After a one-hour visit to my house, by the time you leave, you’ll have lost your mind. I’m talking insane. Bananas. Cray cray.
That said, this year Autism Awareness Month caught me off guard a little. I knew it was coming, but I had been so preoccupied these past months, up to my ears in autism that, by the time it got here I was like, autism awareness? Oh, please no. I haven’t got it in me. I’ve got so many other pressing autism issues going on right now that the last thing I want to write about is more autism. Can’t somebody else please do it?
But it’s April! And if you’re looking for autism awareness, you’ve come to the right place.
Even as I write this, my eardrums are being blown to bits by a gigantic church organ I willingly acquired for my 12-year-old son who has a fully-developed obsession with the instrument. He doesn’t take lessons, but he’s figuring out tons of songs on his own. This organ is legit. I bought it on Craigslist for $100, but the original receipt from the 1980s shows it was purchased for thousands of dollars. This organ is insane. It’s perfect.
As you can safely assume, I am oh-so-autism-aware. After 12-to-the-autismth power years of autism motherhood, we make way for autism in every aspect of life. We? I mean I. As a single mother, it’s all on me. This almost sounds like a word problem. Take one mom, one child, minus one dad, add one thousand railroad crossing bells, multiply it by autism, and divide it by a nine-piece chicken fry from Burger King and it all equals…
Oh, right, back to autism awareness.
The easiest – yet not the most painless – way to be autism aware is to walk right into our world. Take the full immersion trip to Autismlandia and really submerge yourself in the culture.
Let’s pretend that you are coming over for a short visit. You’ve just arrived and walked through the door. You’re looking around.
My house is so nice and cozy, you say. I say thanks and take your coat. There’s a sudden banging-about coming from somewhere in the house, upstairs, you suppose. It’s making its way to the stairs. It’s coming down. A boy with striking brown eyes stomps barefooted over and looks up and straightforwardly says, “Who are you?”
That’s kind of rude, you might think. Who am I?
You tell him your name and the boy repeats your name twice, three times. He then asks you, “What’s your name?” You say to yourself, I’ve already told you, kid. You tell him again. He repeats it back a couple more times. I watch as it all unfolds. I smile and introduce you to my son.
Tell the person your name, I prompt him. “Diego,” he says, bringing his right hand to his chest while looking at the floor. Nice to meet you, you say. He goes back upstairs. I lead you over to the parlor and offer you a glass of mommy juice, I mean, wine.
“So, how have you been?”
We chat in front of the fireplace insert I tell you was the first major purchase I made when I bought the house and, before long, Diego appears in the dining room with a wooden chopstick in hand and starts to ‘ding’ an empty water glass on the floor he’s got set up next to an elaborate display of connected Expo markers and toy railroad crossings with flashing red lights. You see that I’m oblivious to the distraction.
It’s been two minutes of non-stop dinging and you finally turn to look at the source and suddenly I, too, am aware of the noise.
“Diego, stop dinging, please, we are trying to talk.”
Not a minute later, Diego moves over to the organ and starts to play his rendition of Bach’s Toccata and Fugue in D Minor with the volume turned all the way up. I bite my inner lip as you struggle to keep up your end of the conversation.
“Turn it down, please, Diego, we are talking.”
I suggest we move over to my study to escape the brunt of the blasting noise. As we walk, we pass an entire shelf of books on autism. There’s a disheveled stack of papers that appear to be unfinished school assignments with Post-It notes stuck all over them. In the kitchen, there is a basket of plastic-tip syringes and some kind of plastic facemask thing with an inhaler attached. There are a number of liquid prescription bottles, vitamins, and about six boxes of cake mix just stacked on the counter. There are two dry erase board calendars marked with appointments, letters, phone numbers, and random illegible notes. There’s a tower of yellow rectangular boxes that say “Neocate Splash” and a bag of a bunch of other plastic-tip syringes.
We sit on the red velvet Downton Abbey-style sofa in the study that I comment was proudly purchased real cheap at a local antiques store. As we resume our conversation, there’s another thing happening upstairs. Incessant clapping begins.
It goes on and on without stopping. Funny, Jean doesn’t seem to notice it. Then there’s a sharp screeching sound accompanying the clapping. It’s the child making some deathly, wretched shrieking noise. YouTube is also sounding out an audience clapping at the end of a performance. People are whistling and cheering. It goes on and on. But Jean just doesn’t even hear it.
After 15 minutes of that, Diego moves onto the next activity. He grabs the iPad and heads for the study floor. This time, I catch him and redirect him to another room to resume his railroad-crossing extravaganza.
“Sorry about that. Did you know my son has autism?”
I tell you a shortened version of the history of my son and our journey with autism. Meanwhile, the dinging railroad crossing continues. You look at me. I look back at you.
“How do you do it?” you ask me.
I’m used to this, I say, answering one of my most hated questions as an autism parent. I have no idea. I’m just so used to this, I’m not even aware, I say. You could never get used to this, you tell me. Believe me, I say, I’ve been at it for years. When you’re as ‘autism-aware’ as I am, at times you eventually become equally autism-unaware. It’s a self-defense mechanism. (And with an ever-increasing population of children being born autistic, this trait in parents could save the species).
But we all have a threshold. Even an iron autism mom like me.
Soon I am out of mommy juice and it’s time for you to leave, you say. Thanks for stopping by, I say. Diego hears our departing words and comes to give you his own goodbye.
He calls you by your name and says “Bye.” He puts out his hand to shake yours, and then comes over to me and puts his arms around my waist.
“Come again soon!” I call out. Next time, you think, we’ll just do lunch somewhere.
You walk out to your car and close the car door and hear the silence that surrounds you. You take a deep breath and turn the engine on. You’ve just been autism-awared. During the ride home, you will slowly recover.
Meanwhile, inside, Diego returns to his organ as I gather up the mommy juice glasses, unaware of the music until a familiar tune emerges from the otherwise non-rhythmic cascading of organ keys. It’s the Sesame Street theme song. He’s figured it out.
Smiling, I walk into the kitchen, and I’m overcome by an enormous wave of bliss.
These are the songs to the soundtrack of my life.
As important as autism awareness is in this world, I can’t help but cherish a little autism unawareness in my own now and then. Like breathing, I do it all the time – but if I had to constantly think about doing it, I’d probably go nuts and wish that I didn’t have to do it anymore. The thing with breathing is, nobody ever asks you, “How do you do it?”
I don’t know how I do it. Just like autism parenting, I keep doing what I have to do and it’s completely natural. Effortless. I can’t stop. I do it – sometimes aware, sometimes unaware. I am an autism mom. And just like breathing, I’m just gonna do it until I die … whether I am aware of it or not.