Parenting in the Grey: Raising a Child with Disability When the Path Isn’t Clear

Parenting in the Grey

Before I became a special needs mum, I didn’t know what “adaptive clothing” meant. I didn’t know what it felt like to fight for therapy approvals, or how hard it is to get a wheelchair into a change room. I didn’t know that grief and joy could live in the same moment.

Now, I do.

Parenting a child with disability — particularly with complex, rare, or undiagnosed needs — is a life lived in the grey. There isn’t always a name for what’s going on with our kids. There often isn’t a clear roadmap.

There’s just love. And daily resilience. And a whole lot of improvising.

What No One Tells You

People talk a lot about “strength” when it comes to disability parenting. But what they don’t tell you is that strength can look like:

• Crying in the car after a brutal NDIS review
• Learning to read EEGs and IEPs as if it’s your second language
• Carrying food, meds, spare clothes and calm in your bag like a mobile hospital
• Celebrating the tiniest, mightiest milestones — like putting on socks without help

We aren't just parents. We’re advocates, carers, coordinators, nurses, teachers, translators, and sometimes, even inventors.

The Power of Community

What’s helped me most has been other parents — the ones who just get it. Not because they have the exact same journey, but because they understand the invisible weight.

We cry together, laugh at the absurdity of some systems, and swap tips on everything from seizure monitors to which council playground has the smoothest paths.

It was through this community that RareWear was born — not just as a clothing line, but as a way of saying:

“You’re not alone. And your child deserves dignity, comfort and joy in every stitch they wear.”

You’re Doing Enough

If you’re reading this and your child is undiagnosed… or newly diagnosed… or you’re in the trenches of therapies, hospital stays, or school battles — I see you.

You are not behind.
You are not failing.
You are navigating a life no one trained you for, and you're doing it with love.

And if RareWear can make even one part of your day a little easier — a smoother nappy change, a tear-free morning routine, a swimsuit that doesn’t require a wrestle — then we’re doing what we came here to do.

Let’s Keep Talking

This blog is a space for you. A place to share stories, tips, wins, and real talk about parenting in the grey.

💬 Tell us: What’s been your biggest surprise — good or hard — about parenting a child with disability?

We’d love to hear from you in the comments or via DM. Let’s keep building this village. 💜

With love,
Maya
Founder of RareWear
Special Needs Mum. Advocate. Designer by necessity.