When Your Child Has a Disability

An interview with Dr. Mark L. Batshaw, author of When Your Child Has a Disability

Interview by Allison Martin

Mark L. Batshaw, M.D. is "Fight for Children" Chair of Academic Medicine and Chief Academic Officer at the Children's National Medical Center and Chief Academic Officer at the Children's National Medical Center, Director of the Children's Research Institute, and Professor and Chairman of Pediatrics at George Washington University School of Medicine in Washington, D.C. When Your Child Has a Disability is an invaluable resource for parents of children with disabilities.

What advice would you offer to parents of a child with a disability?

It is really important that the child's disability not become the entire focus. The child should live in your house rather than you living in their house. Otherwise the family is defined by the disability and the child, the marriage and the other children all suffer. Your child has special challenges and he is also a member of the family.

There has never been a better time for people with disabilities, especially in the United States. The Americans with Disabilities Act has remarkably improved things in that regard, for resources and protection of education and jobs. Also, there are far more options of treatment than even a decade ago.

Needs vary by the disability, but there are many things in common that parents need to understand. Why does their child have this disability? How does it show itself? How does it change over time? What are the different medical or surgical options? What adaptive equipment is available? What are the reliable therapies needed? What are the behavioral implications? Implications for future children in terms of genetics? How are they likely to respond as family because of the increased stress - physical and emotional?

In my book I try to cover all those areas that are common to all the disabilities and have special chapters on each individual disability. I also provide resources on recommended resources and websites.

What changes have you seen in this area over time?

There have been enormous changes in medicine - advances in treatment and in understanding what causes disorder and in diagnostic techniques. At the same time there has been enormous societal changes in the way we perceive people with disabilities, in terms of education and involvement in the community. There is also an increased recognition of the role of parents in care of their children. Parent need more information. They are expected to make more decisions, which are now more complicated as they have so many more choices.

How might either adoption or premature birth affect the possibility your child having a disability?

Depending on where the adoption occurs, there is a certain increase of risk of disability. For example, in children adopted from Russia there is some increased risk of fetal alcohol. There is concern of social interaction problems for some children adopted from Romania. If you are adopting from an area where certain problems are more common, keep that in mind as your child grows so that you can pick up on it. Early remediation in most cases means better outcome.

Preemies are doing far better than they ever did before but still are at much greater risk for Attention Deficet Disorder (ADD) and Learning Disabilities. If you have a premature child, you out to be looking for early signs of developmental lags and problems so treatment can be started early.

What prompted you to focus on the practical as well as the medical aspects of parenting a child with disabilities? Do you have a personal interest in the topic of children with disabilities?

It began when I was a pediatric resident and my wife was pregnant with my first child, Alicia. When she went into labor there were complications and Alicia was born by emergency cesarean. While I was in the waiting room to find out if my child was going to survive or what disability she might have, I made a commitment that if she was okay I'd dedicate my professional life to helping parents who were less fortunate in that regard. It turned out she was okay and is now a special education teacher herself. So it was quite early in my career.

After becoming a doctor, I attended Kennedy Kriger for developmental disabilities, where I trained to be a developmental pediatrician. I stayed on the faculty there. I started to teach in undergraduate and graduate course on medical and physical aspects of handicapped children in the 70's. At that time there wasn't a textbook on this topic, so the students asked if I would put together my slides and lectures and produce a book. Children with Disabilities is now in its 5th edition.

It turned out that the book was read by many parents. A number of parents contacted me and said, "It was a wonderful book, but its really written for professionals, could you write one for us?"

What are your plans for the future?

I continue to research birth defects and develop new treatment and I see patients who have disabilities in my clinic in Washington, DC. Next year we will have the fifth edition of the text book Children with Disabilities for professionals and students. I plan to continue revising the parents' book When Your Child has a Disability as changes occur.

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