My Wonderland

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...

 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...

It’s been a minute since I blogged and I swear this week I’ve lived at least three completely separate lives. I should be entitled to three separate paychecks at this point. Life One... parent Dante and Phil are off in NZ (having a cute little vacay while I rot here, thanks guys) so it’s been me and Kaedyn vs the world. Life Two, the informal caregiver Kaedyn’s in an intensive therapy program which basically means I’m on triple shift duty...caregiver, PA,Starbucks retriever. I even pulled my shoulder and flared my old tendonitis so my chiro got to give me the speech today. “You need to look after yourself.” Hahaha, okay, let me just pencil in self care between physio, parenting, meltdowns, and late night existential crises. Life Three... The escapist aka the reader By night, when sane people are asleep, I’ve been writhing (yes WRITHING) through Paladia within Alchemised. That fucking book!! Like… 5 stars, masterpiece!!! my soul belongs to it now, I have been changed by it, but also... ...