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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today would have been my mum’s fifty-sixth birthday, but she never made it this
far. For whatever reason, she had to go at the tender age of fifty-four and a
bit. It also happens to be my daughter’s ninth birthday- I can never quite
decide whether that was poor planning on my part, or a decent hand well played
by Fate. We ate cake for breakfast, made pancakes, and I waved O off as she
merrily left to visit her grandparents. I hung out with my little sister; we
had lunch in a café we occasionally visited as kids, that happened to be
re-opening today after a lengthy refurb *cue spooky music* bought flowers and took them down to the
river where we launched them one by one (speedily-sorry mum) in the pouring
rain while saying ‘Happy Birthday’ in as many different accents as we had
flowers. We know how to live, the little sister and me! The ducks were none
that impressed when they quickly realised that the lilies weren’t the bread
they’d been holding out for, but other than that a fairly un-sad and successful
trip. They say time is a healer and that would seem to be true, at least in
this case. We still both miss her on a daily basis, but remembering her doesn’t
hold quite the same sting anymore.
other news we are struggling on an epic level with our five-going-on-fifteen
year old. I’m fairly sure anyone who knows me would say I was a pretty chilled
parent; I have that whole opposite of control freak thing going on- some may
call it ethereal, others just disorganised. I try my best to let the bad
behaviour pass me by, I am NOT a fan of supernanny, and if you asked me the
value I most want to encourage in my children, it would undoubtedly be
free-thinking. Martin Luther King, Elizabeth Cady Stanton, Florence
Nightingale, Mary Seacole, Emmeline Pankhurst, Mother Teresa, Sigmund Freud,
and many others- examples of incredible fearless people who valued
individuality and human rights over any of the constraints society and culture
shackled them with.
Henry David Thoreau once put it “Disobedience is the true foundation of
liberty.” I totally agree with this. And yet, what the heck do you do when
that free thinking person happens to be your little shit of a child? She questions everything, and I mean
everything. When I ask her to please do something, she asks me why, thinks for
a moment and then makes an informed decision, mostly to the tune of no thanks
mum, piss off. Thankfully she doesn’t know any swear words yet, so hasn’t
actually ever told me to piss off, but I don’t reckon that particular issue is
too far round the corner. She went a bit crazy the other day and smacked me, so
I attempted to pull the supernanny routine and sit her on the ‘naughty step’
for two minutes. She promptly got straight up again, and so I placed her back
on the step and informed her that any further attempts to leave said step would
result in a loss of pudding. She loves pudding, but even this wasn’t enough to
thwart her crazy bright freethinking little brain and sway her into conformity.
She proceeded to ask me what exactly we were having for pudding, in order to
weigh up whether it was worth staying on the step for. Facepalm. The child also
happens to be no respecter of persons; the thinking for herself and apparent
rudeness can occur at any given location. She isn’t scared about taking on
older children at the park if she thinks something is unfair, and she will
definitely speak her mind if asked a question by an adult, regardless of any
social constructs and without concern for how her response may make them feel.
Her school report stated ‘BP knows her own mind and is very confident in
sharing her opinions.’ I know a few teachers and up until July I worked in a
classroom, and that little statement basically translates to ‘how the heck do
we tell you your kid is a non-conformist nightmare child.’
it got me thinking; how can the very thing I value so much in child rearing
also be my biggest bugbear?! And I think the answer lies in the fact that B
happens to be reacting at a level way beyond her years. She responds with the
thought processes of a child much older, and with life experience even most
adults won’t ever have the pleasure of. You see she’s my fourth child. She
comes after my very special boy, a kid who needs around the clock 1:1
attention. She bears the brunt of B’s frustration on a regular basis and has
the bruises and scratches to show for it. She watches her brother seize up to
45 times a day. The phrases she most often hears are, ‘BP, just wait… please wait…
not right now… I’m in the middle of dealing with B…go ask your sisters…I can’t
right now…hang on…two minutes…’Conversations are regularly cut short in order to rescue B from some
predicament or other, her older sisters, while very gracious to a point,
understandably get annoyed with her banging on and on at a constant high
volume. She wants to be heard and yet so often, through circumstance alone, her
voice is drowned out by generic chaos. We try and set aside Mummy-B time, which
she laps up, but as soon as regular life kicks in again after that little oasis
she defaults to defiant little devil.
the more I chew on it, the more I realise the impact of having a special needs
child radiates out to the whole family, and more than that, has an immense
effect on the baby born after him. Emotional exhaustion, physical fatigue,
sleep deprivation, adrenaline insanity, system fighting, advocating and the
day-to-day chaos of living with four children, one of whom you literally cannot
take your eyes off for a second, are all ingredients for a less-than-ideal
environment in which to raise a little girl. Sibling Syndrome. My guess is
it’ll go one of two ways; either I’ll end up with a compassionate, strong
survivor or I’ll end up being a granny at 40! I haven’t got a crystal ball, and
of that I’m very glad, because if I knew what was the next curveball in the
game of my life I might well just give up now. So I’ll keep trying my best,
even when that best seems so far from good enough.
next time you see a kiddo kicking off (especially if it happens to be mine!)
please try and view it through the kaleidoscope of context. And if you don’t
know the context, don’t succumb to the judgey constraints of social
appropriateness just because. Yes, a child may be displaying definite signs of
Spoilt Shit Disorder, but they may also be showing old before their time, freethinking
Sibling Syndrome traits.
is the true foundation of liberty.’ Henry mate, I f***ing hope you’re right.
*Since time of writing I have set up a funding page to try and get out to a conference about my son's rare condition. Please head over and give if you can.
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…