Tween Years with a Disability

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 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 expected to do things no regular 11-year-old has to do, and the really crappy slap you in the face fact is that he knows it, he knows he's different because people just keep pointing it out. Taking him to a park where he just has to watch his friends play on equipment he can only dream of climbing. I can't shield him from everything, even happiness masks as horrors for us. I can't be there every moment of every day to translate what true inclusion looks like, I don't even know myself...

BUT... Think it through...Before I do anything with Kaedyn, I'm planning ahead, I'm making sure there are bathrooms, and there's something entertaining for him to do that he will get joy from. I hate parks, parks with all their play equipment are a NIGHTMARE for us, they are a reminder of just how limited he is. I have gotten into arguments with children at parks because they wanted to spin those 'inclusion carousels' faster than he could handle. Kaedyn gets his eyerolls and staunchness from me!

Meanwhile, we parents and carers are juggling feelings and everything else you wish to pile on top. The burnout is real. Sometimes it’s snapping at the little things, sometimes it’s crying in the pantry (yes, we all do it, don’t lie!!), sometimes it’s the guilt hangover of knowing your child’s stress is valid, but your own stress is also completely valid too! If you're like me, you might drown yourself in a book and not be able to crawl away from that fantasy world because even if it's dark and decrepit, it's not as scary as this...I can't change the trajectory of a disability the way I can flip a page...(I THINK ABOUT ALCHEMISED EVERY. SINGLE. DAY!!)

Let’s be real, our kids feel everything we feel, so now we're bouncing emotions between us like it's soccer. The stress leaks out in moods, in tears, in slamming doors, or worst of all, complete silence... and I'm bracing for impact most days because I know how one small, simple thing can derail his whole world.

Tween years with disability don’t get talked about enough. It’s like a secret level in a game that nobody told you about, full of emotions, transitions, meltdowns, resistance, and outright insubordination.


What I'm saying is this... I will listen and validate your feelings, but don't ask me for advice because I'm reactive first and foremost, hence the blog, so I can't drop off everything here before I regret saying it hahaha💓

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