'Other people' make our job a hundred times harder

This entry in our 'Who Cares?' blog series highlights the - avoidable - stress that some parents of disabled children are put under.

We didn’t choose this life. We love our children beyond measure, but the world we've found ourselves navigating — the systems, the people, the places — are making an already difficult situation almost impossible.

This is for the professionals. The disability service providers. The healthcare workers. The carers we have to employ. The specialist retailers who sell the vital equipment our children need to simply get through the day. You all have one thing in common: you’re adding to our stress.

And I know, I know — our children are your clients, your patients, the reason you trained, the ones you say you care about. But here’s the thing: we’re the ones keeping them afloat. We are the ones keeping the entire house of cards standing — and we are exhausted.

So, when we arrive at your clinic, or store, or service — please don’t look through us. Don’t sigh because we’re late (we had a meltdown, or a failed hoist, or a cancelled carer). Don’t make us sit in a boiling hot corridor with no seating suitable for a wheelchair and nowhere for us to breathe. Don’t act surprised that we’ve turned up because you "didn’t see the appointment in the system." We moved mountains to get there.

And retailers: don’t take our money and then ghost us. That wheelchair deposit wasn't loose change. That equipment? It’s not a luxury. It's a lifeline. And when it doesn’t arrive — or worse, arrives wrong — it’s not an inconvenience, it’s a crisis. So act on it! Get our equipment to us; apologise for not processing the order. Treat us as a priority, not a pain.

We shouldn't have to chase. Not the follow-up email, not the call, not the paperwork, not the delivery, not the home visit, not the repair, not the prescription. We do enough chasing just getting through each day.

And if we ask a question — about seating, medication, mobility, timelines — answer it. Properly. Respectfully. Promptly. We are not "difficult." We are desperate. And we are carrying more than you can see.

Please: just do your job. Do it well. Do it kindly. Think about the energy it takes us just to show up. Think about the child we got dressed this morning through screams and anxiety. The bags under our eyes. The fights we’ve had with transport and school and funding and forms before breakfast.

You say you’re here for our children. Then be here for us too. We’re not asking for a standing ovation. Just a bit of consideration. A bit of professionalism. Maybe even a smile. And a cup of something hot, if you really want to impress us.

Because this life we’re living? It’s not an act. It’s every single day. And it would be so much easier if you could just help make it less hard.