Caring for children with disabilities
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 Web sites.
It is 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 children 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.
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 or special needs, 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 that your child may have 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 syndrome. 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.
Premature babies 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 children 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 delays, 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.
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?" The parent's version of the book When Your Child Has a Disability is now in its 2nd edition.
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 for professionals and students and I plan to continue revising the parents’ book When Your Child Has a Disability : The Complete Sourcebook of Daily and Medical Care, Revised Edition as changes occur.
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