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Showing posts with the label dignity

Tween Years with a Disability

 Nobody ever warned me about the pre-pubescent tweenager . People love to toss around clichés about the terrible twos and moody teens, but this in-between stage...This half-baked prequel, where hormones are now ruling my entire household! I wasn't ready then, and I'm still not ready now, and I fear I'll never master that level of emotional organisation. Now, add disability to the mix. Moods aren’t just moods... they’re full-blown plot twists. One second we’re laughing over a silly YouTube video, the next we’ve got storm clouds rolling in with potential tornadoes and torrential mood swings... and it’s not 'bad behavior', it’s exhaustion. It’s the tight schedules, school demands, someone who worded their sentence the wrong way, and now Kaedyn is out for blood and carnage... But it's because everything is changing in ways that feel confusing and heavy, and the looming horror of more change, more confusion, and just being completely overwhelmed because he's exp...

Kaedyn’s Court

 Well, today was chaos… the good kind. The kind where you're sprinting between appointments like a travelling circus act, but somehow it all works out. And by the end of it, your heart is full, your kid thinks he’s a rockstar ( he is ), and you’re somehow still functioning despite running on absolutely no caffeine. But let me backtrack. Because before we talk about the magic of today’s new OT session, there’s a shadow that deserves its own spotlight first... On the way to Little Bodies, Kaedyn asked me a question about his old beloved OT. “Mum, why do you like Julian so much?” How do you explain a person who didn’t just do their job? They changed your life? Julian wasn’t just Kaedyn’s OT. He was part of our family. He still is! We all hold so much love for him, his wife, and his kids; they are every shade of warmth and brilliance. He showed up. Not just physically, but mentally, emotionally, practically. Kind. Grounded. Generous with his time, his memory, his spirit. ...

Not just any Therapist...

Today, something unexpected happened. The NDIA announced a big cut to physiotherapy rates across Australia. Here in WA, it dropped from $224.62 to $183.99 an hour. That's more than $40! For years, we searched for the right physio for Kaedyn. Not just any therapy, but a place where he feels safe, understood, and even happy. Where therapy isn’t just a task but something he can be part of. With Ben and lately Kal, Kaedyn has found that. Therapy hasn't always been fun; sometimes he would cry just knowing he had to go, but he laughs in sessions now. He’s challenged in ways that help him grow. He’s proud of himself. That kind of progress isn’t just physical; it’s about feeling valued and seen. But now, with these cuts, the future feels uncertain for so many of us.  These small clinics, these therapists who care deeply, can’t keep going if funding keeps shrinking. It means fewer appointments, fewer resources that benefit our kids, and the therapists we love just have to walk away...

A 'Changing Place?'

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We talk a lot about inclusive cities or smart cities. Buzzwords like accessibility, universal design, and diversity are tossed around in policy documents and press releases as if they’re already achieved. But here’s the truth: If your city doesn’t have adequate Changing Places facilities, then your city is not inclusive. It’s not accessible. And it’s definitely not modern. Changing Places are fully accessible bathrooms designed for people with complex disabilities. They go well beyond standard accessible toilets and include: An adult-sized, height-adjustable change table, a  ceiling hoist system, e nough space for a wheelchair user and multiple carers, a  privacy screen or curtain.  In short: basic dignity. If you’ve never needed a Changing Place, chances are you’ve never checked whether one exists nearby. But for families like mine, our entire day hinges on finding one. And even then, we are bracing ourselves. Because like most parents of a disabled child, I don’t just h...