Dr. Combrinck-Graham noted that it took a while for her own mother to accept Mark as he became an adult. “She likes to have intellectual conversations and she constantly displayed disappointment [in him], which I don't even think she was aware of,” she said.
“I finally said to her, 'He's not what you wanted him to be, but he is who he is. You're missing out on a great opportunity, so why don't you get over it?' Now, most of the time she's really getting a kick out of him.”
Elisa Nicholas, M.D., reiterated the importance of focusing on the assets of a child with special needs. But she pointed out that the competitive, achievement-focused culture of medicine can pose a challenge to that effort. “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. He copes with difficulty walking, general coordination problems, and cognitive challenges.
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.”
She knows 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. While it can become all-consuming, it is imperative to take time for yourself, your spouse, and your other children.”
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.
While support for parents of special-needs children can often be found through forums tied to a social service agency, hospital, advocacy group, or on the Internet, sometimes it comes out of the blue. For example, The Children's Clinic serves 80% of the most severely disabled low-income children in the Long Beach area. In an effort to bond with her patients, Dr. Nicholas tells patients about Tom and her family and she asks about their family. One of her patients has three children who are moderately or severely mentally handicapped.
“She always remembers to ask about my son,” Dr. Nicholas said. “She struggles financially and carries a huge burden and responsibility for her children.” Considering her circumstances, she added, “it's amazing she can actually think about somebody else. You see a grace and resilience among these people who accept and work with what they have.
“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.”
“I am now more empathetic to patients who have chronic medical conditions that require a lot of attention,” said Dr. Michelle May, pictured with her daughter, Elyse. Courtesy Dr. Michelle May
Helpful Reading
The following 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).