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Jackie Ferman
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ST. LOUIS, August 4, 2003 — Raising children isn’t easy. Raising children with a chronic illness like epilepsy can be even more challenging. Just ask St. Louis Children’s Hospital neuropsychologist Lynn Blackburn. She wrote the book.
"Over and over I heard parents say ‘I just don’t know what’s fair. I don’t know what to expect or what to do.’" After more than 20 years treating children with epilepsy, Dr. Blackburn has published a handbook for parents: Growing up with Epilepsy: A Practical Guide For Parents .
"Every parent at some time in their child’s development has wished they’d been given a user’s guide – like the manual you get with your car." While most parents may learn to rely on the advice and personal experiences of friends and family, a support mechanism for parents with children living with epilepsy may not otherwise be available.
"When your child has epilepsy, you feel like nobody else has it and there’s nobody to talk with. This book is a practical user’s guide to negotiating childhood, school systems and adolescence with a child who has epilepsy."
And it’s custom-made to fit parents’ busy schedules, with chapters broken down by age for quick-reference. "When your child has epilepsy you’re very busy. The book provides quick and easy reference so parents can obtain answers to only the questions that affect them directly."
Parents must also combat society’s misconceptions and stereotypes related to epilepsy, often taking on the role of educator. It’s an intimidating responsibility for which many parents feel unprepared.
Dr. Blackburn says, "Part of the book’s goal is to address the stigma by educating people with epilepsy and their parents so they’re better ambassadors and role models. Individuals dealing with epilepsy have the power to change society’s perceptions of epilepsy."Growing Up with Epilepsy: A Practical Guide for Parents will provide parents with that education, as well as guidance regarding discipline, social development, and other tools to ensure their child’s progress.
"These kids can grow up to be very competent adults but the challenge of managing behavior, school programs and stigma along the way can cause problems. The book is written to help parents help their children meet these challenges."
Dr. Blackburn has been treating children with epilepsy since 1980. She is currently a pediatric neuropsychologist at St. Louis Children’s Hospital and works with families through the Pediatric Epilepsy Center, a joint program of St. Louis Children’s Hospital and Washington University School of Medicine. She is also on the Epilepsy Foundation’s Professional Advisory Board in the St. Louis Region.
St. Louis Children’s Hospital has provided specialized care for children for more than 120 years. Children’s Hospital is affiliated with Washington University School of Medicine, ranked the second best medical school in the country by US News & World Report. In 2003, Child magazine ranked St. Louis Children’s Hospital sixth on its list of the 10 Best children’s hospitals in the country, and fourth in neonatology/neonatal intensive care unit (NICU). St. Louis Children’s Hospital also is a member of BJC HealthCare.