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Strong and stable, fairy fable...

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Theresa May, Theresa May,
What the fuck is left to say?
Strong and stable, strong and stable,
Turns out that was just a fable

Now we've properly crashed and burned
The joke's on you, the tables turned
YOU'RE going to have to deal with it,
Now that we're bollock deep in shit

Your arrogance is pretty vile,
But head-up-arse is just your style
We really should feel sorry for you
Since clusterfuck's just what you do

You didn't even cost your plans
Yet had a go when Jezza had
And let's not go there on debate day
No-show? Not cool at all Ms May.

The decent thing would be step down
But you intend to stick around
Why exactly won't you bail?
When this was such an epic fail

Stubborn, greedy, power-crazed?
It's left the country quite amazed
The Tories keeping super schtum
While Labour level up- game on

I'm sure deep down there's something good
I'm sure you'd rewind if you could
But now you can't; and it's a mess
We're not your pawns…

Bluesday Wednesday

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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…

Tory Stories (ii)

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Things that give me the rage:

People who leave one straggly sheet of toilet paper on the roll to evade replacement responsibility. You people are worse than Satan.

Tory policy on disability. This current government have turned the system upside down to try and shake out the fakers, meanwhile making life fairly hellish for the 99.3% (fact check here) who claim benefits entirely genuinely. No one wants to be disabled for fuck's sake. No one chooses to rely on a system not fit for purpose. No one enjoys being subjected to copious amounts of admin and dehumanising, anxiety inducing assessments by unfamiliar professionals to gleefully reap their extravagant reward of £21.80 (lower rate), or £82.30 (highest rate) per week. Try living on that and see how far you get. Rent? Forget it. You're screwed. Add to that the constant stigmatisation of the media and wider society - oh, and the fact you actually have to live with a chronic disability in a culture where human worth is so often mea…

Tory Stories

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I've been sitting on this for a while. Not literally, you understand. Sitting on any Tory for whatever reason is not something I wish to engage in. Ever. *shudder* I wanted to make sure my response was considered given the current shit hot mess of a world we find ourselves in. 

Iain Duncan-Smith falls well and truly into that category of Tories I don't wish to sit on. As the parent of a severely disabled child with complex educational and healthcare needs, I have nothing but contempt for this man in his professional capacity. He's made disastrous decision after disastrous decision as Secretary of State for Work and Pensions; decisions that have had direct detrimental impact on the lives of numerous chronically ill and disabled people. 

This clip (see here) took shit to a whole other level. Essentially, distilled into one short interview, we see the priorities of the Tory government regarding not only immigration, but also what constitutes basic human worth in a much broader …

BAPS Awards (not what you think)

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Confession time. I feel like a fraud. I just spent a night at a very fancy BAPS (Bloody Awesome Parents) award dinner for SEND (Special Educational Needs and Disability) bloggers. The evening was hosted by Sally Phillips, the brilliant comedienne best known for the likes of Bridget Jones and Miranda, who also happens to have a ten year old affected by Downs Syndrome. The dress code was 'formal', which for me meant digging out the one generic non-scruffy item I own, and even then I was sincerely underdressed. There was a posh dinner, complete with multiple cutlery sets; thankfully my mate Rachel* was on hand to tutor me through the whole experience (outside in, if you're ever in a bind..). And there were more acronyms than you can shake a stick at. At one point I got a little concerned I'd eaten the next door neighbour's bread roll- seriously, make that shit clearer, it's 50/50 right?

I'd gotten through to the finals in the SEN with a side dish of humour ca…

Parklife

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A trip to the park should be a cosy, heartwarming affair. Right? Giggly squeals from small rosy-cheeked faces. Little fingers clutching at blue rope that's inclined to give you rope burn if you hold on too tight (or have to haul your not-so-little self up by). I used to offer silent blessings to the park-gods for every half hour killed at the play area with the small people in my stay-at-home-mum days. I also used to smugly survey my winning-at-life-ness when it was always everyone else's kids starting toddler wars or causing general chaos while mine politely waited their turn on the slide, or offered to help push tiny ones on the swings.

Oh, how the tables have turned. Now, an outing to the park resembles the Hunger Games. Except instead of being the person running from the threat of death, I am the one trying to rein it in. Yes, that near death experience is, in fact, my child. My child with a myriad of complexities. My child who sees the world entirely upside-down compared t…

Easter Island

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Something we are constantly told as parents of special kids by almost everyone we encounter is this. ‘Make sure you look after yourself. You’ll be no good to anyone if you don’t.’
This advice is dished out readily and in abundance, but, like the slightly-out-of-date dessert your late-night nemesis self just couldn’t resist, it leaves a slightly bitter taste, and the reality is never as good as the idea.
I already feel bad. I feel like a shitty parent most of the time. Adding to my mile-long to-do list with another self-care tick box is not helpful. Also, I know I’m never doing enough. It’s the nature of having a child so complex. I’m constantly thinking of all the things I could be bettering to improve the outcomes for my beautiful boy, and generally for our family, and there’s literally always more. I’m consistently missing the mark, because the goal posts are permanently being shifted. Family life ends up being this crazy pressure cooker of trying. Trying our best to make sure ever…