The Day She Went Away

Written by Bethanie Milford, LCSW

Edited by Christina Thompson

Why I’m Telling This Story

I probably shouldn’t share this, but I’m going to.

I made a promise to myself that if I was going to speak honestly about the reality of loving and caring for an autistic person with full support needs, I would lean into the hard parts—not for myself, but for the countless families living similar experiences in silence.

There is one part of that promise that seems to contradict itself. I often say I’m sharing these stories for others, not for my own healing. Yet I’ve come to realize that telling the truth has become part of my healing. That was never the reason I started writing, but perhaps it was always inevitable.

If these stories help even one family feel less alone, one clinician understand a little more deeply, or one system respond with greater compassion, then the vulnerability is worth it.

For many years, there were stories I couldn’t tell because I feared the consequences. Today, I share them not to assign blame or seek sympathy, but in the hope that greater understanding will lead to better support for families who are still living this reality.

This is one of those stories.

Every Decision Was for Her

Long before we made the decision to pursue residential care, we had already uprooted our entire lives in the hope of finding better support for our daughter.

We left Florida and moved to New York because we believed she would have access to more comprehensive services. Although we were originally from upstate New York, we chose to settle in New York City because it offered the greatest concentration of specialists, educational programs, and resources for autistic children with complex support needs.

That decision came with its own sacrifices.

We left behind friendships we had built over the years. We also chose to live hours away from our extended family because we believed New York City offered our daughter the best opportunity to receive the support she needed.

Like so many families, every major decision we made revolved around one question:

What gives our daughter the greatest opportunity to thrive?

Again and again, the answer required us to set aside our own desires. It meant leaving behind familiarity, support, and the comfort of having family nearby. It meant building a life largely on our own while navigating systems that often felt impossible to understand.

By the time residential care became part of our journey, it wasn’t the first sacrifice we had made.

It was simply the hardest one.

Starting Over

We completed the lengthy application, participated in the virtual interview, and eventually learned our daughter had been accepted. It took nearly three months from the approval of her IEP recommendation for residential educational placement to her being accepted to one.

Then, just one week before she was scheduled to move in, we received the call.

Because we were at the height of the COVID-19 pandemic, the residence had become critically short staffed and could no longer accept new admissions.

I cried in frustration. It meant starting over. Another application. More paperwork. More interviews. More waiting.

Eventually, she was accepted into another residential school in New Hampshire. Finding a residential placement for a child with full support needs is extraordinarily difficult. There are so few appropriate programs available, and even after a child is accepted, parents still have to determine whether the setting truly feels safe and capable of meeting their child’s needs.

The Last Night

When she was accepted, my partner and I found ourselves playing a strange mental game. We tried to imagine that our 14-year-old daughter was simply leaving for college. Parents are supposed to celebrate those milestones. Instead, we were grieving. It felt like a profound loss.

The evening before admission, we drove from Staten Island to New Hampshire through the snow. We arrived just before bedtime. While her father unloaded the car at the hotel, I tucked her into bed, fully aware that this would be our last night together as we had always known it.

Even now, writing these words brings tears to my eyes. That night remains frozen in my memory.

Letting Go

Morning came with more tears. There were long stretches of silence between my partner and me as we wrestled with emotions we could barely put into words.

At the residence, we helped set up her bedroom. During the weeks leading up to the move, and again that morning, we had done everything we could to help her understand what was happening and why. She smiled as she looked around her new room. The staff were warm, patient, and kind.

Eventually, it was time to leave.

We drove back to the hotel in silence.

More tears.

More questions.

Who are we now?

Did we do everything we possibly could?

Will people think we gave up on our daughter?

As those thoughts raced through my mind, I looked down at my arms. Layer upon layer of scars covered them from being scratched during moments of severe dysregulation. Every scar represented a moment we chose love. We accepted every wound because she is our daughter.

But love alone was no longer enough to keep our family safe.

We needed help, not because we wanted someone else to raise our child, but because we wanted all of us, including her, to have a chance not only to survive, but eventually to thrive.

The Long Road

For the next two and a half years, we made the trip back and forth nearly every month, with longer visits during some holidays. Eventually, a residential placement became available closer to home on Long Island, where she currently resides in another residential educational setting. Depending on New York City traffic, the one-way drive could take as long as seven hours.

I share these details not to ask for sympathy, but for understanding.

Families caring for autistic loved ones with profound support needs are not only trying to do everything every other family does. They are simultaneously navigating special education law, medical systems, behavioral crises, funding agencies, residential placements, endless paperwork, and life-altering decisions that no parent ever imagines having to make.

Five Years Later

Five years have now passed.

Today, with the benefit of time, I see that decision differently.

At the time, it felt like we were sending our daughter away. We questioned ourselves relentlessly. We wondered whether we had failed her or whether people would see us as parents who had given up.

Today, I know we didn’t.

She needed structure. She needed specialized therapies. She needed consistent medical, educational, and behavioral support in a world intentionally designed for her needs in ways we simply could not recreate at home, no matter how deeply we loved her.

The part of us that resisted wasn’t about what was best for her. It was about what our hearts wanted: to keep our daughter with us.

Choosing residential care wasn’t choosing less love.

It was choosing more support.

It was one of the most selfless decisions we have ever made—sacrificing what we wanted so she could receive what she needed.

Looking back now, I no longer see parents who gave up.

I see parents who loved their daughter enough to put her needs before their own.

To the Parents Walking This Road

This story is for the parents who are where my family was five years ago.

I want you to know that I see you.

Healing doesn’t happen all at once. In many ways, we will always be healing while navigating a world that was never designed for autistic individuals with the highest support needs or for the families who love them.

Along this journey, we experienced profound loss. We lost friendships as we moved from Florida to New York in search of better support. We lost relationships that couldn’t withstand the reality of our lives. Invitations slowly stopped coming. Some people simply didn’t know how to step into our world.

But we also discovered something equally profound.

We learned who was willing to stay.

We learned who would answer the phone. Who would sit with us in silence. Who would make the long drive simply to remind us we weren’t alone.

One family member, despite advancing age, repeatedly drove as many as eight hours, sometimes through the night, sometimes through bad weather, just to be with us. That kind of love changes you. You never forget the people who choose to walk beside you when your world is falling apart.

If you are standing where we once stood, questioning every decision, carrying guilt, grief, exhaustion, and love all at once, please know this:

You are not alone.

One day, you may look back, as I do now, and realize that the hardest decisions you made were also some of the most loving.

Healing doesn’t mean forgetting what happened.

It means finding the courage to tell the story so another family knows they don’t have to carry theirs alone.

This is the part of the story that often remains unseen.