Illuminated by the streetlights, the snowstorm outside is a beautiful sight. I’m looking out the window from my oldest two children’s bedroom just before their bedtime. Warm inside my home, it’s easy to enjoy the winter scene. I know tomorrow morning I’ll have to shovel it. But that particular problem seems distant right now.
“What did we do today?” asks Sam.
Sam is 12, my oldest son, and has autism.
I’m reluctant to pull myself away from the window and step back into reality.
“Daddy, what did we do today???” he asks again impatiently.
He’s in bed already, waiting for our nightly conversation. I finally walk over to the side of his bed.
“Okay Sam, what did we do today?”
“Went to school.”
“What did you do at school?”
“Bus thirty-four. Morning meeting, math time, reading time, lunch time, OT time, then home”
“What does…Santa Claus say?”
Carrying on a conversation is hard work for Sam. He needs a break. I do my best impression of the Santa Clause from “Christmas Story”.
He cracks up laughing.
“So what else did we do today, Sam?”
“Take a walk!”
“Where did we go?”
“Left on Guy Park, left on Evelyn, right on Phillips…good bye left on Northampton! See you in April!”
During the warmer months we would have gone left on Northampton and then up Romeyn, then to Market and over to Locust where he still remembers the apartment we had when he was little. Every winter it’s difficult for him to accept the transition to the shorter routes we take due to the cold. Today he had a small temper tantrum when I didn’t take him the way he wanted.
We continue our conversation like that for a few more minutes. He gives me a big bear hug goodnight. Then I cross the room to his brother Ben.
Ben is 10 years old and has autism.
“Tee-toh” he says.
He wants to be tickled. So I tickle him for a minute or so until he’s really laughing. When I can tell he’s in a sociable mood like this, I try to work on his conversations skills.
“What’s your name?” I ask him
“Ben,” he whispers.
“What’s my name?” I say, pointing to myself.
“No…daddy. Who am I?” I ask again.
“Daddy,” he echoes.
“Ok, what’s your name?” I ask again, pointing back at him.
“No you’re Ben.”
I decide that’s enough for now.
“Alright, goodnight, I love you,” I say, giving him a hug.
“I love you,” he whispers.
I exit the room and walk down the hall to my other two children’s room.
“Dad, can we play the superhero guessing game?” asks Zach.
Zach is 7 years old.
The superhero guessing game is like twenty questions, just with comic book superheroes as the subject.
“Sure,” I say, sitting down at the end of his bed.
“I want to go first,” says James.
James, my youngest son is 4.
“Ironman. You always pick Ironman!” says Zach.
“No…it’s not Ironman this time,” says James with a smile.
We play the game for several minutes.
“Is it a man or woman? Can she fly? Red on the uniform?”
After a bunch of questions, we’re still stumped. James reveals a completely made up character which of course none of us could have guessed.
“You’re a silly, James” says Zach.
“No, I’m not silly. You’re stinky!”
I hug them both goodnight and leave the room. They continue to banter back and forth, joking and laughing with each other. It warms my heart how they’ve become such good friends over the past year. They’re building a friendship that will last their whole lives.
When Zach began to talk normally at around 2 years old, my wife Lisa and I were relieved and delighted. After 4 years of being parents, we had not yet experienced a typical childhood development. The adorable toddler conversations and interactions we began to experience with him brought us incredible joy.
It also showed us all too clearly what autism had taken away from us all. It’s only in the past three years that I’ve been able to hold a simple conversation with Sam. Ben is only just starting to use single words to express what he wants.
I sit down at my desk in the office at the end of our hallway. I check email and browse aimlessly on Facebook. I listen as the boys’ conversation dies down and they drift off to sleep.
Suddenly a door bursts open.
“Goodbye left on Northampton! See you later!! GOODBYE!!!”
Sam’s still upset. I try talking to him calmly, giving him a hug. It quiets him for a moment, but as soon as I let go, he’s jumping up and down yelling. I have him sit in the bathroom with the door closed so he doesn’t disturb his brothers. He cries in there for about a half hour. Eventually he calms down. He opens the door.
“Bed,” he says.
“Ok Sam, go to bed, goodnight”
An hour passes, everyone’s sleeping. I’m about to turn in myself, but I stay up for a little bit, watching the snowfall through my own bedroom window.
Late at night is when the fears creep in. What’s going to happen to Sam and Ben when they get older? How will they live when my wife and I are gone? Who will take care of them and protect them? My hope is that they would be able to live independently one day, but I’m not sure if that’s something I should hope for or not. My hope is also that their younger brothers will be able to help them, but I don’t want them to be burdened too much. My wife and I have discussed the matter occasionally, but none of the options we think of give us much peace of mind.
But those decisions are for years down the road. Right now, I know they are safe and happy.
Finally, I lie down on my bed to sleep. I have snow to shovel tomorrow.