Grief Doesn't Always Ask Permission

Grief is funny like that.

You can go weeks… months… sometimes even years feeling like you’ve made peace with the life you’re living.

You’re not sitting in sadness every day anymore.
You’ve built routines.
You’ve learned your child.
You’ve adjusted your expectations.

Life moves forward.

And then one random Tuesday night you’re sitting on the couch watching a movie… and suddenly something hits you right in the heart.

That happened to me recently while watching the new movie Song Sung Blue with Kate Hudson.

There’s a scene where her son, maybe ten years old, is going through the loss of someone they loved. You can see it all over his face. The sadness. The confusion. The emotional connection to what just happened.

And the way he looked at his mom.

The way he understood the moment they were both in.

The way they shared the grief together.

And before I even realized what was happening, the tears started coming.

Not just because the scene was sad. But because in that moment I realized something I’ve never experienced with Jordan. Jordan is 29 now.

He was diagnosed with autism when he was five years old, and from the very beginning his biggest challenges have always been social connection and emotional regulation.

He feels things. I know he does. But the way those feelings show up and the way they connect to other people looks very different than what we see in movies.

Watching that scene, I realized something that caught me off guard.

I have never had a moment like that with my him.

Never sat together in shared grief.
Never talked through heartbreak together.
Never looked into his eyes and knew he understood the emotional weight of a moment the same way I did.

And in that moment on the couch, I felt something I think many autism moms feel but rarely say out loud.

I felt cheated. Cheated out of moments I imagined motherhood would include.

The quiet conversations.
The emotional understanding.
The shared sadness when life gets hard.

Those are the kinds of connections most parents experience with their children as they grow.

And sometimes… when we’re raising a child with significant social differences, those moments just don’t happen the same way. Or sometimes they don’t happen at all.

That realization stings.

Even 24 years after diagnosis, grief still finds its way back in sometimes.

Not because I don’t love my life.

Not because I don’t love Jordan exactly as he is.

But because grief doesn’t follow a timeline.

It shows up in waves.

Sometimes triggered by something small… like a scene in a movie.

And I think it’s important to say this out loud for the moms walking this journey.

Feeling those waves of grief doesn’t mean you’re doing anything wrong.

It doesn’t mean you’re stuck.

It doesn’t mean you haven’t accepted your life.

It simply means you’re human.

The key, though, and this is the part that has taken me years to learn, is what you do after the wave hits.

Because I could sit in that moment and spiral into everything Jordan has never done.

I could replay all the things autism has taken from both of us.

But if I stayed there… I would miss something equally important.

The incredible progress he has made.

Jordan has done things today that I never imagined possible when he was little.

Things doctors told me might never happen.

Things I once thought were completely out of reach.

And those things matter too.

So when the wave of grief shows up now, I let myself feel it.

I don’t push it away anymore.

I let the tears come if they need to.

But I don’t build a house there.

Instead, I gently redirect my thoughts toward something else.

Possibility. Just because I haven’t experienced a moment like that with Jordan doesn’t mean I never will.

I simply haven’t experienced it yet.

And after 29 years on this journey, one thing autism has taught me over and over again is progress doesn’t always happen when we expect it. Sometimes it shows up years later than we imagined.

Sometimes it shows up in ways we never predicted.

And sometimes the moments we thought we’d never have surprise us when we least expect them.

So if you’ve ever found yourself crying over something small that suddenly reminded you of what your child might never experience…

or what you might never experience with them…

please hear this from someone who has walked this road for a long time.

Those feelings are normal.

They’re part of loving someone deeply while also navigating a life that looks very different than the one you imagined.

But those waves of grief don’t get to define your story.

They’re just visitors.

You can feel them, acknowledge them and then gently turn your focus back toward the life that is unfolding.

Because even when things look different than we planned…there is still so much love.

So much growth. And so many moments we never saw coming.

And sometimes the best ones haven’t happened yet. 💙

This was written by Shannon Urquiola at Not Your Average Autism Mom.

Thank you for being part of our journey.