Posts

If Only There Were an Instruction Manual

  I wish there was an instruction manual for raising a child with autism.   One that told me exactly what to do. One that reassured me when I lie awake at night wondering if I’m failing him. One that answered the constant question looping in my head: Am I doing enough?  I worry all the time that Wyatt’s sensory needs aren’t being met. That I’m missing something important. That there’s a piece of the puzzle I just haven’t figured out yet. But the reality is.. there can never be a “catch-all” instruction manual for autism. You’ve probably heard the quote:  “ If you’ve met one autistic person, you’ve met one autistic person .”  And it’s true.  What Wyatt struggles with may look completely different from what his friends struggle with, even when they share the same diagnosis. Autism isn’t one-size-fits-all, and neither is parenting it. Lately, things have been hard. At all hours of the day, Wyatt will scream at the top of his lungs and sometimes thrash his enti...

The Famous "Inside Out" Sweatshirt

  I never would’ve guessed that a silly, late night Temu purchase could ripple into something so meaningful for our family. I was scrolling one day and came across a cute crewneck sweatshirt for Sophia. It featured all the characters from  Inside Out 2  with the words,  “Today I Feel…”  splashed across the front, surrounded by every bright, colorful emotion. It was one of those impulse buys... cute, harmless, forgettable. Or so I thought. When it arrived, I put Sophia in it to go pick up Wyatt from school. The moment Wyatt saw her, he stopped in his tracks. He was completely amazed. He couldn’t stop staring at her sweatshirt, his eyes fixed on the characters like they were something familiar… or important. Not long after we got home, Sophia spilled juice all over it, so I took it off of her to wash later. Before I could even think twice, it was in Wyatt’s hands. And it stayed there. For nearly a week, he carried it with him everywhere... laying it out carefully,...

Christmas on the Spectrum

  Every year, as the holidays creep closer, I feel this familiar knot form in my stomach. Christmas is supposed to be magical, joyful, full of excitement and wonder. But for us- for Wyatt.. it’s complicated. And every year, I find myself stressed and overwhelmed trying to capture even a piece of that magic for him. Gift shopping is one of the hardest parts. There has never been that one toy Wyatt is drawn to at the store. There’s never been a single “special interest” we can follow to make gift-giving simple. Wyatt finds joy in things that don’t fit inside the holiday aisle at Target... music, inanimate objects, patterns only he can see. This week, his favorite thing is fixating on pictures on my phone. He’ll sit for long stretches completely immersed in one image, and if I have to exit out of it, the meltdown comes fast and hard. I’ve printed the same photo multiple times just so he can hold it, stare at it, feel grounded by it. Sometimes it is a toy. I’ll catch him lingering on...

When Your Child is diagnosed with Level 3 Autism

  When your child is diagnosed with level three autism, it can feel like the ground shifts beneath you. Suddenly, there are new words, new expectations, and a lot of emotions ... confusion, fear, sadness, relief, or even a strange kind of calm. Every parent reacts differently, and that’s okay. I remember when Wyatt was diagnosed. The truth is, it didn’t change the way I saw him at all. He was -  and still is - the same person he was before anyone said the word autism. A diagnosis doesn’t define who our children are. It just gives us language and tools to understand them better. For some parents, though, the diagnosis hits hard. It can feel like the future you imagined has suddenly changed shape. But here’s what I want you to remember: your child hasn’t changed. The diagnosis didn’t take away a single part of who they are - their laugh, their quirks, their love for certain routines, or the way they light up when they’re happy. Those things are still theirs. It’s okay to g...

Argonaute Syndromes Conference

 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...

Bonnie and The Generational Attachment

  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,...

The "Magical Cure"

 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...