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Parents & Caregivers Guide
Learn about siblings’ experiences and ways to keep communication open.
About the guide
The VIP Sibling Collaboration Team developed this guide with rare epilepsy organizations, families, and specialists. It focuses on the child without rare epilepsy and the support they may need. These are app-adapted highlights, not the full guide.
A family-wide experience
Unpredictable seizures and additional care needs can change routines for the whole family. Siblings may take on responsibilities early, develop empathy, and also experience worry or frustration.
Listening matters
The guide encourages regular, age-appropriate conversations outside moments of crisis. Giving siblings time to express themselves helps adults understand feelings they may not otherwise notice.
Making space for each child
The guide describes one-on-one time, recognition of a sibling’s strengths, encouragement, and attention to their milestones. Love Notes offer a simple way to express care.
A wider support circle
Teachers, relatives, coaches, and trusted friends can be part of a sibling’s support network. The family awareness form helps communicate your family’s circumstances.
Planning together
The VIP Sibling Seizure Plan offers a way to discuss a sibling’s preferred role before an emergency. Their preferences may change; revisit the conversation over time. Read the original guide for its complete guidance and references.
Original downloads
Open the official resource to read, download, or print it. Spanish materials remain in their original format.
Opens vipsibling.com in a new tab. Original materials from the VIP Sibling Project, ©2024 UCB, Inc., unless otherwise noted in the resource.