There are headlines I see on Facebook every day of kids with special needs shattering expectations and doing extraordinary things. While these kids may be different, they still have the ability to advocate for themselves and their community by showing that they can still contribute to society despite their differences. I love the potential these stories have to help normalize neurodiversity; they never fail to bring a tear to my eye.
However, I sometimes worry that these stories are to the special needs community as photoshopped pictures are to body image. They create a standard or “box” that people may subconsciously place those idealized people into. It makes some start to believe that all autistic people are savants like Rain Man or are able to create and verbalize completely unique ideas just like Temple Grandin did with her cow hugging machine.
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My older brother has autism, so I speak from experience when I say that, most of the time, mental disability looks nothing like that.
Life for our family looks like trying to get him to walk from one place to another in public without his OCD causing him to walk backwards and forwards again. If we don’t keep a close eye on him, he’ll end up retracing his steps and finding himself sucked into a crowd that he can’t get out of.
Life for him is mostly silence, interrupted with some singing to himself or three-word requests following the “I want ____.” format that took us forever to teach him. He doesn’t communicate like someone who is crawling out of his skin trying to tell us his deepest desires.
Life for us looks like sometimes pushing aside the idea of family vacations or days out because it’s so difficult to take him to crowded places. We can go to the occasional amusement park so long as we have passes that allow us to skip the lines because he can’t stand still for that long. With that, though, comes rude remarks from people about how we’re “cheating” and “should have to stand in line like everyone else.”
Life looks like me planning to take my brother into my own home when my parents get too old to take care of him themselves. My mother hates that I’ve put that on myself, but I’ve always assumed I would take him in for as long as I’m able to when the time comes.
Life with my brother is living with the fear of him out-living his siblings, because I want someone to truly know him well enough to advocate for him the way we could.
I am thankful for shows like Born This Way or people like Chris Ulmer with Special Books by Special Kids who share both the good and the bad of living with a disability, but also how absolutely beautiful that can be sometimes. The media shows kids who do things that will make your heart melt, but that’s not how all special needs kids are. I sometimes worry for new parents who might see the media’s idealized image of what mental disability looks like and feel like it’s possible to make their child more “normal” than they are capable of being instead of being patient with their child and loving them where they’re at.
Life with my brother is normal for me, because I have nothing else to compare it to. I couldn’t imagine my life without him, or the lessons in patience and humility that he has taught me.
There are some glorious times when he shows that he does have a wicked sense of humor. He’s ticklish, has unique interests and shows his love by being a presence with my family and me. As my grandmother always told my mom, “he knows who his people are,” and he is still able to show it despite who he is.
My brother is nothing special: He simply is, and I believe that’s beautiful.
