What If

 
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They say kids with autism don't lie. Of course, “they” probably don’t live with anyone who has autism. Ninety-nine percent of the time, my son, Cowboy, doesn’t lie. But sometimes, that one percent comes shining through. You don’t have to be fully verbal to fib a little here and there. However, unlike my stepkids, Mario and Zelda, when they were his age, Cowboy finds it difficult to lie with a straight face.

"Did you brush your teeth, Cowboy?"

"Yes," he answers as he opens his cavernous mouth for me to take a whiff. Often, his answers to hygiene questions are paired with presenting evidence. “Did you remember your deodorant?” He lifts his arms for me to smell his armpits. “Did you wash your face?” I must put my nose to his cheek. I make it a point to never ask if he sufficiently wiped his posterior.

After sniffing his less-than-minty-fresh breath, I see the glint in his eyes.

"Cowboy, did you brush your teeth tonight, after eating?"

Again, he says “Yes” and repeats the ritual, as the corners of his mouth turn up into a grin. The aroma demands a verdict; he is convincing nobody.

On his third attempt, he breaks, and tells me "No" as he gets up to go polish his not-so-shiny pearly whites.

These conversations have been going on for years; but recently, I realized they are lessening. On weekdays before vocational training, or when we’re going out, there’s no need for questioning; Cowboy gets ready with no prompting. His lengthy visual checklist of Things to Do Every Morning is covered in dust, unused for well over a year, and will soon move to the garbage can. Verbal hygiene reminders are needed only on sleepy evenings near bed time, when he’s drifting off on the couch. Or on lazy Saturdays spent lounging around the house; those days are breeding grounds for halitosis and BO. We always offend the ones we love the most.

When Cowboy was elementary school age and did something wrong, he was honest to a fault. He'd inch his way to the doorway between the hall and the living room, peek around the corner, and stare into our unsuspecting eyes. Laughing, he’d point us in the direction of his offense, often taking our hands and leading us to it. The world's first stool pigeon tour guide. Of course, we often didn't find his shenanigans as funny as he did. Such as during the Peeing on the Bed Phase, which coincided with the Peeing on the Electrical Outlet Phase, the latter making us especially nervous. Cowboy didn't touch the outlets; it was simply crazy target practice. Who says children with autism can’t entertain themselves?

Even now, as a young adult, he sometimes gets sneaky. Last week, I came in from the backyard to see a flash of white flying from the living room to the kitchen at warp speed. I glanced into the kitchen as Cowboy tossed a bag onto the counter, then froze, straight-faced, gazing into my eyes.

“What are you doing, Cowboy?”

He stood there like a statue.

“Show me what you were doing.”

He held up the bag, empty except for a few tortilla chip crumbs.

“It’s okay that you finished those chips.”

He thinks he’s getting away with something even if it’s not forbidden fruit.

In daily conversations, often he answers “yes” to everything. If I ask him if he’s sure, he sometimes changes his answer to “no.” What ensues is a repetitious inquisition to figure out what he truly wants. It’s an insane version of 20 Questions, with Cowboy saying what he thinks I want to hear, and my rephrasing the questions to try to get to the truth. Decision-making can take quite some time. And because he has trouble with Who, What, When, Where, Why, and How questions, I often have to explain what each category means.

“How was your day today, Cowboy?”

He spells “school” or “vocational” in sign language.

“I know you went to school. That is where you went. I am asking how school was.”

He proceeds to spell the name of every single person he saw that day. With a photographic memory, he never leaves anyone out. After his roll call, I continue.

“Okay, that’s who you saw. ‘Who’ means a person, like your friend Casanova. But what did you do today? ‘What’ means an activity.”

He spells “breakfast, lunch, class, bus.” When he was still taking high school classes, he would expand his answers to “social studies, art, P. E., science,” etc. I couldn’t argue; he was telling me what he did, in a way. He went to classes.

“Yes, Cowboy, I know your schedule,” I’d say. “But what are you doing in your classes?” I would plead.

I don’t know why I try so hard to get information from him. Asking about their days never worked with Mario and Zelda after they completed the fourth grade. Before that, we heard it all. Who got in trouble, what they did at recess, who farted in class, what songs they sang in music, how many times they went to the restroom, and how often the teachers yelled. Papers and crafts were sent home daily, ad nauseam. I loved every bit of information we got back then, and we built onto our attic so I could save every memento from every child. Until some brilliant parent suggested taking photographs of some of the kids’ creations, and, with intensive therapy, I learned to throw things away. That was a work in progress for many years; it takes guts to dispose of a life-size trace of your baby’s body with all the internal organs glued down on it. But I saved our favorite masterpieces. Once they entered junior high school, our kids did “nothing” all day, every day, at schools we pay for with our tax dollars.

Now, I long for the days when Cowboy brought home laminated Thanksgiving placemats with cut out magazine pictures of his favorite foods for the holiday. Or a silhouette of his head. Or turkeys made with his handprint. This week was the first time I’ve missed those things. I’ve been so excited to watch Cowboy grow and mature, thankful for the days we have now as compared to the harsh years gone by, that nostalgia snuck up on me. I wouldn’t want to relive those days, but I miss knowing more about his daily activities and collecting his handmade keepsakes.

I’d love to be a well-dressed fly on the wall, to watch him do vocational training. When he comes home each day, he tells me the places he went. He enjoys learning different jobs at various businesses. I still don’t get all the answers; he still struggles with the five Ws and one H question. I’ll never quit asking for more information, and he gladly indulges me. He’s a hard, detailed worker, and I’m excited about his future.

But recently, I wondered about a different future. A future he might have had without autism.

I wonder what he would’ve been like, I thought for the first time in a long time. Would he have been rebellious in his teen years? Would he have had a million girlfriends by his senior year? Would he have driven like his dad? (I shuddered.) Would he have made the varsity basketball team? Would he tell me to shut up when I tell him for the tenth time to hang up his wet towel after showering? (Probably.) Would he have told us everything about his days? (I’m sure he wouldn’t have.) Would he be off at college now? Would he be talkative? Would he be sarcastic? (I think so; it’s in his DNA.)

I don’t usually live in What If, but it’s okay to visit for a little while. It gives me perspective. We didn’t want autism. We didn’t expect autism. But our reality is autism. I don’t know what Cowboy would’ve been like without it. What would any of us have been like with a different history? His is a medical history and condition that changed his life, and ours.

I don’t know exactly what he would’ve been like. But I know who he is.

Cowboy’s love of people comes from his joyful heart – a heart devoid of malice. His unabashed affection for others comes from a freedom many will never know; he loves purely. His laughter is genuine, never mocking. And his eyes look into my soul with a depth that says he completely accepts me as I am. I know, without his ever having to say or spell a word, that he lives his life simplistically. He doesn’t make things too complicated, or play psychological games, or plot the downfall of someone who is different from him. He’ll never arrogantly defend his political beliefs or make others feel bad about themselves. In a world that sometimes begs for everyone to be the same and think the same way, he is a reminder of who each of us could be if we were our truest selves.

As I watch Cowboy grow into a man, I see him making strides in ways I hadn’t thought possible when he was little. His independence in several areas, and his determination to do things his way, are Medals of Honor he earned with unimaginably hard work. His accomplishments far outshine Thanksgiving placemats and handprint turkeys, just as my What Is far outshines my What If.