Allen Golec

After 22 years of living with Dravet Syndrome, you develop a sense of normalcy.

Seizures happen. You manage them. You move on with your day.

You build a team to manage your warriors day like  neurologists, therapists, nurses, educators, family (or whoever is still standing beside you). Life becomes structured around medical protocols, emergency plans, ketogenic meals, medication schedules, and IEP meetings. It is not easy, but it is predictable.

And then one day, like a switch flipping, it is all gone.

You are no longer the parent of a pediatric patient. You are the parent of a 22-year-old adult.

Except she isn’t.

Chronologically, my daughter Abigaile is 22. Developmentally, she is much closer to the 8–10-year-old she was before. The system changes overnight. Her needs do not.

Planning for the Inevitable

I knew the rural area we were living in would not provide the long-term adult resources Abigaile would need. Therefore, I made a decision that confronts many families in similar circumstances: we would relocate.

I spent two years researching locations based on family support, adult day programs, medical access, and opportunities for meaningful activities. In September 2025, Abigaile aged out of the public school system. In October 2025, we moved 125 miles south to Sarasota County to build her adult life.

I thought I had prepared for everything.

I didn’t.

The One-on-One Aide: Stability with a Shadow

For eight years, Abigaile had the same one-on-one aide in school. Over time, trust developed. Friendship developed. Stability developed. My daughter was safe and she was loved.

That matters.

This is not a complaint about an individual. Her aide cared deeply for her. The school kept her safe. I am grateful for that.

But there is a side of this story that families need to hear.

Over time, both Abigaile and the school became dependent on one person. There was no meaningful cross-training. No consistent backup plan. If the aide was absent, I would get a call to pick Abigaile up. About once a month, I was asked to take her home because no one else was prepared to step in.

When her aide needed time off, she coordinated directly with me. I appreciated the respect. But the system itself should have been structured to support Abigaile; not revolve around one person.

Even on her good days, another trained aide could have worked with her. Skill-building requires exposure to different people, different voices, different expectations.

We did not prioritize that.

And the consequences showed up when school ended.

The Bathroom Battle No One Talks About

Abigaile cannot ambulate independently and requires full assistance in the bathroom. Like anyone else, she deserves dignity and privacy. Over eight years, she built complete trust with one person to help her.

Then we left the program.

She refused to go with new caregivers.

She would hold her bowel movements all day. On the drive home, she would finally release. Some days we change clothes two or three times. In four months, we went through six to eight months’ worth of toiletry supplies.

This was not behavioral defiance.

It was fear. It was loss of trust. It was dependence we had unintentionally reinforced.

We are rebuilding now. Slowly, with patience, with repetition, with consistency. But rebuilding skills is far harder than building them correctly the first time.

When Princess Treatment Becomes a Problem

We all want to treat our daughters like princesses.

But being the center of one person’s world for eight hours a day does not translate well into adult life.

Abigaile was used to constant one-on-one attention. In an adult day program or at home, that dynamic does not exist. She struggles to keep herself occupied. She craves that direct engagement.

She is nonverbal but not silent. When she wants attention, she screams. She wants to be in the mix socially, but she wants to be the center of it. Emotional regulation can be incredibly difficult.

Again, this is not her fault.

It is a skill gap.

Communication: The Lifelong Mountain

Communication is our greatest challenge and will be for the rest of her life.

We joke that she speaks “Abigaileese.” I can tell the difference between “pee” and “please.” I know that “hi” can mean yes and “bye” can mean no.

But what I cannot decipher is where she hurts. I cannot always tell what she wants for dinner (she follows a strict ketogenic diet). I cannot know when discomfort is building into a medical issue.

We tried communication devices for years. What I came to realize, way too late, was that the school had become so accustomed to understanding her informally that they were not consistently using the device that could have expanded her independence.

In the first five months after leaving school, we made more progress with her communication system than in the previous four years.

Why?

Because adult life demands it.

Dependence is comfortable. Skill-building is harder.

My Responsibility

As a solo dad, some days are about survival.

Managing seizures. Monitoring for SUDEP risks. Preparing ketogenic meals. Scheduling therapies. Fighting insurance battles. Maintaining a home. Advocating in systems that are not built for rare diseases.

There are days when safety feels like enough.

And I accept my responsibility. I advocated strongly for one-on-one support  and I received it. In hindsight, I see the unintended consequences. I see where I should have pushed not just for protection, but for structured independence. For cross-training. For transition planning that truly prepared her for “22 and one day.”

The Advocacy Lesson

Most families of medically complex children fight for one-on-one aides. I did. And I understand why.

But we need to widen our conversation.

Safety is essential.
Love is essential.
Stability is essential.

But so is preparation.

Our children with complex disabilities will age out. The pediatric model will end. The adult system will not automatically be ready and neither will they.

The goal is balance: protection today and preparation for tomorrow.

If there is one lesson I can share with other families walking this path, it is this:

Advocate not just for who stands beside your child
but for how many people know how to stand beside them.

Our children deserve to be safe.

They also deserve to be ready.