You Are Not Alone Program Kickoff

December 2005, excerpted from The Update

October 2005 marked the kickoff of You Are Not Alone: Parenting Your Teen with Epilepsy. This program was designed in cooperation with other Epilepsy Foundation affiliates across the country to provide information, guidance and support to parents and caregivers of teens with epilepsy through six (6) educational workshops.

Parents know that the transition from childhood into adulthood often includes emotional, psychological, and social challenges for any teen. A teen with epilepsy, especially when newly diagnosed, may have an increased level of 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 save time helping them accept limitations on their freedom and choices that may be necessitated by the seizure disorder. These workshops along with the toolkit are designed to support this effort.

Through these workshops and with the help of the toolkit, parents can look in on the experience 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 material addresses 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.

Benefits for participants include: meeting other parents of teens with epilepsy; working on communicating with your teen; expands your resources and support system; addresses self-care needs; and helps test a national program just for parents and caregivers of teens with epilepsy. To learn more about the program and to see if it is right for you, call Patty Trotta or Doug Simmons at (513) 721-2905.

Find out more about You Are Not Alone.