Life Without Words: Wyatt's Story

  If you’ve followed our journey, you’ve probably heard me mention that Wyatt was diagnosed with AGO2-related neurodevelopmental disorder, also known as Lessel-Kreienkamp Syndrome. But what exactly is that? Let me break it down as simply as I can - for anyone who’s curious, confused, or just wants to understand a little more about our world. Lessel-Kreienkamp Syndrome is a rare genetic disorder that affects brain development, communication, learning, and overall behavior. It’s caused by a mutation in the AGO2 gene, which plays a very important role in how cells in the body (especially in the brain) communicate and function. This condition was only recently discovered in 2020, and as of right now, fewer than 150 children worldwide have been officially diagnosed with it. It’s considered an ultra-rare disorder. When we first got Wyatt’s diagnosis, even our doctors hadn’t heard of it. I did what most parents do - I googled it.  And… there was hardly anything out there. No guideboo...

  No two snowflakes are the same -  and the same is true for autism. When most people hear the word “autism,” they picture a single, defined idea: meltdowns, rigid routines, maybe even someone with a hidden genius talent. But the truth is, autism looks different in every child. Just like snowflakes, each child is beautifully unique, formed by a different path, environment, and experience. Wyatt doesn’t always fit the image that people expect when they hear that label. That’s the thing with autism - it’s not one-size-fits-all. It’s not a checklist or a textbook definition. It’s a spectrum full of complexity and nuance. Wyatt has taught me to stop expecting autism to look a certain way. He’s shown me that love can look like tight squeezes and spinning in circles. That communication doesn’t always come through words - sometimes it’s a hand tugging you to what he needs, or a grin that lights up a room. I used to wish I could peek into his mind, just to understand how he se...

  One of the scariest moments of my life as a mom was the day Wyatt unlocked the door and eloped from our house while I was in the shower. In just a few minutes, everything changed - my heart still pounds when I think about it. Thankfully, he was safe. But the fear of what could have happened lingers with me every single day. Elopement (wandering away) is a reality for so many families with autistic children, yet it’s something people rarely talk about unless they’ve lived it. Kids like Wyatt have little to no sense of danger. They don’t always understand boundaries, and they are incredibly fast. You think you’re being careful, but it takes seconds for them to slip out a door or window. Since that day, I’ve changed so much about how our home is set up. Here are a few things we’ve done to create a safer environment for Wyatt: Added extra locks high up on doors and windows, well out of his reach Installed door alarms that alert us if a door is opened unexpectedly Shared our ...

Growing up, I always had an attraction to music. There was never a specific genre.. just songs that spoke to me. Realistically, that ended up being a lot of country music. I’ve always been drawn to the storytelling songs, the ones that make you feel something deep inside. I’ve often heard there’s a unique connection between autistic children and music, and now, as Wyatt’s mom, I’ve seen that magic with my own eyes. Wyatt loves music. Nursery rhymes are his favorite, and he’s a gestalt language processor, so much of the speech he uses comes from the lyrics he hears. But it’s not just the words... it’s the way he experiences music that takes my breath away. He has this sensory chair that he loves to spin on. He’ll spin for hours, lost in his own little world. But when a powerful song comes on - a song with a story, with emotion..you can see the difference. Wyatt will spin with his eyes tightly closed, as if he’s pulling the music into his soul, as if he’s trying to feel every note i...

  This is something not many parents talk about.. vacationing without your kids. Whether you’re a parent of a child with special needs or not, there’s a unique kind of guilt that creeps in the moment you decide to take that trip. Recently, my husband and I had the opportunity to get away for a few days. The kids stayed home with their grandma, who loves them dearly and takes amazing care of them. By all accounts, everything was fine. The kids were safe, loved, and happy. But there I was, lying in a hotel bed, scrolling through pictures of Wyatt and Sophia, and my heart hurt. On one hand, I wanted to enjoy myself. I wanted to relax, have fun, and soak in the much-needed break. Parenting...especially parenting a child with severe autism - can be emotionally, mentally, and physically exhausting. We tell ourselves we deserve this time. On the other hand, I missed them so much it almost ached. I kept thinking: Are they okay? Do they miss me? Do they know how much I love them? T...