I did something today I swore I would never do. Actually, I did multiple things today I swore I wouldn’t do.
The first thing I swore I would never do but did today, was carry my seven–almost eight–year old to the car from my basement bedroom. The second thing I did today that I never intended to, because universe forbid I be, “that mom,” was let my child bring both their blanket and stuffy into a clinic with us. Oh, a third, just unexpected thing, was sitting on the exam table to snuggle my almost-eight-year old.
I’m reminded time and again how parenting looks different when your child is on the spectrum. It just does. The amount of choices I’ve made, things I’ve allowed, that I swore I never would is ridiculously high.
Is it ridiculous that I carried Griffin to the car this morning? Maybe. Well, it looked ridiculous, because I’m 5’6” and Griffin is probably 4’5” and edging close to 60 pounds. Is it ridiculous that my second grade child brought in a raggedy, thread worn blanket and a Creeper stuffy that he held onto for dear life? Maybe.
But, let me tell you; it’s far more ridiculous that I feel judged by people for those things. It’s far more insane that other parents and people side-eye my family and I when we’re dealing with a meltdown or moment in public. Or give us a wide berth, that’s a personal favorite.
I get it: G doesn’t look like a stereotypical special needs kid. His initial diagnosis was ADHD, followed by the high-functioning ASD diagnosis. He’s smarter than is good for him, well-spoken when he’s comfortable, and makes eye contact.
He’s still autistic though. And when he’s sick? It’s the hardest thing, parents of the world. It really is! When he doesn’t feel well: emotionally, physically, mentally, whichever, he shuts down. As he progresses to feeling worse, he gets to a point where we hear more whines and noises than we do words.
As we’re learning how to help Griffin navigate the world, there are some things I would call “early warning signs” of sickness. If you have a kid on the spectrum, maybe you’ve noticed some of the same things, or maybe this can help you next time it happens.
I don’t pretend to be an expert, but this is the real-life experience that experts can’t always provide for us.
Tiredness
One of the first noticeable changes in Griffin is that he is more lethargic. It usually starts so subtly that we have to think back to when it started and how long he’s probably been feeling shitty.
Griffin has always been pretty good about waking up, but when he’s starting to get sick, he fights getting out of bed, and is more noticeably tired before school and bed.
Whininess
I know it’s not kind to call your kids whiney, but…there’s no other way to put it. Griffin gets whiney as hell when he’s getting sick. Every little inconvenience, every little slight, ends in whining and often tears.
I don’t discourage emotions of any kind, but whining is a fine line for me. I can’t handle it, so it’s usually noticeable. One day is easy to write off as a lack of sleep or just one of those days; three days in a row? He’s probably coming down with something.
Indecisiveness
Okay, hear me out on this one. Griffin is usually pretty decisive, I think because he knows what he likes, he knows what he wants. I imagine that’s common in most kids who have been diagnosed with ASD. This past week, I’ve noticed that almost every question is met with a longer time before he reacts and/or answers. It’s even worse when he’s asked to choose between things, or what he’s going to do. The overwhelm his little brain feels when he’s trying to get healthy seems to slow down his processing, just a little.
What You May Not See
Griffin doesn’t seem to have the same sense of pain as I imagine I do. Today at the clinic, he told the nurse, doctor, and me that his throat didn’t hurt. They said it looked almost raw. He had to have tubes when he was nine months old for reoccurring ear infections, and you know what? He never had the typical symptoms for that either. Mostly he was just fussy when he was laid on his back.
While neurotypical kids are able to tell their parents or caregivers that they’re not feeling well, for some autistic kids that’s not the case. They don’t have, or can’t find in that moment, the ability to share with us what they’re struggling with or feeling at that moment.
In Short
Having a neurodivergent child can be hard for a lot of reasons. I can honestly say that the fact my verbal child can’t tell me what he’s feeling, physically or emotionally, wasn’t something I considered.
I guess that’s the thing about having a child with autism spectrum disorder: every day is an adventure of a learning experience.
