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.

An Appointment to Act

Laughing boy got a letter, out of the blue, towards the end of the last year. It was very official and obviously some government type letter, but it wasn’t clear who it was from. Anyway, it stated that some woman would be visiting him the following Monday morning at 10am to assess his capacity to manage his own finances once he turned 16. Well. What can I say? “What the shitfucktosswank is going on?” sprung to my mind.

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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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Tears (and disabled children)

One thing that seriously naffs me off, is when people talk about parents of disabled children experiencing bereavement.  I think it’s careless, pat, unreflective and unhelpful.  Some may, of course. Fair enough. But I suspect an awful lot don’t.

I think the everyday rules and sense of order, predictability and certainty disappear when you find out you’ve landed a speshy.  These rules/order revolve around ‘mainstream’ lives, not the lives of families with eel children.  And I think there is a sadness. A deep sadness, that is made up of all sorts of different things. Anyway, this got me thinking about tears and how much I’ve cried since LB was born.

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The processes that stifle

Sometimes I crave spontaneity when negotiating social life with a crazy dude like Laughing Boy.  Sadly, the experience is usually drenched in daft rules and unhelpful bureaucracy, especially when it is to do with health, social care and education.

Take one example. I asked for a referral to an endocrinologist because I wanted to ask some questions about the chromosome disorder LB had been diagnosed with many moons ago.

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“I hate those bloody disableds…”

Whoa??? What??? Eeeeeeeeeeeeeeeeeek? Did someone really just say that? Have I been teleported into a meeting of the inner circle of the Conservative party? What the fuck is going on?

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Medical spin and the sleep study

Just a warning for all you humour lovers; this isn’t a funny post (or a Moroccan disaster post), more a reflective one.  You can switch off now if you want… Continue reading

The eel bus

Rosie’s little mate, Charlotte, bounded across the playground before school one morning shouting “Sara! I saw Laughing Boy on the eel bus yesterday!” Whoa. Wha? The eel bus? Laughing Boy?  “Slow down a bit, Charlotte.. what’s the eel bus?” “You know, the bus that takes all the eel children”.. Eh, you lost me?  “The eel bus? Where did you see him?” “On the ring road in the bus with the other eel children” (silly)..  Ah. The ‘ill’ i.e. disabled children.

That was when I first started to wonder about where all the eel children were taken.

Early days

I used to like making soft toys from kits. I was pretty rubbish at it but I like to think it was an early indication of my interest in disability. Luckily I captured them all in a photo shoot in the back garden so here’s the gang;

(From the top going clockwise); Red felt buffalo, Patchwork cat, Pixie (lurking), Knitted mauve teddy, Soft brown dog, Brown panda, Pooh (lurking), Felt owl, Cute little cow guy. I think there may be one in between Knitted Mauve teddy and Brown panda – a sort of brown soft thing – but I can’t remember it. Maybe it’s just some mud.