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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Surviving Summer (E2)
Day 2. I appear to have been caught in a time warp. What is apparently day two of the school holidays actually feels like day 297...
Today I wasn't solo, I had help in the form of one of our awesome carers. Teen Queen and the Drama Diva were out being sociable, which left me with Little Miss Mouth and B.
All was going well until B woke up. He wasn't happy with life this morning, and point blank refused to get in the Carer's car because he wanted to go in ours thank you very much. Eventually I bundled him in, and firmly told him he was going to Adventure Wonderland, and he was going to have fun (with as much fake-it-til-you-make-it as I could manage). They drove off, B screaming. And I felt shitty that nothing is doable together because of his crazy level needs. It stinks.
Carer told me he calmed down pretty quickly but had to battle tourists and summer chaos at Adventure Wonderland. B doesn't do well with personal space invasion, and tends to respond by pushing, tapping or pinching anyone in his immediate area. Not so conducive to remaining in one place for any length of time during summer in a holiday location. Fuck tourists.
I headed to the seaside with Little Miss Mouth, who spewed various forceful opinions at me until my very good friend helpfully rescued me. She kept her at the beach while I came home to be an extra pair of hands in case B needed 2:1 cover. As it was things were pretty chill at that point, but we work on a minute by minute basis in this house which is at best stressful, and at worst insanity-inducing.
Cue survive until S got in from work. Shove processed breadcrumbed food in oven. Generally lament the current state of my life until it dawns on me I DIDN'T HAVE TO FEED B THE BEIGE SHIT TODAY. Because he ate! This is a big fat win. And the best thing? IT'S THE SECOND DAY IN A ROW! I did have to change pads that rivalled the stench of festival toilets but still, the boy ate.
Today's lesson (at the risk of sounding overly optimistic and Instagram affirmation-y)..? In the midst of the shitstorm, there's always a rainbow. Well. A sliver of sunshine at least....
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…