Being fourteen months younger than my sister with Down syndrome wasn't always easy. We were a grade apart in school, in a town where everyone knew everyone else. I was occasionally referred to as "Syble's sister" instead of by my own name. When people made jokes about the kids on the short bus or used the r word, I had to decide if I was going to stand up for my sister and bring more attention to myself or just let it go. And even at home, I tried to be low maintenance to make up for the extra work and attention my parents had to put into her.
And that's why when I look into the eyes of my son David when he’s frustrated about a situation with his brother who has autism, I get it. I so get it. I get the frustration and the fear. I get the exhaustion and the embarrassment. I relive the moments I had at each stage I went through as a special-needs sibling.
I know the blessings of being a special-needs siblings, but I also know the challenges. That’s why I’m sharing this list of of seven phrases every special-needs siblings needs to hear.
“You have my full attention.” Special-needs siblings can feel like their needs are always taking a back seat to their sibling’s needs. Try to reserve part of your day for just your typical children. Maybe it’s at bedtime. Or when you’re washing dishes together. Or when you can get away to a movie.
“I’m proud of you.” We often celebrate the accomplishments of our kids with disabilities because they are fewer and far between. But our typical kids need to know we’re proud of their accomplishments too. And that we aren’t only proud of their actions, but also their attitude. We’re excited when they make 8 out of 10 free throws, and we’re also proud when they make friends with the new kid at school.
“I don’t know.” I can remember asking my mom, “Why did God give me a sister with Down syndrome?” Her first answer was “I don’t know.” Together we came up with lots of reasons (like how our relationship made me more compassionate) but “I don’t know” is what I needed to hear at that age and stage, and the assurance that I didn’t have to figure it all out. I just had to take the next best step.
“Let’s make a plan together.” This is important to say when you find yourself saying, “Not right now” too often. The answer may be “Not right now,” but there will be a time you can do what your typical child is asking you to do. Make a plan together to do it when it’s best for all of you.
“I understand how you feel.” When I had negative feelings, like embarrassment or frustration, I need to know my feelings were ok to have. My parents never shamed me for how I felt. They showed empathy and understanding. Now I can share stories from my childhood with David when he shares his negative emotions. I know how he feels because I’ve been where he is.
“I’m sorry.” I’m sorry we aren’t living a Plan A life (and the truth is, no one is). I’m sorry your brother’s limitations limit you too. I’m sorry your sister was having a hard morning and we’re running late. We can help our kids focus on the positive, but they also need to know it’s ok to not feel ok.
“Thank you.” Is that what we all wish we could hear each day? Just to know that we are seen and appreciated? Find something each day you can say thank you for: for help around the house, for extra patience, for being ok with leaving early. If you look, you may find lots of things you can say thank you for! (And you might even get a few thank yous in return!)
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 special-needs 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
