Seventeen People, One Big Blue Van, and a Whole Lot of Hope

What happened when a crazy idea became a week of advocacy, friendship, open doors, and unforgettable moments in Washington, D.C.

There are trips you plan.

And then there are trips that somehow become so much more than the itinerary.

I came to Washington, D.C., knowing what we hoped to accomplish. We wanted to talk about special education. We wanted people making decisions about the future of the Department of Education and IDEA to understand what those decisions actually mean for students with low-incidence disabilities, families, teachers, and communities.

But we came with another goal, too.

We wanted to create space for current and future leaders—professionals, families, and self-advocates—to find their voices, use them, and begin to understand the power they have to create change.

We came prepared with talking points and handouts. We had meetings scheduled. We had stories to tell.

What I don't think any of us could have prepared for was everything else.

Fourteen people under one roof in a VRBO (3 stayed elsewhere).

Meals around a shared table.

People coming and going, comparing notes, preparing for the next meeting, laughing about something that had happened three hours earlier.

And then there was Big Blue.

Our very bright blue minivan that carried us through the streets of Washington, D.C., from meeting to meeting. I mean, it was perfect for our group because you literally couldn't miss us coming. We piled into that van with bags and papers and phones and snacks and probably far too many opinions about navigation.

We got lost.

We laughed.

We figured it out.

We showed up.

And somehow, doors just kept opening.

The People Who Got Us Here

None of this happened because one person sent an email or made a phone call.

It truly took a village to pull this off.

There were people behind the scenes making introductions. People who helped us understand who we needed to talk to. People who volunteered hours of their time helping us plan and prepare. People who opened doors that we could not have opened ourselves.

We had people donate their professional expertise pro bono—helping us schedule meetings, prepare for those meetings, understand the landscape we were walking into, and make sure we were ready when the doors opened.

That generosity mattered enormously.

There were people who challenged us to sharpen our message and reminded us when to lead with data and when to simply tell the truth of our lived experience.

And there were so many people cheering us on from home.

People financially supported this trip.

People sent messages of encouragement.

People followed along, shared our posts, prayed for us, sent love, and reminded us that we had an entire community standing behind us as we walked into those rooms.

Every bit of it mattered.

And I especially need to thank my friend and colleague, Dr. Amy Parker, who was my partner in thinking of and turning this crazy idea into something real.

There were so many moments along the way when this was simply an idea. What if we brought people to Washington? What if we could bring together self-advocates, families, professionals, and future leaders and help them tell their stories directly to the people making decisions?

And then Amy and I started saying, Okay. How do we actually do it?

And somehow, together—with a whole lot of help from a whole lot of people—we did.

We raised almost $15,000 because people believed enough in this idea to help make it possible. We pulled together an incredible group of people in a remarkably short amount of time. We had people offer their time and professional expertise without asking for anything in return.

People just kept saying yes.

Yes, I'll help.

Yes, I'll make an introduction.

Yes, I'll come.

Yes, I'll donate.

Yes, I'll give my time.

Yes, this matters.

And suddenly, the crazy idea wasn't an idea anymore.

We were here.

These kinds of efforts have never happened alone. In fact, many of the rights and protections we were in Washington talking about exist because families and individuals with disabilities organized, showed up, told their stories, demanded change, and refused to accept inequality.

Grassroots advocacy matters.

It always has.

And it still does.

Watching New Leaders Step Forward

One of the things that made me proudest this week had very little to do with anything I said.

It was watching the people we brought with us.

Especially our young adults and self-advocates.

They walked into rooms that can be intimidating even for people who have spent decades doing this work. They sat across from people with titles and influence. They answered questions. They told their stories. They talked about what access—or the lack of it—actually looks like in a person's life.

And they were extraordinary.

They didn't need us to speak for them.

They needed us to help make the opportunity reachable—to help open the doors.

Then they walked through those doors themselves.

Because one of our goals in coming to Washington was not simply to advocate for the next generation. It was to create opportunities for current and future leaders and self-advocates to be in the rooms where decisions are made.

To learn how these systems work.

To discover that their experiences are expertise.

To realize that their voices belong there.

And to know that they can come back without us someday.

Watching that happen was one of the greatest successes of this trip.

Maybe part of leadership is knowing when to speak.

And maybe another part is knowing when to make room for someone else's voice.

This week, I got to watch people step into that space.

And I Got to Do This With My Son

And then there was something much more personal for me.

I got to spend this week with Conner.

There is something almost impossible to put into words about that.

So much of my path into this work began with being a mom. Before the research, the degrees, the policy work, the meetings, and all the titles I have accumulated over the years, there was simply a mother trying to understand what her children needed and how to make sure they had access to it.

And now that little boy is an adult.

He has his own story.

His own expertise. His own voice.

And I got to walk beside him through the halls of Washington, D.C., while he used it.

There were moments when I could almost see all the years at once.

All the meetings.

All the advocating.

All the uncertainty.

All the times we had to figure something out that neither of us had asked to learn.

And now here we were.

Together.

Not with me speaking for him.

Not with him as the little boy whose future I was trying so desperately to protect.

But side by side.

That may be one of the greatest gifts this trip gave me.

And he had a great experience—except, perhaps, for all the photos I made him take. Sorry, Conner. Not really. :)

And while I have loved having this time with him, I miss Dalton.

Dalton has been on the Hill with me several times before, and it was hard not having him here this time.

But he called every day to cheer us on.

He was part of this week, too. Just from farther away.

We Saw Things We Never Imagined

There were moments on this trip when I found myself thinking:

How are we here?

How did this little group of people who care so deeply about students with disabilities end up walking these hallways?

How did this meeting happen?

How did that person know our work?

How did another door just open?

There were conversations I never expected to have and places I never expected to sit.

And again and again, people were kind—even when we didn't necessarily share the same views.

They listened.

They asked questions.

They thanked us for coming.

And all of them told us that what we were doing mattered.

That stayed with me, especially when it came from people who didn't necessarily share our views.

When you spend years advocating, it can sometimes feel like you are pushing against something enormous. You send the emails. You make the calls. You tell the stories. You explain the same things over and over again.

You don't always know whether any of it lands.

This week, it felt like it landed.

And Then There Was Senator Murray

One of the moments I will carry with me for a very long time was sitting down with Senator Patty Murray herself.

Not standing in a receiving line.

Not taking a quick photograph.

Sitting together. Talking.

We were mic'd up, cameras pointed toward us, and for a few minutes we simply had a conversation about special education, families, and why all of this matters.

I have spent much of my adult life in this work—as a parent, educator, researcher, and advocate.

I have sat at a lot of tables.

But sitting beside a United States senator and being asked to talk about something that has shaped nearly my entire adult life felt different.

And maybe what struck me most was how incredibly kind she was and how deeply committed she is to the issues that matter so much to families like mine.

I actually walked out of this week with more hope.

Behind the titles and offices and security checkpoints and marble hallways are people.

People who listened to our stories.

People who wanted to understand.

People who told us to keep going.

People who told us we had made a difference by being there.

People were willing to listen.

The Part I'll Remember Most

I will remember the meetings.

I will remember the doors that opened.

I will absolutely remember sitting beside Senator Murray.

But I suspect years from now, some of my clearest memories will be the spaces between those things.

Big Blue.

The kitchen in the VRBO.

Someone making food while someone else talked through what had happened in a meeting.

The laughter.

The exhaustion.

The ridiculous moments that happen when fourteen people spend several intense days living and working together.

The conversations in the van.

The hugs.

Watching someone find their voice in a meeting and then hearing the excitement afterward.

Getting to experience all of it with my son.

And the people.

The new friends I made this week.

The friends I don't get to see nearly often enough.

And friends like Rob and Amy, who have watched me grow, challenged me, supported me for the past ten years.

There is something really special about getting to stand in moments like these with people who know how long the road has been.

And there were so many moments when we looked at one another and realized:

Did that really just happen?

This work can be heavy.

Disability advocacy often begins because something isn't working. Someone doesn't have access. A family is struggling. A student isn't getting what they need. A system needs to change.

It is easy for advocacy to become defined by what we are fighting against.

This trip reminded me that it can also be defined by what we are building together.

Relationships.

Understanding.

Community.

Leadership.

Possibility.

And hope.

And Then I Lay Down in the Grass

At the end of it all, my body finally told me it was done.

I found a patch of grass in the shade near the Capitol and lay down.

The Capitol was there in the background—the building we had spent these days walking through and around, trying in our small way to make change inside of it.

And I just closed my eyes.

I was exhausted.

Physically exhausted.

Emotionally exhausted.

The kind of exhaustion that comes when you have poured yourself into something and there is simply nothing left to give.

But underneath the exhaustion was something else.

Gratitude.

So much gratitude.

For Amy, for taking this crazy idea and running with it beside me.

For the people who came.

For every person back home who donated, encouraged us, prayed for us, shared our work, or simply cheered us on.

For the people who gave us their time and expertise, simply because they believed in what we were trying to do.

For every door that opened.

For the people who sat across from us and listened.

For the young adults and self-advocates who reminded me why creating these opportunities matters.

For Big Blue and shared meals and wrong turns and laughter.

For new friends.

For old friends.

For the friends who have watched me grow.

For the completely unexpected privilege of sitting beside Senator Murray and talking about something that has shaped nearly my entire adult life.

For Dalton, who I can't wait to see in a week when I visit him at college!

And for Conner.

For the extraordinary gift of getting to do this with my son.

For all of it.

I came to Washington hoping we might make a difference.

I left knowing that we had been heard.

The rights we were there to protect exist because generations of people before us showed up, spoke up, and refused to accept a world in which people with disabilities were treated as less deserving of opportunity, access, or belonging.

There is still work to do.

There will always be work to do.

And I will always fight for equality for all.

But on that afternoon, lying in the grass with my eyes closed and the United States Capitol behind me, I didn't need to prepare another talking point.

I didn't need to convince anyone of anything.

I didn't need to figure out what came next.

For just a few minutes, I could simply be still.

Exhausted.

Grateful.

Blessed.

And with a heart that was very, very full.