All the Useful Things I’ve Learned (and Will Probably Forget Again 🤪)

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If You’re Like Me, the Family Organiser...

You probably find yourself thinking, “I should write all this down in case something happens to me…”

Well, this is my shareable list, the non-therapy stuff I wish I’d had in one place. The real-world, practical gems that make life a little easier when you’re juggling everything.

Consider this a gift to all the other parents holding it together behind the scenes. 

I figured it was time to write all this down. Because when you’re parenting a child with a disability, just knowing stuff becomes its own kind of survival skill. And yet, most of the best info isn’t in any handbook, it’s just in the abyss and you have to hope you come by it.

So here it is. A working list of the helpful, practical, sometimes obscure things I’ve picked up along the way. Some of them might seem small, but trust me: in a world that’s not built for our kids, the small wins matter.

HOLIDAYS! And suprisingly cheap or even free!

Ronald McDonald Houses

These aren’t just for hospital stays, these are the retreats! They’re available for short family getaways usually for one week.

But full disclosure: wheelchair access tends to be patchy, so always double-check.

  • Busselton – Not wheelchair friendly, 2 storey townhouse

  • Bunbury – Yes! Fully accessible, including a roll-in shower

  • Mandurah – Brand new and appears to be in an apartment complex

  • Beyond WA – There are options across all Australian states, and even one in Rotorua, New Zealand, maybe others

The Friendship House – Albany

This beautiful place was built by the local Rotary Club for a member who was a wheelchair user—a real community effort. Side note: that huge TV in the living room? We donated that!

There are two units, but the one at the back is a dream for wheelchair users:

  • Fully wheelchair-accessible kitchen

  • H-track system from bedroom to wetroom-style bathroom

  • It’s clear someone actually thought about access when designing it

We’ve spent many Christmases here and absolutely love the walks down to the beach nearby. It’s a real little oasis for families who need a break.

 If You Travel (Or Even Dream of It)

Traveling with equipment and access needs? It’s possible, but it's challenging. And here’s what makes it easier:

  • Qantas Concession Card – Discounts for wheelchair users

  • Companion Card – Covers entry/travel for a parent, support worker, or grandparent

  • Taxi User Subsidy Scheme (TUSS) – Apply for a taxi booklet, and if going interstate, request an interstate booklet ahead of time

  • Aidacare – For equipment hire interstate (hoists, commodes, slings).
    ⚠️ Don’t forget to request a lap belt—it’s not standard with commodes!

  • Changing Places Bathrooms – If your child needs a hoist or adult-sized table, these are essential.
    You’ll need a universal MLAK key, usually issued with your Companion Card

  • Wheels for Hope WA - If you need wheelchair accessible transport, Wheels for Hope hires out wheelchair accessible vans at a fraction of the usual cost to help families like ours. They make getting around so much easier and more affordable.

Consumables

These don’t get enough credit, but they make life smoother:

  • Bunzl – Great for Abena nappies, metro delivery available, but pre-ordering is your friend

  • Surgical House – Where we get impregnated shower gloves for those quick on the go clean ups

  • Cleantex – Clinical nappy bin service, $11 per weekly collection - side note, we use 3 a week!

Siblings!

Young Carers – Don’t Forget the Siblings

If your child has siblings, join Young Carers.
They get:

  • Access to holiday activities

  • Camps

  • Once they turn 12, they can apply for a bursary to help with school or tech

Just Google EVERYTHING!

I’ve been doing this a long time, and trust me, there are plenty of roadblocks, but you just have to plow forward.

We’ve had our share of mishaps like the time we were actually kicked off a plane (yeah, seriously). But Qantas came through as heroes, and their Carer Concession Card gets you up to 30% off domestic flights and 10% off international flights—including business class on the base fare. Definitely worth applying for!

So keep digging, keep fighting, and keep sharing your wins. You’re not alone in this. This list will probably grow! So if you know something useful, please comment below so others can benefit too. If I learn more or realise I’ve forgotten something I’ll be sure to add it.


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