What if your baby has a seizure?
What if you suspect your baby is retarded?
What if your doctor tells you your baby has cerebral palsy or epilepsy or a score of other disorders where the bottom line is that your child will be what they call "exceptional." Meaning . . . "different."
Dr. Mark Batshaw is a pediatrician who specializes in the care of handicapped children. He is an associate professor of pediatrics at the Johns Hopkins Medical School in Baltimore and a developmental pediatrician at the John F. Kennedy Institute for Handicapped Children, affiliated with Hopkins.
Because of his specialty, he was asked by the Hopkins education department about five years ago to teach a course for special educators and speech pathologists. The class was quickly oversubscribed and became a permanent addition. It was attended by educators and therapists, but as the word got around, he says, "Suddenly parents started coming to the class."
It began rather informally, Batshaw recalls, first with lectures and later lectures with "made-up slides."
The second year, "I made up an outline and Xeroxed articles and things like that because I'd never been able to find an appropriate book."
The third year Batshaw decided to write the book. Last year it was published.
Children With Handicaps, A Medical Primer, by Batshaw and co-author Yvonne M. Perret ($18.95, Paul H. Brookes), was aimed principally at the specialist--educators, therapists, general-practice pediatricians--but the biggest audience, says Batshaw, has been the parents themselves.
"They become," says Perret, a developmental research assistant at the Kennedy Institute, "extremely expert in the area of their child's disabilities," even if they had no previous educational background or experience in medical problems.
Interposed with the latest scientific information on disabilities that affect some 15 percent of the population are sensible down-to-earth instructions for dealing with chronic or emergency problems, from feeding to grand mal seizures. And for putting to rest some old but wrong bits of conventional wisdom, as, for instance, instructions for handling a child having a seizure:
" . . . One should not insert a spoon between the person's teeth to prevent swallowing of the tongue. A person is physically unable to swallow his tongue. The main effect of trying to insert a spoon would be a bitten finger or a broken tooth . . . "
Instead, "The child should be laid on the floor or a bed so he does not injure himself. He should be turned on one side so he does not choke or aspirate if he vomits . . . If the seizure lasts more than 15 minutes, . . . the child should go to an emergency room . . ."
Feeding problems for handicapped babies can be particularly frustrating and confusing to parents, and potentially dangerous to the baby.
The book includes a general section on nutrition and feeding for handicapped children and touches on some of the potential problems.
But in this area, the Kennedy Institute itself has produced "Eating for Health," a "Nutrition Handbook for Caretakers of the Handicapped Child."
This booklet, available in single copies at no cost, discusses in greater detail the kinds of feeding problems associated with handicapped infants and children and helps therapists communicate with parents via a series of single-page graphic flow charts designed to deal with specific problems.
For example, one dealing with "Drugs & Diet" suggests that "WHEN USING: phenobarbital, CONSIDER: vitamin D supplement, BECAUSE it may cause decreased absorption . . ."
Another offers tips for treating constipation, a side effect of many drugs.
Yet another, tips for encouraging fluids for children who will not, or cannot, swallow fluids or who need extra fluids.
Examples: "Offer small frequent sips" or "encourage eating of foods that become liquid at room temperature such as: fruit ice, Jello, ice cream, sherbet, fruit-juice popsicles."
Free single copies of the handbook may be obtained from: The Nutrition Division, The John F. Kennedy Institute for Handicapped Children, 707 N. Broadway, Baltimore, Md. 21205. Dr. Batshaw's book may be purchased through the Kennedy Institute or from the publisher, Paul H. Brookes Publishing Co., P.O. Box 10624, Baltimore Md. 21204.