Understanding
Okur-Chung Neurodevelopmental Syndrome
National Sibling Day: Empowering Rare Siblings and Ways to Help Them Feel, Seen, and Heard
Today on National Sibling Day, we shine a spotlight on our rare siblings. Growing up with a brother or sister with complex healthcare needs has unique benefits and challenges. Rare siblings live uniquely complicated childhoods. Whether bringing a friend home and worrying about a sister’s embarrassing behaviors, or wishing for a brother able to play baseball with them, they are always facing situations many of their peers don’t face. Having a sibling with disabilities or special healthcare needs is a complex experience but can also be rewarding. Some siblings feel their place in the family gives them an understanding of difference, diversity, and helping others. Other siblings do not feel this connection and might struggle with these differences.
As you are working hard to create a world that accepts and celebrates differences, don’t leave your typically developing child out. Here are a few ways to help them feel seen, valued, and heard:
- Celebrate their achievements . Show that you value and celebrate them, too. Encourage hobbies or extracurricular activities that are just for them. These activities boost your child’s self-esteem by providing them with something all their own.
- Spent time alone together . Don’t forget to show your siblings your appreciation by spending time with them separately. Even if you only have a few minutes, sharing an experience is really special.
- Talk about the future . Be prepared to talk to your children without disabilities or special health care needs about the future. Siblings might be curious or worried about their role and what the future could look like for your family – and for them.
- Arm them with age-appropriate information . Siblings share many of the same complex needs, emotions, and concerns as their parents, all while managing the challenges of growing up. Providing them with accurate age-appropriate information empowers them to advocate for themselves and their siblings!
- Provide them with support. Siblings may benefit from talking to a counselor or therapist who understands the challenges they are facing. Consider finding a support group or program specifically for subkings of children with rare diseases.
- Help them connect with others in similar situations . Encourage your child to connect with other siblings of children with rare disease. They can find support and understanding from others who are going through similar experiences.
I highly recommend checking out The Courageous Parents Network’s video
Rare Disease in Children: Voices of the Siblings
*Jessica Ruth is the Executive Director of Treehouse Tribe and a certified Sibshop facilitator with a Masters in Special Education. Her dedication to supporting families of individuals with disabilities led her to volunteer at the CSNK2A1 Foundation, where she serves as a sibling support educator. Jessica's expertise and commitment make her a valuable asset to the OCNDS community.