I’ve taught her to sign at my kitchen table. I’ve called an ambulance because I thought something unspeakable had happened when her body surprised me by keeping time. I’ve argued with teachers who didn’t see her and cried over bath time because there was nothing left of me. I’ve felt my own marriage bend under the weight of appointments and acronyms. I’ve sat across from professionals who didn’t ask how I was doing and realized I didn’t know how to answer that question anyway.
I’ve worked with families navigating case management, housing, therapy, and transportation, and I’ve seen over and over that no matter how many services we line up, the emotional piece goes unacknowledged.
Meanwhile, everyone is holding their breath.
I pictured school concerts, learning to drive, prom dresses, college tours, wedding planning, and the day she’d put a baby of her own in my arms.
What I got was a handful of minutes with a psychologist who, after stacking blocks with her, told me she would never talk, never know me, never live the life I had imagined.
I pretended to be fine for a long time. I learned the laws. I translated acronyms. I took my son to soccer and my daughter to OT and smiled at my neighbors. I resented people who complained about sleep training because I hadn’t slept in years. I scrolled at 2 a.m. for answers that would make it make sense. I felt guilty for grieving and grateful and furious all at once. None of the professionals ever asked about that part, so I never talked about it.
The first time I told the truth out loud - that I was jealous of other parents, that I hated being told God only gives “special kids” to strong people, that sometimes I didn’t feel strong at all - I felt my shoulders drop.
It’s the beginning of a different kind of family, one that deserves to be talked about in full color, not whispers.
I believe you can love your child fiercely and still grieve the life you pictured. I believe resentment isn’t evidence of a bad heart; it’s evidence of an exhausted one. I believe teachers and administrators want to do right by your child but often don’t know how because no one has explained this side of the story to them. I believe saying the hard thing out loud is a form of regulation. It calms your body so you can show up in meetings, in classrooms, and at your dinner table as the parent you want to be.
I needed someone to teach me how to breathe before teaching me how to advocate.
I needed someone to tell me it was okay to be devastated and grateful in the same breath.
I needed someone who had sat in my chair to reach back and tell me that the doctor didn’t get the final say.
To tell the truth that you’re thinking but are afraid to say. To help you regulate so you can do the paperwork without losing your mind. To walk into school districts and tell administrators that behind every IEP is a family who needs to be treated like human beings. To remind teachers they can’t manage what they don’t understand. To help parents stop burning out before their child even has a chance to thrive.
It’s a short, honest read you can pick up in waiting rooms and during nap times. It will give you language for the thoughts you’ve been swallowing and invite you to see honesty as a path forward.
I take a limited number of families each season. We’ll look at your specific situation - the messy emotions, the systems you’re navigating, the relationships you’re trying to preserve - and build a way for you to advocate without losing yourself.
If you’re part of a school, conference, podcast, or organization that needs to hear this story, I offer keynotes, workshops, and honest conversations that cut through policy and get to the heart. Let’s make sure no one else has to pretend they’re fine.