#30 When systems fail, parents rise!

Andrea in a purple flowered dress, her son in a green button down, and her husband in a purple jacket all standing in nature, holding hands and smiling.

“We repeat what we don't repair. If he can't learn the way we teach, then we have to teach the way he learns.” —Andrea Lawson

You Are Not Alone. Even When It Feels Like You Are.

Here is something nobody tells you when you bring a tiny human home from the hospital with special healthcare needs: there is no manual. There is also no manual for what happens when that tiny human has needs the world hasn't quite figured out how to meet yet. You just show up. And then you show up again. Sometimes after five hours of sleep. Sometimes after a shower that felt like a spiritual event. This is the honest, unglamorous, occasionally transcendent reality of raising a child with a rare condition.

The Board of Directors Nobody Signed Up For

This is how it works: not in dramatic movie moments, but in small hinges. A therapist who pauses and asks how are you doing? A geneticist who fights for you behind the scenes. A stranger at a meet-and-greet who says, have you heard of this program?

“Build your board of directors”, Andrea says. Find your ride-or-dies. Think of it like a company — who do you want in your corner? Be the CEO of your child’s team.

The Things That Should Be Said Out Loud

Parents of children with complex needs are quietly, regularly pushed out of jobs — or passed over, or penalized — because employers view the reality of their lives as a liability. Too many appointments. Too much unpredictability.

These are not complaints, but facts about a system that was not built with these families in mind. 

Andrea is sitting in the rooms where those decisions get made. She is one of the few…and that needs to change!

Sitting at the Table

Andrea serves on multiple state advisory councils. She is intentional about taking up space — lifting perspectives that might otherwise stay invisible, making sure that people who live experiences like hers are part of the conversation when systems are built.

This is not radical. It is common sense. And yet.

We repeat what we don't repair, she says. Policies shaped without input from the communities they affect just keep sending everyone back to the drawing board. Parents' voices aren't a nice-to-have. They are the whole point.

What She Wants You to Know/Takeaway

Take time to process. Be present, even when the road isn't straight. Celebrate in the hallway. Build your team. Trust your gut. You carried this child. You know them better than any chart does. And find community. Because the loneliness of this path is real, but so is the warmth of the people who've walked it.

Resources & Links:
Thriving Together: Navigating Health care systems with Confidence PACER Center webinar with Andrea, Haley and Dr. Tori Bahr.

Help me Grow Birth to 3 program

The Lend Project Leadership Education in Neurodevelopmental Disorders

The Masonic Institute for the Developing Brain

The Institute on Community Integration

ECSE Early Childhood Special Education

ECFE Early Childhood Family Education

Melanie Demore: You gotta put one foot in front of the other and lead with love Careful, it’s an earworm!