The Sh*t You’re Not Supposed to Talk About with Jackie Ceonzo

This is the episode where we say the quiet parts out loud.Heather and Steve sit down with powerhouse advocate Jackie Ceonzo, founder of SNACK and co-founder of Families for Disability Rights, for a raw, fearless conversation about the side of parenting and disability advocacy that rarely gets airtime—but absolutely needs to.Jackie has been featured on Good Morning America, built inclusive programs from scratch, and helped launch the Coalition for Self-Direction to protect families navigating complex needs, broken systems, and constant burnout. But she didn’t get there by playing it safe. Like so many of us, she started out overwhelmed, unseen, and determined to build what her child needed when no one else would.

“If we’re these silent soldiers, no one’s going to help us. And we’re going to drop dead if we keep trying to do this by ourselves.” – Jackie Ceonzo

In this episode, we cover the sh*t you’re not supposed to talk about—literally and figuratively. Topics too often filtered out of polite conversation or edited for public comfort, including:

• Embarrassing (but funny) moments in public
• Fecal smearing and lifelong toileting challenges
• Aggression, broken doors, and the emotional toll of staying safe
• Public meltdowns and the joy of being judged by strangers in the frozen food aisle
• Puberty, sexuality, and trying to explain hormones to someone who still presents as child-like
• Caregiver isolation, burnout, and the “dark thoughts” no one says out loud (like Googling group homes at 3AM—or fantasizing about five minutes of silence in a locked bathroom)

Jackie shares her journey raising a son with profound autism, creating SNACK so both of her sons could grow up side-by-side, and realizing that when systems fall short, parents have to build what’s missing. Her message is blunt, empowering, and refreshingly unapologetic:

“Common sense has been out the window for way too long… So that’s why I said, you know what? I’m gonna do my own thing. No one is coming to save us. So we built it ourselves.”

This episode will challenge you, move you, and make you feel seen. Whether you’re a caregiver, advocate, sibling, or policymaker, you’ll leave with a deeper understanding of what families are facing and why silence is no longer an option.We’re not here to sugarcoat. We’re here to speak the truth.Tune in. Share it. And remember: No one is coming to save us. So let's build the future we need, together.

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