I haven’t stopped thinking about it. Keegan, my 9 year-old, said something a few days ago. Something unexpected. Something that caught me off guard, then made me a little sad, then made me shamefully wish for the impossible, then made me snap back to reality, then made me think. A LOT. Funny how 9 year-olds, although full of attitude and sass, can unintentionally give you some much-needed perspective.
He recently got his first yearbook, and he’s very proud of it. He takes it to school every day because he and his friends like to look through it together. I mentioned to him how much fun it will be to look through as he gets older. He told me, “Maybe I can show it to some of my relatives, like Grandma and Grandpa, and my cousins.”
And then he said, “And when Easton is older and doesn’t have autism anymore, I can show it to him.”
I felt a knot in my stomach. “Easton will always have autism, Keegan.”
“But, you’re right, when he gets older and can understand it a little better, you should definitely show it to him.”
And that was the end of the conversation. It was 6:30 on a Monday morning (deep thinking should not be allowed at that time, on that day). I needed to finish getting Easton ready for school and head out the door. But first, I stepped into the other room and quietly told the Hubby what he said, then realized I was choking back tears. I swallowed them, took a deep breath, and went about my day, his words in the back of my brain: “When Easton is older and doesn’t have autism anymore…”
Throughout all the informal, spontaneous chats I have had with Keegan over the last couple years about his brother having autism, I had never thought to tell him these five, very important words: “Easton will always have autism.”
We will help him succeed, we will help him communicate, we will help him learn, we will help him be a kind-hearted, funny, compassionate friend to others. But his autism will never be gone.
But, why wouldn’t Keegan assume that based on things I have told him? “Your brother has autism, which is why he needs extra help from teachers and therapists. We’re all trying to help him learn. We’re all trying to help him talk. We’re all trying to help him understand what’s going on around him.” In Keegan’s mind, I was saying “we’re helping him get better,” which to a 9 year-old, probably translates to “we’re getting rid of his autism.”
I have wondered to myself, “What would Easton be like without autism? What if, one day, he just…grew out of it?”
Am I ashamed that the thought has even entered my mind? A little. But here’s the thing. Doesn’t every parent, everywhere, wish their child didn’t struggle? Doesn’t every parent want their child’s life to be easier, free of bullying, free of communication barriers, free of dirty looks, free of judgement, free of hardships? And, what if it is because that means life would be slightly easier for us, their parents? That it would mean we would worry slightly less about them and how they are being treated and how they get through their day and what their future holds. That sometimes, I just want to be able to ask him “How as your day?” or “What did you do today?” and for him to be able to answer me. That when I say “What’s wrong?” — I want him to be able to tell me. Is that so horrible that we’re not allowed to think or say it?
There are people in the autism community who make parents of autistic kids feel ashamed and guilty for wishing their child didn’t have autism. Autistic self-advocates who scream “THAT MEANS YOU HATE US AS PEOPLE!” and “YOU HATE AUTISM? THEN YOU HATE YOUR KID!”
Well, I’m calling bullshit.
I can’t speak for Keegan, but I heard disappointment in his voice. In his “Oh” after I told him Easton will always have autism. Guess what? He’s allowed to be disappointed by that. He sees kids every day, talking and interacting and joking around with their brothers or sisters. He knows his brother is different, and he’s proud of that. But, he also knows he doesn’t have the same type of brother that so many of his friends do. They don’t lay in their beds at night, laughing at gross, immature boy stuff. They don’t tell jokes to each other. They have never had a real conversation. Keegan wants that, I can tell.
I think he was looking forward to the day when his brother wasn’t autistic anymore, so he could do more with him.
And those are really legitimate feelings to have.
I wonder what those same guilt-inducing autistic self-advocates would to say to my 9 year-old? “YOU’RE DISAPPOINTED YOUR BROTHER ISN’T GOING TO OUTGROW HIS AUTISM? WELL THEN, YOU MUST BE DISAPPOINTED IN HIM AS A HUMAN BEING!”
Here’s what I know, for me, in my life. Autism sucks sometimes. I have said the words “I hate autism.” I have never uttered the words “I hate Easton” or thought “Easton sucks.” I believe I am completely allowed to have those feelings, in those moments, just as I am allowed to be frustrated beyond belief with Keegan’s attitude or talking back or not listening, or whatever it is, that, in the moment, makes me a human being who is tired and irritated and at my wit’s end. I know that both my kids drive me absolutely batshit crazy sometimes. And if you’re a parent and you say your kids never drive you crazy, you are lying. As in, your pants are on fire and they are hanging from that telephone wire. You are a liar. I know that when Easton is driving me crazy, and the things he’s doing that are driving me crazy are directly related to his autism, I’m allowed to say “autism is driving me crazy right now.”
I know that autism is fascinating and heartbreaking at the same time.
I also know that if Easton didn’t have autism, he wouldn’t be Easton.
I just can’t even envision it. I would miss him. A lot.
And Keegan is learning more things about real life and struggles and hardships and patience and forgiveness and compassion than any text book or any standardized test could ever teach him.
He’s learning how to play with his brother, who sometimes isn’t the easiest kid to play with.
He’s learning how to stop and feel the water.
He’s learning how to lead.
He’s learning how to be kind and patient.
He’s learning that normal is overrated.
And he’s learning how a sense of humor, above all else, will get you through the crazy moments.