An Ordinary Life
My name is Carrie.
I am married to a man named Joe.
I am a mother.
I have four boys, and one girl.
I am raising a complicated child. His name is Jack.
Jack is complicated because he has autism and he’s doesn’t play any sports and he has no friends and his report card isn’t very, uh, traditional.
No trophies.
No honor roll.
No sleepovers, or home runs on a sunlit baseball field.
These days, many kids build their very identity upon these things.
What is his identity?
Is it autism?
I hope not, because he is very certainly much more than a diagnosis doled out in a dimly lit doctor’s office.
I am raising a complicated child who is fifteen and very tall and he usually wears glasses but he lost them at the YMCA last week.
I am raising a complicated child with a very monotone voice that drones at me from 2:55 in the afternoon when he gets off the bus, until 8:45 at night when he finally—finally—settles into sleep.
At the same time, I am trying to raise three other boys and one girl and not let them feel the autism too much but also let them experience it because really, who doesn’t grow and change and transform in the presence of a brother who only talks about Disney movies and cheese graters?
The cheese grater thing is new. Disney movies, well, we’ve been here for quite a while.
Some days, I am so busy redirecting him from kitchen appliances and movies, that I forget to tell him how much l love him.
I mean, how grotesque is that?
I have said it before, and I will say it again. I wish everyone in the whole entire universe had a chance to raise a child like Jack.
I do not say this to be mean, or spiteful. I don’t say it because this boy gave me a life full of rainbows and confetti and eternal sunshine. He didn’t, in case you were wondering.
He gave me something better.
He gave me perspective.
Perspective is not something you can give back, or undo. Once you have it, it is yours forever.
It’s a whole new direction.
Sure, I hear people talk about the trophies and the sleepovers and the home runs. I don’t begrudge anyone that.
I don’t hear anyone talk about sibling rivalry.
Or rejection letters from college.
I mean, where did all the ordinary kids go?
I have ordinary kids. They are here, living in my house.
Sure, they are nice people and the do some things really well and other things they struggle with—like loading the last fork into the dishwasher after dinner—but for the most part, we are ordinary.
I like being ordinary.
See, we autism parents crave ordinary. In fact, most of us get right down on our very knees and pray for it.
And at the same time, the gift of autism is the very ordinariness of it all. My son boils life down to the basics. He has forced me to consider what is essential, and what is meaningless.
How to cheer someone up after a bad day, how to change a shower curtain, how to be a good neighbor.
How to apologize.
When to throw out cheese, how to regulate your body, the best way to walk into a crowded room.
This is all very ordinary stuff, and yet it is powerful. It is rich, and worthwhile.
I guess my question is, are you raising a complicated child? A child prone to rages and insults and broken dishes and maybe a great big dose of anxiety?
A child on medication, with a behavioral plan at school and a therapist waiting in the wings?
You are not alone.
Don’t hide. Don’t retreat into the shadows of awards, and diplomas, and varsity trophies.
Don’t keep your life a secret.
We are here. We are your safety net.
We don’t need to lie about who we are, or who our kids are.
We don’t need to apologize.
I mean, once you tell an outright lie—oh, he’s fine, just taking some time off, you know, a gap year—do you know who hears it first?
He does. Your son.
She does. Your daughter.
They feel your residual shame like burnt garlic on their tongues.
They are not an extension of you.
This is not your fault.
The hitting, the kicking, the biting.
The delayed degrees, the rejection letters, the anxiety.
The calls to the police, the research for a better psychiatrist.
It’s not your fault.
It’s not because you weren’t strict enough, or fun enough, or smart enough, or enough enough.
It could be any of us.
Since my son Jack, I have learned to understand chances and percentages and possibilities a little more acutely.
Any one of us could have the bully.
Any one of us could call Walgreens for a refill on a Wednesday afternoon.
Any one of us could cry at night—alone and ashamed and determine to hide behind a façade someone else constructed for us to follow.
Nothing is impossible.
Don’t hide.
Join us.
You are not alone.
Sometimes, after he falls asleep, I kneel by his bed and I whisper all the things I forgot to say during the day, when the sun shined bright and warm.
Hold your head high, Jack-a-boo. When you walk into the room.
You are bigger than this.
We are bigger than this.
I love you.
firstruleoffilmclub
October 28, 2019 @ 10:49 am
This is my life too- except for the cheese graters!- so thanks a thousand times for this. xxx
Teresa
October 29, 2019 @ 11:13 am
My granddaughters, Kate and Molly diagnosed as well and are my joys! Such typical siblings, opposites… Kate, the elder…quiet, computer game guru, prefers staying to herself most of the time…refuses tv as she has severe anxiety for commercials… dont we alllll? She found her voice; however, via Disney movies. Rewinding over and over certain parts, Lilo and Stitch. Mary Poppins… her first sentences, had a cute British accent. Molly, is a tiny little “tomboy”.. her own description.. she is a chatter box, and talks over her sister incessantly.. argh. She has physical tummy maladies..that have gotten serious at times. Dad has shared custody and does all kinds of fun and stimulating activities with them, especially science. Molly is into computer programming now. Writing her own codes and designing pages… they have no friends… they are both quirky, brilliant, talented, eccentric, fun, beautiful…yet, no friends… breaks my heart.