[Article] What the Parent of That Kid Wishes You Knew: The Inside View of Invisible Disabilities

I’m about to filet myself open here.

This post isn’t polished. It’s not neutral. It’s personal.

When I teach a parenting workshop, I always start with a funny fail. You know the kind… meltdowns in airports, wrestling a kid into a car seat in the pouring rain. The kind of story that ends in a laugh and makes people feel connected. I’ve always thought it was important to let people know from the get go that 1) I don’t have it all together and 2) no one really does.

But those are the safe stories. The relatable ones. The ones that don’t reveal the full truth:

THAT I'M A MULTIPLY-NEURODIVERGENT PARENT RAISING A MULTIPLY-NEURODIVERGENT CHILD IN A WORLD THAT WASN'T BUILT FOR EITHER OF US.

That in those “fails” there were moments I felt like I was drowning. That I lived in fear. That I was exhausted, ashamed, and silently unraveling.

I don’t talk about how small my world felt.

How judged I felt.

I don’t talk about how hard I worked to keep it together… and how often I didn’t.

I don’t talk about the grief.

And yet, I am deeply proud of my family. Our home is grounded in connection, regulation, and so much love. We’ve created an environment that sets my child up for success. I know what a privilege that is.

But I’ve also learned that the resources this requires—emotionally, physically, financially—are more than I ever imagined.

Here’s the thing. I can hold two truths at once:

I LOVE MY CHILD WITH A FIERCENESS THAT IS UNMATCHED.

AND I GRIEVE EVERY DAY THAT THE WORLD WASN'T BUILT TO SUPPORT THEM OR THIS PARENTING JOURNEY.

This post isn’t just about my family. It's about so many of the families I work with, love, or have come to know through shared experience.

It’s not a complaint. It’s a window.

A glimpse into what it’s like to parent a child with an invisible disability. One that doesn’t show up at first glance and can’t even be explained in a single sentence.

If you’re walking this path, I hope you feel seen. If you’re not, I know you have your own struggles. I hope this helps spread compassion and understanding.

Here's What We Wish You Knew:

• If your child gets a birthday invite from someone they barely know, it might be from us—just hoping enough kids show up.

• We ask for playdates a lot. We know it might seem desperate. That’s because it is. No one’s calling us, and we’re just trying to find a lifeline.

• We always offer to host. It’s not about being overprotective. It’s how we help things go right. With us nearby, we can gently redirect, mitigate triggers, and salvage the hard moments.

• We get triggered by social media posts about other people’s lives. They are reminders of a life that is out of reach for us. So we might snooze you for a bit. Just to take a breath.

• We don’t go out much. Babysitters are hard to find and harder to trust. And the fallout of being away is a constant cost-benefit analysis.

• We spend tens of thousands of dollars a year on therapies, evaluations, and services that aren’t covered by insurance, and hours in the car just getting to them.

• We know our parenting looks weird from the outside. We’re anxious. We hover. We overthink. What you don’t see is that when we don’t stay one step ahead, things fall apart… spectacularly.

• Even the smallest gesture of inclusion feels monumental. An invite. A check-in. A smile.

• You don’t see the meltdowns. They happen behind closed doors. But if you did, you’d be floored.

• Every day, we silently hope the world will be kind to our child.

• When we hear about homework, school concerts, state testing, field trips, etc., our stomachs tighten. We’re not thinking about performance. We’re thinking about survival.

• Every decision we make involves calculating a thousand invisible variables. A trip to the store, a family gathering, a change in plans—nothing is without risk or prep.

• We email the teacher, the counselor, the school nurse, and the principal more in one month than most parents do in a year.

• Our household conversations sound like this:

  “How many of the five recommended therapies can we fit in this season?”

  “What comes first: executive functioning or sensory integration? Therapy or medication?”

  “Can we afford to go out of network again?”

• Sometimes we leave early. Not because we’re rude or flakey, but because we’re managing a sensory system on the verge of collapse.

• We’ve learned to detect microexpressions and mood shifts like a doppler radar detects a coming storm. It's like spidey-senses.

• Sometimes we’re the last ones to leave IEP meetings, because we’re crying in the parking lot.

• We are lonely. Our child is lonely. And it all breaks our hearts.

• We are exhausted.

  Exhausted by systems that fail.

  By professionals who don’t get it.

  By family members who won’t try.

  By the mental load, the advocacy, the explaining.

  By the worry. The constant worry.

THANK YOU FOR READING

If you're on this path and have invited me into your parenting journey, thank you from the bottom of my heart. It is truly an honor to walk this road with you.

If you're not on this path, thank you for peeking through the window. Your compassion makes the world a little safer for kids like mine.

---

DISCLAIMER

The information provided on this website, in blog posts, downloads, and any other materials by Transformations Therapy Center is for educational and informational purposes only. It is not intended as a substitute for professional medical, psychological, or mental health advice, diagnosis, or treatment. Accessing or reading this information does not create a therapist-client relationship between you and Transformations Therapy Center.

All original content on this site, including text, graphics, logos, images, and downloadable materials, is protected under applicable copyright laws. It is provided to you for personal use. Unauthorized use or sale of this material without express and written permission from Dr. Jennifer Weberman is strictly prohibited.