I stare out the window at the giant TRUMP sign on the hillside of the Pennsylvania Turnpike. Is there no escaping him?
I turn to my husband and sigh, “I am going to put my earbuds in and face the music. I have to listen to the School Board meeting.” He nods quietly. I have been on my own with this fight for a while now. It’s not that he doesn’t care, but it’s been like this since kindergarten with Sienna. Her education is my full time job, and right now it’s a thankless job.
I hear the Board President thanking the Superintendent and the presentation starts. I know they still have her school marked for closure based on text messages I received from other parents while we were in DC the last few days.
As I listen, I notice a difference in tone. It feels defeatist, and as the minutes and hours tick by it is becoming crystal clear – they are not changing their mind. It will close at the end of next year.
And here is the thing – I know they have to close schools. It’s even more clear now as I hear one of the Board Directors bring up federal funding and the implications of “the one big beautiful bill.” God, I hate that stupid name. How can they be so cruel?
Still, the district has to do something. As other parents and I have shared at public hearings for over a year now, this plan will not solve the charter school epidemic. It will make it worse and the cycle will continue. The funding formulas are completely unfair, by design. More charters will open, and they will continue to drain funding from public schools. More families will leave the district, and inevitably they will end up at charter schools. The magnet program has been axed. All the privileged white families with options will start to utilize those options. I don’t blame them. I don’t know that I wouldn’t do the same thing if I had the option.
I look in the rearview mirror and watch Sienna giggle as she watches Bluey on her iPad. I will never understand how a little girl this beautiful and special has so few options.
And as has been the case for years now, the options she does have suck. There are no good choices here and the crushing weight of disappointment feels like an elephant sitting on my chest.
I have always been a person who does not give up, sometimes to fault. Unfortunately, we are facing more battles than we can handle. I have to pick the fights that I can win. Tears trickle out of my eyes and under my sunglasses. I don’t have the energy to even wipe them off. Jason looks at me and squeezes my hand. He accepted this already, but it is easier for him.
He isn’t attached to the teachers, the kids, the building, the parents, her PCA, and the community in the same way. He can turn it off but my mind replays the trauma of kindergarten whenever I think of leaving her school.
Like everything lately, it is completely unfair. Some schools were taken off the closure list. Sienna’s was not. Her school—our school—is still on the chopping block. Not because it’s failing. Not because it’s under-enrolled. But because it’s a smaller building than another one six blocks away.
Right now, that school is a magnet school with a focus on the arts. Kids from all over the district attend and are awarded seats based on lottery numbers. The district is changing it to our neighborhood school.
I sigh again.
I don’t want a new neighborhood school. I want her to stay at this one, where the kids yell her name and accept her. Where she feels so comfortable. Sienna’s school is diverse, inclusive, and full of staff who believe in kids like her. It has strong test scores, committed teachers, and a vibrant community. And none of that mattered.
Because the building’s not big enough.
We’ve fought so hard to get here. If you’re new here, what you don’t know is that we’ve spent years trying to find a place where Sienna could truly belong. We started in private preschool, where she thrived. She was fully included. She was celebrated.
Kindergarten was the wake-up call.
I’ve been let down by private school principals, administrators, even clergy. People who smiled while slowly ushering her out the door. I brought them research. I brought them strategies. I brought them my heart—and they handed back pity and low expectations.
They loved the image of inclusion. They did not love the work.
So you’ll have to forgive me if I’m not clapping for the $5 billion in the federal budget being handed to voucher programs. Voucher schools don’t have to take kids like Sienna. And when they do, they often don’t believe in them. They don’t push them. They don’t see them. They aren’t using the vouchers to update curriculum or add support staff. They are not legally obligated to follow IDEA. IDEA is protected under the Department of Education and the Office of Civil Rights. But 7 of 12 Civil Rights Offices were closed. Cases go unanswered. Discrimination runs rampant and if they get their way, the Department of Education will close and so will Sienna’s rights.
Now we’re being told she’ll have to transition to the “other” school. The bigger one. But that’s not just another school. That’s another fight. Another uphill battle. Another place we’ll have to convince, educate, and hope they see her worth. It is exhausting.
And just when I thought I could not possibly take one more hit—we found out we’re losing her outpatient speech therapist of six years.
The same therapist who introduced me to Natural Language Acquisition, who taught me how Sienna processes the world as a Gestalt Language learner, and helped me unlock her beautiful, stubborn, hilarious, brilliant voice. We only have access to her because we have Medicaid as our secondary insurance. Thank you, Pennsylvania, for that.
I am going to be as vulnerable as I can muster here, but Sienna will probably get past this loss, emotionally. I don’t know that I can. Therapists are more to a family than you can imagine. Sienna’s therapist unlocked the keys to Sienna’s voice. She handed me knowledge. She sees my kid. She understands how her mind works. I don’t have to explain anything. For 30 minutes a week, I sit back and watch pure magic.
It’s a beautiful dance. To the untrained eye, it looks like play but so much more is happening. I learn so much in these sessions. I cried reading the email because I know. I know finding a new therapist is impossible. Sienna is behind in therapy at school. They are short staffed. And this is before Medicaid gets gutted.
There are some therapists that are special and when you find one, you realize how lucky you are, and I honestly can’t imagine not seeing her every Wednesday night.
But now Medicaid is on the federal chopping block. And here’s what most people don’t realize:
In Pennsylvania, nearly two-thirds of Medicaid is funded by federal dollars. If that funding is gutted—as the current budget proposes—the state cannot fill that gap. It’s impossible. The entire system collapses.
And the therapists who work in public schools? Many of them are paid through Medicaid billing too.
These cuts are not just about hospitals and clinics. They are about your child’s speech services. Your school’s OT. Your neighbor’s early intervention. Nursing homes, hospitals, health centers, Planned Parenthood. They are coming for all of it.
And the dirtiest part of this Bill? They are pretending not to gut it, while using buzz words like work requirements. All that does is create red tape and headaches so that people give up, but that is the end game.
I’ve been on this path for eight years, and I’ll never forget logging into the Pennsylvania Medicaid site for the first time—naively thinking a confirmed Down syndrome diagnosis would mean an automatic approval. I was wrong. We were denied.
I’ll also never forget the argument I had with my father—a conservative Republican—who questioned whether we even “needed” that kind of assistance. His ignorance, and honestly mine, was exposed that day.
I spent hours navigating a deliberately confusing system that seemed built to make families give up. And the heartbreaking truth is: it is. Because if fewer people succeed in applying, the government saves money.
Since then, I’ve walked beside every kind of family: those in poverty, those facing food insecurity, families of color who don’t trust broken systems, and privileged families in the disability community. You know who I’ve never seen trying to game the system for “free stuff”? The people living in poverty.
Ironically, the only people I’ve heard asking how to use Medicaid to qualify for free lunch? Conservative families. Families who could afford to pay for it—but were looking for a break.
I don’t judge them. Life with a disability is hard. If there are ways to make it easier, I get it.
But we live in a country that does judge. Constantly. And the message I keep hearing—loud and clear—is that Sienna is a burden. That we are “addicted” to government healthcare. That we should get over it.
You have no idea how mean that energy feels. I will admit it haunts me.
Now when I walk through the world with my daughter, I wonder what people are thinking. I feel shame where there used to be pride. I feel rage where there used to be hope. I feel alone in a country full of people who claim to love children—just not mine.
A family member recently told me to seek therapy because of how upset I was about the election. As if this is some irrational meltdown. As if I don’t have every reason to be screaming into the void. I know what’s on the line. I live what’s on the line.
And still—so many people say nothing.
I keep thinking of the poem
First They Came by Pastor Martin Niemoller
First they came for the communists. And I did not speak out. Because I was not a communist.
Then they came for the Socialists. And I did not speak out. Because I was not a socialist.
Then they came for the trade unionists. And I did not speak out. Because I was not a trade unionist.
Then they came for the Jews. And I did not speak out. Because I was not a Jew.
Then they came for me. And there was no one left. To speak out for me.
America, it is time to speak up.
Sienna may be nonverbal, but she has so much to say. Our eyes lock sometimes, and I can feel her rage, too. Her disappointment. Her sorrow.
There are so many quiet voices right now. But silence doesn’t mean absence. It means permission.
So if you’re still not speaking up—what are you waiting for?
Because silence is a choice. And it’s saying more than you think.
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