I'm a mum of four, but I'm so much more than that. This blog is a glimpse into my mad world-the frustrations, joys and heartache of raising four kiddies, one of whom is particularly special, and trying not to lose myself along the way. Join me on my journey, I promise it'll be a hell of a ride!
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A Day in the Life
A Day in the Life
Disclaimer: This started off as a day in the life but actually ended up being far too long, so is more accurately, a few hours in the life. I decided that title wasn’t so catchy so stuck with the original. Apologies to all you puritans.
04:30: Wake Up Call. Provided by B with compliments of the house. I shift into stealth mode and do my best impression of still being asleep. So does S and there’s a 5 minute stealth-off until eventually one of us gives in and gets up for fear of other residents of the house being awoken prematurely. One grumpy child is better than four. Tripping over countless toys en route I arrive in B’s room. Still clearly under the influence of BrainFog I release him from his bed, this incredible zippy contraption that we were gifted a few years ago when every morning we awoke to the musical bumps of B falling down the stairs. He’d bypass the stairgate entirely and squish himself through the banister bars for some sort of thrill seeking high. Adrenaline rush? Yes, for us, and not in a good way.
What comes next? I trawl through the ‘things that are supposed to happen each day’ list in my brain and clumsily land on bum change. Yep, that’s it. Fumbling for a wipe I offer a lame apology to the universe for my 2-and-a-half-years-and-counting eco-fail, picturing the landfills created by B’s turdy fallout and fleetingly contemplate flannel wipeage until I’m jolted back to reality by the warm wetness all over my legs. If you thought it was only babies that peed when you took their nappies off, think again friend. I am slightly grossed out that I’m not wearing PJs, but then decide skin is much less hassle to clean than tracky bums. Again, thank you Mr Johnson.
04:50: My eyes snap open as I realise my fatal error. Peppa Pig on, noisy toys out, I just thought I’d rest *yawn* my eyes *yawn* for a minute…. And yep, I fell asleep. I fell asleep for approximately 30 seconds, abut 30 seconds might as well be 3 hours where B’s concerned. Scanning the room with no trace, I listen carefully, my tracking skills honed and sharp as a bloodhound on hunting day. Water. Bollocks, I must’ve left the bathroom stairgate open earlier. Bathroom dash, and I find B has the hot tap running full pelt, while fishing around in the toilet pulling out bits of soggy paper. And yes, there is pee in there. See, in an attempt to balance out the turdy landfills, our house goes by the wise proverb ‘If it’s yellow, let it mellow; if it’s brown flush it down.’ I hurriedly scrub him down with the nearest flannel and we make a quick exit before we disturb any sleeping beauties upstairs.
06:50: Two solid hours of the vibrating pig, the jiggle ball and Bop-It Smash and I am losing the will to live. See, B has a sensory processing disorder which, in Layman’s terms, means the input he receives from all 5 senses is in effect muted or dampened down. Cue noisy, flashy, vibrating toys, nose up against the TV, hanging upside down off things etc. Anything that’ll give him that sensory high he’s looking for. The world’s youngest adrenaline junkie, if you will. FYI, Googling ‘vibrating toys’ yields some interesting results, especially useful for all you single ladies out there, if you catch my drift ;) So between the electronic-noise torture and playing lifesaver every time B attempts a sofa-death-plunge, I am just about done in. Only another 17 hours to go.
07:00: Finally the rest of the house are up. Amidst the habitual morning moaning, bickering over who sits where and making such earth shattering decisions as to what to have on ones porridge, we eventually sit down for breakfast. Altogether. Oh yes. Proud moment, and 100% smug-parent rating no less-all 4 kids eating and happy.
A whole 45 seconds of bliss passes until we are rudely interrupted by the spoon missile, launched from B’s direction and heading with a perfect trajectory straight for BH’s forehead. After an unsuccessful slow-motion intercept attempt, missile impacts target. BH looks bewildered as she surveys our faces. The rest of us do our best to look concerned while stifling mild hysteria-the whole ridiculous scenario is actually pretty funny, and I’ve learned in the chaos of life that laughing, on the whole, is better than crying. Even if somewhat inappropriate sometimes. At this point, it could go either way with BH. This morning she seems in good spirits and chooses to laugh as the visible purple lump materialises on her head like a badge of bad parenting. Great. Another one for the preschool incident book. *Sigh*
07:15: Breakfast over and the nagging to get dressed commences. It baffles me how an occurrence that happens EVERY SINGLE MORNING can still be a source of such tension. ‘I can’t find my jumper.’ ‘I can’t find my socks’ ‘O stole my T-shirt-it looks like a dress on her’ ‘My shoes are still outside because they have poo on them from yesterday’ All these charming phrases accompanied by a good dollop of whinging and whining, grating on me like the cheddar I did for their sarnies this morning.
08:00: Poo-shoes cleaned, lunchboxes thrown together (packing lunches is my pet peeve, far too much effort for far too little return in my opinion), and kids dressed- by dressed I mean they are not naked (the finer details of right-way-round and inside-out don’t concern me) I send D for the 30-second update check on B. ‘Muuuuummmmm, quick, he’s playing the piano.’ No biggie, I think, until I run through to find him indeed playing the piano, although somewhat unconventionally, and with his toes. He is sitting atop my beloved instrument stamping on the keys with his feet- an image flashes into my brain of some live arts piece they might showcase in the Tate Modern. I told you 30 seconds might as well be 3 hours- he is inhumanly fast when he’s motivated. I retrieve him and we proceed to the bathroom to brush teeth. This is a particularly cherished activity for B.
‘Dear Neighbours, the terrorised screams you hear every morning from our house are not in fact torturous murder, merely an attempt to prevent plaque build up and tooth decay. Yours, the P Family’
08:15 Clothes on, check. Shoes (and splints, in B’s case) on, check. Background grizzle, check. B has decided that being up for 4 hours is clearly long enough for the school bus to have arrived already. Said bus does eventually arrive, and I brace myself for the daggers from local pedestrians as I walk B out to the bus which, because we live on a main road, has no option but to park on the pavement outside the house. You’d think they’d have noticed 2 years later that the bus is actually full of special kiddies, but no, the ignorant stares and disgruntled mutterings are as prevalent as ever. B boards the bus and I wave him off. He looks everywhere but at me and seems non-plussed by the whole affair.
Running back into the house, I herd up the remaining kids and we make a move to leave. Until those fatal words. ‘I need a poo.’ I am sure (if any such record existed that) my kids would hold world’s longest turd time. It’s insane. I glance up at the time, at this point on track with a 2 minute buffer, and accept the inevitable. We would be late. Again. Swiftly encouraging O along, we manage a substantial game of Eye-Spy while we wait, until eventually she emerges and we’re ready to rock and roll.
I post my kids out of the door like mail through a letterbox, and we make it to school approximately 2 minutes late. Despite heroic running, begging and pleading attempts by the girls to be let through the only-just-shut gate, we are relegated to the queue of shame (something about government punctuality stats), and we wait our turn to report to the office on my unfit parenting and general crap life skills. Eight minutes later-oh the irony- and kids are signed sealed and delivered to school. Mission complete. Now to get to preschool on time…..
Sorry not sorry for the angry undertone of my title. We've been struggling with a seizure shitstorm for the past while. I say we for a reason. Epilepsy takes no prisoners in relation to who it affects, and although B bears the brunt of the brainfuckery, the whole family reaps the unsavoury results.
Usually, when someone mentions seizure, the first thing that springs to mind for most people is the classic jerking fit. B has (thank fuck) only ever had a handful of these. Before my up close and personal encounter with the epilepsy hellscape I would have thought the exact same thing. But it's a myth. The reality is seizures can present in a million different ways; it's like the ultimate hundred-headed beast.
Considering our very existence boils down to billions of electrical signals being fired at lightning speed inside our heads, it's not surprising that when it all goes to shit, this could pretty much mean anything in terms of what actually happens. Everything is contro…
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…
On Tuesday, B's carer (who is an all round legend at all things B) brought him back early from after-school respite because his peg had split. A peg (stands for percutaneous endoscopic gastrostomy, if you're interested) is a tube that goes directly into a child's tummy, to allow parents and carers to administer meds and feed.
We initially had one fitted a couple of years back when B's seizures were crazy and we couldn't
medicate him orally- at which point he was having upwards of 70 seizures daily. Poor kid was totally non-functional and lost a lot of previously gained skills. The epilepsy B is affected by as a result of his chromosome condition is life threatening; he has many different types of seizure and because of this it's often very difficult to find a mix of meds that fully controls it. The peg has literally been a lifesaver for him- we're now able to medicate and instead of 70+ seizures daily we now typically see a handful of small ones, which have…