Duck Duck Goose

Do you remember that game from when you were a kid-the one where everyone sat in a circle, someone was 'it' and they walked round gently tapping (or passive-aggressively smacking) you on the head while repeating a word? Whoever was the 'chosen' one-designated by an odd out-of-sync word- had to get up, run round the circle and try and beat the person 'on' back to their space. Whoever lost got to be the new head-smacker. Excellent stuff.

Right now life feels like an eternal game of duck duck goose; life is 'on' and it never fucking lets up with tagging me. It also never lets me win. Result? Me, running round the circle, everyone else watching as life chases me like a bitch, no doubt feeling a little smug that it's not them being permanently tagged, exhausted and inevitably losing. I'm not a natural runner either *ahem-boobs* so it's not just losing. It's perpetual, sweaty, red-faced losing just to stay in the game. 

That's exactly how I feel. To be on any sort of an even keel life-opportunity wise, the energy and effort I need to expend is huge. This is partly down to circumstances beyond my control-the B-boy, for example. But it's also massively down to societal norms and negotiating systems which are supposed to help enable, but in reality hinder and shut down. Let me explain. There is helpful stuff written into law here there and everywhere about equal opportunities and rights- not only for people affected by disability directly, but also for those whose lives are significantly impacted by the roles they end up taking on. The Childcare Act states every childcare provision is required by law make 'reasonable adjustments' to accommodate kids with additional needs. Sure, the wording is a little flakey, but the sentiment is vaguely there. The Carer's Act states nobody should be disadvantaged with regard to employment or education due to their caring responsibilities. Employers are legally required to again make 'reasonable adjustments' in accordance with this. I'm not too sure on the best practice advice for educational institutions; in my limited experience I've been the only one in my position trying to continue in education.

So the legal stuff- helpful right? You'd think. But actually, not so much. Our local authority tend to know less than me on the legalities. I shit you not. Why? Because most people affected by disability are struggling to make it through the day thanks to lack of support; working and/or education slips way down the list of doable options. It's generally a pretty bleak picture; higher separation and single parent rates, higher levels of mental health difficulty, and generic fucking exhaustion trying to constantly navigate ever-changing education, health and social care systems. No one has time to even think about what their rights are as carers and individuals independent of their caring roles; they're head down cracking on to survive. Of course, I'm talking about personal experience of one local authority borough. There may be other boroughs around the country who are getting this stuff right, but with central funding cuts being made here there and everywhere by the Tories, I can't imagine this climate to be vastly different elsewhere. 

My general temperament doesn't sit well with structure. I don't tend to fit in easily to expected societal norms, and my life motto is something along the lines of 'fuck it, feet first and figure it out.' (Almost Insta-inspiration worthy, I know...) I learned independence early on and I'm pretty adaptable thanks to many crazy life circumstances, but you can imagine the insane learning curve that having a kiddo with as many issues as B has been. The only reason we survive is thanks to systems and structure. A crazy grid of who's where when, and which carers are covering which days, and who's communicated with who re: the B-boy enable us to tread water. Luckily I don't really mind being the odd one out, but the chaos can be fairly isolating. Doesn't help that I've done everything ass backwards. I was 20 when I had my first kiddo. All the other mums were a decade older with established careers; I was a stay at home mum. Now, doing uni at 35, everyone else is at least a decade younger, with minimal clue on life responsibility. It's tough being stuck out on your shabby solo raft while you watch other people from afar in their communal catamaran. 

I'm not quite sure why I'm blogging this stuff. Maybe to process, maybe to wrap my head around the next new life phase-who knows. For those of you not in the know, I'm headed to Oxford uni to study a Masters in educational research. It's something I'm passionate about, and something I want to contribute to on some sort of decently influential level. On the one hand, I'm crazy excited. Not many people get the opportunity to study at such a prestigious institution, and I feel hugely lucky to be one of those privileged few. (There are some hilarious oddities though, but that's a whole other post...) On the other hand, life is hard on my heels chasing me round the circle and experience has taught me that curveballs can happen anytime. So I'm also shit-my-pants scared about it all going tits up and not happening. In theory we have it covered. It's precariously Tetris-like and needs ongoing management, but in theory it should work. Whether it works in practice is yet to be seen. That expectation-management thing is so much more pronounced when you live in a state of existence where anything can happen at any point. It kinda stings, and slightly sucks the joy out of any exciting things on the horizon. Just. In. Case. 


The underlying juggle demands everything. Childcare isn't just childcare- it's recruitment, training, retention, payroll, admin, rotas, budget... the list goes on. Taking care of the B-boy and plate-spinning everyone else's needs is all-consuming. Money is permanently tight due to ongoing chaos. Throw in never-ending appointments, reviews, school meetings, sporadic and unpredictable medical episodes and it's surprising I'm not certified clinically insane for attempting more than mere survival.

But I don't want to live with regrets, and if I don't try, I'll never know. Better to live with well-intentioned failures than irreversible what-ifs.

So, send out the positive vibes people. New adventures in far off (land-locked *sad face*) lands. Wish me luck. I think I might need all of it.






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