I don’t think I’ve ever fully hashed out, in my mind or out loud, what it was like finding out Calvin has autism. Because the thing is, with autism you don’t just wake up one day and find out, once and for all, what’s going on. That’s not the way it works at all. There’s definitely not some “diagnosis day” at the outset that gets things rolling, at least not for us or for any families I know of. That’s a day that comes much later as sort of the coup de grace. No, the runaway train you’re on from the start of it all will have been careening many a mile in the dark before you’re ever even close to “diagnosis day.” In fact, that day ends up being just a formality that you welcome, in a strange way, with some relief because it means your child might finally stand a chance of getting the services he or she needs, because now you have a piece of paper with a diagnosis code on it, but I’m getting ahead of myself.
So I’ve never fully hashed all this out, this origin story. Well, let’s get cracking, then. Together, you and me. It’s been about 11 years since I boarded this train, but better 11 years later than never.
Finding out your child has autism. How it works is kind of like this:
You get these small hints, clues, you take them in, kind of little by little, but then you toss them back out again, at least some of them. You keep some, throw others away, then switcheroo the ones you keep and the ones you throw away, and it goes on and on like that for some time, in the beginning. In other words, for a few days maybe you go, naah, everything’s all alright, this is all my imagination, or somebody’s imagination, can’t believe everything you read…but then a few days later you go, hmmm, maybe not so much, maybe there is something to this. You might be reading a book about autism and throw it as hard as you can across the room. And later pick it back up, gingerly, like it has cooties. Eventually you throw it again, never mind the mark it leaves on the wall. And back and forth you go.
It’s also a little (ok, a lot) like being pelted by rocks, one at a time, at varying intervals, so that you never know when one is heading right for you. In fact, at first, you don’t even notice you’re getting beaned in the head with a rock. You kind of disregard it, believe it or not, because after all, you’re busy, you have a lot to take care of, you’re taking care of a little disabled person and you don’t even know yet that he or she is disabled, for chrissakes. Anyway, you get hit by the rock (whap), you shake it off because you’re too busy for trivialities like a rock flying into your head, but then, maybe a week or a month or six months or a minute later, whap, another rock.
Maybe I’d better start at the beginning.
I had my second baby, a boy, 22 months after my girl, and at first, all was well. Pretty much. He did have a certain look about him, my sister and I agreed on the word “disgruntled.” It was as if now that he was here and committed to being in the world, the running monologue in his head was something like, “Why did I think this was a good idea…I mean, the people right near me are great, they hold me and love me and feed me, the food the soft lady makes is amazing, and she’s very snuggly about feeding it to me, but overall it’s cold and big and noisy out here and what I’d really like is for them all to just shut the fuck up and leave me alone.”
That was Calvin, at first.
But somewhere around a month in, maybe seven or eight weeks, his demeanor changed. I guess we won him over. He found his smile, and lawdy mama, that smile lit up the world. He couldn’t turn it off. He giggled and gurgled and laughed at me, at his dad, at his sister, at everybody. It was as if something clicked and he went, ok, maybe this wasn’t such a bad idea after all, I think I may like it here.
But then, some months later, as he became a toddler, something changed again. Changed back. Why did he change back when he did? Why the regression? The “whys” of that, the “hows”–no one in the medical establishment apparently knows much for certain, or if they know, they’re not talking. I have my suspicions, but I’ve already gotten enough hate mail about those concerns lately from people who think “pro-vaccine-safety” means “pro-measles-plague,” so we’ll table that discussion for another time when I’ve gathered my strength back adequately. I can only handle so much of all this at once, ya feel me?
Anyway, moving on, at around the time most babies start talking, Calvin got quiet and aloof. I didn’t notice it so much at first. Why? Oh, I’ve tortured myself over that a whole lot. I guess it’s because I was so connected to him that I didn’t notice the quiet? I’m Mommy, I had the milk supply right on my person, I was number one. I’d later be told about how he didn’t make eye contact, and maybe he didn’t…with most people, but he did with me. I had his undivided attention, what did I know? And after all, he was the second child, and Gracie-girl had plenty to say, so I figured he was just taking his time, letting his chatty sister do the talking for now.
“Why isn’t he talking?” my mother would ask. I’d huff a little, oh you remember how it was with Dee Dee.
My sister was born 22 months after me, and I never shut up, so she kept pretty quiet herself until one night when everyone thought she was asleep and so they turned out all the lights. She didn’t like that one bit. “Toyn dat wight back on!” she yelled, in soon-to-be-legendary fashion (she had a Brooklynese Elmer Fudd accent going on at the time that she promptly grew out of… sadly, it was soooo cute). At any rate, my point is that when something came up that Dee Dee needed people to hear, and she was done being drowned out by her yattering sister, she found her voice. That’s what would happen for Calvin, I was sure of it.
Except it didn’t.
One day, Cal was maybe a year and a half old, my husband remarked, “He seems sad.” I argued immediately to the contrary. He certainly does NOT seem sad. He’s just quiet. He’s the second child. He’ll find his way.
You see, I wasn’t buying into the whole “Cal has a speech problem thing.” But, then again, I was surrounded by a literal Moms Club full of moms, and several had kids with delayed speech. They’d done this cool thing where they’d gotten the county person to come into their homes, evaluate their toddlers, decide they needed some speech therapy, gotten them the speech therapy, and, presto, talking toddler. It was called Early Intervention or EI. What could it hurt? I figured they’d come, they’d check out my boy, we’d get some nice speech therapist to come in for a while, and that would be that. So I called and they came.
But that was not that, and here’s where things get…I guess the word is weird. I was alone with Calvin that day. Grace was at preschool, Mike was at work. It would have helped, I guess, if I hadn’t been alone, if I’d had another grownup around to help me absorb the information, but that’s not how it went down.
Three very nice women showed up at the appointed time. That kind of surprised me, I didn’t know there’d be a committee. One was a speech therapist, one was a SEIT (stands for “special education itinerant teacher”), and one was their county overseer. They oohed and aaahed over Calvin and his adorableness, started playing with him, walking around the house with him, and so on.
As they were doing their thing, though, I noticed something I’d never noticed before. Calvin didn’t respond to his name. What? When did this start?
Over and over again, one or another of them would shout out “Calvin.” They’d vary the tone, the volume, the cadence, the distance, where they were standing or sitting in relation to him. Nothing. Crickets. Not a glance, not a turn of the head, not a scintilla of a sign that anyone was trying to get in touch with him.
Is he deaf? Is my baby deaf? Did he get hit with half a Helen Keller overnight and I didn’t notice? WTF is happening here? I remember grabbing a toy I knew he liked and turning on the music and he turned right toward it. Nope. Not deaf.
Calvin. CALVIN. Caaaaal-vin. CAL? CAL!
Everything went a little blurry after that. I remember them asking me about some sensory things they saw him do. I’d be sitting in a chair and he’d crawl behind me and kind of wedge himself between my back and the cushion of the chair, squeeze himself in there. He did it all the time. I’d thought nothing of it. Was I supposed to think something of it?
He also liked to repeatedly tap his palm with the index finger of his other hand. And he had this habit of taking a toy, like a block for example, and putting it on his shoulder and letting it roll down his back. Over and over, like he liked the feeling. Did that mean something was wrong with him? I started sinking in invisible quicksand.
By and by they were wrapping things up, I was politely trying to hide that I was hyperventilating just a little bit, and one of them handed me a piece of paper. It think it was SEIT girl who handed it to me. Just handed it to me. Didn’t say anything about the contents. I glanced at the paper and it was a checklist, and the heading at the top had the word “autism” in it. (I still think about how weird it was that she’d hand the paper to me without saying the a-word…like maybe they weren’t allowed to say the word, not doctors, authorized for hand-outs only…so so freaking weird.)
Ok, now I was really sure I was having a stroke. I’d seen Rainman a thousand times on cable. What were they even suggesting? I have a little guy who’s 2 years old and not talking, and he likes to be squished into tight places, and he ignores you when you call his name, and that means he has this monumental, devastating, debilitating, grotesque horror called autism? I put the paper down and pretended I hadn’t seen it and thanked them for their time and they told me someone would be in touch once their report was written up.
That was the end of the visit, except for one thing. Before I even knew what was happening, I was being gathered into a hug. The speech therapist, a big full-figured lady, the last to head out the front door, had gathered me to her bosom. She said into my ear, “You knew something was wrong, I’m sure. Now he’ll get what he needs.” Then she left and I was alone with my boy.
I don’t remember if I said anything back to that woman before she let go of me. I was in a foreign, frozen, numb place. I do remember screaming inside my head, “KNOW SOMETHING WAS WRONG? ARE YOU FUCKING KIDDING ME? NOTHING WAS WRONG!!!! BEFORE YOU GOT HERE I HAD A TODDLER WHO NEEDED SPEECH THERAPY, AND NOW YOU’RE LEAVING AND HE HAS AUTISM! BULLSHIT!!!!!” (Insert “Denial isn’t only a river in Egypt” quip here.)
I also remember tearing the checklist into a million pieces and burning it in the sink and wondering if I was going to set off the smoke detector. I hoped I wouldn’t. Cal had fallen asleep on the windowseat and that would have been a rude awakening. Rude awakening. That’s funny. I am so funny.
I remember picking my baby up from the windowseat, after my ceremonial sink fire, carrying him up to his crib, laying him in it, and staring at him for a long while. The room was sunny and warm, it was a beautiful summer day, in June I think. I remember starting to cry, but not knowing for sure what I was crying about.
Because they were crazy. Autism. He isn’t what autism looks like.
Aha. That was the problem. He was EXACTLY what autism looks like. But I didn’t know. I knew Rainman. I knew movie savants who can look at a pile of hundreds of toothpicks spilled on the floor and tell you the exact number in the pile. I knew the confused looking geniuses with crazy hair who sat mutely at pianos and played Rachmaninoff concertos without a second of formal instruction.
I knew nothing.
Calvin is 13 now, and there’s so much I could tell you about what’s happened in between that June day with the three ladies, back when he was a toddler I could carry to his crib, and today, now that he’s a strapping teenager who outweighs his strapping dad. One moment that evaluation day seems like an eon ago, and the next moment the time between then and now shrinks to a shimmering pinpoint and vanishes, and I’m back there, looking into the crib in wonderment and some other feeling that didn’t know whether or not it was supposed to be despair.
I guess I know a lot more now about what autism is, what it DOES look like, how different it looks at age 2 and 4 and 6 and 8 and 10 and so on. And how no two kids who have autism will look the same to you…you may see resonances, but they won’t be the same, they won’t fit in the same box. I’d like to talk to you all about this in time, stick with me and stay tuned for my book, always in progress, somehow I’ll get it done. I’ll still be learning new things about this weird world so many of us have been thrust into, but I’ll get it done. And then I’ll write some more, because I’ll need to keep learning.
In the meantime, what I want to leave you with is something this whole experience seems to be trying to teach me about (one of the many somethings).
Trauma. Ah, how cheerful, aren’t you glad you tuned in? Bear with me, it’s not as bad as it looks…except when it’s worse.
A particularly big-deal philosopher (Kierkegaard if you wanna be fancy) is famous for saying that life can only be understood backwards because it has to be lived forwards. Well, if that’s true about life, it’s REALLY REALLY REALLY true about trauma. Those rocks I told you about…the ones I barely noticed at first? Well, it had to be that way. I had to let them glance off me or I wouldn’t have been able to keep moving, putting one foot in front of the other. Looking backward, I can do a kind of post-mortem, sort things out, try to understand. But in the moment, moving through the meteor shower autism parenting can be, too much “trying to understand” won’t get ‘er done. Ain’t nobody got time for that.
But they leave their marks, those rocks, don’t they? And they never stop, by the way. It’s like each rock has a little label hanging from it. One might be about your kid smearing poop everywhere, or leaving paths of food everywhere, and when will he ever stop doing that, and when will you ever have the energy to make everything clean in your home again so that you’re not embarrassed to have people over (maybe never). Another rock label might talk about when something hurts on him and you can’t figure out what it is because he can’t say. Another is about his heartbroken tears and a look on his face that seems to come from some infinitely deep well of sadness that he doesn’t have words to explain. Another is about how you can’t cut his hair anymore because even with 4 adults to hold him down it’s become too dangerous, he’s too strong, someone will get hurt. Another is about driving him to an unfamiliar place, like a furniture store, or a restaurant, and him trying to charge away through the parking lot like an angry bull because he’s afraid wherever he is might be a bad place, maybe they’ll try to cut his hair, maybe it’ll be a doctor with a needle, maybe someone’s going to call the police and report a child abduction in progress (that last one is my nightmare, not his, probably).
Sometimes I get very down on myself. Why am I so ineffective in so many ways, I wonder. Why is it so hard for me to get anything done? Why does completing a task as straightforward as making a sandwich branch off in so many directions that by the time I’m eating the sandwich I’ve left a trail of knives and mustard and I end up going back fixing the damage that feels for all intents and purposes like someone else did it? Where was I while I was making the sandwich, where did I go?
What’s going on?
What’s going on is trauma. If you’re reading this, and you’re parenting a child with autism, you, along with me, need to start to understand trauma. Where did I go while I was making the sandwich? I floated away for a minute or two, got up in the air above the rocks that are always flying everywhere, took a few breaths, then sank down again, hopefully a little more ready to deal with the meteor shower nearer the ground. That’s what the trauma of autism parenting is about, all those hits that just keep on coming. Think about that for a minute. All those rocks. All those hits. Rising above them now and then when you can, then coming back down readier to face the music.
By the way, about those rocks, those boulders even–ever wonder about how you’ll make it? Do you wonder about whether one of them, or a mountain of them, will finally take you down for good?
No. They can’t. They haven’t. They won’t.
When you feel ineffective, or useless…when you feel like you don’t have what it takes, remind yourself. There will be rocks. Lots. But there’s a secret truth you can count on. I don’t know why I know it, but I know it. I’m going to whisper it, because it’s weird.
Psst. You’re a diamond. And so am I.
You might look and feel like a soft human person, susceptible to being crushed under a rock, but that’s just smoke and mirrors. You don’t often notice your diamond self, I know I forget about mine all the time, but that’s what we are. Damn straight, we are. Hit a diamond with a rock and see what happens once the dust settles. Not a scratch on it.
How do I know we’re diamonds? Easy. It’s because we’re still here. If I wasn’t, and you weren’t, made of sterner stuff, we’d have been crushed to pulp by now. But no. We’re still here. Loving these kids, soaking up their goodness, learning how to craft a world where they can live in the peace and dignity and happiness they deserve. Teaching others what it looks like to love and honor these children, and the adults that they’re hurtling toward becoming, unconditionally. Period. Not because of what they can or cannot do, not because of some kind of prize-winning life performance or achievement, but because of the sheer fact that they exist, that they ARE. The way everybody is supposed to treat everybody, by the way. (If only…)
So let them come, those rocks. Then kick them to the curb. You’ll forget sometimes, but you can handle it, ass-kicking diamond that you are.
You and me both.
Tracy Stroh is a freelance writer, editor, singer, and stress-crocheter. She’s working on a book with a working title of Mothering Autism: It’s Not Funny & It’s not Pretty . . . Except For When It Is. She lives in utter chaos—I mean, upstate New York—with her husband, Mike, their two kids, Grace and Calvin, and a guinea pig named Pippa.