The Peace We Make
My name is Carrie.
I have a son with autism. His name is Jack. He is almost fifteen years old. He has blue eyes.
In case you were wondering, he is not a savant. He does not possess some exceptional skill in math. He doesn’t swirl colorful blobs of paint into masterpieces, and he’s not the least bit interested in the piano.
Jack has regular old autism with limited theory of mind and self-stimulating behavior and a tendency to perseverate on random topics or objects. Also, anxiety—lots and lots of anxiety.
In other words, if you tell him you think Coke is better than Pepsi he will corner you and argue how that cannot be the truth until you cover your eyes and cry for mercy.
He rubs his hands together very fast, and hops around the room. This helps him regulate his body.
Also, he is afraid of many, many things. At the moment, this list includes fire drills, bad weather, and being late for anything.
I mean, I guess he could be a savant. I never really investigated too closely. That would require cracking through the looping dialogue about Coke products, and honestly, who has the time for that?
He does have a really good memory, though. If you tell him your birthday and then run into him two years later, he’ll remind you that you were born on July 2nd, 1973.
At the same time, his interests are limited. If it were up to him, he would eat chicken fingers and French fries for every meal. He would watch the first ten minutes of the same Disney movie over and over all day long, and adhere to a very strict schedule of his own making.
I had to hold him down for his flu shot. Did I tell you that? He is over six feet tall and when the nurse came toward him with the needle he started to cry and flail and I had to pin his arms to his sides and whisper in his ear.
Shhhhh, Jack. Just a pinch, just a pinch, you can do it.
He is getting bigger.
This is getting harder.
Because the entire time I am trying to hold his arms and I am sweating and I am annoyed, I am also sad because I know he doesn’t understand that a shot will keep him healthy.
I love him so much. I know the curve of his face better than I know my own.
The double-edged sword is the brother born one year before—Joseph—an equally tall, lanky boy with green eyes who has one foot toward becoming a man.
The gap is widening. In fact, it is glaring. What started as two brothers thirteen months apart has turned into two teenagers who hardly resemble the same species.
I am always thinking about stuff like this. Sometimes I wonder if other autism mama’s brains race the way mine does.
It’s not even always about big things, like independence and medication and predators on the Internet.
I think about whether or not I am speaking too quickly.
Or if I should let him change the radio station when a song comes on I know he doesn’t like because he has told me fifty-nine hundred times he thinks it’s terrible—or if I should make him listen anyway because I like it, and this might teach him some flexibility.
And when I’m not thinking about the way I talk, or the radio, I am trying to stay at least five seconds ahead of him so I can anticipate his next move.
Will he ask the cashier if she’s pregnant?
Will he run behind a car?
Will he swear?
He swears a lot. We’ve been working on this for months. No, that’s not true. We’ve been working on this for years.
For me, autism brings a trifecta of sensations: hope, grief, and peace.
Hope is the bundle of rocks I carry everywhere I go.
Grief is the small box of feathers I let myself open every once in a while.
And peace? Well, that is the long, jagged mountain I climb, clutching a bundle of hope and my box full of feathers.
The thing is, we didn’t decide to have a son with autism. We did not choose this, and yet, almost fifteen years later, here we are.
We are researching group homes for people who can maybe hold a job doing simple tasks like building widgets or keeping the floors clean at the Salvation Army.
He’s not simple. He may not be a savant, but he’s not stupid, either.
I am not wired for this, can you see that? I talk fast. I don’t like chicken fingers. I am not good at research, and I hate hiking.
I want you to know that I never, ever had preconceived notions about what my children might do for a living. I never observed my toddlers stack blocks, and dreamed of them sitting at an architectural table planning skyscrapers.
I never watched them play baseball and considered a life in the stands, dodging fly balls.
I also never imagined they would sweep floors.
What will he do for the rest of his life?
This is the great conundrum, you see–the big mystery.
I mean, he’s certainly smart but he doesn’t think like anyone else I’ve ever met, and he can’t keep his body still long for much longer than five minutes.
What does a person like him do?
How will he fill his hours and his days and his years?
I can’t imagine him baking or cooking for a living because he picks at his face and rubs his eyes too much.
He can’t operate heavy machinery, obviously.
He can’t sort mail at the post office because he would memorize everyone’s address and report loudly at the dinner table about who got a copy of Playboy delivered that month.
Menial work. All signs are pointing in that direction.
Maybe not. Maybe he will surprise me.
Oh, I know! At least he’s doing something! It’s honorable work, sorting clothes at the thrift shop and collecting recycling.
And it’s true. It is honorable work. He’s doing something.
Besides, he doesn’t care, so why should I?
I do, though. I do care.
It stings. That’s all I’m saying. Right now I am on the jagged side of the mountain, and I am holding on for dear life.
In the meantime, I wait. Every afternoon I wait for a white minivan to pull up our driveway.
I wait for the door to open, and a big pair of Nike sneakers to step out onto the pavement.
I wait for the boy with the blue eyes.
And as the sun lowers in the cool sky, I just hope he looks my way even once. I hope he tells me something about his day. I hope he is happy.
Grief, hope, peace.
One day, peace.
February 25, 2019 @ 9:19 am
I read your blog faithfully and can so relate as a grandmother of a boy with autism.
Sr. Lucille Blais
February 13, 2020 @ 4:33 pm
I read your blog with much empathy. I am a religious sister ,thus have no children. I have taught 40 yrs and did have 2 boys in different pre-schools who had autism.
Not having the education to deal with them properly, I referred them to public education who had teachers specialized in working with those children. Their case seemed mild compared to Jack’s. They have improved to a certain degree. but remain a challenge for later.
I thank you for sharing Jack’s experience and your “sometime” inadequate feelings. You are in my daily prayers as well as Jack. May God be your strength and courage..Sr.Lucille
February 25, 2019 @ 12:08 pm
Wow, is all I can say Carrie! As a disability advocate for our church, I’m going to share your blog with others.
Gayle Ann Cole
February 25, 2019 @ 12:58 pm
I am a nurse practitioner, and a physician assistant educator, and a mom. I stumbled on this blog (I believe by divine intervention) and have passed it on to multiple women whom I believe would benefit from the raw honesty. I am SO thankful for the chronicle of this amazing, terrifying, awe-inspiring, tear-filled journey and feel truly blessed to be able to see into your world. Thank you, Carrie, for your heart and your honesty and the depth of your love. Prayers and hugs heading your way (again). Best, G
February 25, 2019 @ 4:22 pm
Oh Carrie. I am exactly where you are and so grateful that you are able to explain it, because sometimes I don’t know where I am. Thank you!
February 25, 2019 @ 7:51 pm
I feel you pain, love, anxiety and hope for the future. My autistic son turned 18! I’m afraid for his future. He’ll graduate this year and even though we will keep him in the school system until he’s 21, it won’t be the same, school has become his community. Who will be his community when he’s out of school? Work? Probably not. I’d he had his own way he’d watch sports on TV all day so he can “referee” them. Thank you already for your posts. They are helpful. Love, Sharon
March 4, 2019 @ 6:43 pm
I love your blog. My autistic son is 19 and just started work as a package handler for FedEx. He says loading the packages in the trucks is like Tetris. He comes home tired and talkative at the end of his shift. I don’t know if he can keep this job, or how long it will last, but he is proud and we (his family) are so proud of him.