The One On My Heart

 
The one on my heart.JPG

Photo credit: Chelsea Anderson Photography

Last summer, Declan had the honor of acting as the ring bearer in a friend’s wedding. He was hesitant, at first. We made clear that we wouldn’t force him to do it if he didn’t want to, but we also told him we thought he might have fun, and it would mean a lot to the bride.

He eventually decided to do it, and the wedding itself was great. Declan was so proud of himself after he walked down the aisle; he felt so important in his little suit. The cake didn’t hurt, either.

The night before the wedding, though, was difficult.

After a brief run through at the church, everyone met at a nearby Mexican restaurant for a celebratory dinner. It was loud and crowded. It took awhile to get our food. Declan was spent, and I knew it. When I knew the noise and the wait was becoming too much for him, I took him to the lobby of the restaurant where I’d seen a few games on the way in.

We walked to the car to get quarters, and we hung out in the backseat for a few minutes. Declan visibly relaxed, and I decided it was a good time to try heading back inside toward the game.

As luck would have it, the game in question turned out to be one of those impossible to win claw machines. I tried to dissuade Declan—I tried to communicate that we very likely wouldn’t win—but I’d already promised him he could play, and he didn’t understand what I was trying to tell him.

So I let him give it a go.

Of course, he lost, and like any kid, he was let down. This meltdown wasn’t an angry one. Declan was beside himself. I gathered him up into my arms and brought him outside where he could have his moment in relative privacy. Unfortunately, there was little buffer between the sidewalk and the road. When Declan attempted to throw himself toward a moving car, I picked him up and brought him back inside. I knew he wouldn’t want to be touched, but I also knew picking him up was the only way to get him inside. The physical touch agitated him, and, in addition to his wailing, he began headbutting the floor.

I whispered breathing techniques at him, which sometimes worked but didn’t this time. I pulled up his favorite song on my phone and, just as he began to calm down, a group of women passed us on their way toward the main part of the restaurant.

“Fucking retard,” one of the women slurred.

I don’t know that I’ll ever be able to describe the emotions I felt in that moment. Angry. Angry was the first thing I felt—and not a regular kind of angry—the kind that is all consuming and so filled with adrenaline that you begin shaking. The kind of anger that seems like it will only be satisfied by hitting something. I resisted that urge, but I did yell after the woman—I don’t even remember what, at this point, and it doesn’t really matter, because by the time I had enough presence to say anything the door had flapped closed behind her.

Guilt. Guilt was the second thing I felt.

Didn’t this woman know that the meltdown wasn’t his fault? Wasn’t it obvious that I was the one who missed his more subtle cues? I was the one who placed him in a situation that could only end badly.

Sadness came next—a soul crushing sadness when, as Declan and I both calmed down, he asked innocently “What’s a retard?”

Most people will never understand what it’s like to explain to their autistic son what a “retard” is and why some margarita-laden-woman in a Mexican restaurant yelled it at him.

I don’t remember if I got bit and it didn’t really matter. The wound this time wasn’t delivered to my chest, but to my heart. When Declan bit me on the chest six months before, it was because he was overwhelmed and anxious—because he likely felt insecure and threatened. When this woman called my son a retard she did it willfully—she did it because she thinks it’s a dirty word, because she thinks people like my son are unfit for public places, because she doesn’t understand or care why meltdowns happen.

The scar on my chest isn’t a big problem. It’s a relic of my boy and the life we’ve lived together. The scar on my heart is the wound we should be concerned with—it’s a symptom of a much deadlier disease, indicative of a community that has no room for wonderful people like my son.

I will not accept that. I am not okay with a world that excludes my boy, and if I have to forcibly create room for him, I will.

My biggest regret from that day is the fact that I waited until the door closed before I thought of something (anything) to say. It’s that this woman continued on with her life unchallenged.

Sometimes I talk too much about my son’s autism—I know that. It’s a choice I’ve made because you don’t get to pretend he doesn’t exist anymore on the basis of your own discomfort. It’s a choice I’ve made because the scar on my heart isn’t as much a scar as it is a loosely bandaged, bleeding wound.