How to Advocate for Your Disabled Child Without Burning Out
How to Advocate for Your Disabled Child Without Burning Out
They say, "You have to fight for everything when it comes to your disabled child.”
I never thought I would be fighting for my child to keep the rights and protections he was born with.
When C first got his autism diagnosis, I took the “fight for everything” advice quite literally.
I walked into every meeting and appointment triggered and battle ready.
But I never really knew what I was fighting for – or against.
I just knew I had to fight – because that’s what everyone told me.
About a year in, with $30,000 in medical debt and more appointments, meetings, emails, and phone calls than I could keep up with (on top of working full time, trying to keep my marriage together, and giving my two older sons the attention they deserved), I burned out.
From Burn Out to Strategy
I kept circling around the idea of fighting and met so many providers and professionals who wanted to help – but were limited by laws and funding.
We all seemed to want the same things (for the most part).
The more I fought, the more I realized that fighting isn’t a sustainable strategy.
If I really wanted to advocate for my son and the greater disability community, I needed to understand the “systems” everyone kept talking about.
At the same time I had a harebrained idea to start a nonprofit so families in my community could access services and supports where we lived rather than driving an hour or more into Baltimore or Washington, DC.
I wanted to bring the providers and professionals to our area. I wanted to create partnerships where they could do what they do best, but in an area where families needed them most.
Advocating for Change from the Inside
It was because of my naivete and deep desire to stop spending hours in the car that made the idea possible.
It was because I stopped acting as if every provider and professional I encountered was my adversary, and started working with them as partners.
Those relationships led to partnerships with:
→ Kennedy Krieger Institute,
→ University of Maryland Medical Center,
→ Hospital for Sick Children, and
→Shriner’s Hospital…
Along with professionals from our state’s Parent Training and Information Center and local health department.
I was able to provide space pediatric therapists so kids in my community could get the therapies they needed without traveling hours multiple times a week.
We partnered with a billing company so we could accept Medicaid and private insurance.
The plan was just cohesive enough that the State Department of Health along with Kennedy Krieger funded us to make it all happen.
When I stopped fighting the people who wanted to help and started fighting for change, change started happening.
And when I understood the systems that are supposed to support our disabled, medically complex, and neurodivergent kids, I was better positioned to fight for that change.
While I no longer lead the nonprofit I founded, it still is serving families in my community today.
The knowledge I gained from taking my harebrained idea and turning it into a place that serves families is the north star of Experiential Life.
We can’t effectively fight for change if we don’t understand what we’re fighting against in the first place.
I started Experiential Life because I want families to know how to navigate the systems.
I believe with every fiber of my being that “fighting for everything” isn’t a sustainable strategy.
And now I am sharing everything I’ve learned with families inside of Experiential Life.
I don’t want to be the person that gives you advice without telling you why that advice works – I want you to understand how the systems work – the laws, the funding, and the people that work inside them – so you can advocate for your child and their needs right now.
I want you to be able to pay that knowledge forward so we have a new generation of disability and healthcare advocates that understand the systems so well that fighting for the systems change we need becomes a group project.
This is my application to be your advocacy partner.
Membership is open, and your first month is free.
Today is the day your fight for your child becomes strategic rather than a stress response.
AND, if any of this resonates, please share this with your network and subscribe to the newsletter to get instant access to future articles, weekly advocacy tips, exclusive event invites, and news you can use.