She added that families of special-needs children “shouldn't feel ashamed or try to hide their kid and shouldn't feel reluctant to invite people in to help. For instance, Mark is fairly independent. Sometimes we go away overnight and might say to one of our friends, 'Would you give him a call and say hi and see if he's alright?' Or sometimes when we go away someone will stay with him in the house. We do this so he has a larger circle of people paying attention to him while we're away. I've met some parents [of special-needs children] who say, 'Nobody would want to do that for my child.' That's not true. People really do want to know what to do, so they need to be included with your friends and family. Raising this child, loving this child, and making this child feel welcome is a collective activity. None of the tasks should be assigned to just one person.”
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 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.
When Tom was diagnosed at age 16 months, “we were all depressed and frightened in not knowing what the future might hold,” she said. “It's difficult because I think most physicians to some extent are able to control their destiny, [the idea that] if you work hard enough you can achieve something. But in these kinds of situations, you're not in control.”
She also 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.
“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.”