Thoughts on parent groups

William B. Svoboda, MD, is a retired pediatric neurologist. He is the founder and former Director of Via Christi Epilepsy Center of Wichita, Kansas.

This series of articles about the effects of epilepsy on children's lives and personalities, and how parents can help their child achieve a happy, independent life, is based mostly on an interview with Dr. Svoboda that was conducted by Shawna Cutting, a writer for epilepsy.com.

How are groups for parents set up?
Well, some epilepsy centers are very good at setting them up. Local chapters of the Epilepsy Foundation often take the lead in doing this. Unfortunately, the groups are often adult-oriented, especially if they are set up by an adult neurologist. These groups focus on adult worries like jobs, driving, and possible epilepsy surgery. In situations like that, one has to almost cry out for the children.

Parents are more concerned about school, safety, behavior, and their child's future. The kids themselves are most concerned about restrictions—the "you can'ts" they hear because of possible seizures. Both adults and children complain that medical personnel only want to talk about medications, new procedures, and occasionally laws.

So seek out the best group for your family, one that gives both professionals and family members a say and that talks to your concerns as parents. You should also look for a group that gets the kids together to address their worries.

Is it useful for parents of children with different disorders to meet as a group?
You can get the basics of parenting, the basics of dealing with the school—those are the same. But often parents whose children have different disorders don't have much in common. For instance, the mother of a child with diabetes is very attuned to checking the child's blood sugar, but the mother of a child with seizures has no interest in that. One great commonality that all parents can learn is how to emphasize what is good about their child, not what is handicapped or disordered.