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DISABILITIES

By Daniel J. Vance

 

  Maureen Gustafson is the public relations director for an 80-physician clinic and mother of a 13-year-old girl with Down syndrome.

  "It was a normal pregnancy and delivery," she said recently over the telephone, "but right away I noticed the nurse acting strange. Her eyes were moving rapidly. Then everyone left. I stayed in the room two hours before a doctor came in to ask if I knew what Down syndrome was."

  Nearly all Down syndrome births are caused by a defective cell division creating an embryo with three No. 21 chromosomes. An infant with it may have an upward eye slant and a flat, smaller nose; a single, deep crease across the middle of the palm; low muscle tone; and a different ear shape. It is the most frequently noted cause of mental retardation. About 350,000 Americans of all ages have Down syndrome.

  Gustafson continued, "People were amazing. I received so many kind cards and letters. Emily probably had more gifts than the average baby. The hardest people to tell were our parents. I had trouble saying the word 'retarded.' So I stood in front of the mirror and practiced so I could do it without crying. That helped."

  She said it also helped in an unusual way having training as an actress, still a part-time avocation of hers. "I appeared to the outside world as if I was okay. By me acting like that, people were more likely to ask about us. I was approachable. Had I been self-absorbed I don't think I'd have received as much support. I would have been harder to reach."

  In 1995 Gustafson won the YWCA Woman of Distinction Award in her city. She said the hardest part in accepting the award was speaking about daughter Emily. "I didn't want to have happen to me what happens to many women," she said. "They start getting so emotional while speaking you can't understand what they're saying. So I practiced over and over until I could speak without being so emotional."

  So what was her speech on?

  "I was talking about success," she said. "As a child of the '80s, success for me was being beautiful, powerful and rich. Then in my quest of being 'Wonder Woman' I had a baby. I quickly realized I didn't have just any baby; I had an angel. And Emily has made me a better person."

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