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Showing posts from August, 2017

Surviving Summer (E15)

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Day We-Are-Actually-Mid-August-For-Real: So. I am in what one may describe as 'a tizzy.' My knickers are well and truly twisted, and unfortunately not thanks to any extra-curricular excitement. I had a phonecall a couple of days ago regarding the dreaded annual review for the B-boy's budget. For those of you fortunate enough to be blissfully unaware of such things as CHC budgets, DP funding, SEN, EHCPs, assessment tools and many more acronyms extraordinaire, allow me to enlighten you. B requires a substantially higher level of care than a typical kid his age. I snigger when I write that since it's not even comparable; constant line of sight supervision is necessary to ensure survival- his and that of everyone else in his immediate vicinity. Think over-excited toddler. Zero social awareness. Host of medical issues. No idea of danger. On crack. That pretty much covers it. Due to this INSANE level of care, and the fact he is unable to verbally communicate or do anything …

Surviving Summer (E14)

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Day 24… approximately… ish: Today I’m exhausted. It’s been an epic week of adulting and get-shit-done-ness. I’ve been sorting stuff for the upcoming term. Not the kids, hell no.. I’m way too disorganised for that. Sorting their new school term bits usually involves realising the night before that they need all the things, and running to the much-appreciated local 24-hour Asda at 3am to make it happen. This week I’ve been slotting the last pieces of the puzzle together to make Oxford Uni happen come the autumn. I applied for a Masters course back in the spring, sort of on a whim- it’s my dream course in my dream institution. Education stuff.. with a view to eventually being solid enough in my field to help influence policy making and lecture on how to do research well. Hugely long term goal, obvs. Anyway, I had a shotgun interview with 24 hours notice and ended up getting an offer, which was awesome. Shit got real when I passed my current degree with a decent enough grade to meet the …

Surviving Summer (E13)

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Day... I've lost count at this point. But it's *almost* mid-August- fuck yeah! You'd be forgiven for assuming it was September already given the current state of the British weather, but hey ho, such is life in the UK. Apologies for the sporadic updates; I'm sure you're all on tenterhooks to hear all the tiny details of my epically thrilling existence. The last few days have been a little crazy. Crazier than baseline batshit level. The B-boy has finally realised it's the summer holidays and the lack of routine is starting to get to him. Additionally, in order for everyone to emerge in tact in September, we have a rota of carers and me for covering most days. However hard I try to explain it's literally impossible to communicate to people the mammoth emotional, physical and practical drain of caring for a kiddo who needs constant line-of-sight supervision. Add in the inability to communicate verbally, the ADHD, the constant sensory seeking, the processing a…

Surviving Summer (E12)

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Day 13: Parenting Fail If anyone has ever felt like they deserve the World's Worst Parent Award, I have good news. The story I'm about to tell will probably significantly trump anything you've experienced before. Settle in and grab a brew. One day this will be a 'remember when..', but right now I'm just thankful my kids are still alive to tell the tale..! So yesterday I was in London, for the purposes of a birthday gig with a friend. Initially the plan was to head up alone, but life happened, and the only way I could work it was to take Teen Queen and Little Miss Mouth with me for the day, and deposit them on the train home before heading to the gig and coming back later. All fine. Teen Queen managed to fly solo to the States just after her thirteenth birthday, so getting home from London with B in tow was no biggie for her. We had a lovely day exploring Brick Lane, Borough Market and Southwark Cathedral. I'm just a little bit happy that my kids seem to en…

Surviving Summer (E11)

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Day 11: Thursday is the new Friday-or at least I wish it were. Three day weekends should absolutely be a thing during the school holidays, if only to prevent temporary insanity in whoever ends up at home most of the time on childcare duty. And let's face it, we still have a long way to go with equality-it's usually the mum. I didn't sleep last night thanks to the curse of three-hundred-browser-tab-brain. So today involved copious amounts of coffee, which may or may not have been brewed from the illegally acquired contraband beans (see previous post for full story!) I had the joys of B-boy admin. It is literally unimaginable until you're arse deep into it how much admin goes into the day to day running of life with disability. I am simultaneously a manager, a budget coordinator, an advocate, a fundraiser, a nurse, a mentor, a teacher, a lead professional, a support worker, a carer and somehow in there too, a mum. Social care are currently haranguing us on budget, thank…

Surviving Summer (E10)

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Day 10: Mum duties. So today I learned exactly how shit I am at stereotypical girl stuff. Namely, shopping. For D's birthday we'd given her some money and promised a trip to West Quay, and this was that. Shopping for clothes/shoes/general stuff is sooooo boring. The pissing rain significantly softened the blow, I would have been even more pissed off about spending the day stuck in some air-conditioned shrine to consumerism had the weather been anywhere near summerish. Luckily, D's attention span for shopping only just outruns mine, and we had a lovely, if short and sweet, time bonding over the ridiculous amounts of money some people spend on stupid stuff. And the best thing? Frozen yogurt. Yum! The B-boy is off on a sleepover tonight and we're just settling in for a family movie-something totally impossible with B's incessant moving and shaking... Prize to whoever guesses which movie. Here's a clue... 'Be kind and very courageous.' Happy Wednesday! Boos…

Surviving Summer (E9)

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Day 9: Birthday time! Today was all the feels. All. The. Feels. Trauma. Frustration. Rage. Excitement. Relief. The Teen Queen and I were on B-boy duty today- S was working, and the middle girls were in their week long summer theatre school. After a breakfast of cheese balls, strawberries and apple juice (natch), we decided to take him to one of his favourite local parks. The walk down involves a wander along the quay, and through flapping and excited noises, we established that B would like to go on a boat today. OK. Plan change. Luckily it’s summer and there are multiple ferries every day from the quay over to Brownsea Island. The island is pretty deserted even on a busy day, since the only way to get there is via boat. So B’s request was totally doable. We bought tickets, I grabbed food from Tesco Express (other stores are available) and we boarded. Rookie error. We boarded a whole ten minutes before we actually left, and the B-boy does not do waiting. His attention span reflects m…

Surviving Summer (E8)

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Day 8: BIRTHDAY PREP. Between ferrying middle girls to and from summer theatre school and baking birthday cake for a kid that most likely won't eat it, I haven't stopped. S left for the dentist at 7:30 this morning, and subsequently I had all children to herd out of the house in time for a 9am start a 20 minute car ride away. I'd been super prepared and printed off the medical/admin/we-take-no-responsibility-if-your-kid-dies forms AND filled them in the previous evening, but realised enroute after all hell had broken loose and EVERYONE had taken it it turns to have a meltdown before getting in the car that I left the damn things sitting on the side at home. I swore. Loudly. Because again, you may think it's no biggie just refilling in forms when you get there right-why all the fuss? Doing that with a kid who runs off and creates devastation wherever we show up is a whole other thing. Cue me, chasing B down school halls while simultaneously trying to fill in the forms.…