Charlie is my 13-year-old stepson. He’s autistic, which for him means he’s non-verbal and developmentally delayed (like he’s developmentally a toddler in many ways). He’s loves water, pepperoni, and his iPad and music. He’s a big kid, 5’5” and about 170lbs of solid energy. He’s got the prettiest curly blond hair. He can get violent, usually self-injuring, but I always have some scratch marks and bruises from some meltdown or another, nbd. He is the lovey-est kid I know, loves hugs and kisses and can be just the sweetest. He’s also really smell oriented and likes sniffing things. So, those are Charlie facts that are relevant to this story.
I do most of my family grocery shopping at Wal-Mart, because it is cheap and sells 1 ½ pound packs of pepperoni and giant jugs of bubble bath for $3. I usually go on the weekends and take the boys because they like going to the store and Charlie is usually well-behaved and it gives Scott a quiet hour (which I then trade in for glorious naps). So, this past Saturday, I pack up the boys, head to the store and have a not so great trip; Charlie was a little agitated and I was in no mood to deal.
We finish our shopping and are headed for the parking lot, me pushing our very full cart. Cal is telling me about videogames or Captain Underpants or Beauty and the Beast, something. Charlie’s walking next to the cart like he’s supposed to be. There’s an old couple in front of us, because it’s Wal-Mart.
Out of the blue, Charlie let’s go of the cart, gently places one hand on the waist of the man in front of us, goes up on his tiptoes and sniffs the man’s neck behind his ear before the man can turn around, then drops his hand back to the cart. This all happened in the space of 2 seconds, but it felt like a year. I speed us up and get the fuck outta there, before the man can figure out what just happened and laughed all the way to the car.
Things like this happen with Charlie. He sniffs randos and touches other people’s carts. He is also very popular at our Food Lion and collects high fives from the cashiers, who all know his name. He hoots loudly and jumps up and down and doesn’t always respect personal space. Sometimes he stops in the middle of an aisle to bite himself. I get looks and hear mutters, although most people can tell Charlie is different and I have perfected my “He’s autistic what’s your excuse for being an a-hole today?” stare.
Y’all, there’s no point to this story other than my life is really weird sometimes. I mean, that guy could have gotten mad, I saw it on his face as he was turning around and could have caused a whole scene. One day it’s not going to turn out so well and I’m going to have to actually yell at someone, or get yelled at, neither of which I particularly want to happen. But until that time comes, I’m just going to say sorry, beat feet, and laugh all the way home.
At the beginning of the school year, Charlie had some big issues. We got regular reports that he was biting and hitting his teacher and aides. This isn’t an uncommon behavior with non-verbal children, but we only saw it at home when he was extremely frustrated, angry or in pain. It wasn’t a regular occurrence, so the fact that he was doing it at school was troubling. New town, new home, new school – new acting out. I, of course, felt super guilty for bringing them down here and his obvious dislike of the situation. We worried they were going to kick him out of school, that he was going to seriously injure someone, that maybe something bad was happening at school to trigger this behavior. Check out news stories of abuse in schools against autistic students – it’s absolutely horrifying how frequent and severe it is.
Luckily, this behavior settled down after a couple of weeks. A combination of Charlie getting used to the teachers, teachers getting used to Charlie, and vast quantities of pepperoni to get him to do as asked. He began getting more and more positive reports, he came home with crafts projects and started using utensils when he ate. There was an outburst every once in a while, but quickly diffused without injury to anyone. We were feeling pretty good, this experiment was working, we were a functional, happy family.
I’ve struggled with writing this post for over a week for a multitude of reasons. I don’t want to define the boys by their diagnosis; I don’t want to act like an expert; I don’t want to sound whiny; I don’t want to rattle off a list of symptoms like that expresses how our lives are. There’s just no way to do this gracefully in my head, so here’s a clumsy snapshot of the boys.
Autism changes the way you measure progress. It’s near impossible to compare your child with a “neurotypical” kid. If you try, you’re just going to see the ways in which your child falls short and that’s a disservice to you as a parent and your child as a person. So, normal progress charts are thrown out. Your victories are small and hard fought and usually short-lived, but when it happens, when that one thing you’ve been working on finally clicks, goodness does it feel amazing.
We’ve lived together as a family for almost a year and it feels like no time at all until I think about the boys last summer and the tiny changes we’ve made. Things that may not seem like much on the big scale, but in our house they were monuments. Little things that make me feel like a good parent, even when my throat is about hoarse from screaming and I’m looking at the dog’s crate as a reasonable timeout zone.
Charlie eats vegetables now. Before, if it was green, it wasn’t eaten. Now I can make him a salad and he’s happy. Right now he’s tearing up some baby carrots. 10 months ago, those would sit on the plate all night. But I’ve seen him finish carrots before his chips. It warms my tiny, food group loving heart.
The majority of my adult life was defined by insomnia. Scratch that – the majority of my life, period. Summer vacations involved a lot of reruns at 2am – which explains my deep, eternal love for Scott Bakula. Mornings were my enemy – to the point that I worked for several years on an overnight shift. It suited me – although I did start reacting to sunlight like Gollum.
I’ve been on all of the sleeping pills, the pills that aren’t for sleeping but have that as a side effect, herbal teas, supplements. I’ve cut out caffeine, tried meditation, set up a very specific schedule, exercised, and tried drinking myself to sleep. Nothing worked for more than a week, most not at all. I’d accepted my life would be lived in an exhausted haze with plenty of nature documentaries and QVC.
Then, about a year ago, I was suddenly cured. I was going to sleep by 10 and waking up at 6 like a proper adult. The change happened when I moved in with a friend – we’ll call her Shmauren – and her very energetic son, who we’ll refer to as Optimus Prime. Living with Optimus Prime was like living with the world’s most effective alarm clock. When he was up, so were you. And it became kind of awesome. I was getting a solid 7-8 hours a night; I was productive in the morning; I was ON TIME TO WORK.