$200 Beanie

...and the Autistic community doesn't want to talk about it.

Welcome to Fidgets and Fries!

Mostly free. Somewhat not.

If you’d like to honor my writings with a monetary contribution, thank you. If you already have, thank you. Your support allows me to invest in my writing in a way I hadn’t thought possible as well as pay for my son’s communication lessons. And if you are still an unpaid subscriber, thank you. Cause in a world where everyone wants their eyes on their work, you still chose to put your gaze on mine.

This newsletter rests at the intersection of the unserious ramblings of a woman full of buttered rice and dad jokes and the somewhat sophisticated stories and essays of someone who knows just enough “smart” words to sound super intelligent and insightful.

What will today’s newsletter be? Hmm…

I bought my son a beanie. A $200 beanie, if you can believe it. Well, to be exact, $184—but around here, we round up, if only to make sense of things that don't make sense. I turned this post over in my mind, wondered if it should be written at all. I thought about telling it with my voice, letting the truth of it spill out on video, maybe even doing a Live. But I don’t think I could have held back the tears, and I am not ready to cry in front of a camera.

The thing about words, though I love them, is that sometimes they’re just too much. They can be a weight, heavy stones blocking the release, blocking the raw thing that needs to be let out. But here I am, gathering my words anyway, because they’re all I have. I’m going to have to lean into them, fold them gently in my hands, shape them to carry the weight of this story, a story as difficult as any I’ve ever told.

Back to this $200 beanie. This "special" beanie, crafted for "special needs." It’s no ordinary hat; it’s armored. It wears 360-degree BSI-tested protective foam panels, boasts chin straps, and speaks of "premium quality materials." A fortress in the shape of a hat, to guard him...

from himself.

From the strong, unforgiving hands that strike his own head, a self-made thunder that leaves welts and bare patches where hair used to be.

I spent $200 on a padded beanie that looked pretty close to a regular beanie. It didn’t scream "special needs" the way other helmets would, didn’t invite so many questions. I thought maybe, just maybe, I could "shrink the problem down," make it seem smaller, something passable in public. Something that could both shield his head and soften the way the world might look at him, at us, even if just a little.

But maybe that’s the trouble—the shrinking, the softening, this careful folding in of autism’s weight on my son’s life. And ours, as his family.

This $200 beanie—this is a story the community* doesn’t want to hear. Not often, and only if told in the gentlest tones, cloaked in the finest linen. A fresh coat of paint on a house falling inward. And so I bring my own paint, brush on my own soft colors, hoping it will hold.

In so many ways, this community holds me steady. And in just as many, it lets me sink. I long to belong here, but it is not worthy of my son. So I build from the outside, traveling in a lane I carved for myself. Still, the weight of their rules, their quiet expectations, drifts over the boundary, finding its way to my door.

I write mostly of what happens to my son, and little of what autism does to him. To us, as his parents. To his brother. And I know, deep down, this community prefers it that way. I watch the way it reacts to parents who cry for help, their stories spilling like grief from their hands. I see the way they carry their pain, the rawness of it, and I cannot share it the same way. Yet, in the quiet of my own heart, I praise them. For in their openness, they reveal what life is like for families like ours, for children and adults like my son, shedding light on the shadows we all move through, each in our own way.

I find myself bending, always bending, toward where this community pulls me, even from the edges. I speak of ABA as something that helps us fight the harm that follows us like a shadow. And for many, for us, that’s true. But there is so much left unsaid, so much omitted. The cost of it. What it’s been and can still be for the child with hands that turn in on him. Nails that tear into his own skin, leaving it raw. Every week, a new bruise. A new scar. Another gash carved into the soft, tender places no one else sees. And the schools—the systems—if not for the undeniable evidence of what they saw with their own eyes, would have had us locked away, branded as abusers. Telling them, over and over, that our son did this to himself never mattered. "How could your son do this to himself?" they would ask. They couldn’t see it… until they did.

In part, I pulled my son from the public school system because I couldn’t bear to explain the lopsidedness of his head one more time. Every new school, every new district, meant starting over. I had to show them, in detail, that my son could do this to himself. Pictures, hospital records, letters from previous districts—proof enough to keep their hands from reaching for the phone the moment they saw a fresh bump on his head, proof to stop them from making their first call to report abuse.

I was tired. And I was scared.

This community offered no comfort. No soft place to cradle the weight of thoughts that threatened to break me.

It wanted to tell me: “ABA is abuse.” “You need to do Occupational Therapy.” “Speech Therapy! Music Therapy! Hippotherapy!”

But where, I wonder, is the therapy to stop my son from hurting himself? Where is the help that will teach me why he does it?

My son didn’t last long in OT, ST, PT, music therapy, hippotherapy, or any of the others. They discharged him. Told us his behaviors were "too difficult for them to manage." Some wouldn’t even work with him because his stims were "dangerous" and "problematic."

I read the comments, the endless parade of judgment. The ones who think they know everything about things they understand nothing about. "Just put your son in x, y, z," they say. "It’s far better than putting him in something that will change him into a more neurotypical person."

Well, maybe I do need him to be a more neurotypical person, one who doesn’t hurt himself. What solution do you have for me? I don’t want to change who my son is at his core, but I can’t escape the question—is this self-harm part of who he is? And when I find myself in the dark places, those are the thoughts that come to me. I say dark because they are. And yet, I know it’s my mind twisting my heart, because deep down I know—my son does not want to hurt himself.

I know this because he reaches for our hands, desperate to keep his from finding his head, from letting his nails tear at his skin. I watch him, exhausted from the blows he strikes himself. He doesn’t want this.

I don’t need someone to tell me that he needs an effective communication method. That’s what we’re working on! I don’t need someone to say, "see if it’s medical." That’s what we’re working on! What I need is help with how to help him in the meantime. And this is something I don’t think this community is ready to give.

I shared my experience with ABA, told my truth, and someone, several someones, took it as their chance to scold me, to tell me I was telling parents it’s okay to put their children in ABA. First off, I never said that. And secondly, if that’s what they believe is best for their family, I’m not judging them, because—trust me—I know what judgment can do.

This isn’t even about ABA, not really. This is about this community’s blindness to autism as something that goes beyond quirks and personality traits and low masking. It feels as if this community doesn’t know my son at all. It doesn’t know my family at all. Every word shared here feels foreign to me, like I don’t belong.

But I know that I don't belong in typical parent spaces where the air can be thick with doom, where the future feels like a constant storm. I know that pull. I’ve felt it drag me into dark places. I still do. I know how strong the pull is, how it can drag you into dark pits. I’ve been there. I still go there.

I don't want to. Just as I know my son doesn't want to hurt himself.

What I am sharing is this $200 beanie—a symbol of something this community isn’t ready to talk about. Not yet, not with nuance, not with the depth it deserves.

I had to have a conversation with my family before sharing this. I had to tell them this was something I was going to expose. I am followed by nearly 100k people across different platforms, and yet, I feel completely alone. I feel isolated. Like I can't share something like this, like I can't ask for help. Outside of my family, only three others know the true depth of the struggles we face. Just three.

I’m going to name them now, because without them, I don’t know where I’d be.

Sandra—Neurodivergent Narratives (on FB and IG). A former educator and disability justice advocate diagnosed with ADHD and Autism, and the author of the incredible book It’s Never Just ADHD (which you should buy, because it will change your life).

TJ—nigh.functioning.autism (on FB and IG). She shares my name, Tiffany, and she's a brilliant communication regulation partner. She’s been invaluable in helping me find the right ways to teach my son spelling, and so much more.

Dr. Mari Cerda—autie.analyst (on IG). A fellow Texan, an Indigenous Autistic BCBA with her own practice in Lubbock, Texas. She’s helped me understand the behavioral side of my son’s actions, giving me the clarity I needed when the fog of confusion set in.

This is my team. These are my friends. They are the only ones who have been with us through the hospital stays, through the sleepless nights. They are the only ones who have seen the heartbreaking pictures, who know the pain I write about, who understand the fear I carry for my son. They know.

The problem, though, is that they are scattered across the globe. I need immediate support in my real-life community, a place to rest when I’m removed from the vastness of the online world. But I also wanted an online community for those like myself to congregate. I wanted to create a space for parents and caregivers of Nonspeakers—a place where we can come together and find each other, where the distance between us doesn’t feel so great.

I hope that *this space can become what I know that it can become.

For now, I will continue to try to help my son and I will wait for that $200 beanie to come in the mail.

*Note:

• This piece mentions ABA, but it’s not about ABA. It was provided only to give context to what I’m choosing to share today.

• When I speak of "this community," I mean the community that is most neuro-affirming, autistic adult. i will generally say "overall autism community, if I want to talk about ALL of us; parents, autistic adult, therapist, healthcare provider, professionals, etc.

• To join this Nonspeaker Caregiver/Parent support group, it is on Patreon under the “Shoestring” Tier. Here is more about the community: Supporting Each Other on the Journey of Nonspeaking Communication and Community

  The "Shoestring" tier is designed specifically for families of nonspeakers seeking community, support, and connection. Together, we’ll create a space where every family member feels heard, respected, and understood. Join us for a monthly subscription and become part of a community that truly cares.

  Benefits:

  1. *Monthly Virtual Meetups*

  Connect face-to-face with other families navigating similar experiences. These monthly meetups offer a safe space to share challenges, celebrate milestones, and explore new ideas in nonspeaking communication and support.

  2. *Community Chat Access*

  Gain access to an exclusive, ongoing chat community. Here, we discuss daily life, share resources, and find understanding and encouragement from people who truly “get it.”

  3. *Shared Resources & Insights*

  As a member, you’ll receive curated resources, from recommended books and tools to insights on supporting nonspeaking individuals. This community brings together our collective wisdom to learn and grow as families.

  4. *Monthly Theme Discussions*

  Each month, we’ll focus on a specific topic related to nonspeaking life and communication, from advocacy and education to wellness and family dynamics. These guided discussions create a space to deepen our understanding and connection.

  5. *Direct Support and Connection*

  Join a supportive, empathetic group of families who are here to help each other through every step of the journey. From advice to personal stories, this tier is all about fostering strong bonds and mutual encouragement.

  • There is a support tier for those who do not fit the criteria for the Shoestring tier but want to offer support anyway, and it is called Cottage Fries. This is a general support tier for the Nonspeaker Parent and Caregiver group. It is not a general support tier for the whole Patreon Community like Waffle Fries is. So, this tier won't have the benefits of what this Patreon community offers, BUT it does have some benefits and I think they are pretty swell!

    First thing, this tier was created because many of you asked if there was a way you could support this growth and sustainability of the Nonspeaker Parent and Caregiver group since it was only for Parents and Caregivers. This is a way to provide ongoing support for that group. Thank you.

    NOTE: THE NONSPEAKER CAREGIVER GROUP DOES NOT LAUNCH UNTIL DECEMBER 1ST, BUT I WILL PROVIDE WEEKLY UPDATES ON HOW THE LAUNCH OF THAT GROUP IS GOING AND AIDAN'S PROGRESS SHOULD YOU JOIN THIS TIER BEFORE LAUNCH

    Benefits:

    • Weekly check-in and updates on how Aidan is doing with not only Spelling but just in life

    • Periodic check-in with how the group as a whole is doing in general (no member specific updates)

    • Monthly letters from one of us Hammonds (this will be downloadable)