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  • Writer's pictureCindy

Stories of Nolan

We tell a lot of stories here. It’s kind of the purpose of a blog, I suppose…

But one story we will never be able to tell is Nolan’s. Sure, we tell stories of how he affects our lives… And we speculate on how he feels in any given situation, but only Nolan will ever be able to tell his story.

I suppose it’s like the difference between a biography and a memoir. Sure, we can give you facts along with our impressions of a situation, but we can’t know what it’s like for him in any given situation. And it’s hard (at least for me) knowing that we can’t convey what he’s going through.

For example, Monday night he let us know that he was tired and ready for bed (at least that was my impression). He told us by initiating the last step of his bedtime routine—he started brushing his teeth BY CHOICE. Now, as his parents who’ve never seen him do this (or execute all of the steps of brushing his teeth without any prompting along the way). He found his own toothbrush in the toothbrush holder, opened the toothpaste, added toothpaste to the bristles, and started brushing.

When I realized that he was actually executing this task and not just using the toothbrush as a prop to communicate that he was ready to brush teeth and go to bed, I was surprised. Not only was I impressed that he took the initiative to start and then followed through on a task that I wasn’t aware he was entirely capable of doing independently, I was super proud of him for it. Plus, he gave me that cheeky smile he gets when we’re being silly, so my guess is that he thought my reaction was hilarious.

What I imagine Nolan was thinking (because in my head he’s mostly sassy teenager… okay, he totally acts like one sometimes, so he probably is) was, “Of course I can do this, Mom. You’re so goofy! I’m laughing at how big of a dork you are.” But for all I know, he was thinking something entirely different. Maybe he was thinking about someone at school that he’s got a crush on. Maybe he was thinking that it’s hilarious how gullible I am and actually believed that he needed help for all this time. Maybe he was angry that he had to start the bedtime routine without me, but I misread his reaction.

The truth is we may never completely understand his perspective. But it’s occurred to me that we never addressed the fact that while our stories include Nolan, they’re not exactly his story. We post stories of our family and the way we navigate through the world—both as individuals and as a team. But the voice that’s clearly missing is Nolan’s.

I would love to know what's going on in his mind...

Let me tell you, there’s nothing more I want in this life than to hear Nolan’s story. And I hope that someday I will. I’m optimistic that he may find his voice through some means—whether it’s typing/ writing (like Carly Fleischmann and others), some yet-to-be-invented technology, speaking, telepathy or peeing in a snowbank… How he finds his voice is not as important as that he’s given every opportunity to find it so that when he’s ready, he can tell his story.

There’s a common idea in work that’s focused on the disabled, neurodivergent, and other under-represented groups that says, “Anything that’s about us but without us is not for us.” That idea often weighs on me as I work to represent my son and everything he is. I want the world to know what a funny, sweet, amazing, and (yes) flirtatious human being he is. But I also want to be clear that all I can present is my own perspective. As much as I want Nolan’s perspective to be a part of this blog, it’s just not an option right now. If/when that changes, you’ll be the first to know.

I do try my hardest to understand Nolan’s perspective, but even that is influenced by my own perspective and biases. It’s a bit like being colorblind and trying to describe what colors are in a garden. If I can’t see purple because I’ve never experienced it, I’m not going to be able to understand what an iris looks like to someone who isn’t colorblind.

But for now, we do what we can to explain what we see of the world and how Nolan fits in it. I’ll do my best to include him and his reactions—even if we can only speculate as to his perspective. And if that changes and he’s someday able to add to our stories, you know we’ll be shouting it from the rooftops.

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There now are glasses for the color blind, so I don’t think a voice for Nolan is out of the question. We just have to pray it happens soon, so the whole world can understand the people that currently don’t have a voice.

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