How We Got Here: Life Without Words

From the very first moment I met Wyatt, I knew there was something special about him. He came into this world with his eyes wide open.. so alert, soaking everything in, as if he didn’t want to miss a single thing. While most newborns sleep endlessly, Wyatt seemed fascinated by the world around him. He looked at everything and everyone, and I remember thinking, this little boy is different - in the best way.

When Wyatt was a baby, he was actually a great sleeper. He slept through the night with no problem at all, which I now know was a blessing many parents don’t get to experience. But as time went on, we started noticing some delays. Around 12 to 18 months, it became clear that he was behind in walking and talking. He also became an incredibly picky eater—bananas, in particular, were his nemesis. I’ve tried sneaking bananas into so many foods, but he always catches me. Now at four and a half, he’ll open them just to smash them. Maybe one day he’ll eat one, but for now, smashing seems to be enough fun for him.

At his 18-month appointment, his pediatrician confirmed what we had been noticing—Wyatt was behind on things like crawling, walking, and especially talking. That appointment changed everything for us. We were referred to early intervention, and soon after, a wonderful woman came to our house once a week to work on speech with him. She tried visual boards, sign language, and so many tools, but nothing seemed to stick. Wyatt communicates in his own way, often by taking my hand and leading me to what he needs. It’s his way of talking to me without words.

On February 28th, 2024 Wyatt's developmental pediatrician diagnosed him with level three Autism, non- verbal.

We applied for an AAC device and are still waiting for the approval to go through. In the meantime, we continue to find ways to understand each other, and every day, I’m amazed by how much he teaches me about patience, love, and resilience.

Our journey didn’t stop there. We went through genetic testing—whole genome sequencing—which took what felt like forever to come back. When we finally got the results, we received a diagnosis that turned our world upside down: AGO2-related neurodevelopmental disorder.

You’re probably thinking the same thing I thought: what on earth is that? When I Googled it, I found almost nothing. Wyatt is one of fewer than 150 children worldwide diagnosed with this condition. The oldest known person with it is only around 23. The official name is Lessel-Kreienkamp Syndrome, and it’s the reason for all of his developmental delays. What’s terrifying is how little is known—doctors can’t tell us what the future holds. The syndrome was only discovered in 2020, and one child with it experienced severe regression during puberty. That fear stays with me, but so does hope.

Despite the uncertainty, we choose to live day by day. Every day, Wyatt does something that amazes me. Being his mom has opened my eyes to the beauty of the smallest things—things other parents might overlook. A few months ago, we sat and watched a movie together, Flubber. It was one of my childhood favorites, and I wasn’t sure he’d sit through it. But he did. Not only that, he laughed—big, beautiful belly laughs that filled the room. I cried. In that moment, everything felt perfect.

Parenting a child with autism has changed me. It has made me stronger, more patient, and far more grateful for life’s little moments. The small victories that might seem insignificant to others are monumental to us. And through it all, one thing remains true: I wouldn’t change a thing about Wyatt.

Every day with him is a gift, and this is only the beginning of our story! 

Kerri