Sunday, the last day of January, the sun hung high and warm in the sky and the mild wind smelled of damp earth and wet grass. Living in the Northwest for the past five years I have learned how critical it is to seize a sunny day. Sun rarely makes much of an appearance during the winter months so when it does make a show it’s “Carpe Diem”.
My older son was tired from an earlier 6:30 a.m. hockey game and bailed on us. Sean had swimming class -- a ½ hour of swimming, floating and kicking -- rewarded by cannonballs and leaps from the diving board -- however, not making much of a dent in his bottomless energy tank. A bike ride? Heck yeah. He ran to put his shoes on and scurried out to the car while my husband loaded up the bikes in the mini-van.
We arrived at the trail, clicked on our incredibly tight and odd feeling helmets and headed out toward the trailhead. What a gorgeous day! The sun melted in the blue sky, cottony almost cartoonish clouds moved lazily resting on the shoulders of budding trees and red cedars and firs. The creek lingered over the pale rocks -- the sun making them sparkle, erasing the grayness and the northwest tree frogs croaked in the wetlands. Sean pedaled furiously, his small strong legs and calves flexing. I could see a smile underneath his helmet, happiness and sunshine making his eyes squint.
I was happy, seeing us together and moving along, soaking in the goodness of it all. Our moods had clearly matched the perfect day. But then it happened. Maybe around the five mile mark -- a mile short of the parked mini-van. The chain on Sean’s bike came off and he came to a stutter and than a complete stall. I called to my husband ahead of us to stop. Sean pushed down his bike angrily and began pacing, each step tighter, firmer and tenser.
My husband turned Sean’s bike over and began working on the chain. It’s an old bike. It was his brother’s bike that we got from a yard sale years ago. The chain was old and rusty. Sean’s pacing turned to muttering. The chain wasn’t cooperating -- stiff and stubborn -- mimicking Sean. Then Sean fell apart. He started hopping and flapping his arms and hitting his helmet.
“I want to go home!” he screamed, drowning out the whimsical music of the frogs, birds and the children at the adjacent park. “NOW!” he screamed.
And then he threw his head back and let out shrilling screams -- like a person being mauled by a cougar or someone falling into a campfire.
"Stop it.” I said firmly and calmly, “It’s not a big deal. Daddy is fixing it. See?”
But he was gone. Lost to any logic or common sense.
"Hurry,” I said to my husband the panic building in my voice, my head throbbing from my tight helmet and the stress of the situation.
My husband had pinched his finger, he was shaking his hand but went back to it steadfastly. Meanwhile, people passed us -- an older woman walking her collie, holding the leash in one hand and a small blue bag of poop in the other. She stared at me hard, gave me an eye roll as if to say, “You are useless.” I didn’t respond. I didn’t engage. I silently laughed to myself and thought -- “At least I don’t have dog crap in my hands.”
Two women power walking came from the other way -- big sunglasses covering their eyes but there mouths formed into horrified arcs -- similar to Munch’s portrait “The Scream”. Again, I said nothing and looked away from them. But inside I was devastated. I couldn’t calm Sean down, he was lost to me -- he was stuck in his world where his bike was broken forever and that he was never going to make it home, EVER. No words no gestures, no simple touch could comfort him. He was unreachable.
His screaming scared me. I was afraid someone would call the police. This is a common fear for parents of autistic children. A person watching from afar, afraid to ask if everything is okay but rather calling the police to report an out of control child or possibly an abusive situation. I have friends who have greeted police officers at their front door -- a complete misunderstanding and yet the pain and humiliation still heartbreaking.
“Just push the bike. What if somebody calls the police on him? On us?” There are houses that back up to the trail -- I was quite certain my son’s meltdown echoed in their yards and homes -- maybe someone thought a child was hurt or being attacked. Who would think that this child was so completely upset and angry and frightened just because the chain fell off his bike? But that was all it was. Welcome to our lives.
Finally, the chain linked on and my husband right-sided the bike. “Come on, Sean,” he said tenderly. My husband is kind and patient -- much more than I am. I had been saying over and over, “Stop it! Calm down. You are overeacting It’s not a big deal.”
My husband smiled at me and said, “It’s okay now.” I tried to smile and managed to eek out a small one -- our secret code that we are in this together.
For once in my life, I didn’t cry in front of strangers who looked at me with such disgust and disappointment. I didn’t mutter out, “He’s autistic. What’s your excuse?” I just let it all go -- for me, for my husband and mostly for Sean. It didn’t matter. Some people will never get it. And some people don't want to get it.
What Sean will have to learn is that the chain comes off a lot in life. Things seem to be going smoothly and then suddenly the chain slips off and no matter how hard he pedals or steers he won‘t be able to move forward. He will have to pull over and take a deep breath and realize that it can be fixed -- with effort and concentration. And then he can get back on his bike and move forward again -- a little wiser and more confident. It’s not the end of the world. Setbacks are temporary and not forever. I just hope someday he will understand that.
5 months ago