Tug-o-War: A Personal Account of Raising an Autistic Son
"What's for dinner?"
These are the first words that Aidan says every time he greets me. He likes his structure; likes knowing what to expect; doesn't like surprises – like rice pasta and field roast when he's anticipating spaghetti with real meat. What's for dinner is how Aidan gauges his day, how he sets the tone and reminds his mom not to stray from the expected, from the stable point-by-point list he tracks on through his day.
"How are you?" I counter. I know this is stressful, but I'm determined to help Aidan break out of the choking chains of immovable routine.
"Did you have a good day at school today?"
"It was alright," Aidan returns, half taking the bait. This, too, has become structure.
"What's for dinner?"
We drive in silence for a while, Aidan clinging to his need, me clinging to mine. But even as I do, I know I will not win this gentle tug-of-war, played out on the field of our mother-son bond since the day Aidan was born. He cannot give in, and so eventually, I know, I will.
When Aidan was a toddler, we played a different game. He would stand up on his two skinny legs and scream. And I would race around the house, lifting toys, pictures, the cat, the garbage can, anything I could think of that he might be telling me – in his piercing way – that he wanted or was bothering him. The further I got from the object of his desire or ire, the higher-pitched the scream. I had heard such a sound only once before Aidan was born. The same blood-curdling, hair-raising, glass-breaking sound that caused one to stop dead in one's tracks, or want to crawl into a hole and bury oneself.
I was in my tiny carriage house preparing dinner when The Sound rolled in like thunder from just outside the window – a howling scream that went on and on. I watched my wine glass, half-expecting an explosion. Eventually I called animal control. The operator listened over the phone as I held it to the window.
"Ewwwww," he said. "You better call Crazy Bob."
Bob must have been in his 80s, a tiny, shrunken, grizzled waif of a man in dirty overalls and a torn plaid shirt. He wore a netted baseball hat emblazoned with his name. His old Ford pick-up was dented and clawed, as if he'd thrown it into a lion pride and they thought it was a zebra.
That's when I realized I'd heard of Crazy Bob before. Crazy Bob was the guy on the news. The guy the city sent when a shocked Northwest homeowner returned to her woodland home to find a cougar lazily sunning in the back yard.
Crazy Bob looked at me but said nothing. He paused before the huge bush that marked the boundary between our property and the neighbor's, the place where the caterwauling scream continued to roar with a painful fury.
He rolled up his sleeves, pulled down his visor and with net in hand marched – literally marched, with a high step – into the bush. Within seconds, the screaming escalated to a level so high and unnerving that I tore a pillow from the couch and shoved it over my head.
And then, moments later, silence.
I could not remember a silence so pure. So beautiful. So full. I sat relishing it until I was snapped back to reality by the slamming of a truck door. I looked out the window to see Crazy Bob hoisting a moving, shaking, Santa-size bag into the bed of the truck. Without even a wave, he was in the cab and grinding gravel down the drive.
It turned out the scream was coming from a mama raccoon who was protecting her four babies from a male raccoon – the father most likely – bent on eating them. I could relate. Sometimes I feel like eating my children. The writhing bag contained the male, caught by Crazy Bob, I know not how.
Years later, after one particularly painful session of Aidan screaming and me madly racing, I looked up Crazy Bob again. Perhaps he had a trick or two for feral children, I thought. But by then, Crazy Bob was gone. Felled by rabies contracted from a different rodent, in a different bush, according to his obituary.
When Aidan was closing in on 3, a smart preschool teacher helped us institute a picture schedule, so that Aidan could both know what to expect – when things would change throughout the day – and also be able to communicate what he wanted. And it worked pretty well.
Aidan had three favorite pictures he frequently shuffled through the pile to find and present to us. One showed a bowl of mac-n-cheese. Another, a banana. And the third, a train. It was when he pulled up the third that I began to brace myself for The Scream. Because the train picture could not be satisfied with anything but the real McCoy. Not the sizable Thomas the Tank Engine railway we had erected in his room. Not the Where Are the Trains? video he loved. Not by me racing around the house tooting like a train. No, the train picture meant one thing: I want to see THE TRAIN.
If THE TRAIN could not be produced in a timely manner, I knew I needed to prepare for hell, which was sure to break loose all over the house.
One day, when the car was in the shop and so I had no way to quickly get down to the tracks, Aidan pulled the train card. I could have sworn he handed it to me with one eyebrow raised – daring me not to come through.
I tried to keep it pleasant.
"No, honey, no train today. The train is … sleeping!"
Aidan emphatically waved the picture in front of my face.
"Oh, look! It's lunchtime – let's look at the schedule. Ohhhhh, mac-n-cheese! Aren't you lucky!"
Again the picture, shoved so close to my face I could almost taste it.
"Aidan, please, not today, we can't see the train today, but we can play train!"
I ran into his room to drag out as many boxcars as I could find. I turned to see Aidan standing in the doorway. Arms down at his sides. Little fists clenched, lip quivering. I could hear the storm even before it blew in.
It was moments like these when I felt so deeply the tempest that raged inside Aidan that it almost became part of me as well. Or perhaps it was a part of me, because as I watched my son, frustrated, unable to communicate beyond the picture in his hand, unable to navigate the power of his desire to see THE TRAIN, so confused by the emotions chugging through him like a steam engine going at full speed, I understood that none of this was his fault.
He didn't understand waiting. He didn't even understand hugging must of the time. He didn't understand autism and neither did I. But I did understand the rawness of what he felt, and when I did, my sorrow for his lack of regulation and control – how scary it must feel to him – was itself piercing. As piercing as The Scream I knew was rising, cascading up, really, from Aidan's belly.
And so, I, tired from no sleep myself, but wanting to save my son from that wretched monster, sprang to the doorway, pulled him to my chest and thought fast.
"OK, baby, let's go see the train," I said. Matter of factly. I tied Aidan into a backpack so quickly, I shocked The Scream right out of him. Within minutes we had started the five mile trek to the nearest set of tracks.
When we arrived nearly two hours later, I was dripping in sweat. It was 98 degrees outside. Aidan is in the 98th percentile for height and weight. Surprisingly, Aidan had not complained the entire way. As if he knew that this sacrifice was for him, as if he wished to give me something in return. This small thing.
We sat on the bridge above the tracks eating bananas and cold mac-n-cheese for nearly another two hours before the first train rolled beneath us. A Canadian Pacific engine, followed by 47 Burlington Northern cars. As I watched Aidan, I knew I would walk a thousand miles just for this:
To see that smile, that happiness, which was the absolute opposite of The Scream, fill not only my son's face but his entire body. He hummed with happiness. I could tell, even though he could not yet say the words out loud, that he was counting.
"47," I said. And I knew I was right because his smile got bigger. When I gave the wrong number, Aidan would always pat my leg and shake his head and I would go up or down on my count until I hit the right number. I knew that inside that silence my son was brilliant.
Aidan looked at me, beaming, and turned back to the track as the caboose filed under the bridge.
"TRAIN," he said. His first real word.
I looked at my son, tears streaming down my face, understanding that what happened before was for this. Every time was for this. Every scream, a wanting to say this first clear word. To me. Aidan, wiped a tear from my face and looked at it on his finger. Examining the drop. Curious.
"Train?" he asked.
"A beautiful train, Aidan."
By the time he was 8, Aidan had more words than the average teenager, and he could spell them all. In fact, doctors surmised, he'd likely been reading since he was 2 or 3. No wonder he screamed when I tried to short-cut a story.
And so the tug-of-war began, his will against mine. Him wanting what he wanted. Me wanting him to have the skills to navigate the world, which included understanding the needs of others, moderation, change. Along the way we pulled teachers, psychiatrists, experts into our game. But always it came down to Aidan and me. Aidan clinging to his need, me clinging to mine.
Today we are going to drum lessons, something Aidan looks forward to almost as much as dinner. And yet, as with everything, even drum lessons have a place in the structure of Aidan's life.
"What's for dinner?"
I have held this card close for as long as I can today. Someday he won't need to know what's for dinner. Someday we'll be driving along at 4:30 p.m., nowhere close to dinnertime, and see a burger joint, and I'll say "Hey! How about early dinner!" And he'll say, "Sounds good."
Someday, I have to believe, I can say steak and give him fish, and he will be happy.
But that's not today. Today Aidan wins.
"How about pizza?"
"Cool," my big 13-year-old baby says.
And the flag crosses the line in the mud on his side.