“She ruins everything!” I said to my mom when I was six and my big sister bumped into an art project I’d been working on all day.
And again when I was twelve and she wanted to hang out with me and my friends at my slumber party.
And again when I was seventeen and she snuck upstairs when I was watching a movie with a boyfriend.
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 “retards” 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 perfect and 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 after he’s just said “He ruins everything!” referring to his brother with 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. And it’s because of that experience I try to remember a few things.
- I don’t shame my typical son for the way he is feeling in the moment. I want him to express how he is feeling to me (or his dad) instead of taking it out on his brother. I usually say something like, “I know you’re angry right now. I’m sorry James broke the Lego creation you had been working very hard on building.”
- I remind him our feelings can lie to us. We talk about this often, not just in the heat of a tense moment. Feelings can distort the facts and we need to focus on the facts. “You may feel like James broke it on purpose, but do you really think that’s true? You know he cares for you and doesn’t like you to be upset.” Or, in an embarrassing situation, “I know you feel like everyone is looking at us because James is making noise, but most people are just glancing at us and then focusing back on their food and friends. There are lots of people in here making noise, not just James.”
- I celebrate the accomplishments of both boys. Sometimes special-needs siblings can feel ignored or unimportant. Especially when they are younger and the special-needs child is getting attention for skills the typical sibling has already mastered (like tying shoes or eating with a fork.) Last summer James started answering yes or no questions. Yay! And David remembered to answer “yes ma’am” and “no sir” when appropriate. Yay! We celebrated with both boys.
- I give him opportunities to grow in areas of interest. When I was young, I loved to read. That was my thing. (It’s still my thing honestly.) My parents made sure I had the latest Babysitters Club book and often let me stay up to read “one more chapter.” David is into theatre. Right now, that is his thing. So we go to auditions. We run lines. We show up on opening night. We give him lots of attention and praise as he figures out what he’s good at and wants to do.
- I make sure we have one-on-one time together. This isn’t always easy, but I think it’s so important. I homeschool our typical son so we get lots of time together. And we recently took a trip, just the two of us. I’m sure it will get harder to make happen as he gets older, but I’m making it a priority now.
- I say thank you every day. Don’t we wish someone would do that for us as special-needs parents? It probably doesn’t happen, but we can make it happen for our typical kids. Thanks for holding your brother’s hand to cross the street. Thanks for standing up for your sister when those kids weren’t nice to her. Thank you for going to his favorite restaurant again. Thank you for understanding why we had to leave the party early. Thank you.
Being Syble’s sister has brought more blessings than I can count. She has made me the person I am and I’m thankful. I pray David can look back and say the same about growing up with James.