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A "complicated dance" of care

  Years ago, before Madison Williams made friends, played baseball and went to camp, a doctor looked at scans of her brain and said: No chance. No chance she would become a normal first-grader.

The doctor said other things to her mother, Lawrie Williams, who lives in Seattle. But it was the phrase "no chance" that stuck.

"Here it is, 10 years later, and I have that quote embedded in my brain," said Williams, whose daughter suffered a stroke in the womb. "It really has staying power with me."

When parents find themselves in the strange new world of developmental disabilities, they often regard doctors as their guides. Every word weighs heavy, setting the tone for how parents see the future.

Some doctors have a natural gift, experts say, and need little training. But many are frustrated by the ambiguity of the situation; there are no easy, ready answers to give parents about their child's future. The origins of developmental disabilities like Down syndrome or autism are still being researched.

"I think what can be intimidating for physicians is all of the unknowns," said Wendy Sue Swanson, a pediatrician in Seattle.

There was a time when the parent-doctor relationship was not as critical to children with developmental disabilities. As recently as a few decades ago, many of the children were separated from their parents and put in institutions.

But with medical advances, and a shift in societal attitudes, more children with developmental disabilities are living at home, in the care of their parents. Their health needs are significant. And because they can't always articulate what's wrong, or manage their own medical care, experts say it's critical that parents and doctors work together to help them

Finding a doctor when your child has developmental disabilities

Questions to ask when looking

1. Do you see children with disabilities in your practice?

2. Do you have experience with children who have (describe your child's disability)?

3. Would you be comfortable working in a medical-team situation with other doctors who will be seeing my child?

4. Can you schedule extra long appointments?

5. Who sees your patients when you are not available?

6. Which hospital do you use for patients who require hospitalization or hospital tests?

7. What are the facilities of this hospital for children and families like mine? If my child were hospitalized, would I be allowed to stay with him/her?

8. After you've examined my child, can you arrange for one of your staff to watch him/her for a few minutes so we can talk alone?

9. Would there be any additional charges for any of these arrangements?

Questions to ask when scheduling

1. I will be needing a longer appointment than most families. Can we schedule a time when we can have a double appointment?

2. My child has difficulty waiting patiently, so is the first appointment of the morning available, or the one right after lunch?

3. If you don't make appointments, what times of day or which days of the week are least busy?

Source: "Doctors, Disabilities and the Family," a parent guide available at: www.nichcy.org/outprint.asp#pa7">www.nichcy.org/outprint.asp#pa7, courtesy of the National Dissemination Center for Children with Disabilities.