The World Wasn't Built for My Child...and I'm Tired of Begging for a Place in It

I want to scream.

I want to throw something across the room.

I want someone, anyone, to see just how utterly, relentlessly unfair this all is.

Is it not enough that our child has a diagnosis that already changes the course of their life, and ours, forever? Is it not enough that we go to sleep and wake up every single day thinking about their needs, their development, their future?

Apparently not. Because layered on top of all that is a brutal truth I’ve only come to fully understand since Elias arrived:

The world was never built for children like mine.

From the football lessons that Elias' little brother can attend with ease, to the parks around us where Elias ends up on the sidelines watching others play on most visits. Accessibility and inclusion are still treated like an optional extra. A feature you bolt on when someone complains. Not the foundation, or the standard. Not even the bare minimum.

And so we are left pleading. Pleading for ramps and space for our specialist pram. For BSL interpreters. For sensory-friendly spaces. Pleading for understanding. For flexibility. For the chance to just show up somewhere without having to map out an emergency plan. Pleading to be included.

And when the answer is no, or worse, just plain silence, we’re expected to swallow that. With a smile. With gratitude for “what’s already being done.”

But you know what? It’s not enough.

Because what’s already being done still leaves our children on the margins. It still leaves parents like me paying out of pocket for equipment, therapies, and care because our kids fall through every single crack. It still forces us to choose between our careers and our children, and sometimes between our relationships and our mental health.

We give up so much to ensure our children aren’t forgotten by a society that never factored them in to begin with. And the worst part is I didn’t see it until it happened to me. Before Elias, I didn’t think about any of this. I didn’t notice the lack of access. The quiet exclusion. The families missing from spaces we call “inclusive.” And for that, I am ashamed.

But I see it now. I feel it. And once you see it, you can’t unsee it.

So if you’ve never had to fight for a disabled child, I’m begging you: Don’t wait until it’s your child, or your friend’s, or your niece’s, to start caring.

Because we are tired.

We are heartbroken.

We are full of fire.

And some days, it’s all I can do not to scream until my throat is raw, until something cracks, because maybe then someone will finally understand just how loud the silence feels.

Our children deserve a world that sees them. That plans for them, and welcomes them, no matter what they need to be able to show up.

Until then, we will keep fighting. But I need you to know this: we shouldn’t have to.

Want to help families like mine? Don’t just read this post, take action:

• Advocate for accessible spaces in your community

• Call out exclusion when you see it — even if it doesn’t affect you directly

• Support disabled-led charities and organisations

• Show up, even when it’s uncomfortable