Every month, I get dozens of messages on Instagram from parents, grandparents, and caregivers who’ve just heard the words “agenesis of the corpus callosum (ACC)” for the first time. Some are moms still pregnant, scared about what’s ahead. Others are grandparents wanting to know what life might look like for their grandchild.
This is our story—not because it’s the only story, but because it’s ours. My daughter, Lillie, is seven, and she was born with ACC. Around here, we call it her “race car brain”—because it works differently, but it’s powerful, fast, and uniquely hers.
The Mask She Wears
One of the most common things you’ll hear from parents of kids with ACC (and other neurodivergences like ADHD or autism) is the idea of masking. Masking is when a child spends all day holding it together, blending in, managing themselves to appear “typical” — and then falls apart at home.
That’s Lillie. She’s a people pleaser, a perfectionist, and she desperately wants to be “just like everyone else.” At school she raises her hand, does her work, pushes through the noise, and hides her anxiety. At softball she smiles, even if she’s on edge. In public, she looks like your average seven-year-old.
But masking takes a toll. Her pitcher of water empties fast, even when no one else sees it. And when she walks in our front door, where she feels safe, she finally lets go.
Meltdowns vs. Tantrums
When people hear about “meltdowns,” they often think of toddler tantrums. But they are not the same thing.
- A tantrum is goal-oriented. A child wants something (a toy, candy, attention) and melts down to get it.
- A meltdown is overwhelm. It’s not about wanting something — it’s about not being able to cope anymore.
Lillie’s meltdowns last 45–90 minutes. They include screaming, crying, sometimes hitting or kicking, and always exhaustion. They’re intense, and they’re not something she can just “snap out of.”
We’ve learned to manage them better over the years with therapy and strategies. We can often shorten them, or help her reset before they spiral. But they still happen, usually two or three times a month. And they leave everyone drained.
The hardest part? When it’s over, she’s fine. She bounces back as if nothing happened, while the rest of us are left with whiplash.
Anxiety Spirals
Her anxiety is often the trigger behind these meltdowns.
Bedtime is when it shows up the most. She needs to know exactly what tomorrow holds, and the day after that, and the day after that. We’ve created visual schedules in her room and given her a planner she carries everywhere. She checks it constantly.
But when the unknown creeps in, her brain spirals. If we don’t know the answer to “When will the rained-out softball game be rescheduled?” or “Can my friend come over this weekend?”, it’s like pouring water straight out of her pitcher.
She hyperfixates. She cannot let it go. She will ask the same question over and over, unable to move forward until she has certainty. And sometimes, life just doesn’t give us certainty. That’s one of her hardest battles.
Why Home Gets the Hardest Version
People sometimes assume that if she can “behave” at school, then the meltdowns at home are a choice. They’re not.
Home is where she feels safe enough to crumble. It’s where she doesn’t have to mask. It’s where she knows we’ll love her, even when she falls apart.
That’s why she saves the hardest parts of herself for us. It’s exhausting, yes. But it’s also a reminder that home is her pit stop. Her safe lane off the racetrack. The place she can finally let go.
Coping in Real Time
We’ve found tools that help, even if they don’t erase the meltdowns:
- Chewy candy or gum for sensory input.
- Evening activities (like softball or biking) to burn off energy in a structured way.
- Low dye, low sugar, low gluten diet that evens out her moods.
- Consistent sleep routines (though summer sun makes this a challenge).
- Therapy techniques like deep breathing, breaks, or “reset walks.”
These don’t fix everything, but they give her ways to refill her pitcher a little at a time.
The Hidden Fatigue
One piece that’s invisible to most people is fatigue. Lillie’s brain works harder to do what comes naturally for others. Without the corpus callosum, she doesn’t have as many “highways” to transfer information across her brain. She’s built detours and backroads, but they take more energy.
That’s why she can keep it together all day in public, then unravel at home. Her race car brain has been running at top speed, and eventually, it needs a pit stop.
If you’re new here because ACC has become part of your story, welcome. You’re not alone.
I’ve written more about our life with ACC—the joys, the struggles, and everything in between. You can find all of those posts here. If you are new to disorders of the corpus callosum, I also recommend checking out the NODCC's website or on Facebook. The NODCC is an amazing resource—they host webinars, have a large and supportive Facebook community, and hold conferences to learn more about the diagnosis, ongoing research, and to connect families together.
Because a race car brain doesn’t mean a broken brain—it means a different kind of magic. ✨
