Hunger
Hello.
My name is Carrie.
I am married to a man named Joe and we have four boys and one daughter and our second son, Jack, has autism. He is sixteen.
Today I’d like to talk about something that can make people uncomfortable.
Food.
Listen, I love food. Our family loves food. You might say food is our love language.
I don’t necessarily love to cook aforementioned food, but listen, everything has its limitations.
My son Jack loves to eat. He organizes his day around breakfast, lunch, dinner, snacks, and desserts.
He loves soda. He loves tall glasses of milk and Oreos and ice cream and pretzel rolls.
Potato chips, spaghetti, cheeseburgers, pizza.
He likes to make popcorn at night, and pancakes in the morning.
It’s not just junk, though. He loves rib eye steak—which, for the longest time, he pronounced ribeee—and when we traveled to Italy and he enjoyed enormous plates of pasta in Rome, lobster ravioli in Capri, gelato on every corner.
He likes to plan meals, and decide menus, and research recipes. This makes him happy. It gives him purpose. Who am I to take that away from him?
I mean, on one hand, I am grateful. I know firsthand families whose special kiddo eat the same foods over and over, as long as the packaging and the brand look exactly the same.
Jack is six feet, three inches tall. Anyone who looks at him would never say he is overweight. But during his last appointment, the doctor emphasized things like fitness and nutrition.
Fitness. I mean, really.
It’s like one of those SAT questions: Jack is to fitness what a cat is to water. Both will swim if they absolutely have to, but they’ll screech and howl and complain the whole time.
This is not to say he doesn’t move. If stimming and jumping and hopping were Olympic events, my boy would be standing right up there on the podium, clutching a gold medal in one hand and a waffle cone in the other.
Kids with autism often have low muscle tone, a condition knows as hypotonia. It means his muscles don’t have the same tension, or resistance, as the rest of us. He lacks strength, and he doesn’t like to move his body.
I have often considered the proverbial chicken and the egg riddle—does he have muscle tone because he doesn’t like to exercise, or does he refuse to exercise because his muscles fail him?
It’s not like he has a whole lot of interests. And getting him to move is a Herculean effort.
I know, I know. Balance. But anyone who has ever met a child with autism knows balance is not part of the equation. Everything he does—every interest he has—he commits one thousand percent.
Let’s say your birthday is in a few months. Jack will start asking you what kind of cake you’d like. Chocolate? Strawberry? Or maybe ice cream! It doesn’t matter that you have en entire season to live out before you reach the celebration, he will insist on planning and researching and talking and then planning some more, and oh, yes, don’t forget the talking.
This, believe, is the very opposite of balance.
When it comes to my son and his autism, everything is dramatic, and raw, and real.
It is honest, and avid, and hungry.
Hunger is a curious thing, isn’t it?
More than just a gnawing sensation in the pit of the stomach, or the body requiring sustenance, it is a yearning to belong—to feel valued, and respected, and understood.
I long to understand my complicated son. I have longed for this since the moment he was born.
I am getting better at it, though. I am learning where to look.
A rich chocolate cake with candles and frosting.
A quiet smile, a bowl of popcorn, the kernels buttery and sweet.
Chocolate chip cookies after a long day.
Dad. For me I heard. Work was hard. I made your cookies.
In these things, I find my own equilibrium.
Written by, Carrie Cariello
Carrie Cariello is the author of What Color Is Monday, How Autism Changed One Family for the Better, and Someone I’m With Has Autism. She lives in Southern New Hampshire with her husband, Joe, and their five children.
Carrie is a contributor to the Huffington Post, TODAY Parents, the TODAY Show, Parents.com. She has been interviewed by NBC Nightly News, and also has a TEDx talk.
She speaks regularly about autism, marriage, and motherhood, and writes a weekly blog at www.carriecariello.com. One of her essays, “I Know What Causes Autism,” was featured as one of the Huffington Post’s best of 2015, and her piece, “I Know Why He Has Autism,” was named one of the top blog posts of 2017 by the TODAY Show.
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