Q: A few months ago our youngest son was diagnosed with epilepsy. This has come as a surprise to my husband and me. Neither of us have a history of epilepsy in our families. This is hard. We are not sure what to do.
A: I trust that by now you are working with your family doctor and a neurologist. You need them to make sure that your son is getting the appropriate medication and treatment, and they need you to build as healthy a home as you can for your son.
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The history of epilepsy is shrouded in discrimination. Even today, despite modern drugs that control the frequency of seizures, pockets of stigma can be found in our schools and communities.
In Canada, an average of 42 people every day learn that they have epilepsy. That works out to 15,000 new cases each year, or 0.6 percent of our total population. It is the most common neurological disorder on the books, yet the one about which people talk the least. Few people know that some famous people struggled with epilepsy including Vincent Van Gogh, Ludwig Van Beethoven, Napoleon and Joan of Arc.
Apart from ensuring that you and your husband are providing a home founded on the principles of good health care, you are most likely going to best help your son by advocating for him when he runs into neighbours, teachers and others who do not understand epilepsy. To properly represent your son to the community, you need to learn as much as you can about the disorder. Ask your doctor as many questions as you can, read books and scour the internet for sites on epilepsy.
Next you need to get in touch with support groups for you and your son. You are not likely to find too many groups in our rural communities, but you can find them on the internet. Be fussy. Don’t commit yourself to a chat room in which families are sharing experiences until you are comfortable.
Finally, practise talking about the disorder with everyone else in your family. Epilepsy is not the end of the world. Most people who have it are able to lead normal and successful lives. I can appreciate that the news caught you off guard and that you likely had some moments of sadness, but suffering in silence has never been a prescription for success.
The more that you talk about it with each other, the more you will begin to understand that your son’s epilepsy is just another of those nuances that come with being parents.
Of course, the more you talk to each other about it, the more you will be able to talk to everyone else. Those other people are the doors you need to open for your son to be an active member in the community.
Jacklin Andrews is a family counsellor from Saskatchewan who has taught social work at two universities. Mail correspondence in care of Western Producer, Box 2500, Saskatoon, Sask., S7K 2C4 or e-mail jandrews@producer.com.
