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You Are Not Alone: A Guide for Facilitators

The CDC’s “You Are Not Alone” program supports parents of teenagers who have epilepsy. The following guide instructs the facilitator (someone who leads group meetings) to use these tools.

If you are a “You Are Not Alone” program facilitator, we recommend that you review all of the materials in the kit to become familiar with the issues that are presented. This can help you:

  • Plan for discussions using the questions provided in this guide.
  • Plan your own questions.
  • Anticipate parents’ reactions to the materials.
  • Tailor the discussion to specific issues the parents may want to explore.
  • Decide whether to view and discuss the video in one session or view and discuss it in sections. facilitator in a group

Part 1 – Letter to Parents

Read this letter to parents, which was written by a parent of a child with epilepsy. It will help them understand how this toolkit can help their families.

Part 2 – “You Are Not Alone” Video

Introduce the video to your viewers by explaining that the documentary-style video features the story of two families and other parents who “survived” the teen years. Share that the video does not cover all experiences or viewpoints, but merely the experiences of several families.

The video is meant to be a catalyst for discussion about what they are experiencing. Because of the realism of the video, a wide range of issues, emotions, and thoughts about parenting a teen with epilepsy may arise. Let parents know this ahead of time and tell them that after the video, they will have the opportunity to discuss their reactions.

After showing the video, consider using the questions linked below to stimulate and direct the discussion. To get parents involved, have them share one or two points that “spoke to them” in the video. If the group is large, you may opt to divide it into smaller discussion groups. You can invite each small group to summarize its discussion and share key points at the end of the session.

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

Let parents know that they are about to 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 the conversation that demonstrates one way teens think the conversation should have gone.

As with the video, these conversations address a wide range of issues and emotions that may come from parenting a teen with epilepsy. Some people may disagree with some of the alternatives presented in the “rewound” conversations. Remind them that the “rewound” conversations are meant to stimulate discussion rather than provide final solutions to the situations discussed.

You may choose to read the transcript in its entirety. However, we recommend stopping after each scenario to initiate a discussion with the group, as each conversation raises very different issues. After each scenario, use the suggested questions below to stimulate and direct the discussion.

To get parents involved, ask them if any of the dialogues sounded familiar. If the group is large, you may opt to divide the large group into smaller discussion groups. You can invite each small group to summarize its discussion and share key points at the end of the session. After reading all of the conversations, you may also want to conduct an improvised role-play exercise, where one parent plays the teen and the other plays the parent.

Part 4 – “Reach Out” Brochure

To prepare for the group session, review the contents of the “Reach Out” brochure and develop discussion points and activities that relate to nurturing relationships and self-care. In the session, you can either hand out brochures for parents to read to themselves or have parents take turns reading the sections aloud. After completing the session, you might also consider giving a “homework assignment” that builds on the tips in the brochure. For example, make a date to do something enjoyable with your spouse, take time to go on a fun outing with one or more of the family, or spend time with your adult friends in a social setting.

Part 5 – Resource Guide

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

Part 6 – Stationery

Have the parents brainstorm ways of using this stationery to introduce their teen’s condition and advocate for their teen. Consider giving a “homework assignment,” asking parents to draft letters on the stationery and bring them to the next session to share with other parents for further discussion.

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