Parent's Guide

“When my son was little, I could manage the seizures and medications for him…but he isn’t little anymore—it’s up to him. My job has changed—the best thing I can do is to prepare my son to manage his own health and to be there to support and encourage him every step of the way. I want him to keep good seizure control and cope with the ups and downs, but more importantly, not let epilepsy get in the way of his dreams and his life.”

-Patricia Osborne Shafer, RN, MN
Mother of teen with epilepsy

As a parent of a teen with epilepsy, you may be dealing with issues- some more teen related, others more epilepsy specific. This program helps you work through these problems.

Use the parts of this program as conversation starters with your spouse or partner, between you and your teen, or with other family members and friends.

Part 1— Letter to Parents

Read this letter to parents, which was written by a parent of a child with epilepsy, to better understand how this toolkit can help your family.

Part 2— “You Are Not Alone” Video

mother and son

This documentary-style video features the story of two families who “survived” the teen years. The video does not cover all experiences or viewpoints, but shares the experiences of a few families. The video is meant to spark discussions about what you are experiencing. Because of the realism of the video, a wide range of issues, emotions, and thoughts may arise about parenting a teen with epilepsy.

The video can be watched in its entirety or can be stopped and started for discussion with your teen, spouse or partner, or other family members and friends. It has been edited into nine segments for this purpose.

After watching the video, you may want to start a discussion with your family members about their reactions. The questions to consider may be helpful in the discussion.

Please note: Roxanne’s aunt mentions that Roxanne was diagnosed at an Epilepsy Foundation (EF) affiliate. Not all EF affiliates have clinics associated with them. A diagnosis of epilepsy should only be made by a medical professional.

Part 3— “Rewind” Conversations

You will read the transcripts of three “overheard conversations” between parents and their teens living with epilepsy. Each conversation is “rewound” and followed by a different version of that conversation that demonstrates one way teens think the conversation should have gone.

Just like the video, these conversations address a wide range of issues and emotions that may come from parenting a teen with epilepsy. You may disagree with some of the alternatives presented in the “rewound” conversations. Remember that the “rewound” conversations are meant to spark discussion rather than provide final solutions to the situations discussed.

Consider reading the conversations alone or with your spouse or other adult first. Then, read one scenario at a time with your teen and initiate a discussion on the issues that it covers. After reading the conversations with your teen, spouse, or other adult, initiate a discussion about communication styles and what you can do to improve current communications. Try to focus on actively listening to your teen and affirming what you hear from him or her. You may want to use the suggested questions to stimulate and direct the discussion.

Part 4— “Reach Out” Brochure

Consider reviewing this brochure with your spouse, partner, or other family members and discussing how parenting a teen with epilepsy has affected the family as a whole and each individual family relationship. Together, make a plan of action for nurturing your relationships and yourself. Base the action plan on goals that you set together. If you have never attended a parent support group meeting, seek one out either close to home or online.

Part 5— Resource Guide

The Resource Guide provides additional information, including organizations and online sources for more information on epilepsy and a range of topics related to family and parenting issues.

Part 6— Stationery

Use this set of preprinted sheets to write messages to teachers, neighbors, coaches, employers, or other adults who come into contact with your teen. It is a vehicle for introducing your teen’s condition and advocating for him or her. Note that 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.