“If you sit around a doctor's dining room and everybody's talking about their over-achieving child, and you're simply trying to get your child to walk and talk, it is very difficult,” said Dr. Nicholas, whose 16-year-old son, Tom, has cerebellar ataxia.
Tom—the first physically challenged student to be fully integrated into the Hermosa Beach (Calif.) School District—wears braces on his feet and uses a walker, crutches, or a wheelchair for mobility. “He can dress himself, but he will never be able to put his braces on by himself,” said Dr. Nicholas, a pediatrician who directs The Children's Clinic, Serving Children and Their Families, a system of six not-for-profit community health centers in Long Beach, Calif. “He's always going to need some assistance.”
Dr. Nicholas also knows that the caregiver role consumes many parents. “I think trying to achieve a balance is truly a great challenge,” she said. “I want Tom to reach his greatest potential. If that means I have to make personal sacrifices, I will do that. But it's very difficult to find that balance, because it can become all-consuming.”
Dr. Nam Nguyen can identify with that notion. His 4-year-old daughter, Uyen, was diagnosed with autism when she was 18 months old. “Any activity we do at home is tailored or geared to part of therapy,” said Dr. Nguyen, chief of the division of pediatric surgery at the University of California, Irvine. “We put signs and toys in every room. Everywhere we go, every setting is a therapy for her. It's very much a constant thing.”
He credits his wife, Lan Nguyen, M.D., with providing the bulk of Uyen's therapy. She left her full-time anesthesiology practice to care for Uyen, and now works just 2 days a week. She spends the rest of her time at home engaged in exercises to help cultivate Uyen's communication skills and reading skills, and taking her to weekly speech therapy appointments.
“Rather than shy away, we usually take [Uyen] to a lot of social events, every little thing that she can benefit from, so she can learn what the social cues are,” Dr. Nguyen added. “It's hard for my older daughter, because everything [is centered around] Uyen. We had to change our perspective in how we conduct things every day so she doesn't feel rejected or [feel] animosity toward Uyen.”
“You're going to have different phases in working with your child with special needs, just like with any child,” Dr. Nicholas observed. “Help them reach their greatest potential and accept them for who they are. I think all parents need to do that. But I think when you have a special-needs child you're forced to do that earlier. Be grateful for who your child is.”
Dr. Michelle May and her daughter, Elyse May, who was born with congenital adrenal hyperplasia. Courtesy Dr. Michelle May
Helpful Reading
These books may be helpful to physicians who have children with special needs:
▸ “You Will Dream New Dreams: Inspiring Personal Stories by Parents of Children With Disabilities,” edited by Stanley D. Klein, Ph.D., and Kim Schive (New York: Kensington Publishing Corp., 2001).
▸ “Special Children, Challenged Parents: The Struggles and Rewards of Raising a Child With a Disability,” by Robert A. Naseef, Ph.D. (Baltimore: Brookes Publishing Co., 2001).
▸ “Uncommon Fathers: Reflections on Raising a Child With a Disability,” edited by Donald J. Meyer (Bethesda, Md.: Woodbine House, 1995).
▸ “Since Owen: A Parent-to-Parent Guide for Care of the Disabled Child,” by Charles R. Callanan (Baltimore: Johns Hopkins University Press, 1990).
▸ “A Difference in The Family: Living With a Disabled Child,” by Helen Featherstone (New York: Penguin Books, 1981).