Super Siblings & Parent Resource Kits
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 alright. Oftentimes 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 (versión en español). Findings from the study were presented at the 2018 DSF Conference in Aurora, CO. An infographic summarizing of the findings can be found here (versión en español). Or click here to access the full published research results.
Thanks to continued collaboration with UCB, we are able to provide two important resources to support siblings and their families.
Parent & Caregiver Resource Kit
- Sibling Support Guide
- My Family is Living with a Rare Epilepsy
- Love Notes
- VIP Sibling Seizure Plan Form
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 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 a Rare Epilepsy 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 syndrome 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.
- VIP Sibling Seizure Plan Form helps siblings by establishing a plan with their parent on how they can help when a seizure occurs and what to expect.
VIP Sibling Kit
Ages 4-10 includes:
- My Sibling is Special Book
- Coloring Journal
- Family Journal
- Mood Stickers
- Rockin’ It/Rough Day Wristband
- Plush Star
Ages 11-18 includes:
- Sibling Journal
- Family Journal
- Rockin’ It/Rough Day Wristband
- Door Hanger
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. Kits include:
- The Family Journal is designed to be a communication tool that parents and their VIP Siblings can use to express their feelings, including hopes, fears, and of course, their love and care for each other. Use the journal to share what’s on your mind or to let your family member know you’re thinking of them. Write a short note or long letter—it’s up to you! Take space and privacy to write on your own time, in your own words. Then leave the journal where your family member (grownup or sibling, depending on who is doing the writing) can find it and read it on their own time and in their own space. Maybe you can even have a designated spot where you “pass” the journal back and forth to each other. This is your Family Journal so you decide what works best!
- Available in two age appropriate versions, siblings will receive either a Coloring Journal or Sibling Journal. Coloring and journaling can be very calming and by infusing positive messaging throughout the book, we hope sibs will find comfort and confidence through the simple task of reflection.
- 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! Younger sibs will receive a plush star for their backpack that reminds them they are a “star” and an important member of their family, along with mood stickers. Older sibs will receive a 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 firstname.lastname@example.org.
This program is proudly sponsored by: