There are a few things I have heard many times as Nolan’s mom.
“I just don’t know how you do it…”
“I don’t think I could handle it…”
“He is so lucky to have you guys…”
“What is that? SPIT?!?!”
Yes… Nolan plays with his spit. And yes-- it’s entirely disgusting. That’s not what I’m talking about here, though… That’s sort of a topic in and of itself.
I never know how to react to the first two, though… I know they’re meant as compliments, but of course I’ve gotta be the girl who goes and makes it awkward…
Usually the exchange goes something like this--
Whoever- I don’t know how you do it…
Me- Uhhhhhhh... (deep breath and a half-assed smile) huh huh huuuuuuhhhhhhhh...
It’s not pretty.
Usually I’ll choke out a feeble, “Uh, thanks…” But it always feels like a strange thing to need to react to. Don’t get me wrong, I understand what they're saying… I’ve probably just over thought it an absurd amount (which I’ve been known to do about pretty much everything).
So here’s the thing-- I don’t know how I do it either. It's not a superpower. It has nothing to do with my abilities, energy level or some instinct or physical characteristic that has somehow specially equipped me to be the parent of an amazing autistic kid.
Honestly? This is normal to us-- it’s all we’ve ever known of parenthood. Sometimes I want to tell parents of neurotypical kids that I don’t know how THEY do it. Seriously-- I’ve been known to be genuinely caught off guard when I ask a kid something and they actually answer me with words. That probably sounds bizarre, but it’s alarming how often I catch myself being surprised by a verbal response.
If a neurotypical child were to suddenly be added to our home, I’m not sure if I could adjust. While things like sensory aversions, meltdowns, communication devices and navigating the system to get him the services he needs might sound overwhelming to you, your lives sound overwhelming to me. I’m not equipped to deal with kids who ask for things they’ve seen on TV or at school, navigating which video games are appropriate for which ages, tween fashion, dance/football/choir/social calendars or the thought of my teenager having access to the Internet.
I just don’t know how to navigate those things. That’s because when I was first learning to be someone’s parent, I was learning to be Nolan’s parent. I didn’t learn to be the parent of a kid who went to birthday parties and played soccer in elementary school. I didn’t learn to be the parent of a kid who joined band or tennis in middle school and played video games at every opportunity. I learned to be the parent of a kid who works his ass off all day every day just to get by in a world that wasn’t designed for him.
I would argue that any parent learns to parent the kids they have. I remember my mom saying that my oldest sister, Terri, was mellow and happy, and my next oldest sister, Julie, was a very different child. From the stories I’ve heard, I don’t think they grew to be more like one another in their childhood or teen years at all. So while my mom may have had a year and a half head start on learning to be my Terri’s mom, she had to learn a new set of skills to be Julie’s mom.
It’s sort of like having a child who loves to play with Legos while your neighbor has a child who loves animals. Your weekend road trips may involve trips to Lego Land or building competitions. You’d probably know all of the best places to buy the hard to find pieces or the popular sets at the best prices. Your neighbor, on the other hand, probably knows all of the best zoos within a 4-state area and can tell you all sorts of trivia about bats and komodo dragons.
I’m not saying there isn’t some common ground with all kids… As parents we need to meet basic needs like food, shelter, sleep, activity and hygiene. And in some way, shape or form we need to take care of some more complicated needs like social interaction and education. It’s where things start to get more complicated that we start to vary.
But that’s where it starts to vary with all kids really. Maybe your kid is a dancer. Maybe they’re a reader. Maybe they’re obsessed with cars or sports statistics or music. Or maybe they have special needs. They’re all similarly different, and none is better than any other.
The one of those often-heard things that I always have a response for? “He’s so lucky to have you as parents.” He’s as lucky as any kid in a loving and stable home (which is pretty damn lucky these days, really), but he’s no more lucky to be with us than with anyone else. I always respond with the truth, though. “We’re lucky to have him.”
The truth of the matter is that we’re only “able to handle it” and do what we can for Nolan because he taught us to be the parents we are. Just like any parents, we’ve learned from doing. Our “doing” may have looked different than other parents along the way, but I’m pretty sure every family’s “doing” is different from every other family in existence.
All of the doing and learning are how we come to find our every day normal. And normal looks different from family to family, but it’s what we grow into as we learn from each other.
So what it really comes down to, at least for me, is that I’m not “handing” anything. This is my normal. Just like normal at your house might include picky eaters and fights over reading after bedtime, ours involves supervised bathroom trips and a whole lot of mardi gras beads.
How do we do it? We just do-- the same way every other family does. Just like normal.
Buena Vista Park- Alma, WI