My Wonderland

There’s something about showers... They’re meant to be peaceful! But for so many of us, it’s where reality seeps in. I’ve cried in the shower, y ou probably have too. Girls will especially get it when I say I’ve sat on the actual floor. The water as scalding as possible burning my skin to the point I look like a beetroot (men can never understand this🤣), and sobbing for an hour because it was the only place I could fall apart without feeling like I owed anyone an explanation,  where you can admit you’re not coping. And lately as I’m helping Kaedyn shower, I’ve realised it means something entirely different for him. Kaedyn cries in the shower too, but not for the same reasons.  He cries because he can’t be in there alone or  get himself in or out or control the direction or pressure.  He can’t scrub his own hair or  judge if the rinse was enough to stop weeks of itchy dandruff hell. Every tiny decision has to be filtered through someone else’s hands.  “Is t...

 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...

 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. ...

There was a time when therapy felt like war. Not the inspirational movie kind. The real kind. The one with screaming, resistance, heartbreak, and me standing in the hallway taking deep breaths as I fought back tears, telling myself this is good for him. Kaedyn has hated therapy more times than I can count. And honestly? I’ve tried to black out most of those sessions.... #PTSD But this year… something changed. Kaedyn started asking questions, and so we started having some pretty big conversations. The kind no parent really wants to have but knows they have to . The ones that pull no punches and leave your heart sore for days. “If you want to walk, buddy… you have to want it. You have to fight for it. You’re allowed to hate it—most people would. But five or ten years from now, you could be walking with a frame, or a stick, or maybe even unaided. That future? It’s yours to shape. We’ll help you, but we can’t do it for you.” I didn’t think it had sunk in. He’s 11. His world revolves ...

Kaedyn has two physio sessions a week... That’s it, Just two! Two precious hours where he gets to move without limits.  Where his body is supported to stretch, stand, strengthen. But now, those sessions are being cut. Not because he needs less.  Not because he’s improved.  But because behind-the-scenes admin work, goal tracking, documentation, care coordination, have to be more closely billed now due to the funding cuts. So therapists now have to do it inside the session time. His two one-hour sessions? Slashed to 45 minutes. That’s 30 minutes gone every single week. And let me be clear—this isn’t a dig at our therapy team. They’re brilliant. They’ve done everything they can to hold this system together while it quietly crumbles around them. This is a reality check. A painful, but a very human one, b ecause those 30 minutes?  That’s where Kaedyn moves in ways he can’t anywhere else.  It’s where he’s strapped into a bungee harness, free from fear of falling....

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 I had lunch with one of my closest friends. That sounds so normal, right?  But in our world, “normal” is a damn miracle. Between hospital appointments, therapy schedules, equipment fittings, cancelled plans and total emotional burnout...getting to lunch feels like summiting Everest! But today? We made it🤯 And somewhere between chicken karaage and coke, we talked about everything and nothing. That weird blend you only get with someone who knows your life down to the bare bone. What sat with me wasn’t what we said. It was what we didn’t. Her son has A-T. Terminal. Rare. Cruel. And constantly ticking with every day, week and month. We talked about how we don’t tell the kids everything. Not yet. Because once they know, there’s no unknowing. There’s a mercy in not understanding, at least for a little while. That thin layer of innocence is the last thing we can protect. Once it’s gone, it doesn’t grow back. I remember when she first found out. She went quiet. Ghosted the world, ev...

Kaedyn has a brand-new set of wheels!!! an Offcar Quasar in champagne gold, with a sleek white e-fix controller. It’s stylish, strong,nand totally him. Straight out of The Tortured Poets Department. Taylor would be proud! But like everything in additional needs parenting, it didn’t appear overnight. It took months of planning, stress, phone calls, and tears. We started shopping in April 2024. Not because it was urgent yet, but because I’ve done this before. I know the signs: the slouch, the tight fit, the unsupported legs. This is Kaedyn’s fourth wheelchair and I’ve learned the hard way what happens if you wait. And yet, even being early… we were still too late. By early 2025, the old chair was dangerous and I had already acquired an $8000 quote to repair this single problematic wheel. I checked it before school one Friday and realised that wheel was about to fall off. If I hadn’t looked, he could’ve ended up injured. I cried in the car, I cried on the phone. (What can I say? Emotional...

There’s a significant difference between what a sports physio does compared to what a paediatric physio provides and if you’ve ever stepped into our physio’s space, you’d know exactly why this is so important to our family. Our physio clinic looks more like a hybrid of a gym and a play space. There are cages designed so children can stand with the support of bungee cords, reformers, gym blocks, balance beams, bikes, walking frames, slides, climbing equipment, etc. The setup isn’t just impressive, it’s essential. This is where our funding goes! Every inch of the space is purpose-built to support children ranging from babies to young adults, each with their own unique physical challenges and goals. Beyond equipment, there are other massive costs: rent, insurance, wages, ongoing training, and the constant drive for innovation. Our physios are constantly evolving with the kids. And that’s not something you can replicate easily. I’ve never used other types of physios...

We're barely halfway through 2025, and already families are being told that enrollments for 2026 school year is full.  Yep... full! Education Support classrooms, designed for students who cannot attend mainstream are at capacity. If your child didn’t get in, the door is closed.  So where do they go? For children who are medically complex, disabled, or neurodivergent,.but not a “mainstream fit” what’s the answer? Because right now, the answer seems to be: There isn’t one. We talk about education like a menu of equal options: public, private, online, Montessori, homeschooling. But for many families of kids with disabilities, there’s no real choice. So families are left “choosing” homeschooling not out of lifestyle preference, but out of sheer necessity. It’s not flexible learning. It’s survival. Parents become teachers, aides, therapists, case managers. They coordinate everything from literacy to mobility aids, all while trying to work, raise siblings, and stay afloat. And they ...

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...

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...

Dante is my oldest son, he's turning 13! And while everyone else might celebrate it as the beginning of the teen years, I’m here sitting with the quiet truth that his childhood is over, not in a dramatic way, but in a way that hurts if you look too closely. Because Dante’s childhood wasn’t just bikes and birthday parties. It was therapy clinics and hospital corridors. It was me wrapping him in cotton wool cause I was terrified something bad might happen to him. It was watching his brother’s legs get braced in AFOs while his own questions went unanswered. It was learning to entertain himself in the corner of a room while the spotlight was on someone else. It was missing out. Quietly. Repeatedly. Without complaint. He’s the boy who gave up Saturday sports so we could all go to inclusive games instead. The boy who learned to cheer for someone else’s milestones while tucking away his own. The boy who carried the emotional weight of our family’s reality before he had the words to compre...

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 didn’t fall gently into this life, I tumbled in what felt like a headfirst direction. Just like Alice down the rabbit hole. Only my Wonderland isn’t filled with tea parties and curious cats. It’s filled with appointments, assessments, and a boy named Kaedyn who changed everything. Becoming a mum was always going to change me. But becoming his mum spun my world on its head. Up was down. Right became left. Nothing looked the way I’d imagined it and it never would again. In this Wonderland, time bends, and stretches into waiting rooms and then disappears in the flash of a smile. Some days are painted in technicolor joy, others in the grayscale of sheer exhaustion. I lost pieces of the woman I once was: a career woman with places to be and plans to keep. I said goodbye to my polished world and traded it for stretchy waistbands, late-night research, and navigating systems no one ever prepares you for. I celebrate things differently now. A moment of calm. A meltdown avoided. Ti...