I Wanted To Blend In, But Special Needs Mean Standing Out
She leaned toward me as she said, “I’d always wanted to blend. You know? I never wanted to stand out. And when I had my son, I knew that I would have to lay that down, and it was hard.”
My new friend Kristy was sharing her experience as a mom to a child with special needs, speaking about her challenges in a straightforward, matter-of-fact way.
It takes courage to speak one’s truth to a (relative) stranger, and I admired her for it. I leaned in, listening. “I know just what you mean,” I said. “And it is hard to give that up.” Kristy knew that my younger brother Willie has autism, and that I’d lived in L’Arche (an intentional community wherein people with and without intellectual disabilities share life together) as well.
Knowing this, Kristy also knew that I’d been on the receiving end of odd looks and critical stares. She knew about wanting to run and hide when caregiving got to be too much. She knew about needing ‘different’ foods, noise levels, and the social awkwardness of adaptive equipment. She knew, because she’d lived it, too.
Even so, Kristy couldn’t have known what was in my mind at that moment. I was thinking of a calendar I’d kept in middle school, wherein I recorded what I wore to school each day. My rule was to avoid repetition of outfits for as long as possible. Sitting across the table from Kristy, I remembered filling in the details of my clothing choices every day. I’d used a red pen to log my attire. Red, the color of criticism.
Memory fails to call up a catalyst for this compulsion. Did someone say something harsh to me? Did I overhear a heartless comment about another girl repeating her outfits? Or was it simply a result of the rampant insecurity that every middle school student faces?
I may never know how it started, but I know why I did it. It wasn’t to stand out or be original. On the contrary, I wanted to blend. I wanted to be invisible. I didn’t want to attract attention, and I believed repeating an outfit would do that. I wasn’t good at recalling what I’d worn week by week, so I devised a system that would remember for me.
I clung to my calendar because I didn’t want to face the truth: being Willie’s sister — being fully myself, for that matter — meant that I would never really ‘blend’.
When Kristy talked about laying down her desire to fit in, I saw myself tearing the pages of that calendar and throwing them away. I saw myself inviting friends for a sleepover, though we all acknowledged that Willie would probably have a meltdown. (He did.) I saw myself going out to supper with members of L’Arche, feeling proud to be with them. And in all of these memories, I saw the mercy in not getting what I wanted.
I look back on that compulsive pre-teen now, and I want to take her into my arms. I want to say: Honey, you don’t have to do this to yourself. You’re loved as you are, and no amount of outfit repetition can change that.
I know that being different feels like a curse, rather than a blessing. It’s hard to believe this now, but it is going to be all right.
I wish that she could hear me … and who knows? Maybe she did. Maybe an older, wiser self gave her the courage to throw those red-lettered pages away.
What I know for sure is that being Willie’s sister (and a friend to the people at L’Arche) has unraveled the old me. It’s helped me to embrace the beauty in neurodiversity, and the fact that real, loving relationships are worth so much more than ‘fitting in’ with any crowd.
There are times when I feel the old desire to be invisible sweep over me. But then I remember that being invisible doesn’t square with what my friends at L’Arche have taught me: to let your light shine.
And as someone who would rather have more books than more clothes, there’s no hiding the truth …