My son has an autism spectrum disorder. He doesn’t wear a sign on his back indicating as much, and we don’t generally mention it. Not because we’re trying to hide it, but because there are so many other interesting things about him that come to mind first: He loves “Star Wars” and “Diary of a Wimpy Kid.” He’s wicked good at science and can remember crazy details about books we read when he was a toddler. He’s also really funny and delights in bathroom humor. And, my goodness, the boy can dance.
In other words, he’s a 10-year-old boy.
Sometimes, though, someone will ask why he plays in a different soccer league than his sister, or has a slightly different homework assignment than the other kids in his Cub Scout den, or doesn’t always answer people right away. (He’s not being rude, it just takes him a little longer to figure out what he wants to say).
It’s a matter-of-fact “Well, he has autism,” and then we move on. It’s no big deal to us, it’s just who he is and has always been. The people on the other end of the conversation, though, always seem to be left fumbling for words. I get that. To me it’s not much different than saying “Well, he has blue eyes,” but that’s not how people take it. They feel like they need to say something. So with the very best intentions, they often end up saying exactly the wrong thing.
I’m sharing the four things I least like to hear. Not because I’m not appreciative of the incredibly kind thoughts that are behind them, but because I think people honestly don’t know what to say to parents of kids with special needs.
“I’m sorry.” For what? I have a great, healthy kid. He’s smart and funny and totally honest — all the time. He is the most sincere person I’ve ever met, and he does tons of nice things for me every day, just because. Please don’t feel sorry for me or for him. He’s not broken or less than. He’s just different (thanks for those words, Temple Grandin). Those differences have changed my life and my perspective on the world, forever and mostly for the better. No apologies needed.
“Wow, you’d never know it to look at him!” Right, well, like I said, there’s no sign on his back. I think people mean this to sound comforting: “He looks just like a normal kid!” But I already know that. He looks just like every other boy his age, which is why people don’t understand when his behavior doesn’t match his size. Pointing out the obvious almost makes it sound like it’s astonishing that a kid who looks like every other child could possibly have a disability. Autism affects 1 in 68 children according to the most recent numbers for the Centers for Disease Control and Prevention. There are thousands of people out there with “invisible” disabilities. So it’s not surprising at all.
“All kids do that/struggle with that.” Well, yes and no. Many of the things my son struggles with are problematic for other kids at some point, sure. But it’s not the same. For us, the struggles are prolonged, and often more difficult. Sometimes it feels like you have to slide backwards a few inches before you can creep ahead a few more. Sometimes it feels like nothing is easy, ever. The up side? The victories take my breath away. Something as simple as the first time my toddler climbed on a swing and said, “Push me!” is enough to leave me in tears. That makes everything worthwhile.
“I don’t know how you do it.” Mostly, this refers to hauling him to therapy or fighting with insurance companies or advocating for him at school. Essentially, having his back and making sure he has everything he needs to succeed. That’s not any different than what any parent does for their child, special needs or not. You don’t think about it, you just figure out what you need to do, and then you do it. On the flip side, moms of kids with special needs aren’t saints or angels, either. Our kids can be frustrating and annoying and drive us up the wall, just like other kids.
Later this week, I’ll share the things we warrior moms love to hear. Hint: They’ll be a lot like the things all moms love to hear.
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