It’s 8:00 am the second week of summer camp and Nick’s bus will be squeaking to a stop outside our house in fifteen minutes. I can’t see any part of his body under the mound of covers on his bed but I can hear his slow breathing. His autism has carved erratic sleep patterns in our lives and it goes against everything in my being to wake him.
I am the curator of my family, a valuable collection that I don’t own, but am entrusted to care for. Giving my kids a calm, happy send off into their day isn’t something I take lightly. Reaching under the covers from the bottom of the bed I locate his feet. When did my baby boy turn into an 8 eight year old with these big feet? I squeeze them gently but he doesn’t move. At the top of the bed, a honey brown mohawk, sculpted by sleep, pokes out from under his nautical quilt. I use a quiet, sing songy, voice,
“Good Morning Nicholas. It’s 8:00 and you have a fun day of camp ahead.” Since he is mostly nonverbal, I don’t expect him to respond.
His furrowed brow twitches above his closed eyes that refuse to leave the dream world. I apologize as I pull open the blinds that allow sunlight to spill into the room. He groans and rolls towards the wall in protest. At 8:05 I increase my volume as I empathize,
“I know, I felt the exact same way getting out of bed today,“ and to lure him out of that warm cocoon of sleep, “I wonder what you will make in cooking class – and you have yoga – no shoes required. That is your kind of class.” He rolls back in my direction, eyes still closed but his breathing is now deliberate, awake. I run my thumbs over his eyebrows and the left side of his mouth inches into a half grin. He is waking up happy, a critical ingredient in the formula for a good day. Last week, when the schedule was new, I rushed him. He kicked at me when I removed his covers and then screamed, yelled and stomped all the way to the bus.
“Nick, it’s 8:07, you have to open your eyes.” They flutter open and close again but I am not panicking, I have calculated the time carefully. His bus is always a few minutes late and he can eat breakfast at camp. Finally at 8:09 his eyes are open and he propels his body towards the edge of the bed and into a sitting position. He pushes limbs through his shirt, then his shorts and shoves his feet into his crocs before shuffling to his favorite perch at the top of the hallway stairs. The smell of coffee and background chatter of the Today Show usher him from the sleeping world to the waking one.
It’s 8:13 and everything is going according to plan. The heavy front door creaks as I open it to set his backpack on the front step. He lingers on the stairs and finally butt scoots his way to the bottom.Waiting is hard for Nick. Anything out of routine is hard which is why I am starting to panic at 8:20. The air is humid as we step outside, with no bus in sight. I keep a placid exterior but begin swearing in my head. At 8:25, the mental F bombs are flying as Nick looks at me and gestures to the empty stretch of road where his bus should be. He’s letting me know he can’t wait anymore. He WON’T wait anymore.
“I’m sorry Nick. I don’t know where the bus is. I’m going to drive you.” My calm façade is replaced by escalating anxiety and irritation. Nick’s twin sister, Holly who is still asleep, needs to be to her camp by 9. Fortunately, this is a rare day when my husband is still home. I race only as far up the stairs as needed for my yelling to wake him.
“Brendan, I have to drive Nick. I need you to get Holly ready for camp.” Then I run back down and out the door to where Nick is waiting by the car.
I buckle him in and as I back out of the driveway begin scripting the dialogue (and by dialogue I mean raging monologue) that I will have with the bus company. Kids with autism, more than anything need predictability and routine. I have a life and plans that exist outside of a bus schedule. I’m getting more livid with each thought and more determined to be “right”. I have another child who is now deprived of her stress free morning. And my son is missing his speech class!
At the red light, I use my car phone system to look up the number. By calling now, I will catch them in the act of being late. I don’t like this self-righteous rage that has completely overtaken me, but I don’t know any other way to diffuse it. That is until I glimpse Nick in the rearview mirror. Smiling, with eyes closed, he is rocking gently to the song “Some Nights” by F.U.N.. He is not wrapped up in my internal drama. This precision timed morning was designed for his happiness. If I make the call now, the music will be interrupted and replaced by angry words that would disrupt Nick’s world, the very world I have been working so hard to protect.My son is showing me what is important. Everything else is a story I’m writing in my head. We are together in the car on a summer day, driving to camp and listening to music. There is nothing wrong in this moment.
Jennifer Smyth is a work in progress. She lives in Fairfield, Connecticut with her wonderful husband and two amazing kids.