friday night, the Hembds and the Raabes got together with a couple dozen other families at Endeavor High School in Fullerton for an ice-cream social and a discussion of another all-too-common syndrome that Mark and Mike and Carrie and many of the other children in the crowded classroom have in common--Down's syndrome.

A few of the newer parents gathered for this monthly meeting of the Orange County support group PROUD (Parents Regional Outreach for Understanding Down's) were fighting back tears. But most had already come to realize a truth to which Raabe and Hembd testified: Raising any child presents both problems and incomparable rewards, and kids with Down's syndrome, despite the mental and physical handicaps of the disability, are much more similar to "normal" children than they are different.

According to the March of Dimes, Down's syndrome is the most common genetic birth defect. Birth records tend to be haphazard on such matters, but depending on the authority cited, the defect occurs in about one out of every 600 to 1,100 births in the United States.

As soon as hospitals, friends or health-care agencies refer new parents to PROUD, the nonprofit organization sends the family a red folder bulging with books and pamphlets. In normal babies, the literature explains, the mother's egg contributes 23 chromosomes and the father's sperm also provides 23 chromosomes, the cellular components that carry a new human's heredity. In 95% of Down's syndrome cases, however, the embryo receives an extra 21st chromosome from either the mother or the father, or possibly during the first cell division following fertilization. (The remaining cases occur because of other genetic "accidents" in the 21st pair of chromosomes.)

Researchers have yet to discover why this abnormality at the 21st-chromosome pair occurs. They do know that a mother's chances of having a child with Down's syndrome increase abruptly at age 35, moving from less than 1% around age 30 to about 3% by age 45, according to the information supplied by PROUD. Yet, 80% of babies with Down's syndrome are born to mothers under 35.

The PROUD package also includes expert discussion and comparison graphics that confirm a new parent's worst fears--the child will be below average in physical and intellectual development throughout his or her life. But fact sheets and flow charts don't show the whole picture, families at the meeting said.

In fact, a father repeated to the PROUD gathering a comment his 21-year-old son made about his 2 1/2-year-old sister, Sydney, who has Down's. "I can't think of anything more perfect than Sydney," the young man had said. "If I have a child, I hope he has Down's syndrome."

"I know that sounds strange," the man at the meeting continued, "but I think some of you understand."

May Seem Peculiar

For the parents and grandparents and siblings burping and nursing newborn babies, still reeling from the discovery that a child with Down's was now a part of the family, that comment may have seemed peculiar, if not perverse. But other families said they understood.

"Carrie is our 10th grandchild, but from the moment we saw her in the hospital she's been very special to us," said Lowell Knutson, Becky Raabe's father, as his granddaughter offered him a drink of punch from a plastic cup. "Our first reaction was, 'How is our Becky going to do this?' That's your first concern, for your own children. But after a while it's like there's really nothing different with Carrie. She's a part of the family."

Similarly, Becky Raabe's concern was for her child. "I knew I could be a good mother, but I wondered if I could be the mom she needed me to be," she said.

A week after Carrie's birth, Becky Raabe contacted PROUD. In several long telephone conversations, the president of the group convinced her that Carrie's potential would largely be defined by her family's expectations, Raabe explained from her living room the day before the meeting. "A whole new world opened up," she said.

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