COPING WITH THE UNCERTAINTIES OF SEIZURES AND EPILEPSY:A PARENT’S SPECIAL NEEDS – I DON’T WANT TO BE PART OF A GROUP
” I don’t want to be part of a group. I don’t need them, and I don’t need to hear about someone else’s problems. I have enough of my own.”We often hear this statement from parents. Or else one parent will say, “I’d like to go, but my husband (wife) won’t have anything to do with it.” Groups are generally helpful, but some people are just not ready to join a group at a particular time in their lives. Some people are embarrassed to talk about their feelings or problems in public. But you are not the only one who has had to deal with such problems. Hearing how other parents have coped is often far more helpful than hearing similar advice from your physician. Parents choose different words, have a different tone to what they say. And they have “lived” it, not just learned about it. Talking about your problems can help put them in perspective.If you feel you do not need a group, or feel that you can’t cope with counseling just now, reconsider it later. Remember: If you have adjusted so well that you can’t use any help, perhaps you have a responsibility to join a group so that you can help someone else.Children who have both cerebral palsy and/or mental retardation as well as epilepsy need considerable support. And so do their families. The combination of these disabilities may seem overwhelming, but remember you are not alone. There are many organizations to help you and available services. Every child, regardless of disability, is entitled to an appropriate education, for example. Handicapped children are eligible to receive services as soon as their handicaps have been identified, at whatever age. Ask your doctor, your school system, or your local health department about these services. You don’t have to wait until your child is old enough for school.For the child who has cerebral palsy, and for the parent of that child, United Cerebral Palsy (UCP) provides excellent support services with appropriate guidance and advice. The Association for Retarded Citizens (ARC) can provide similar services for the retarded child and his family. Parents’ groups sponsored by these organizations talk about managing mental retardation or coping with cerebral palsy. They don’t talk about seizures. Yet for parents of children who have intractable seizures, and where mental retardation and cerebral palsy frequently co-exist, the focus is often on seizures: “If only the seizures were controlled, it would be easier to deal with the other problems.” *207\208\8*
