The Moment Everything Changed

What Grief Looks Like When Your Child Has Down Syndrome and Autism

When a child with developmental disabilities loses a parent, grief doesn’t always show up in tears or questions. Sometimes it’s silence. Sometimes it’s clinging. Sometimes, it’s confusion. But the pain is just as real.

This is the first chapter in a four-part series dedicated to Kellan, a young boy with Down syndrome and autism who recently lost his mama. It’s also for every family navigating the loss of a parent while raising a child who sees and feels the world differently. This is my story. It’s Tessa’s story. And maybe it’s yours, too.

A Diagnosis That Shattered Everything

I was sitting in the doorframe of a dance studio — Dance Xplosion — watching Tessa in her first pilot class for kids with developmental disabilities. I wasn’t watching through glass. I was right there in the doorway, because Tessa was the most explosive child in the room, and I knew I might need to jump in at any moment.

Moments earlier, I had learned Jason was diagnosed with stage 4 lung cancer. He was being admitted to the hospital. It was as if I was still doing the motions of life, but my insides were frozen.

The tears started falling silently down my face. I sat there watching my daughter twirl in blissful unawareness, while inside, my world was collapsing.

That’s when Tisha, one of the few people I trust completely, turned to me and said, “What’s wrong?” I told her. She didn’t blink. She said, “You go. I’ve got Tessa.”

She asked me for the names of the two other people I trusted most — Deepa and Donella — and within minutes, the three of them were texting, calling, forming a protective circle around Tessa so I could do what I needed to do: be with my husband as we faced the beginning of the end.

When Grief Isn’t Loud

Tessa didn’t cry when Jason got sick.She didn’t panic when we told her he was in the hospital. But she started clinging to him. She’d sit as close as she could. She’d hug him longer. She leaned into him with this instinct that said, stay.

One of the last times they were together in the hospital, they sat on the windowsill eating ice cream. No tears. Just quiet love.

That’s how she said goodbye.

The Day We Lost Him

Jason passed away in June 2020, during the height of COVID. In the days leading up to it, I had to send Tessa away so I could focus on being present with him. He was at home, under hospice care. Keeping her there—watching her daddy leave this Earth—would have triggered an explosive meltdown. And that would’ve broken her… and me. Letting her go was one of the hardest things I’ve ever done, but I knew she was safe, surrounded by the women who knew her inside and out.

At his celebration of life a year later, she played the whole time. She didn’t cry. She didn’t say much. She just ran around and laughed. Her most important mission that day was to get the attention of her grandpa—who looks so much like her daddy, it hurts.

It was one of those days where the world felt a little too big for her, and the people around her seemed busy with their own pain. She wasn’t fully aware of the moment’s weight—but I was. And sometimes, that contrast was the hardest part.

Some might think she didn’t understand. And honestly, maybe she didn’t—not fully. But her heart felt the shift, even if her mind hadn’t caught up yet.

Grief in children with Down syndrome or autism doesn’t follow a predictable timeline. It shows up later. It shows up in moments that seem small to the outside world—like seeing a dad get hurt in a movie and suddenly sobbing. Or reaching for another dad’s hand, only to be quietly rejected.

What Hurt Her Most

The thing that hurt Tessa the most wasn’t just the absence of Jason.

It was watching me grieve. It was the people who used to show up, suddenly disappearing. It was the blame from people we trusted and loved — the ones who should’ve been supportive, but instead pulled away. It was the moments when she reached for connection and was pushed away—sometimes literally.

Tessa would sometimes attach herself to father figures in other families—not because she was confused, but because she needed that comfort. Some responded with love. But the majority didn’t. And each rejection left a mark.

It left a mark on both of us.

Planning for the Worst, Loving Through It

We were lucky—blessed, really.

In the middle of everything—while juggling doctor’s appointments, school drop-offs, and trying to hold myself together—I made a simple post on Facebook asking if anyone knew a notary. That’s all I thought I needed. Just someone to sign a few papers. Nothing big. Nothing complicated.

A woman from the community, someone I barely knew at the time, reached out to me. She messaged me and said she could help. But then she asked, “What kind of paperwork is it?”

Honestly, I can’t remember exactly what I was working on at the time—I just remember posting on Facebook looking for a notary. And I’ll never forget her response: “You’re going to need more than a will. You need the whole thing. Let me help you.”

And that’s when I found out—she wasn’t just a notary. She was an attorney. And she didn’t hesitate. She stepped in and handled everything.

• A special needs trust

• A power of attorney

• Health care directives

• All the documents I didn’t even know existed, let alone how to navigate

She did it out of compassion, and because she couldn’t imagine what I was going through. She said, “I’d want someone to do this for me if the roles were reversed.”

That one act of kindness changed the course of our lives.

We also had a life insurance policy—one that I had taken out on Jason years earlier. He had let his own lapse just months before his diagnosis. Thank God (literally) I kept mine. That money allowed me to:

• Move us to a better school district where Tessa could actually thrive

• Pay for therapies Medicaid wouldn’t cover

• Enroll her in programs that brought her joy, structure, and community

Take a breath—without drowning in paperwork, bills, or fear

It gave us a fighting chance. It gave me room to parent while grieving, instead of scrambling to survive.

📊 Did you know? Over 50% of parents of children with disabilities have no formal plan in place for their child’s future. More than 1 in 10 have done nothing at all. (University of Illinois study)

The Hard Truth

Hope is not a plan. Love is not paperwork. And trust—without signatures—is not legally binding.

If something happened to you tonight, could someone step in and truly care for your child? Would they know their routine? Their triggers? Their favorite snack or bedtime song?

Don’t wait to plan. The time is never perfect. The grief will never be easy. But a legal plan gives your child security, even when you’re no longer here to provide it.

Coming Next:

Part 2 – When They Can’t Say the Words, But Feel Everything

We’ll explore what delayed grief looks like in children with developmental disabilities, and how to recognize emotional changes when words fall short.