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  • melissabondwriter

The Question You Wanna Ask: What's it Like Having a Child with a Disability?

Hi there, lovelies –

I’ve decided to answer the question so many of you have about my beautiful/different boy. No, that’s not quite right. It’s a question you have about life, really, about how we all manage when things don’t go as planned. I think this may be why only some of you ask the question out loud. Some of you don’t ask because you’re afraid to hear the answer. It could be awkward. Or painful. One of us could burst into tears and there’d be no tissue in sight, and it’d get all kinds of messy. So, yeah. I get it.

But before I get into the question, I want to tell a quick story. It happened just a few hours ago, outside Tulie, my all-time FAVORITE French bakery in Salt Lake City. It’s one of God’s gifts, to have a bakery like this in Salt Lake. When I was pregnant, I ate their croissants for breakfast, lunch and dinner. The Tulie butter croissant was pastry magic for my first trimester barf-a-thon and to this day remains the best comfort food I can imagine.

So, today I dropped in for one of those buttered to high heaven croissants. When I stepped outside there was a mom on the sidewalk holding the arm of what looked like a 13-year-old girl. The girl was holding a little stuffed lamb. She was turned away from her mother—pulling back—her head twisted down against what looked like something painful and loud. She was wailing and the mom was trying to get her to move, to unstick what was stuck in the girl so they could get into the car and go home. I saw the mom and the girl with her little stuffed lamb, and I thought AUTISM. And then my heart did that thing where you feel so much at once you get hot and kind of choked and raw all at the same time. I looked at that mom and I thought I see you. And I looked at the girl with her lamb, feeling and hearing so many things I couldn’t hear or feel and thought I see you too, honey. It’ll be alright.

And I know that many of you wonder: What’s it like to have a child with a disability?

And after the question, what often happens, is sympathy: It must be so hard.

I can’t tell you how many times well-meaning people have said this to me. And to be perfectly honest, I was one of those well-meaning people before my Cassius came around. I just didn’t know. Kids with disabilities sure looked hard. That girl pulling against her mother and wailing into the open sky looked hard. My boy, diagnosed with Down Syndrome early and Autism just a few months ago, has often looked hard. And if I’m going to be honest—sometimes he is. Difficult. Sometimes he doesn’t watch for cars and he puts his pants on backwards and he yells “penis” with gusto out the car window. Recently he was chatting with a young woman at a climbing gym I’d brought him to, and he told her that he liked her hair. “Also,” he said, pointing, “I really like your boobs.” Gotta love the kid for his candor.

There is a Sufi saying I’ve loved since I was in my 20s. “Break my heart; break it again so I can learn to love more.” When Cassius was born my heart broke not because he was diagnosed with Down Syndrome, but because having Down Syndrome added such depth of tenderness to my already tender heart. Part of me just split open. Cassius was not at all what I had planned. The way in which my heart reformed around this tenderness has turned me into a radically different person. My vision was much narrower back then. I lived in a very comfortable hallway of ideas and concepts of the world. Cassius ripped that roof right off.

So, this is how I’ll answer your question of what it’s like to have a kid with a disability: It makes for an incredibly tender and beautiful life.

If you didn’t know that he has Autism and Down Syndrome and I simply told you that my boy is honest to a fault, deeply in touch with his feelings and the most purely loving human I’ve ever known, you’d say I had it pretty good. And I’d agree. Because I do. His disability is a bunch of hogwash. He showed up in this world with a brain that’s different than mine. He sees and feels differently than I do and it’s with absolute purity. I feel more than just lucky to have him around, I feel honored.

So, there you have it. It’s an absolute honor to have a child with a disability.

And yes, sometimes it’s hard. But all kids are hard sometimes. We’ve all got our brand of special needs. Some of us have very complex architectures around our heart or hide out in any number of ways. I want you to know that I see you behind that architecture. And my invitation to you the next time you meet someone who’s—you know—different than you are is to sit with all the feelings. It’s just you noticing your brand of narrow hallway. I invite you to say a warm "hi you," to that person. I invite you to let them tear the roof off. #autismlove #aspergers #dankmemes #autismlife #autismspeaks #downsyndrome #actuallyautistic #meme #autismsupport #autismspectrum #autismspectrumdisorder #autismparents #specialeducation



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