You Don’t Know Until You Are There

When my daughter Sydney was about to turn two, I sat in a meeting with her early intervention team to discuss preschool options. At the time, she carried the label “globally developmentally delayed.” There was no diagnosis, no known cause—just delays that, at least in my mind, we would catch up from with the right support. So when the team suggested a special education preschool, I shut it down instantly.

“She’ll go to the same preschool as her brothers,” I said, confidently. “End of story.”

Shortly after that meeting, we received Sydney’s diagnosis: Smith-Magenis Syndrome. Within weeks, I found myself signing her up for a special needs 2’s program, and then for our town’s integrated special education preschool. That moment—saying one thing with certainty and doing another out of necessity—was the first of many.

The next came with outplacement. I was adamant she would remain in mainstream education. I believed she would exceed expectations, blend in, and that her challenges would eventually become almost invisible. But by age seven, Sydney had transitioned to a private special needs school, where she has remained ever since.

In her teenage years, conversations began shifting toward her future. And by then, the picture had become clearer. Sydney wasn’t defying the odds in the ways I had once hoped. Her path was no longer lined with endless possibilities.

I share this now because I think it’s important to say out loud: special needs exists on a vast spectrum. And it can take years—sometimes decades—to come to terms with where your child falls on that continuum.

When we started this journey, I believed—deeply—that one day no one would even notice Sydney had special needs. That with the right therapies, the right support, and the sheer force of our love and advocacy, we could rewrite her story.

But that’s not what happened.

As the years passed, it became undeniably clear how profoundly disabled my daughter is. And while those words may sound harsh, they are also honest.

Sydney is warm, genuine, empathetic, and funny. She is kind, innocent, and deeply vulnerable. But she is also unable to care for herself in a safe or meaningful way. She needs 1:1 support at all times. She struggles to regulate her emotions and manage even basic executive functioning. She is unable to protect herself from harm—and at times, she causes harm to herself.

She needs structure, predictability, and consistent support every single day. For the rest of her life.

I’ve known this for a while now. So when someone asks me, “What does her future look like?”—the answer isn’t simple.

Years ago, I might have said something like, “She’ll live with us, go to a day program, maybe get a job somewhere.”

But today, I can’t say that. Because that’s not the reality she’s capable of.

If there’s one thing I’ve learned in these last two decades, it’s that pivoting is a survival skill. Clinging to old hopes or outdated plans doesn’t serve anyone—least of all my daughter.

Next month, Sydney will begin a residential program.

Even writing those words feels surreal. It’s a path I never imagined we would take—and one I wasn’t even sure would ever be an option. It’s a decision that comes with a flood of emotions: fear, grief, anxiety, and so much uncertainty.

It also comes with judgment. And in the special needs community, judgment can be palpable.

From “How could you send your child somewhere?” to “How could you not?”

On one side, there’s the implication that sending your child to live somewhere else means you’re selfish, incapable—or worst of all—not loving them enough. On the other, there’s the assumption that if you don’t pursue a residential placement, you’re a martyr—unnecessarily sacrificing your life, your marriage, your health, your family—for a decision others think they’d never make.

Years ago, I stood in quiet, ignorant judgment of families who made this same decision. I told myself I would never do it. But that judgment, I see now, came from a place of fear—fear that I might one day be faced with the same decision. And maybe, if I’m being honest, from envy too—envy of the support those families had, and the courage it took to accept it.

It’s humbling to look back on that now. It’s a reminder of how easy it is to judge when the path isn’t yours to walk—yet.

This next step has the potential to open up Sydney’s world in ways she hasn’t yet experienced. If she can do it—if she can tolerate and embrace this change—it could be life-changing. It’s an opportunity for growth, for a deeper sense of independence, and for possibilities we’ve only dared to imagine. And it’s a chance for us, as her parents, to step into a new kind of role—one that still supports her fully, but also makes space for others to step in.

I don’t know how it will go. But I do know how deeply grateful I am for the opportunity—and how thankful I feel that everything aligned to make it possible.

If there’s one thing I’ve truly learned, it’s that you can’t know what you’ll need—or what you’ll do—until you get there. So much of what I once believed, declared, or judged was made from a place of not knowing. And the truth is, none of us can fully understand a path we haven’t had to walk. We only really know when we arrive at that moment ourselves. And when we do, the clarity comes—not always easily, but undeniably.