Did You Know?
You may not know this, but a couple of months ago I un-friended you on Facebook.
I mean, we weren’t exactly friends in the regular sense. We never met for coffee or talked on the phone or texted each other. We don’t even live in the same state, and I haven’t seen you in over ten years.
I did enjoy scrolling through my newsfeed and seeing your name pop up every once in a while, and looking at pictures of your family and your dog.
But then one day you posted a joke about someone riding a short bus, and my stomach kind of flipped. I was surprised, and sad.
Did you know my son Jack has autism?
Maybe you didn’t. You only met him once, when he was less than a year old and we hadn’t yet heard the diagnosis that would change our lives forever.
Mrs. Cariello? I believe your son has something called Autism Spectrum Disorder.
I bet your children are healthy and whole and they would never flap their hands or yell out f&^% when the grocery store doesn’t have the right kind of frosting.
He is healthy.
He is whole.
He does flap his hands and yell bad swear words in the grocery store.
But he does other stuff, too.
He bakes cakes and he puts his hands over his ears when fire trucks go by and at bedtime he lines six pillows along the side of his bed. I don’t know why.
Every morning he takes a bath at exactly 6:30 am, and then he checks the battery on my laptop. If it’s low, he plugs it in for me. Then he makes himself breakfast—this week it’s two egg whites with toast because he heard on the radio that egg yolks are bad for your cholesterol.
He is funny and interesting and surprising and mysterious.
Here’s the thing, though. I’m not interested in convincing you to like him.
I’m only interested in convincing you to step back, and make room for him.
Did you know we have to point things out to him all day long? I don’t mean trains and birds and little brown puppies walking down the street—although we used to have to point stuff like that out when he was little, so he would look at us and then look at the puppy and realize we were talking to him.
Jack, Jack! Look at me. Look at Mommy. Do you see the dog? Woof-woof, dog!
Now we have to actually name feelings and emotions for him; things you and I take for granted because we can figure out if someone is angry or frustrated or worried by the way they twist their mouth or move their eyebrows.
Jack, Jack! Look at me. Look at Mommy. I am angry now. I am angry you said a bad word.
And when we’re not pointing out puppies or trying to explain what it means when we frown, we have to name his own internal dialogue—his own behavior—so he may one day recognize it for himself. In a way, we are his mirror.
Jack, Jack! Look at me. Look at Mommy. You are jumping a lot. How does your body feel?
Did you know how hard it is to raise a son who has autism?
Constantly, I have to watch him to make sure his new medication isn’t making him feel depressed and I worry if he’s sleeping enough and I think about how he’ll ever drive a car or manage a checking account.
Did you know how hard it is to be a child with autism?
Can you imagine what it’s like to exist in a perpetually challenging world and try to figure out all the complicated rules and understand why people say avocados cost an arm and a leg when all they really mean is that guacamole is expensive?
He is my son. What you say, and write, and think about him—and others like him—matters.
He matters.
Trying to convince people of this is like laying bricks in a long, crooked line. They are jagged, and heavy. Many are chipped at the corners, and they feel dusty and dry when I turn them over in my hands. I’m not sure what I’m building exactly, but I cannot stop.
This is why I can’t be friends with you Facebook. Because of the bricks.
I want you to know I believe in your goodness.
I have to, you see. I have to believe that he has a chance in this world and people won’t snicker when he walks by or toss his job application into the wastebasket because he doesn’t know how to drive. Otherwise I will curl up into the fetal position on my bed, and never leave my house.
Please, be mindful of the things you say. Be mindful of the things you write, and post, and share. If you’re not sure whether a joke is funny, or hurtful, or mean, pause for a moment. Think of a boy named Jack.
Picture his soft brown hair, and his blue eyes, and the way his glasses slide down his nose.
Picture the way he walks to the end of our driveway every morning and stands by the mailbox and waits, with his head down, for the short bus to turn the corner and come to a stop.
Picture a path made out of bricks. At first, it looks like a path to nowhere–little more than a haphazard road without destination. But if you follow it carefully, if you step around the chipped corners and the cracked edges, you will find it leads to a clearing. In this clearing stands a house.
This house is sturdy and strong. Like the path, it too is made of bricks. And inside, there is enough room for everyone.
#houseofjack
Paula Bakarich-Christie
June 5, 2017 @ 5:15 am
I think you may the wrong person.
First I don’t have a dog.
And my 5 year old daughter have Autism, she is high functioning…but I find her to clever for her own good…some days.
I could never judge another child with Autism as I have a beautiful Autistic daughter myself.
I don’t think we have ever meet?? If so, can you jog my memory.
I do read your blog which I find very interesting…for want of a better word.
Thanks Paula
Terry
June 5, 2017 @ 5:15 am
I understand your fears. My son also rode the “short bus” not because of Autism. My son doesn’t walk due to cerebral palsy and my husband and I have to tend to all his personal needs. He does feed himself. He is 37 now and even though he is educated and even has a master’s degree and is a genius with computers he has a very difficult time getting beyond the prejudice of employers. Just like you I worry about the future and tend to look too far into the future instead of taking one day at a time. Thank you for your honesty in these posts. I don’t feel so alone in my fears.
Tammy Shah
June 5, 2017 @ 5:43 am
Everything you write touches my very soul. The weekend before last, we ventured out camping. My Ethan loved it, he loved the outdoors, and especially the family time. It made him tired and a little grumpy sometimes, but he loved it. We took a run to a grocery store. It was busy. It was different. He was overwhelmed. I saw the looks on peoples faces as my sweet big boy fell to pieces and I tried to hold him together in my arms talking softly to him. I saw those people stare…judge…scorn us. I had no time for teaching them, I just held by boy tight, my head high, and we rode the tide. Thank you for sharing Jack with people like me.
GP
June 5, 2017 @ 7:33 am
Wow! Beautifully said. Thank you!
Mary anne may
June 5, 2017 @ 3:44 pm
Dearest Carrie, you touch my heart and soul, too.. I’ve been reading your blog
for months, they are beautiful, heart felt and sometimes heart wrenching!!!… I’m the grandmother of a child who has not been dIagnosed …I have concerns…the future is frightening…daunting…Thank God for family support !you give me hope, inspiration and quiet my mind for a little bit…thank you for being so selfless and strong… i know it’s far from easy…God love you , your family and Jack ?
Kelly
June 5, 2017 @ 4:27 pm
You have made me a better teacher. Thank you from the bottom of my heart.
Jean Carter
June 6, 2017 @ 8:28 pm
Hi Carrie, perfectly said, thank you! My son is now 21 and is high-functioning Aspergers. Nothing hurts my heart more than the cruel actions of people and who knowingly tease, hurt, and torment any person with any disability. God bless Jack! Jean C.
Donna
June 19, 2017 @ 9:07 am
Carrie,
I hope it’s not me! Well we’ve never met, so probably not. I want you to know, I ride the “short bus” every day to school. I have a beautiful nephew, who rides every day. And adorable grandson who rides when the little yellow bus doesn’t irate him. Both boys have Autism. Me? Well, I am an assistant, to the children with Autism, Cerebral Palsy, Downs Syndrome, and any other disability. What a joy these children have brought into my life! I see their humor, their scrappiness, their strengths, their joy. They share so much with me, even if they are non-verbal. I love these kids and their quirks. What a blessing they bring to us all.