I’m a special-needs sibling. My sister Syble, who has Down syndrome, is just fourteen months older than I am. Growing up in her shadow had challenges and blessings.
I’m also a special-needs mom. My younger son James was diagnosed with autism in 2010. I’m able to relate to my older son David and help him navigate growing up as a special-needs sibling.
Based on my experiences and what I’ve observed with David and other families, I believe there are three stages of development special-needs siblings experience. As parents, we need to be patient and understanding as our kids move through each phase.
1-10 years old: noticing differences
When the typical kids in our families are young, they are noticing the differences between their siblings and themselves. I remember asking my parents questions about why Syble looked different, wasn’t able to do what I could do, and why it was harder for her to pronounce words. I also knew she went to therapies I didn’t go to and she was in a special-education class (which at the time meant she went to a different school than I did).
During this stage, parents should answer questions honestly and not make their children feel badly for noticing the differences. Differences and questions are good, and in this stage we can help our children see that for themselves. This stage sets the foundation for how your typical children will accept their sibling and how they will accept their role in your family.
10-18 years old: focusing on differences
When typical children hit the preteen and teen years, they live inside their own heads and focus mostly on themselves. In one of my favorite books for helping parents navigate this age, the authors write, “As she becomes more aware of herself, she’ll become less aware of others around her. It’s a natural stopover in her development … we just don’t want her to stop there for long” (Are My Kids on Track? Amazon affiliate link).
Children at this stage are asking fewer questions about their siblings but more questions about how their siblings’ differences affect them. When they see each other in the hall at school, how will they respond? When the sibling’s behavior attracts attention when they are in public, the typical teen is asking how that behavior makes him look. In the early years of this stage, even same-age peers are thinking about how being a friend to someone with a disability makes them look to others. But as they mature, they are able to care less about what’s popular and more about what’s right. We just have to give them space to go through this normal stage and remind them to strive for empathy and compassion.
18+ years old: realizing who they are based on those differences
This is often the time typical siblings move away from home. They will meet people who don’t know they are a special-needs siblings. When I went to college, I wasn’t “Syble’s sister” anymore. I was just Sandra. But that meant I had decisions to make. When someone used the R word as an insult, would I stand up to them and explain why that wasn’t ok or would I let it go? When I was dating and the relationship started getting serious, I had to decide when I would tell him about Syble and what that meant for my future.
As the parent, this stage may be surprisingly challenging. You may feel like your typical child is hiding the fact he or she has a sibling with a disability. But be patient. You had years when you weren’t a special-needs parents, but your child has never not been a special-needs sibling. They need some time of independence to figure out how that changed them and who they are when they don’t live in your home anymore.
Each stage of being a special-needs sibling has its challenges and blessings. You can help your typical children focus more on the blessings when you patiently guide them through each one of these stages.
Sandra Peoples is a special-needs mom and sibling. She and her family live outside of Houston, TX where she serves her church as director of the disability ministry. She’s the author of Unexpected Blessings: The Joys and Possibilities of Life in a Special-Needs Family. You can connect with her at sandrapeoples.com
