You Are Not Alone - Toolkit

You Are Not Alone is a toolkit developed specifically for parents of teens who have epilepsy. Parents know that the transition from 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. The materials in this toolkit are designed to support this effort.

Print Materials

• Parent's Letter
  Letter describing kit material from a parent of a teen with epilepsy.
• Parent's Guide
  Strategies and suggestions for use of kit materials by parents.
• Facilitator's Guide
  Strategies and suggestions for use of kit materials by facilitators of Support Groups.
• Reach Out Resource Guide
  The Resource Guide includes a list of parenting resources as well as family support groups throughout the country and sources of relevant and useful information.
• Reach Out Brochure
  The stress of parenting a teen with epilepsy affects the whole family, including one's marital relationship and relationships with other children. This brochure includes tips and strategies on how to keep one's self, one's marriage, and one's relationships with other children healthy.
• Stationary [PDF - 193KB]  
  A set of preprinted sheets that can be used by parents and professionals to write messages to teachers, neighbors, coaches, employers or other adults who come into contact with their teen. The information on seizure first aid at the bottom of each page provides an opportunity to educate the reader about the appropriate response to a seizure. Each sheet carries a different parent quote that advocates for the teen and helps to sensitize and educate the reader.

Top of Page

Multimedia Files

• Audio
  • Rewind Audio [64K]—An audio disc that allows parents to overhear three typical parent-teen conversations, and then hear them again from a teen perspective.
  • Rewind Transcript
• Video
  • You Are Not Alone - Toolkit —A documentary-style video that features two different families who have teens with epilepsy, as well as families who have survived the teen years.
  • You Are Not Alone Transcript

Top of Page