My Wonderland

 Well… bear with me folks, I have updates😂 First of all, the first two weeks of high school have been wonderful!! Kaedyn has made some gorgeous new friends, he’s feeling calm, settled, and we’ve noticed such a significant shift in his mood that afternoons are no longer a full stew of stress. Last year looked very different... Home and therapy became Kaedyn’s safe places to let everything out,  sometimes becoming his punching bags too. School just wasn’t lighting him up anymore; he was ready for something that felt more mature, more his pace. So the rest of us learned to step back and let him work through that defiance… He’s even been willing to negotiate his scale of niceness towards Kal… (and to be clear, Kal is the absolute nicest — Kaedyn just happens to find encouragement deeply suspicious.) He's been loving his new OT, Sam, and is quite happy to kick me out and lay all the goss on her... It's my guess that he's talking shit about all of us hahaha Of course, there h...

 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. ...

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 ...

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...

Not all diagnoses are created equal. Some, like cerebral palsy, come with a wide spectrum of possibilities. It’s called an “umbrella diagnosis” a catch-all that stretches over children who will live long, full lives, and others whose journey is far more complex. For many of us, it means a lifetime of therapy, advocacy, and adapting to a world that was never built with our children in mind. But some families receive a diagnosis that doesn’t come with hope for the future. It comes with a timeline. My son Kaedyn lives with cerebral palsy. His life is layered with challenges, appointments, and uncertainty, but he is not terminal. We still get to plan for years ahead. His best friend doesn’t have that same future. He lives with ataxia telangiectasia, or A-T a devastating, degenerative illness that strips the body of function over time. It weakens coordination. Slows speech. Steals mobility. Compromises immunity. And eventually, it takes away the most basic abilities: eating, breathing, even...

I want to talk about something that happens more than it should. It’s not always cruel. In fact, it’s often well-meaning, just curious kids (and sometimes adults) trying to make sense of the world. But for children with disabilities, these moments stick. They sting. And they shape how safe they feel in their own community. If your child has ever walked up to another and asked, “What’s wrong with your legs?” “Why do you wear those things on your feet?” “Why does your iPad talk for you?” or worse “Ew, what’s that?” “Why do you walk like that, it looks weird.” “That’s gross.” This post is for you. And if your response was to laugh nervously, or say, “They didn’t mean it like that,” or “They’re just a kid,” this is especially for you. Because when you defend the comment instead of addressing it, you aren’t protecting your child, you’re reinforcing the idea that cruelty is allowed as long as it comes from a small mouth. And if you’ve ever reached out to gently pat their head with a soft “aw...