Then Everything Came Crashing Down

Written by Bethanie Milford, LCSW

Edited by Christina Thompson

When the Ground Disappears

Just when it finally felt like we could exhale, another email arrived.

It wasn’t a progress update or a celebration of how far our daughter had come. It was a notice that the residential school would be shutting its doors in just a few weeks because of staffing shortages brought on by the pandemic.

I remember reading it over and over, hoping I had misunderstood.

After everything our family had survived to get her there, it felt like the ground beneath us disappeared.

The message might as well have said:

“Come get your daughter.”

Not because she had done anything wrong.

Not because she no longer belonged there.

Simply because the system itself was crumbling.

It is difficult to describe what that feels like unless you’ve lived it. After fighting for evaluations, services, funding, waitlists, hospitalizations, emergency calls, and finally finding a place where your child was safe, you’re suddenly thrust back into uncertainty.

Would there be another school?

Would there be another waitlist?

Would she have to come home before another placement was found?

Would we survive another crisis?

For families raising children with high support needs, there often isn’t a backup plan waiting in the wings. Residential programs that are equipped to support autistic individuals with extensive support needs are limited, and available placements are scarce. Waiting lists can stretch for months or even years. Every disruption in services carries the risk of lost skills, increased emotional and behavioral distress, and a return to crisis for both the individual and their family.

In that moment, it wasn’t simply a school that was closing.

It felt like the fragile stability our entire family had built was collapsing around us.

Three Weeks to Save Everything

I was in the middle of an ordinary workday when the email arrived.

Within minutes, everything changed.

I stopped seeing clients, picked up my tablet, and immediately began researching every residential education program I could find. Which schools accepted autistic students with high support needs? Who had openings? Which programs were approved by the New York City Department of Education? What were their admissions requirements? Did they have the staffing to support someone with my daughter’s needs?

Searching for a Place That Didn’t Exist

Then came the calls.

And the emails.

I reached out to every residential program I could identify. One after another, I heard the same responses.

“We’re full.”

“We have a waitlist.”

“We can’t meet her support needs.”

Every conversation seemed to end with another dead end.

At the same time, we were in constant communication with my daughter’s school. Rumors began circulating that another organization might take over the campus, offering a glimmer of hope that the students could remain where they were.

But it wasn’t that simple.

Even if another school assumed operations, every out-of-state student, including my daughter, would still require approval through the Interstate Compact on the Placement of Children (ICPC). The new school would also have to be approved by the New York City Department of Education, and there was no guarantee they would even agree to take over.

Every hopeful possibility came with another layer of uncertainty.

How could all of this possibly happen in just three weeks?

Living in Survival Mode

The days became a blur of phone calls, Zoom meetings, emails, emergency planning, and impossible decisions. At one point, an attorney generously volunteered to join a call with me and the leadership of the organization that was considering taking over the school.

I was trying to absorb legal information, educational regulations, interstate approvals, and placement logistics while also trying to hold myself together emotionally.

I couldn’t breathe.

Then came the calls from the New York City Department of Education telling us to prepare to pick up our daughter.

Pick her up…

But bring her where?

There was no new school.

No transition plan.

No intensive supports waiting at home.

Bringing her home wasn’t simply bringing our daughter back into our house. It meant returning to a life we had already lived—a life of constant crisis, sleepless nights, emergency rooms, 911 calls, and trying to keep everyone safe. It also meant that my partner (her father) and I would likely have to stop working in order to provide around-the-clock care.

It felt as though all of the advocacy, progress, and healing were crumbling before our eyes.

And yet, we kept making the next phone call.

Because when you’re a parent in these moments, you don’t have the luxury of falling apart.

You fall apart later.

If you’re lucky.

The Final Days

As the deadline approached, the pressure became relentless.

Every day brought another email reminding us that we had to pick up our daughter by Friday. Then came the phone calls. Finally, we were told that if we did not come to get her, they would send transportation to bring us there to pick her up and bring her home.

But home to what?

There was no new school.

No approved placement.

No transition plan.

We Weren’t Refusing Our Daughter

We weren’t refusing to pick up our daughter.

Our only goal was to ensure there was another appropriate residential placement for her before she was discharged. We weren’t trying to avoid bringing her home or abandon our responsibilities as parents. We were desperately trying to prevent her from being discharged into a situation we knew could not safely meet her needs. We wanted the system to do what it was designed to do: identify another appropriate placement and allow for a thoughtful transition rather than forcing her into another crisis.

We desperately needed to know where she was supposed to go.

Having spent years working within child welfare, I understood another layer of the situation that most families would never see. The case manager’s responsibility was to document every attempt to contact us and every effort made to arrange for our daughter’s discharge. I also knew what could happen next. If a child was not picked up, a report to Child Protective Services could become inevitable, not because we didn’t love our daughter or wanted to abandon her, but because there was literally nowhere appropriate for her to go.

Imagine that.

After fighting for services, sacrificing everything to keep your child safe, and finally finding the right placement, you are suddenly faced with the possibility that the very system you have been working with could now view you as the problem because there is no appropriate placement available.

The clock kept ticking.

Every hour brought more uncertainty.

Every email made my heart race.

The Call That Changed Everything

Then, at what felt like the very last possible moment, everything changed.

On the day the school was expected to close its doors, approval finally came. A new organization was authorized to take over the program, and approval was granted for both the in-state and out-of-state students to remain.

Just like that, the immediate crisis was over.

But my nervous system didn’t know that.

Why Caregivers Stay Hypervigilant

Even now, years later, writing these words brings me right back to that place. I can still feel the panic in my chest, the constant ringing of my phone, the flood of emails, and the overwhelming fear that every piece of stability our family had fought so hard to build was about to disappear.

People often ask caregivers why we’re hypervigilant.

This is why.

When you’ve lived through enough moments where your entire world can unravel with a single phone call, your body learns that safety can disappear at any time.

Even long after the crisis has passed.