The egg of trust and the GP

LB had an appointment with the GP after school today. He’d had a liver function test to check out the medication for his newly diagnosed epilepsy.  The doc said that there was a bit of a problem because the blood level showed that the drug was at a level that suggested it wasn’t being effective.  Instead of a level (of something but no idea what) of between 40-80, LB’s blood showed 25.

The options were to up the dose to a level at which it was effective, continue the dose (but it wouldn’t be achieving anything) or stop the dose because, as it wasn’t working and he hadn’t had a seizure for three months, he didn’t need it. It was up to me to decide.

Whoa. Hit me with the first example of non paternalistic decision making I’ve ever experienced when the stakes are so high, why don’t you?!  The potential of tonic clonic seizures or even stronger medication with hideous long term side effects.

I got the doc to talk me through it all again, and once it became clear that upping the medication was only really treating the medication, as opposed to preventing seizures, I decided to keep the dose as it is until we met with the neurologist again.  I’m a bit suspicious of stats at the best time and didn’t really buy the 25/40-80 stuff. So the outcome of my first patient weighted decision making; defer the decision.

So home, kettle on, dig out school diary to find out the latest happenings in the sixth form.

“LB has been brilliant today. He has an egg to look after as part of our work on trust and bring back tomorrow hopefully in one piece”.

“Wow! An egg of trust? LB! Where’s your egg matey?”

“In the bin.”

“What? Whaddaya mean???”

“It’s in the bin, mum.”

And it was. Crushed. Barely retrievable.

“Why did you chuck the egg away, LB?”

“Cos I’m ANGRY WITH THE SCHOOL. They wouldn’t let me do what I wanted to do”, he fumed.

“Yeah, well sometimes you have to do what you’re told, matey”, I said, putting on a pan of water to boil a new egg of trust.  “And sometimes you  wish you were told what to do…”

 

 

The carer’s assessment

Real time blogging these days. Freshly hatched happenings.  The carer’s assessment which took place this morning. My first ever carer’s assessment – shame on you social services – after 13/14 years of social/health care dealings.

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Different spaces

I got thinking about space today, after another bizarre lift journey where I stood next to a random stranger for two floors up to the office and then left that space without saying a word.

LB has made me think about spaces differently.  He uses space in a way that is out of the ordinary. He uses spaces that other people don’t use. I remember one time when he was a toddler, he disappeared in his bedroom.  I had a few heart-stopping minutes before finding him fast asleep on the second shelf of a Billy bookshelf.

Later, when he started school, he’d come home and climb in the swing bin if it was empty. He’d want the lid on and would stay, tucked up, till tea time.  We sort of got used to it though I sometimes worried that someone would turn up unexpectedly and wonder what the fuck was going on. Continue reading

The cone of shame

Today I’m wearing the cone of shame. And it’s only 10.15am.

The direct payments police came round to ‘help’ me with my returns.

Now what does this mean? Direct payments? Returns? This… for those of you who are not familiar with this area, is about our CARE PACKAGE.  LB gets funding to cover the combination of services he is assessed to need.  So we get this funding in a dedicated bank account, use it to pay for someone to look after LB, and have to fill in forms accounting for what is spent, the interest earned and so on.

This is the bit I’ve failed on.

And this is why I’ve spent the last hour sitting at the kitchen table while some man in a suit has filled in the forms for me, while glaring LOSER at me every few seconds.  After highlighting the bits I have to sign with an enormous yellow highlighter pen AND a big biro cross, we are done.

“Oh, just one more thing Sarasiobhan, you loser”, he said. “You need to take out employer liability insurance. It’s £99 a year”.  Another form. Another swipe with the highlighter pen AND a big biro cross.

It’s over.

I walk him to the door.  “You do realise our care package is for four hours care a month?”

“Yes,” he replied.

“That is £40 a month.”

“Yes,” he said, and walked over to his car.

“Ok”.

I shut the door and go to file the paperwork neatly.

Postscript: I made that last sentence up.

Literally literal lives

This cartoon made me laugh my socks off because it brings back so many memories.  All those early pitfalls and unanticipated problems that spiralled from the tiniest bit of communication bijiggery*.

Like when Richy Rich took LB camping for a long weekend with some of the other kids. He was about five. Richy called from the beach on the Friday evening; all eating fish and chips, everyone having a fab time. So, so cool.  First thing in the morning LB got up and said “Home”. He’d camped. Job done. Continue reading

A crazy-dude free world

Vince and Howard from the Mighty Boosh

Ok, here’s the rub. You’ve bought tickets to see a show in London (a costa-del-armandleg jobby).  Three rows in front, a young geezer does impressions of the gorilla, Bolo, from the Mighty Boosh in a very loud voice every few minutes*.  The person next to him makes a show of saying “Shhhhhhhhh”, but this is more to appease the increasingly irritated people around them, than any expectation that he’ll watch the show quietly.

So, should they leave so that everyone else rest can watch the show in peace?

Or should the audience relax their expectations? Continue reading

“Any minute now mum?”

We expected a BT engineer this afternoon as our phone and internet is broken. This had particular significance for Laughing boy because of his love of watching Eddie Stobart lorries, bus and cross channel ferry videos on youtube. I felt like shite and spent the day in bed but at 1pm LB came in and asked what time the engineer was coming. “Ah”, I replied, “Anytime now. They said between 1 and 6pm, so any minute now”. “Any minute now mum?” repeated LB, bouncing off happily.

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Nanny McPhee and the supermarket sweep

In addition to reversing the car, supermarkets were always a no go area with LB.  He would turn into some character from a horror film with blood-curdling screams that penetrated every aisle.  My strategy, if I couldn’t avoid the trip, was to grab, squash, snap and sweep*.  (Grab (LB), squash (him into the trolley seat), snap (the straps shut) and supermarket sweep).

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The Eddie Stobart Story

These posts aren’t in a chronological order, so this probably won’t have the resonance it should. But random is good (sometimes). Laughing Boy came into the kitchen tonight and said “Thank you mum for phewddryfhddndfhrrhsssvvbnrtt”.

Whoa!!! Wha?? LB initiating a conversation? Unprompted? That isn’t about a need (toilet, internet access, maintenance of routine…) This is amazing. A “thank you” opening??? What are you saying LB???? Continue reading