We have a son with autism. His name is Jack, and he has changed our family in a lot of ways.
I mean, we don’t look twice when a kid throws a tantrum in a store.
We know that the new Beauty and the Beast movie is exactly one hundred and thirty-nine minutes long.
We’ve driven to three different grocery stores to find the right strawberry frosting for a birthday cake.
Yet this doesn’t quite capture it. These details, they don’t describe all the ways in which our family orbits the bright, hot autism sun—how we admire it and we are warmed by it, and occasionally, we are burned by it.
You see, I don’t know how to explain it. The only thing I can think to do is tell you a story.
Once upon a time, there was a boy and a girl who worked together in a pizzeria. The girl noticed the boy first, mostly because he wore white tube socks stretched up high on his legs, and it made her giggle.
They went to the same college. Across the wide stone walkways, she watched him and he watched her and after a while, he asked her on a date. He cooked her chicken stir-fry in his tiny kitchen, and as she was leaving at the end of the night, he kissed her.
Two years later, they got married in a small church.
Four years after that, they started a family. Their babies came one right after another, like steps on a staircase.
After the pink, rosy girl, the dad, well, he was supposed to get a certain operation so that they wouldn’t have any more kids, but the doctor canceled the appointment and nine months later, they had their fifth and final child—another boy.
But in the midst of all the babies and the diapers and the small, sticky hands, their second son, Jack, didn’t seem quite right. He cried all the time. He never slept. He was always agitated, yet at the same time locked away in a mysterious, private world of his own.
After a lot of tests, doctors and therapists and counselors decided that he had something called Autism Spectrum Disorder. He was just eighteen months old.
Autism meant he had low muscle tone.
His speech and his social skills were delayed.
He engaged in obsessive behavior.
After her son was diagnosed, the young mother sort of folded inward around her young family. She didn’t go many places or accept invitations to play dates, because seeing the other boys Jack’s age ask for juice using their words and pretend they were riding horses around the living room with red cowboy hats perched on their heads was like a dagger in her already fragile, quaking heart.
Besides, the minute she stepped out the door, Jack usually started to scream and that would make the baby wail so none of it seemed worth it anyway.
All the time, the mom and the dad looked for clues about their boy.
Who was he?
What did he need?
Who would he be?
After a while, they got tired of the isolation and loneliness autism had imposed upon them. They vowed they would no longer feel ashamed. They promised they wouldn’t worry about what other people thought of them.
They had to teach him how to hug. Can you imagine? They had to show him that a hug is when you put both arms around another person and you give a little squeeze.
They had so much to teach him, and so little time. It felt like a giant clock was ticking away above their heads and they were racing to stay ahead of it.
When their son was about eight years old, this man and this woman who met in a pizzeria stayed up late one night and they asked themselves hard questions.
What can he do?
What does he need?
Who will he be?
These questions were very hard to ask because the answers were a little sad. You see, they had to face reality when it came to their boy. Before they could figure out all he could be, they had to know all he was not.
I guess you could think of it like a flower. They needed to fold the silky petals back, one by one, to see what was underneath the blossom.
He may never make the honor roll.
He might not have many friends.
He would probably never be the captain of the basketball team.
But what did he need to know? What could they expect him to do?
They decided to simply focus on a few things.
He needed a connection with God.
He needed to be able to sit at the table and eat a meal with his fork and his spoon.
He needed to know how to clean up after himself when he played with his toys.
This boy Jack is thirteen now. Still, his parents ask themselves the hard questions.
What can he do?
What does he need?
Who will he be?
The flower’s silky petals drift through their fingertips like forgotten dreams. It can be sad. It is painful. But it is real, and necessary.
He may not cross the stage at the end of his senior year in high school and accept a diploma.
It’s possible he won’t learn to drive.
He will probably never raise a child.
But what does he need to know? What can they expect him to do?
He needs a connection with God.
He needs to know how to cook an egg, and wash a frying pan, and start a load of laundry in the washer.
He needs to understand he has value–that he is important, and special, and loved.
Then the parents decided to try something else. They decided to ask the hard, late-night questions for all of their kids, not just their son who has autism.
What can they do?
What do they need?
Who will they be?
By bringing these questions out of the darkness and into the daylight, the girl and the boy from the pizzeria realized they could raise the family they were given, rather than the one they imagined having.
Their kids need to know how to forgive someone who has hurt them and mend broken friendships.
They need to know how to be bored, and to water the flowers with the hose, and change the oil in the car.
They need to know how to write their signature and figure out if a pound of grapes is cheaper than a pound of strawberries.
Once again, the mom and dad decided to focus on just a few things.
They insist their kids empty the dishwasher and make their own breakfast and roll the garbage cans up the driveway.
They have to leave a room the way they found it.
They choose less sports and activities, and more time together at home.
They enjoy a quiet prayer at mealtimes, and family adventures on Sunday afternoons.
Maybe this sounds a little too idyllic—a little too picturesque, but this family finds it’s not always easy to swim against the tide in a culture that is obsessed with the highest grade on a report card and trophies on the mantle.
Once in a while someone will ask the mom why her daughter doesn’t play for the travel team, or her son doesn’t do gymnastics every Saturday morning.
And she tells them that they like to eat dinner together at night around the long wooden table in the kitchen.
She tells them how on long summer evenings, as the sun disappears behind the trees and the evening light fades, all five of her kids run around on the front lawn. They shriek and tease and chase one another. They try to catch sparkly lightning bugs on the tip of their finger, but so far, not one has landed.
She explains that, for now, they have chosen fireflies over soccer.
What she doesn’t say is that deep down inside where her heart beats fiercely, she hopes one day, maybe they will ask themselves three questions.
What can I do?
What do I need?
Who will I be?
Anyway, this is how autism changed our family.