You Are Not Alone Program

ou are not Alone is a toolkit developed specifically for parents of typical teens who have epilepsy. Parents know that the transition form childhood into adulthood often includes emotional, psychological, and social challenges for any teen, but a teen with epilepsy, especially when newly diagnosed, may have additional anxiety and confusion due to epilepsy's complexity and unpredictability. When other people (including teachers, other children, and other parents) do not understand or are afraid of this teen who may appear different, a communication barrier can develop, creating further misunderstanding, isolation, and discouragement.  Parents can play an important role in preventing this. When their children with epilepsy become teenagers, they can encourage and assist them in taking responsibility for themselves, while at the same time helping them accept the limitations on their freedom and choices that may be necessitated by the seizure disorder. This toolkit is designed to support this effort.

With this toolkit, parents can look in on the experiences of other parents of teens with epilepsy, their families, and those who have survived the teen years. Parents can discuss their experiences and learn from each other. The kit materials address aspects of familiar issues like dating, driving, drugs and alcohol, medication, family stress, social issues, disclosure, and stigma. It is our hope that providing a valuable source of insight, information and support will help parents understand that they are truly not alone.

This guide explains each of the pieces of the toolkit and provides suggestions for using them. These suggestions are divided into a section specifically written for parents and one written for facilitators of parent groups. The materials are designed for use by individuals as well as families and groups. Although each piece can stand alone, the materials complement one another. The materials are most effective when used as part of a planned program, including audio, visual and discussion activities.

You Are Not Alone:
Parenting your Teen with Epilepsy

Who
Parents and caregivers of typical teens aged 12-18 with epilepsy

What
This program is designed to provide information, guidance and support to parents of teens with epilepsy.  It consists of a series of six educational workshops.  Participants are expected to do the following:

When

Epilepsy Foundation of Greater Cincinnati
895 Central Ave., Suite 550
Cincinnati, OH 45202

(light dinner provided)

Benefits for Participants:

• Help test a national program just for parents of teens with epilepsy
• Meet other parents of teens with epilepsy
• Address self-care needs
• Work on communicating with your teen
• Expand your resources and support system

This program was made possible through a grant from the Centers for Disease Control and Prevention (Grant #U58/CCU322072).  Its contents are solely the responsibility of the authors and do not necessarily represent the views of the CDC.