A special thanks to Alycia Halladay (Autism Science Foundation), Betsy Pilon (Hope for HIE), Brandy Fureman (Epilepsy Foundation), JayEtta Hecker (Wishes for Elliott/ DEE-P Connections), Lisa Schoyer (Rasopathies Network), Tuesdi Dyer (CFC International), and Geraldine Bliss for sharing these great resources.
Value of Having Sibling Resources
The diagnosis process and the years that follow are often challenging for the parents of the child as they figure out their next steps. During this critical period, and while living with a family member with a rare epilepsy, it is crucial that siblings receive the attention and support they need as well. Oftentimes when a diagnosis occurs, a drastic change in family dynamic occurs, whether it be doctor’s appointments, hours of research about a condition, or anything else, there are bound to be changes. Ensuring the sibling, of any age, understands the situation to the best of their ability and their feelings of confusion helped to the best extent.
Types of Sibling Resources
Some organizations have their own sibling resources where usually younger siblings can chat about their feelings and some challenges they might face. Siblings can also talk to other siblings of a different disorder during conferences or scheduled times. There are plenty of other fun ideas that can be used such as connecting siblings and having them become penpals.
Great Resources YOU Can Use
Epilepsy Foundation Kids Crew: A variety of events and videos that form an inclusive sibling community for those 14 and under whose family members have any form of epilepsy
Sibling Support Project: Events where that take on a wellness perspective where siblings can meet others who have siblings with special needs and fosters conversation among younger siblings. Generally for ages 8-13, but depending on the community can be available for a wider range of ages.
Parent to Parent USA: A national program that supplies high-quality research and tools for parents. This serves more as training for parents wishing to serve as strong advocates while forming connections with other parents of special needs family members.
Family Voices: This national organization connects families of children and youth with special health care needs. There are Family-to-Family Health Information Centers (F2Fs) with uniquely qualified staff to provide support for families caring for a child with special health care needs.
NORD Living Rare, Living Stronger NORD Patient and Family Forum: An interactive event on June 26-27. In this patient-centered event, families will hear from leaders in the rare community on a variety of educational topics, and participate in wellness activities and entertainment activities. Register here.
Examples From REN Members
DEE-P Connections: In June DEE-P will be launching a program for all DEE families and siblings. It will likely include a family sharing group to share experiences, possible guest speakers, and maybe a professionally monitored private online group for sharing family challenges related to DEE.
The Brain Recovery Project: Childhood Epilepsy Surgery Foundation: This organization has partnered with Parent to Parent USA to provide certified peer support specialists to families navigating their epilepsy surgery journey. This program is intended to launch sometime in early 2021.
CURE Epilepsy Education Enrichment Fund Scholarship: Scholarships that support coursework scholars who intend to become agents of change in the epilepsy community.
Other Great Examples of SiblingResources
Sam’s Sibs Stick Together: A great webinar series highlighting the benefits of sibling support programs.
CFC International Cardio-Facio-Cutaneous Syndrome hosts a “sibShop” at all of their conferences.
Hope For HIE has a super sibs group where families connect their younger members with other siblings of similar age as penpals.
Conclusion
Ultimately, being able to talk with another member of the community who is going through a similar situation tends to be a therapeutic-like process for many people; this includes siblings. Whether a smaller or larger organization JayEtta Hecker from DEE-P Connections and Wishes for Elliott offers great insight into this subject: “The issues and challenges are clearly very similar across disease groups, so collaboration in this arena has merit, especially for newer and smaller organizations.” Welcoming “Collaboration or coordination and cross-promotion with other services and programs of other organizations,” can prove extremely helpful in creating resources for the rare community. We at REN hope you find these resources helpful and continue collaborating for success and support among the rare community.
Thank you for the insights and advice from members from (orgs) that made this blog and our amazing community possible!
Consolidated and Edited by Sebastian Druehl, Class of ‘21, Walt Whitman High School, Bethesda Maryland.