COPING WITH EPILEPSY: WHEN COUNSELING DIDN’T HELP – PARENTS’ SUPPORTING
“For the families who have a retarded child with epilepsy, or with cerebral palsy and epilepsy, or a child with some other combination of multiple handicaps, then you may have to define success and failure differently. We often are faced with families with a severely-damaged child who also has seizures. They come to us before they really recognize how damaged the child is and how limited that child will be. The parents will focus on the seizures and the medication and overlook the other underlying problems.”Parents like this will need a lot of support over a long period of time. You can’t just tell them right off, ‘Hey, your child is never going to walk or talk or do anything.’ It is important to give them hope. Everyone needs to maintain some hope. But you have to help them to become realistic, gradually to come to terms with the child’s problems and to accept them. Realistic acceptance, coupled with hope, is the goal I set for these parents.”You have to help them to see and appreciate the small successes every child achieves. These little successes—smiling, responding, turning over, making a sound—may be minimal achievements to you, but they are major achievements to the parent who has waited for them so long. Parents’ reactions to severely-handicapped children like these often will depend on ethnic background and on the social context in which they were raised. There is also a lot of individual variation. It is amazing the reserves of strength that reside deep in many people.”I don’t know how I would respond if I were thrust into the situation that faces many of these parents. And I don’t think anyone knows how he will respond until he actually has to face it. But, somehow, virtually all of them do respond in a positive fashion. Somehow, virtually all of them learn to cope.”What they require most of all is support. They need to realize that they aren’t the only ones who have faced a tragedy. They need support from husband or wife, from grandparents, and from friends. The counselor can be a major source of that support but must also help in finding other community and family sources. I try to make sure that the grandparents are educated about the epilepsy and about the child’s other problems; if grandparents do not understand, they can be very destructive instead of supportive of the family.*232\308\8*
