Life Without Words: Wyatt's Story

 This weekend marks an important event... the Argonaute Syndromes Conference in Prague, Czech Republic. Families, doctors, and researchers from around the world are coming together to share knowledge, progress, and hope. Financially, we couldn’t make the trip across the ocean, so we had to settle for watching through Zoom. Of course, it’s not the same as being there in person, but I’m grateful for the chance to still feel connected. You may have noticed that I sometimes use different words when talking about Wyatt’s condition, and it might sound a little confusing. So let me break it down: Argonaute Syndromes is an umbrella term for a group of genetic mutations that affect a family of genes called Argonaute proteins. These proteins are essential for gene regulation... basically, they help keep countless processes in the body running the way they should. There are four main Argonaute genes: AGO1, AGO2, AGO3, and AGO4. Wyatt’s mutation is in the AGO2 gene. This particular gene change...

  Some people enter your life by chance. Others feel like they were always meant to be part of your story. For my family, that person is Bonnie. Bonnie is my mom’s best friend from New Hampshire. The two of them first connected back in the 90s, during the early days of the internet ... back when chatrooms felt exciting and new, and long before catfishing and online predators were the concern they are today. In 1997, when I was about 18 months old, Bonnie flew to Ohio to meet our family in person for the very first time. From the moment she walked into our lives, it felt as if we had always known her. The connection was instant, natural, like reuniting with an old friend we just hadn’t seen in a while. That first visit was only the beginning. Over the last 25+ years, our families have woven together in countless ways. We’ve traveled to New Hampshire to see her. She’s come to Ohio to be with us. Bonnie has shown up for everything - every Christmas, every breakup, every wedding,...

 Over the years, a handful of people have suggested some kind of body cleanse drink or “miracle” remedy that’s supposed to cure my son’s autism. I honestly believe most of the time it’s said with good intentions, like they really think they’re sharing something that could help. But here’s the thing: unless you’re an autism parent yourself, please understand - this is not something you should bring up to a family living with autism. Autism is not something that can be “cured” with a funky drink, a supplement, or a fad diet. My child’s autism isn’t a bug in the system that needs to be flushed out. It’s part of who he is. We went through genetic testing. His autism comes from a de novo genetic mutation. That means “from the beginning.” It’s not something I caused, it’s not something he caught, and it’s not something that will ever be erased with a cleanse. When people suggest these “cures,” it can feel like they’re saying my child isn’t good enough the way he is... or that I’m somehow...

 Yesterday I went to a furniture store with my mom. She was shopping for a new couch, and somehow the topic of my son’s autism came up with the salesperson. Do you know what her very first question was? “Oh, what is his fixation? What is it that he’s really good at?” I know she meant well, but I can’t tell you how frustrating that question is. Why is there this automatic assumption that every autistic child is some kind of hidden genius? That they all must have a “special talent” or “superpower” tucked away, just waiting to be discovered? Here’s the truth: for us, it doesn’t look like that. Maybe one day my son will develop a strong interest or talent, and maybe he won’t. Right now, every single day is about survival. The smallest tasks - getting dressed, eating, going to the store - can feel like climbing a mountain. We don’t have a superpower. We don’t have a quirky fixation that makes life feel magical. What we have is hard. What we have is real. And I know we’re not the only fa...

  Wyatt’s vocabulary is slowly growing. Most days he echoes nursery rhymes and hums along to every song like it’s his job. His words aren’t always clear, but you can hear the effort... the way his mouth and mind are trying to meet in the middle. And then, every once in a while, a phrase slips out - crystal clear, perfectly placed... and it knocks the air right out of my lungs. The other night, around bedtime, I heard him say, not super clearly but undeniably, “I wanna go upstairs.” Then, “Go to bed.” Such ordinary words. Such an extraordinary moment. It’s wild how easily those with neurotypical kids can move past the little things - how a simple sentence can barely register. For me, each new word is a firework. He’s given me a brand-new appreciation for the tiniest details of being human. Last night I lay beside him, like I always do until he falls asleep. The room was completely still. I thought he was out. Then, in the softest, surest voice, he said, “Good night.” Clear as da...

  Yesterday we took Wyatt and Sophia to the zoo. I’d been looking forward to it - and dreading it. Autism parents know that feeling well. Your brain starts serving up a buffet of “what ifs”: What if he bolts? What if he melts down? What if people stare? I’ve been in therapy lately untangling how much I obsess over what people think - of me as a mom, a friend, a sister, a daughter. I worry I’ve upset someone. I worry I’m not liked. It’s exhausting. Here’s what surprised me: our zoo trip validated what everyone keeps telling me - most people really don’t care. Not in a cold way, but in a freeing way. I was anxious about using a harness for Wyatt. Full transparency: growing up, I judged parents who used them. It looked like they were treating a child like a dog. Then I had my child - a curious, fearless explorer who wants to see everything and doesn’t always look back. Safety suddenly wasn’t theoretical; it was the difference between a fun day and a missing child report. My mo...