COPING WITH EPILEPSY/ACCEPTANCE: THE BIGGEST PROBLEM – EMPHASIZING
“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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