Finding Your Voice: From IEP Tables to Legislative Change
Finding Your Voice:
From IEP Tables to Legislative Change
My voice shakes, I can feel the sweat dripping between my breasts, and my hands are visibly trembling.
I clasp my hands together, take a deep breath, and share the story I’ve spent the last year sharing.
I never in a million years thought that sharing my story would put me on a panel with people who have way more letters behind their names than I do (my count is zero)…
But I keep telling myself that those letters represent education – my lack of letters represent the years spent learning through experience.
When C got his autism diagnosis, I fell into a dark place.
I was sleep deprived, my sensory system was in overdrive, and I spent every free minute researching…
Because surely I was missing something important.
Surely it wasn’t this hard for everyone – it was my failure as a mom, who lacked an advanced degree, and my young age that made me miss the obvious answer to making – waves hands around – all of this easier.
The more I spoke, the more I collected stories of other moms like me – feeling completely inadequate, alone, and frustrated.
It’s a powerful combination…
We are hard-wired to figure it out.
Failure is not an option.
Speaking - even when my voice shakes...
It started small – at the IEP table – telling the team that, “No, we do not agree with your recommendation to put our 5 year old son in a self-contained classroom.”
We do not consent to switching him from a diploma track to a certificate track when even his same aged, typically developing peers struggle to tie their shoes, sit in their seats and “attend to a task for 5 minutes without redirection.”
When they also are more interested in the latest episode of Mickey Mouse Clubhouse than they are in learning why we capitalize the first letter of a sentence.
We shared what we did over the last three years to close the gap in knowledge and skills, the progress made, and what we envision for the future.
We proposed a new plan – one that met C where he was, and kicked the discussion of “self-contained classroom” down the curb… A discussion for another day.
We watched the IEP team push back, and ended with the team passing tissues around – because it wasn’t just our vision of our son’s future we laid out.
It was a vision for the culture of the school and how we can get creative to make sure it meaningfully includes all kids with disabilities.
I kept sharing my story.
Because if I can convince a team of professionals in one school that we can support disabled kids and their families differently, then surely we can take that on the road and convince systems that inclusion is for everyone and costs less than exclusion.
I found myself sharing my story during a workgroup of professionals who work at the state level, who run disability organizations, who have the power to make change.
“Handing families a pamphlet and calling it parent education, isn’t it,” I said.
We spend hours driving to multiple therapists, multiple specialists, multiple follow-ups per week.
I get calls from the school, no less than every other day.
We spent $30,000 in out of pocket medical expenses the year my son got diagnosed.
I have a stack of referrals to follow up on, sitting on the kitchen counter.
I spend every spare minute trying to figure out how to make time in the week for everything everyone wants us to do – and then trying to figure out how to pay for it all. It is not sustainable.”
From the IEP Table to Keynote Presentations
My comments during the workgroup led to an invitation to be a keynote speaker at a small conference for parents of autistic kids.
I shared my story again – but this time, I laid out what I hoped the future would look like:
Families getting more than a pamphlet and a stack of referrals to “help” them understand their child’s diagnosis.
Instead, a chance to be heard.
Questions answered, for as long as it takes.
Infrastructure and investment in support – rather than being forced to piecemeal a fragile support system together.
The more I shared the more I felt heard, supported, understood.
I tailored my story to fit the audience.
From sitting at the doctors office, to the IEP table, from speaking at conferences to meeting with legislators…
The same story, shared in a multitude of ways – all with one goal:
To get my son the services and supports he needs.
I went from thinking, “they don’t care…”
To knowing that the story made them care.
Now We Need Everyone to Share Their Stories
And that’s why I want to help you share your story.
Because in sharing our story – we reclaim power.
We sometimes have 90 seconds to explain to the doctor what we’re seeing and why it’s concerning.
Less than 5 minutes to tell the IEP team why the accommodation we’re requesting will make a fundamental difference in how our child accesses the curriculum.
We are sharing our story everyday, now it’s time to leverage it.
Not just at the doctor’s office or IEP table, but where our story makes the most long-term impact…
With our elected officials who literally decide what rights, services, supports – access to the community – our kids’ have, and if they find our kids worthy enough to invest in.
We have 60 seconds to explain to them why it matters, and more importantly why it’s urgent right now.
So we are bringing in long-time disability and healthcare advocate and mom to an autistic adult with epilepsy, Pattie Archuleta.
She’s managed federal grants that support children and youth with special healthcare needs.
She knows the value and impact our stories have and she’s leading a workshop so we can share our stories, even when our voice shakes, even when sweat drips down our chest, even when our hands tremble.
Because now is the moment to make sure our children grow up with (at minimum) the same rights and protections they were born with – and it’s all at stake right now.
Join us
🗓 Date: May 19, 2026
⏰ Time: 12pm EST
⏱ Length: 60 minutes (interactive)
📍 Live on Zoom
PSSST – it’s FREE to attend…
But we do require registration so you can get the link to join us.
Just click the button below ⬇️
If you’re not able to attend live, the replay lives inside the Experiential Life app.
You can learn more here: https://experiential-life.com/experiential-life-app/
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