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Showing posts from September, 2017

Oxford-the start of a journey

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This past week has been a whirlwind. On Saturday I moved up to my student digs in Oxford - and yes, the words 'student' and 'Oxford' still seem wholly oxymoronic in a sentence involving me. I'm lodging in the arse end of the city, far far away from Harry Potter land, which means I still get to keep a foot in the real world while I'm up there. It also means I'm not entirely overwhelmed constantly by the insanity that is the University of Oxford. Don't get me wrong, I feel as though all my Christmases have come at once with getting the incredible opportunity to study there. As an academic institution it really is the dogs bollocks, and if nerdy academics were kids in sweet shops, Oxford would be none other than the chocolate factory of Mr Willy Wonka himself. But it's an odd place with a fantasy feel-a Disneyland for geeks, if you will. And then there's me. Charlie. Under-cultured, under-global and feeling like the luckiest kid in the world.

Some…

Duck Duck Goose

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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 …

Broken systems, broken people

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Today was the dreaded budget review. For those of you not familiar with acronyms, let me throw out a few that will confuse the fuck out of you as much as they did me the first time I heard them.

NHS: National Health Service (gentle start, bear with me)
CHC- Continuing Health Care: a package of care allocated to those deemed worthy. Usually decided with the help of a (rapidly changing) 'standardised' assessment tool by Panel Gods*
CCG- Clinical Commissioning Group: The local NHS group responsible for the CHC pot of funding. Other responsibilities include recruiting 'appropriate' Panel Gods* 
EBD- Emotional and Behavioural Difficulties: NOT my kid being a shit. Genuine issues. 
SLD and complex needs- Severe Learning Disabilities and complex needs: I think if you look this one up there's a photo of B right there. 
ASD-Autism Spectrum Disorder: a neuro-developmental disorder comprising primarily social and sensory difficulties. 
SLT- Senior Leadership Team: School Gods…

Surviving Summer (E20)

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So. Last day of the summer holidays and I'm breathing a very loud thank fuck as we enter back into the safe and predictable routine of life.... Ha! If only. Nothing is ever predictable. And things most definitely aren't safe with the B-boy around. Hats off to you Cath Kidston types who can juggle homemade playdough and tandem breastfeeding in a beautifully clean vegan organic home while still looking like you just stepped off the pages of the Joules brochure. Good for you. But I'll admit. I dragged my kids through the holidays and survived by the skin of my teeth. There was mess. And dirt. And chaos. And much beige processed shit which somehow passes as food. My general motto in life is fuck it, feet first and figure it out-much to the annoyance of the planners in my family. At this point in time, the Teen Queen is heading back tomorrow in last year's too-small shirts thanks to my epic organisational skills. We also noticed the last time we'd signed her school dia…

Surviving Summer (E19)

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Almost there! School is back in T-8 days. AND I'M ALIVE TO TELL THE TALE! Knackered, bruised, scratched up and with even fewer fucks to give than six weeks ago, but breathing none the less. And actually, despite it being eight days, for four of those I'm unashamedly leaving the kids to their own devices (with Dad and carer supervision, of course- I'm not wholly insane just yet) while I jet off to deepest darkest Dorset for a festival. Festivals are my favourite and my best. You know how everyone has those things in life; the things that revive and energise..... The stuff that feels like home? For me, it's live music, adventuring and nature. Festivals are all of that. Incredible live music. People adventures. And all in a field under star-studded skies in the arse end of nowhere. As you might have guessed, I'm super excited. This point in the holidays is rough; I'm exhausted from crap sleep, no routine, and the brutal physical effort of keeping B safe. All my m…

Surviving Summer (E18)

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So, we're almost at the end of the penultimate week. At this point it feels like limping painfully toward the finish line of the Many-Shit-Life-Things Hurdles. The last few days have been fairly challenging; the hospital stuff knocked B for six (and it's not exactly fun restraining your child to expose them to shitty, though necessary, trauma). Add in extra seizures and a complete lack of routine, and this week has mostly been shouty, ragey, pinchy scratchy chaos. BUT. There are always shiny bits. Let me share some highlights too, instead of just lamenting my difficult existence. A few things I am thankful for... 1- Whoever invented those roll-along baskets in Wilko. Wheels on shopping baskets-fucking genius! (Mini trolleys for kids give me the same level of delight..) 2-The excellent guy in the very overcrowded and stacked bits and bobs shop who reassured me repeatedly all was well when B destroyed half the displays domino style from his buggy. 3-The lovely lady in Starbucks…

Surviving Summer (E17)

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So right now I'm sat in the hospital. It's a planned admission for the boy-thankfully the three girls are off adventuring with PGL this week so I don't have them to negotiate as well. We need to get bloods to try and figure out if there's any physical reason for his food refusal. It took me 9 months of petitioning his current paediatrician (the non-specialist doctor at the local general hospital) to finally be referred to another paediatrician with an interest in gastro (tummy) stuff. At that very first appointment with the gastro guy, a plan was made to get bloods and stool samples, and then tummy MRIs and scopes further down the line if we were still clueless. He's currently out for the count, since any investigations require sedation. We try to make the most of it and get everyone in to do their thing-so this morning he's had bloods, a dental check and brush (we can't get near him with a toothbrush normally), and orthotics castings- a plaster mould of h…

Surviving Summer (E16)

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Day three zillion and six: All hail the 50p ball! I had the pleasure of flying solo with the B-boy today (girls were all at their SIBS group), so we headed out to the park. The weather was sunny and tourist-friendly, and on those days early is our ally. Enroute we nipped into the shit everything-is-cheap shop and grabbed a ball. Not balls, thankfully, as has previously happened with B in small spaces 😱, but a single throwing ball. Best purchase in months, I shit you not. Much fun was had at the park in the sunshine lobbing the ball around. It also significantly reduced the number of casualties subject to B's *unusual* hello. There were meltdowns, naturally, but that happened while he was contained in the buggy. My arms are pretty scratched up from having to stop him running into people at the park, but all in all, it was a good trip. It hugely helped that one of the ladies he took a liking to worked in one of the local special schools, and was more than fine with B's brand o…