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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‘Twas the Night Before Christmas
‘Twas the night before Christmas, and throughout
Excitement was building- for Santa and sleigh!
We’d like to portray a warm cosy scene,
But the truth is unfortunately not that serene..
The past month at school has been crazy and busy
Nativities, shows, parties; it makes my head dizzy!
The kids are all tired and grumpy and such,
She punched me! He scratched me! It’s getting too much.
At last they were nestled all snug in their beds,
While visions of snow angels danced through their heads.
The hubby and I had a cheeky nightcap,
And settled our brains for a (brief) winter’s nap.
Awoken next morning-4:30, oh dear-
I’d been informed Santa had already appeared?
Mixed feelings arose as I rubbed my tired eyes
Festive fun? Happy families? Lies, lies, more lies!
Now for those of you ‘typicals’ this is gonna sound mad,
But here Christmas is like any other day to be had.
The seizures don’t stop, nor do B’s complex needs,
But the pressure to have one perfect day is extreme.
The girls want the warm, magic, glittery glow.
But Christmas is hard to pull off don’t you know?
New faces, new food and a present or ten
Means the house gets pretty scary and unpredictable, then:
Our boy who’s non-verbal, who can’t say a word,
Gets grumpy and cross trying to make himself heard.
The crosser he gets the more seizures we see
And the less he can cope with the Christmassy glee.
We try very hard but it’s most fair to say-
Autism and Christmas-not a fun mix, no way!
If we head out he can’t keep his temperature stable,
If we’re in? Hanging scarily upside down from the table.
Routine out the window, B’s all of a flutter,
Tears and frustration-the house is too cluttered.
The colourful presents he pushes away
What the heck’s with the oddly wrapped box anyway?
To those folk who love Christmas, it’s hard to relate.
In honesty each day we’ve enough on our plate!
With therapy and meds, nappies, PECS and the like,
Not to mention the sleep we don’t get every night.
With every intention to make good memories and cheer
We’ll keep on keeping on, year after year.
But life for us hangs in a balance you see
Not much room for manoeuvre or spontaneous glee.
So a plea from the parents of special
kids UK wide,
Please don’t judge us-we truthfully really have tried
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…