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

Understanding Grief in a Child With Developmental Disabilities

A few months after Jason passed, Tessa and I were sitting on the couch watching a movie. I don’t remember the name of the movie, or what it was even really about, but I do remember there was a scene where the dad got hurt. Out of nowhere, Tessa started crying. I mean really crying. Full sobs, with tears just pouring down her face. No words. No warning. Just heartbreak.

I paused the movie and pulled her close. She couldn’t tell me what was wrong. But I knew. It was him. That moment wasn’t about the character on the screen. It was about Jason. It was grief. It had taken its time, but it finally showed up.

When Grief Doesn’t Look the Way You Expect

People love to say kids are resilient, and maybe they are in some ways. But when you have a child with Down syndrome and autism, grief doesn’t show up the way people expect it to. It’s not always in words. It’s not always right away. And it’s not always in tears. Sometimes it’s in how they act. Sometimes it’s in what they don’t say.

Tessa didn’t cry when he got sick. She didn’t cry when he passed. She played with her friend like nothing had happened. But I saw her clinging to him more in those final weeks. She knew something wasn’t right. He didn’t look like himself anymore. She couldn’t name it, but she felt it. She still laughed. She still danced. She was still her silly, sweet, and salty self. From the outside, it probably looked like she was fine.

Searching for Familiar Faces

At Jason’s celebration of life, she followed his dad everywhere. She made it her job that day to get his attention. She was singing. She was dancing. She was hugging him every chance she got. Jason’s dad looks so much like him, and I think she saw that too. I think she needed him to be close to her. Maybe it helped her feel close to Jason. I don’t know. I just know she was trying really hard to connect.

The Moment I Stopped Waiting

I kept waiting for the moment where it would all click for her. I thought there’d be some moment where she’d stop and say something like, “Daddy’s gone.” I don’t know why I expected it, but I did. That moment never came.

Instead, it came out in quiet ways. I saw it when she reached for another dad’s hand and he pulled away. I saw it when she clung to men who reminded her of someone. I saw it in the way she watched other little girls with their dads. She didn’t say anything, but she didn’t have to. I could feel it.

They Understand More Than We Think

People assume that kids with developmental disabilities don’t understand what’s going on. They think because our kids can’t always explain things that they don’t know what’s happening. But they do. Maybe not everything, and maybe not in the same way, but they know. They feel it. And they carry it.

And honestly, I get it. Because I’m not all that different.

My Own Grief Looked Different Too

I started grieving Jason long before he actually died. I watched him change. I watched him lose his strength. He used to be this solid, strong guy. I used to call him my bowling ball of a man. And then I watched all of that fade. When he passed, I didn’t fall apart the way some people expected. I shut down. I went into survival mode. I stayed quiet. I think some people thought I didn’t care. That I didn’t love him like they thought I should have. That couldn’t have been further from the truth.

Later on, I learned I was autistic, and suddenly a lot of things made sense. The way I process emotions. The way I move through things. The way I hold it all in. I just do it differently. So does Tessa. I see it now.

Clinging to Me in the Quiet

There was this one night when I realized she was carrying something. She was grieving. I could feel it. She had started climbing into bed with me again, even though she had been sleep trained for years. There were plenty of seats in the living room, but she always picked the one closest to me. Around other people, she was still her usual self, but when it was just me and her, I could feel it. She missed him. She didn’t say it, but I knew.

Sometimes I’d cry, and she’d cry with me. Not because she understood why, but because she felt what I was feeling. Tessa has always been sensitive to other people’s emotions. When I’m off, she knows it. And when I was breaking, she felt that too.

Grief Without Words

I tried to talk to her about Jason. I tried to read books about grief. She wanted none of it.

She would push them away, change the subject, or walk off like it was all just too much. And honestly, I think it was. The books were too abstract. Too wordy. Too full of expectations she wasn’t ready to meet.

But sometimes, she’d just climb into my lap and sit quietly. Not needing anything. Not saying anything. Just there.

Trying to Find Help

I tried to get her help. I reached out to therapists. A lot of them turned us away. Some said she wouldn’t benefit because of her cognitive level. One place told me they couldn’t work with her unless she could talk about her grief. I wanted to scream. They didn’t get it. They didn’t understand that she was grieving, even if she didn’t have the words for it.

Eventually, we found Stillwater Counseling. They saw her. They met her where she was. They didn’t ask her to be someone she wasn’t. That changed everything.

What Helped Us

At home, I started doing what I could. Little things. Simple things. Things that made sense to her.

I hung a collage of pictures above her bed. Just her and Jason. Not all over the house. I couldn’t do that. But in her space, where she could see it every day. It reminded her that he was real. That he was here. That he loved her.

I kept her routine the same as much as I could. Her whole world had already changed, and I didn’t want her to feel like everything was falling apart.

And I just let her be near me. I didn’t push her. I didn’t ask her to talk. I just stayed close. If she needed to sit in silence, I sat with her. If she needed to fall apart, I held her. And if she just needed to exist in the same space, I made room for that too.

There Is No Timeline

There’s no clear path through this kind of grief. No checklist. No timeline.

Just waves.

And when you’re raising a child with developmental disabilities, you learn to ride those waves with them. Even when you don’t see them coming. Even when they don’t have the words to tell you what’s wrong. Even when everything looks fine, until suddenly it’s not.

You keep showing up. Again and again. Without expectations. Without pressure. Just present.

Because love doesn’t need a script. And grief doesn’t have to be spoken out loud to be real.