How to Be a Heart-Changer
I have been thinking about you lately.
We’ve never met. You live in West Virginia, and I live in New Hampshire.
I have five kids. My second son, Jack, has autism.
Jack told me West Virginia and New Hampshire are exactly five hundred and forty-six miles apart.
He knows stuff like this.
I bet you know a lot of stuff, too. I bet you are really smart and you think about things in ways nobody else does.
I am sorry for what happened to you, when your teachers talked to you so meanly and made you feel unsafe.
A lot of us heard the recording, where they called you names and said you couldn’t have your snack and threatened to hurt you.
I know. I know you had to carry those awful words in your heart and you had no way to tell anyone and I will never understand what was like for you.
Jack likes his snacks. He would be very, very upset if someone said he couldn’t have one. These are his favorites: cheese and crackers, Oreos, marshmallows, and sometimes applesauce.
He also loves soda, but it makes his body restless and twitchy. I tell him this is because of all the caffeine, but he thinks it’s because soda has bubbles.
It could have been him.
That’s what I think about when I hear a story like yours. I make a movie in my mind, and instead of you, I imagine it’s my son. I picture his red back pack hanging in the cubby, and his sweet, open face waiting for his food.
That’s how a mama’s brain works, my sweet child. We hear about something terrible, and right away we think of our own.
Jack’s had all kinds of teachers. Some were strict and some sang silly songs and others let him know if there would be a fire drill that day.
See, Jack hates fire drills. They are too loud for his ears.
His teachers all taught him in their own special way. They all worked very hard to reach him through autism’s unyielding barricade.
When he was in third grade, Jack was mad because he had to wear glasses. His eyes needed help. So his teacher e-mailed all the other teachers—and even the principal—and she asked them to dust off all their glasses because a special kiddo needed them. The next day they all wore their glasses to school. To show him that he belonged.
Eight hours a day. Five days a week. That’s how long you had to spend with your teachers. It’s a long time.
I wish I could have helped you.
I know there are lots of ways to help—petitions and legislature and cameras in the classroom. These are all very good things.
But signatures and laws and videotapes don’t change hearts. They don’t soften prejudice or ease fear or create connections.
My son Jack was diagnosed with autism when he was just eighteen months old. I was a young mother back then. I didn’t know very much.
I’m not so young anymore, but some days it still feels like I don’t know very much.
I lose my patience. I don’t want to mislead you about that. I lose my patience and I yell at him to stop clicking his teeth, or picking at his scalp, or washing his hands.
I love him. I love him so much I cannot breathe for it all.
Thirteen years ago, when I sat with the doctor in his little office and he told me my son has autism, I knew right then and there I was his advocate. From that moment on, I would need to speak on his behalf and research all the services and make sure his needs were met.
And I did. I did all of that for a very long time. I advocated for my son Jack.
But after a while I could tell it was not enough. The words autism spectrum disorder still made people nervous when I spoke it loud. They watched Jack jump and flap and they pointed their eyes down to the ground. They shifted their feet and cleared their throats.
I realized I had to be more than an advocate. I had to be a heart-changer.
A heart-changer doesn’t just ask for more speech therapy, or read articles about gluten-free pretzels, or decide if medication is the right route to take.
A heart-changer stands in front of another person, usually a stranger, and looks inside their mind. We listen carefully to their words, and try to figure out what makes them think.
For one single moment, you have to hold their fear and hesitation and uncertainty in the palm of your hand.
And then, you have to think about your own memories. You have to remember the way your father yelled at you, and the time you saw a breathtaking butterfly soar through the clouds, and how badly you wanted to grow and be a dancer.
Then, you have to connect the dots, like one of those puzzles you see on the menus in a restaurant.
You say, oh, you like butterflies? So do I! They remind me of my son Jack.
There is not a lot of time for the connecting. It might happen in line for the movies, or while you are waiting to pick up a pizza, or when you are buying stamps at the Post Office. You must be quick, and open.
As a heart-changer, you have to be willing to celebrate kindness.
You have to be vulnerable.
You have to believe people are good.
I believe people are good. Can you see this? Because if I don’t, I will not be able to live my life. I will exist only inside a bubble of worry and fear and withholding.
I am so very sorry about what happened to you. It was not right. I want you to know this.
When you lie in your bed at night, and you hear those awful words in your head and feel the pit of fear in your stomach, please remember. You are safe now.
You are here for a reason.
You are here to teach us.
You are here to change us.
And there is an entire community standing straight and tall behind you—mothers and fathers and teachers and therapists and superintendents and neighbors.
All across the nation, we stand with you.
We will speak for you when you can’t find the words.
We will pick you up when you falter.
We will tell our stories, and scrawl our names across forms on clipboards, and do whatever it takes to change hearts.
I know we can do this. For you, we will do this. We will make it right for you.
I hope your new teacher is the best person on the planet.
Because of them, Jack wore his glasses.
Because of them, he could see.
February 18, 2019 @ 1:07 pm
I could cry for the children. Yes, we must change hearts. I was sick when I heard that recording. Sick.
Your words and video are just beautiful.
February 18, 2019 @ 2:01 pm
Carrie, you are changing hearts and minds with your writing. I understand so much more about autism than I did before reading your blog.
The video was beautiful! ???
February 18, 2019 @ 9:39 pm
Thanku Carrie for sharing that you at times lose your temper with your Jack….I am a “nanna” who is looking after quite regularly our three grandchildren, one of whom 10 year old Maddy is on the autism spectrum scale…like you I love, love, love her with all her “why?” Questions and her on the go, can’t stop to clean up the mess I made moments, always hungry plus all the other little things that make up her character, BUT there are times like this morning when frustration and tiredness took over and I shouted at her and actually became almost like I was a child also in the way I was berating her …it doesn’t happen often but it comes on very suddenly and there is too short a distance between brain thoughts and the mouth before the words are out, then guilt follows a bit later when I have a moment to stop, reflect and tell myself …it’s too late for what’s already said in those heated moments, it’s happened hopefully Maddy, who just loves everyone, will still greet me with her endearing smile and “nanneeee” as she runs towards me out of school this afternoon, and a kiss/ cuddle before those next words of “I’m hungry nanny” … and all feels OK for now. Your posts uplift me and I thank God for them gift He has given you in being able to put on paper and share what so many of us who read your blog, feel and experience in family life when a sibling/son/daughter/grandchild has autism.
February 21, 2019 @ 8:20 pm
Thank you for your post. It reminded me of when I saw a child bullying my son in preschool. He was actually getting choked and the teacher didn’t see it. I removed my son from there because there wasn’t enough supervision and I was mortified that my son had been assaulted.
To this day, Andrew is sweet and innocent. I heard him on the phone the other day talking to At&T trying to get internet installed. He said he was “sad” that they couldn’t come for another week even though he had been without service for 2 weeks already. This is his personal style. It may not be mine, but that is how he approaches things. At 27, I can only coach him, but that might make him uncomfortable. It’s a fine line we parents live.
He needs a job righ now and I want to help. But I realize that there are organizations that provide these services to my son, so that he can be successful. As much as I want to help, they know what to do, say and how to approach the situation better than me.
I’m glad the teachers wore glasses to make Jack feel better. I am so grateful for all the help we were given over the years.