In my many years of pediatric practice, I have cared for several hundreds of children with disabilities. I have been impressed by the strength and caring shown by most of the parents. Having a child with a disability either from birth or from an injury later on is devastating. Yet with only a few exceptions I have been amazed at how the parents managed. Many had little financial means but even those who did were quite remarkable. In many ways it was easier to care for these children than the children I cared for when I had my own private pediatric practice. When I made a suggestion about a child with disability it was always taken seriously by the parents. Yet some of the parents in my private practice didn't seem to care if they were the source of problems with their children. I remember the mother who was a chain smoker and had a little boy with asthma. The allergist reported that smoking was causing a lot of his problems. When I told the mother she said. "Well, he can just have his problems, I am not going to stop smoking". I was appalled and asked that she find another pediatrician.
I think the answer for parents who have a child with a disability is to see the child and not the problem. Kids are wonderful and often handle a medical problem far better than other children. They are grateful for the love of their parents and try to make the best of each day. One of my favorite patients, who died at age 22 from Duchenne muscular dystrophy, had a letter to be given to me after his death. He thanked me for my care and for helping to him to live as normal a life as possible. His mother was a widow and a remarkable woman. She treated the youth like a normal child and expected him to do chores and have manners and respect for others.
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