The Painful Process of Taking the Next Step: A Special Needs Parenting Journey

The First Steps Toward Acceptance

When Sydney was about 20 months old, her Birth to Three caseworker began discussing the next steps for her. She informed me that she could help set Sydney up for preschool special education services and encouraged us to explore the excellent special education program at our local public school.

I remember thinking to myself: No way is she going there. Sydney was going to the same preschool as her brothers—not a special education program. I even said that outright to the caseworker. When she gently tried to persuade me to start the paperwork, I felt a surge of anger. I wasn’t ready to accept that reality.

When I reiterated where I wanted Sydney to go to school, the caseworker backed off and gave me the space I needed.

A few months later, Sydney was diagnosed with Smith-Magenis Syndrome (SMS), and it became abundantly clear what she was going to need. I had no choice but to agree to a special education preschool at our local public school.

Over the next several years, she attempted a mainstream education while receiving special education support. But from day one, the writing was on the wall—she needed more. It took five years for me to fully accept that a mainstream public school setting could not provide the level of support she required.

When Sydney was around seven years old, we faced another major transition: leaving the mainstream world for a self-contained special education private school. With each transition, the extent of her impairments became more apparent. Intellectually, I understood it. Emotionally, it was yet another loss.

The Long Process of Acceptance

One thing I’ve learned is that many professionals—whether teachers, therapists, administrators, or even doctors—fail to fully appreciate that coming to terms with the magnitude of a child’s disability is a process. A very long process. One that can take years, if not decades, to fully grasp.

Parents of children with special needs will advocate fiercely for their child, ensuring they receive the best services and support. But true acceptance of their child’s disability, with all it entails, is not so simple.

Years ago, when I first became a special needs mom, I met another mother at my daughter’s school. She tirelessly fought for her son’s needs to be met, securing services and advocating for him at every turn. But what she couldn’t do—at least not yet—was accept that his struggles had a formal diagnosis. She never spoke the name of his condition, instead listing his challenges. Teachers and therapists tried to push her toward acceptance, but I understood her resistance.

Giving it a name meant acknowledging that it wasn’t something he would simply “outgrow.” It meant shifting from hope for resolution to long-term adaptation. For some, that shift is devastating. It’s not denial—it’s survival. It’s processing the enormity of the situation on a timeline they can manage.

Another Crossroad, Another Step

When Sydney was about 13, I found myself in yet another meeting, facing yet another difficult transition. It was recommended that she would be better served in a residential school.

That meeting felt eerily similar to the ones before—when she was two, when she was seven—each marking a turning point where she required more: more support, more structure, more care than what we had in place.

I knew better than anyone how much my daughter needed. But hearing that she might need to live somewhere else? That was something I wasn’t ready to accept.

I remember pushing back. How could I send my utterly defenseless child, who depends on me 100%, to live somewhere without her parents?

The administrator understood my pain but didn’t waver. She explained that a day school setting could never fully address all of Sydney’s needs. I left that meeting feeling utterly defeated—not because I thought she was wrong, but because deep down, I knew she was right. And I also knew that I wasn’t ready. Not today. Maybe not ever.

It took years of more struggles, more failures, and more pain to begin to see that this option wasn’t just in Sydney’s best interest—it was necessary. The systems that had once worked for her were no longer enough.

Looking Ahead: Another Major Transition

Now, as Sydney is quickly approaching adulthood and aging out of the school system, we are once again facing another transition—one that needs to happen sooner rather than later to ensure she has the highest level of support and services she requires to function.

Over the next few months, we will begin working on what this transition will look like and start putting together a plan to implement it. Time will tell if it will work, but one thing I know for sure is that this will not be our last transition.

When it comes to individuals with special needs—especially my daughter—there will be numerous pivots and transitions throughout her life. And each one will likely be more challenging than the last. Just as every stage before this has required more support, more adaptation, and more acceptance, this next step will demand the same.

Moving Forward

While I have researched, advocated, and prepared for it, I still feel the familiar weight of uncertainty and grief that comes with these milestones.

I don’t know exactly what the next steps will look like, and that unknown is daunting. But if there is one thing I’ve learned from this journey, it’s that I have faced the fear of change before. I have stood at this threshold, unsure of what comes next, and I have stepped forward anyway.

And no matter how difficult the next steps may be, I will take them—because that’s what it means to be a parent, an advocate, and a caregiver.

For now, that has to be enough.