Inside-out knicker-trousers... and other tales of joy

So I've been wanting to write about this for a while, and I have a feeling it may be a touchy topic, especially amongst my fellow parents of kids with special needs.

First up, I'll let you know where I'm at, since I haven't blogged in a while. Life is still chaotic- nothing new there. Raising four kids is fairly full on; my life is spent mainly removing knickers from inside-out trousers that have been left to walk themselves from the bathroom to the wash basket, spending hours cooking meals that are wolfed down in minutes, practising my ninja-reflexes since B's current favourite activity is throwing every toy he can get his hands on after playing with it for approximately three seconds, and attempting to maintain some sort of sanity during the dreaded GCSEs. I was working for a few months as an SEN planning co-ordinator for the local authority while applying for educational psychology training-which almost killed me, by the way- the whole process was brutal. 'W…

So this is Christmas

Every year during the first week of December, we take our kids out of school for an annual family holiday. Well, I guess more accurately an extended mini-break. And yes, we do manage to get schools to authorise the kids absence; funnily enough, pulling the exceptionally-complex-child-with-unknown-prognosis card works like a charm. I'm thankful there are still common sense people in the world.

The only place we've managed all together in recent years is Center Parcs. When I say together, I mean simultaneously inhabiting the same few square miles with the united intention of doing fun stuff. And for the last while, it's worked.. ish. B LOVES the swimming pool for all of an hour until his distinct lack of body fat lets him down in the temperature stakes. The girls are mature enough to go off and do their own thing. We used to be able to snuggle up and watch a Christmas movie once B was in bed.

But increasingly, year on year, this shit has got harder. Last year B was seizing …

Joy to the world (spoiler alert: #notchristmasyet)

Apparently comparison is the thief of joy according to the numerous Insta-inspiration posts I've seen of late. I follow a whole bunch mainly because they feed my somewhat twisted sense of humour. And partly because rainbow pictures are nice.

On the surface, this seems like a good titbit of wisdom. For example, I will never have the boobs of a Victoria Secret model. Too many humans sucking on them for too long, and countless years of rebelling against the need for a bra as a teen have left my assets somewhat lacking in the perkiness department. If I gave a shit about that, and lusted after tits that did not require, in essence, scaffolding to hoist them above knee level then yes. Comparison is futile and would make me sad. 
But there's something about this trite little phrase that irks me somewhat. A slight smugness I suppose; the idea that whatever our lot we should just suck it up and crack on. It sounds like the kind of soundbite advice condescendingly dished out to those pe…

'You look tired.' No shit Sherlock.

Today I am tired.

Tired because sleeping is hard and my brain won't shut off. 
Tired because four kids and the subsequent mundane bollocks of such activities as Tesco. I really really resent spending precious life moments fucking food shopping in the monstrosity of the mega market. 
Tired because admin and bureaucracy. 
Tired because it feels like my head will explode with one more bloody Oxford-ism. I swear academia mostly involves learning multiple pretentious words to describe a few simple-ish concepts in a thousand different ways. Except philosophy. Fuck philosophy. 
Tired because I have been fielding seizure related phonecalls from school today. B's epilepsy is an arse right now. 
Tired because this past weekend revolved around trying to look after a very manic, very unsettled little boy. The consequence? My hands are covered in scratch marks, and anywhere on my body that's B-reachable bears some kind of bruise.  Exhausted because life. 
I'm also sad today. I sat in…

Epilepsy-the hundred-headed shape-shifter

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…

Predictably Unpredictable

Whenever anyone asks me to summarise what it's like living with a complex needs child, I always know exactly what to say. Predictably unpredictable. Essentially, the only thing we know for sure is that we have fuck all clue about what happens next. And this pans out on a number of levels.

At home, we have no idea how B will behave from one moment to another. It's a real struggle to put into words the utter chaos that causes without sounding completely hyperbolic. The nearest I can get to an (entirely non-pc) description is it's like having a big, non-verbal toddler on crack. But even then we're barely close.

Hands up parents who remember that helicopter phase? You know, the bit of life where you can literally do nothing for fear of your small person completely trashing your house, themselves, or some other child in the vicinity in the three seconds it takes you to express pee the bladderful you've been hopping about with all bloody day? I remember those days well. …

The Twelve Days of Shitmas