My name is Carrie. I have five kids, and my second son Jack has autism.
Although he is a teenager, Jack is somewhat naïve, and innocent. His pleasures are simple—going to the movies, popcorn on a Friday night, dinner together at the table.
When it comes to autism, the weekends can be long. This is hard for me to admit, but it’s the truth.
He doesn’t know what to do with himself. He has nowhere to go, and no friends to visit, so he wanders around the house and it’s sad, and also a little maddening.
I can’t have a conversation with my husband without him interrupting, asking what we’re talking about and what the plan is and then one of us snaps and tells him to just hang on and let us finish a sentence already.
Then I feel terrible and I try to engage him but he really just wants to tell me about the latest episode of Supermarket Sweep and I can’t help but think there must be more than this.
Is there more than this?
Autism is hard. Some days, it’s so hard I can hardly believe it.
He is everywhere, is what I am trying to tell you. Twenty-nine hours a day, eleven days a week.
He is outside my door when I wake up in the morning.
He stands next to me while I make coffee.
If I’m in my office trying to return an email, he drapes his long limbs in the window seat and offers facts about spiders, or tornadoes, or how Cardi B is getting a divorce.
He calls for me constantly, to check where I am. He orbits me like a planet.
I need a break.
There is no break. Autism is all day, every day.
I love him.
I love him so much I can’t breathe.
This is the spectrum’s ultimate contradiction—it is too much and not enough at the exact time.
He is sixteen.
He has nowhere to go.
He feels it. I know he does.
Autism has many sides.
Sometimes it is night-sky darkness.
Other days it’s red-paint madness.
Once in a while, there is a glimpse of blue mornings, and a dusky purple dawn.
These are the hallmarks of autism you read about on websites, and in research articles, and the pages of scientific journals.
But they translate to a boy.
A tall boy with an earnest heart who cannot make friends. A boy who paces the floors, desperately trying to outrun the wolf that chases him.
The world is not made for him, that’s the thing. It is not made for my son. It is made for kids who play soccer, and go to the prom, and flirt in the hallway at school.
But what if, for one single day, Jack could decide? What if he could decide how we think, and live, and feel, and move?
In Jack’s world, every morning starts with a stack of crispy waffles covered in butter and syrup.
Music plays non-stop. Rap, classical, pop, maybe a little bit of rock’n’roll.
Cars cost $300.
Kids earn trophies for keeping their body still.
In this world, the sentiments of our heart speak louder than our words, for autism is a listener’s language. Those who can decipher between the lines hear the most.
Here, things run on time: plane schedules, Amazon deliveries, meals, movies.
Under Jack’s rule, eye contact is not important. In fact, connecting your gaze with another is considered rude, and aggressive.
Here, we honor unusual thinking.
There are self-driving cars.
Classrooms have large bouncy balls, and sensory stations. If you need to move, you move.
Two-armed hugs are optional. If you don’t want to touch someone, you don’t have to—no one can insist you need to give Aunt Muriel a kiss, or shake Uncle Herbert’s sweaty hand.
No wool sweaters, or scratchy pants, or tags on t-shirts. Only soft, comfortable clothes.
People say what they mean.
Families eat dinner together every night. Pork chops are encouraged. Salad is a suggestion.
And when it comes to snacks, crunchy is best. Goldfish crackers, pretzels, Wheat thins. Also, cheese. Cheese is very, very good.
Healthy food is not favored, unless it is a yellow pear your grandma peeled just for you.
The bond of three brothers and a sister is stronger than friendship.
Conversations are slow. We take all the time we need to find our words. In fact. there is a mandatory pause of at least forty-five seconds between question, and answer.
During this pause, the questioner is not allowed to roll their eyes, or sigh. No fidgeting, or asking impatiently for a response.
In Jack’s world, there is nothing but time.
Sweet seconds, long minutes, beautiful weeks turning into blissful years.
Time is not measured in terms of goals, or milestones. It is measured in tentative smiles, and a bite of fruit at Grandma’s table.
Jack’s world is full of joy. It is honest, and real.
Sadly, it is not our world.
The truth is, I don’t know how to be in our world with him, and not hurt.
Weekends are hard.
I root for him. I root for him even when I am annoyed/frustrated/tired/helpless, and I can’t find the blue sky or the dusky dawn.
I love him fiercely.