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...

 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 ...

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...

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 ...

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...