My Wonderland

Okay, so today started off absolutely amazing. We had so much fun hanging out with some of our favourite people at Outback Splash. We even managed to leave at a decent time, keeping our special needs kids in mind and all the fatigue and everything that comes with that! Anyway, we planned to go to BurgerFreak for dinner, so the plan was to head home for showers first. Kaedyn had a little accident in the car, so we got him straight onto his ShowerBuddy to get him cleaned up with Phil. I was on car duty, making sure everything was sorted and the car didn’t smell like wee. All was good! I hopped in the shower after that, mid-shampoo, when I thought I heard Dante screaming at an online game. Turns out, that wasn’t it. Phil was finishing up with Kaedyn and pushing the ShowerBuddy over the threshold from the tiles to the carpet. That’s when it became apparent that the sliding clip that usually secures the commode hadn’t caught properly. It slipped back about 2 inches. We usually have to give ...

Being an author can look and sometimes even feel like such a mundane thing, that isn't really a job, it's just something someone 'does'. It’s very easy to reduce it to words on a page or screen accomoanied by late nights and cold coffee. From the outside, it doesn’t always look extraordinary... But if you stop and you look at who is writing, you will see there are people like Kaedyn — pouring his entire lived experience into his story, shaped by a lifetime of therapy, resilience, and courage far beyond his years. You think of Jess, writing through a stage four brain cancer diagnosis, choosing to leave behind something meaningful, something lasting, even in the face of the unimaginable. Rising to the challenge like a gladiator to set an example for others by guiding not belittling. Or Sam whose work and advocacy for inclusion, and her unwavering commitment to Fletch, ripples far beyond anything that could ever be considered “mundane.” And suddenly, writing isn't smal...

So, following up on my last post… I may or may not have bombarded that particular council with online enquiries and phone calls👀 BUT!! finally — progress. I received a response today. While the information I’d originally been given was true, there had been no attempt to fix the issue or treat it with any urgency. The manager I spoke with wasn’t even aware of the situation and had to go away and check everything himself. Honestly, it’s frustrating when accessibility concerns get met with a quiet “meh, not my problem” attitude😔 But — credit where it’s due.  The conversation that followed was productive. I expressed my concerns around independence, about swimming lessons coming up later this year, and how accessibility can’t be something addressed at the last minute. Families like ours don’t get the luxury of scrambling for solutions a week before an activity starts. Planning ahead isn’t what I do for fun (I don't know what I do for fun anymore 😂) it's just something that feels...

 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...

There are joyful days… and then there are these days...There are days that make me sweat — like right now, at almost 3am, when I have to be up at 8am to go to Outback Splash. That’s the problem...Outback Splash. Slides. Fun. Queues. And the fucking waterslides that aren’t wheelchair accessible😞 Panic has settled in like it always does before places like this. My brain has been running strategy after strategy on loop — how we might get Kaedyn down just the wide, smaller blue slide. Just once! One time to feel like he can be like every other kid in the park. The alternative is telling him no...and I don't like how that makes him feel. Kaedyn is cognitively sound. He understands exactly what’s happening. He understands what he’s missing and there is something uniquely cruel about watching your child fully understand why they’re being left out! Last time? My body said “lol no” That last time we went, I had a whole plan. I printed plans, extra hands organised. And then — TMI warning — ...

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...