“Counseling is not for everyone. Some don’t need it, and some don’t want it. If a person or a family doesn’t want it, then it will be of no use to them. All you can do is leave the door open for them to come back later. Another possibility is to try to connect a family with another family or a support group that may be less threatening.

“Sometimes counseling is crisis intervention; something catastrophic has happened and the individual needs to talk about it. Sometimes families just need help or further discussion in order to understand better the information the physician has given them. But sometimes intervening in those crises or rediscussing the interpretation of the information uncovers a whole can of worms. Suddenly the counselor finds other underlying stresses in the family that need to be addressed. Families who are dealing with epilepsy are just like other families with all their stresses and tensions. Epilepsy is an additional stress, one that can exacerbate and expose all of the others.

“All families need to be able to communicate, and a counselor gives both the individual and the family an opportunity to do just that. They need to talk about the epilepsy but also to talk about all of the other things which affect families, things like expectations, fears, responsibilities, restrictions, and feelings about themselves and others.

“Counseling and education should involve the child, even the child as young as five or six. It is a disservice to leave them out. Involving them early begins the process of ownership of their condition which, over the long run, is so important in helping them to cope.

“The counselor doesn’t cope for them. The child, the teenager, the adult, the family will have to cope for themselves. All I’m there to do is to be the catalyst, to give them the tools to achieve the benefits of confidence and independence.”

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“I’ve certainly seen good counseling done by nurses, psychologists, social workers, psychiatrists, and doubtless many others. But I’ve also seen well-trained counselors who may be excellent with other types of problems but who feel uncomfortable working with kids or with adults who have epilepsy. To be a good epilepsy counselor, a deep knowledge about epilepsy and how it affects people is important. Many counselors are just not sufficiently familiar with seizures and their effects and so are unable to help families become comfortable and cope. Sometimes the personalities of the counselor and the parent or child do not mesh. If working with one counselor is unsuccessful, try another. Counselors must remember that, unlike other handicapping conditions, epilepsy is not present all the time. It is not a visible handicap. It’s not like cerebral palsy or mental retardation. You have to help the kids and the families to cope in a different fashion, with an episodic condition.

“Before we stop, I want to emphasize again the words control, self-image, and ownership. Everyone wants control. You have to help children and adolescents with epilepsy to take control. You can’t do it for them. It’s not the counselor’s epilepsy. It’s not my problem. They have to do the work. It’s their choice. They have to develop their self-image, and giving them small things at which they can succeed is a first step. They have to develop the self-image before they can achieve the control.

“You know, what keeps me doing this is that the rewards are so great. Can you imagine how it feels to have people like Jenny’s family tell me that they would not be a whole family if I hadn’t been there? That’s pretty big stuff. And the kids—you’ve become a part of their lives. While you may not need to continue to see them or counsel them, they’ll just call you up to touch base and let you know how things are going. It’s hard to beat that feeling.”

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