It can be hard for brothers and sisters when a sibling has a chronic illness like Dravet syndrome. Their routines are disrupted, and they worry and wonder what is happening and if their sibling will be all right. Often times the parents time is limited by the complex needs of the child with Dravet syndrome, and siblings can feel unimportant or neglected. This can be upsetting and frustrating for everyone involved. For Dravet siblings, their whole childhood takes a slightly different turn to most of their peers. It is important that they have the opportunities and tools they need to help them understand and cope with the situation.
To help meet these needs, DSF offers a day camp to connect siblings in-person at our biennial conference and annual Day of Dravet workshops. These opportunities address the needs of siblings, within a nurturing and fun environment. Multidisciplinary recreational activities help them to better understand their surroundings, express their feelings, and meet and bond with peers who are experiencing similar circumstances.
Many members of our community including parents and siblings (ages 9 and up) participated in a research study called the Sibling Voices Survey. Findings from the study were presented at the 2018 DSF Conference in Aurora, CO. An infographic of the findings can be found here. And now, thanks to continued collaboration with Zogenix, we are able to provide two important new resources to support siblings and their families.
The Parent & Caregiver Resource Kit was created based on research and inspiration from the community in conjunction with guidance from HCP’s specializing in Dravet Syndrome and mental health experts. We hope it can offer support and resources for families who are impacted by Dravet syndrome.
- The Impact of Dravet Syndrome on Siblings booklet which highlights a few of the most important learnings of the Sibling Voices Survey and as well, provides insights based on real life experiences contributed by parents, caregivers and siblings from the Dravet community. With words of encouragement shared throughout, this important resource provides helpful information on ways to support your sibling.
- The Sibling Support Guide is a tri-fold that provides parents and caregivers with important information and tips when looking for signs that your child may need additional support or help. The guide also provides helpful recommendations on how to help keep the lines of communication open as well as information to support you in your efforts to support your VIP siblings.
- My Family is Living with Dravet is a tear-pad with a one-page information sheet that you can share with the sibling’s support circle. Parents say it can be difficult to constantly repeat to everyone around them what Dravet is and to explain how it can impact the family. This user-friendly document provides a high-level summary which can be customized to include your emergency plan and contact info so that those who support your VIP sibling have a better understanding of what your child might be experiencing and feeling.
- Love Notes. Even though most siblings understand why parental attention is mainly focused on their brother or sister with Dravet, it can be difficult at times to remember how important they are. Dropping a Love Note inside the sibling’s lunch, backpack or sliding it inside a textbook to be found later, it a wonderful way to remind sibs that you are thinking of them and that they are important.
Parent & Caregiver Resource Kit
The Impact of Dravet Syndrome on Siblings
Sibling Support Guide
My Family is Living with Dravet Syndrome
VIP Sibling Kit
Coloring Book w/markers
VIP Stress Putty
Rockin’/Rough Day Wristband
Siblings can also receive their very own special VIP Sibling Kit. The purpose of the kit is to remind siblings how important they are, and offer tools that can help calm and provide simple communication tools that let those around them know how they’re feeling. Two versions of the VIP Siblings Kit have been created, one for sibs ages 4-10 and one for ages 11-18. Both kits include:
- The VIP Sibling Journal provides the opportunity for siblings to write, draw and doodle their feelings through the prompts with fun and sometimes thought-provoking questions. Available in two age-appropriate versions.
- The Positive Affirmation Coloring Book comes with markers. Coloring can be very calming and by infusing the positive messaging throughout the book, we hope sibs will find comfort and confidence through the simple task of coloring. Available in two age-appropriate versions.
- VIP Stress Putty provides a cleverly disguised way to provide a litte release when experiencing anxious feelings.
- The Rockin’ / Rough Day Wristband allow sibs to express how they’re feeling in a non-confrontational way. The wristbands are double-sided with clear messages on each side. For all of us, we have some good days and some bad days. Now with a quick flip of their Rockin’ It / Rough Day wristband, siblings can communicate how they feel to parents, caregivers, and all those in their support circle.
- and more! Each kit includes other items that are age-appropriate. Younger sibs will receive a book that helps them deal with their different feelings and emotions, along with a plush star for their backpack that reminds them they are a “star” and an important member of their family. Older sibs will receive a VIP Sib popsocket and VIP door hanger to help communicate when they need space and when they want to talk.
For a Dravet sibling to receive a VIP Kit, a parent must be a member of the DSF Family Network and live in the U.S.
For parents to receive a Resource Kit, they must be a member of the DSF Family Network and live in the U.S.
If you are unsure if you are a member of the DSF Family Network, email Jennifer@dravetfoundation.org.
Kits will begin shipping in August 2020.
This program is proudly sponsored by:
The information collected by Dravet Syndrome Foundation will not be sold or distributed outside of DSF and is used solely to verify the identity of and to communicate with Super Sibling member families as needed. Questions or concerns can be directed to our team.