Tag Archives: expectations

The Unit. Day 67

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Bit of a gap in posts for various reasons, none of which relate to LB. For once. Anyway, LB’s life is currently reflecting Candy Crush. Groundhog day at level 125. [Yes you Candy Crushers, suck it up.. it’s a therapeutic tool for me at the mo’ and getting to 125 has taken many, many night time/early morning hours. And I’m STUCK]. The choice offering is interfering in LB’s (non) school attendance. Decisions made in the weekly community team meeting about going to the farm to work are sunk by him being given the option to say ‘no’. So he’s been unit-bound since the buffet lunch last Sunday.

Not a big surprise really. Give any teenager the choice of school/work or doss off, most would choose the latter. But most teenagers aren’t offered that choice. And most would eventually realise that they have to do something productive. The adult space opening to LB is looking alarmingly like a version of day-centre-life.

I’m sure I’ve mentioned an article about an Oxford based learning disabled man’s (Rob?) long term experience of a day centre that was in a Sunday mag years ago. Rob? said if they finished their task of sorting screws (or whatever it was) before the end of the session (probably around 3pm), the staff tipped the trays out so they could start again.  The futility of this activity was piercing. The article could have been (I wasn’t as up to speed in those days) heralding the increase in self-advocacy groups and advent of direct payments as I think Rob? went on to be an early member of My Life My Choice. These developments were great but we all know (well those of us who look at reality rather than the rhetoric *cough cough*) that this shift has been largely superficial. There are the lucky few  who have fallen into an exceptional (but still cash strapped) social enterprise or individual setting. Most are unemployed, unfulfilling any potential they have. Eh, what’s that? Remploy? How many ex-Remploy employees have found new jobs? Naw, let’s not go there…*

I think introducing choice has erased discipline for young dudes like LB. The number of injunctions he took out against the dishwasher, as his allocated family task, was hilarious, but the job got done. School similarly have been easing sixth-formers into working environments, trying to help them understand that work is a part of life. But once you take that discipline away, you’re left with yawning space to fill. With DVDs, trips to the shops or fast food restaurants and hanging around.

That’s it for now, really. Unless anyone has any hints about cracking level 125 ?

ryan5-210

* http://www.guardian.co.uk/society/2012/nov/23/remploy-workers-new-jobs-labour

Boundaries

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It’s a tough gig bringing up a disabled child. Yep. It shouldn’t be, I know. Appropriate, timely and sufficient support would make a huge difference. And a seismic shift in public attitudes. Of course these things overlap and I ain’t optimistic for all sorts of reasons that they will ever happen. But if they did, there would still be trickiness.

Take this morning. We’re in the midst of pretty dodgy times with LB and he’s booked into Parasol for four days for half term activities. A charity organising and supporting young disabled people’s access to, er, fun. Yep, it’s as simple as that.

But…

“IDON’TWANTOGOTOPARASOLMUM! I’MEIGHTEENMUM! YOUCAN’TMAKEMEGO.I’MGOINGBACKTOBEDMUM!”

Like his two younger brothers who will probably sleep/doze till lunchtime. Sigh.

All sorts of thoughts and considerations….

You’re kind of right…
We don’t want another major kick off….
You can’t watch youtube all day….
We’re both working today….

“You’ve got to go.” I said. Some ranting and raging. But at a low level. And he’s off to the Kassam Stadium for a day of bowling and cinema.

Now Parasol is an enigma to me. They organise a range of activities in and around Oxford. You drop your child off at stated destinations; outside the Playhouse in the town centre, or in the ice rink car park. Or at a local community hall. Believe me. This is seriously weird to a parent subjected to years of constrained, heavily policed and overly organised out of school child care for the ‘special needs child’.

Eh? Leaving LB at a community centre with the doors wide open, kids in the car park, and helpers running around having a laugh in squirrel onesies? Hello? These kids are runners, you know?! They’ve got no sense of stranger danger or road safety???? Hey, the door is open!!! Anything could happen. Anything! You hear me???

The organisation of Parasol appears chaotic and random.

But it isn’t. It’s run by and staffed by exceptional people who enjoy the kids, understand difference and get out there and get on with it. With impeccable leadership. And, in doing so, they allow some freedom, independence and fun for this group of young people.

Anyone who takes LB, and ten or more other young dudes, to watch Les Miserables (at an ‘ordinary’ showing) is cracking on in the right direction in my book. We all just need need to catch up with them.

Scrap metal

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This week, LB shifted his attention to scrap metal. A break from Irish lorries but with worse sound effects on youtube. He also came back from his dad’s with a toolkit containing a hammer and screwdriver.

Last night, there was a terrible crashing noise upstairs. He’d put his die cast models (some limited edition) in a pile and was hammering the screwdriver into them.

“Whoa! Stoppit LB! What are you doing?????”
“Making scrap metal Mum.”
“Well you gotta stoppit matey. Now!”
“Why Mum?”
“Because I said so! You’ll ruin them!”

“Blimey,” I said to Rich, sitting back downstairs, “Model enthusiasts would be weeping if they saw that…”

Then I started wondering why he should stop bashing them.

Progress

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It’s funny when you have a learning disabled child. The whole experience is drenched in so much unnecessary crap, and focus on deficit, that it becomes difficult to disentangle the important bits from the baggage that is thrown at you. It also takes time to step outside of the rigid, inflexible, structure of ‘normal’ child development to accepting the dude you have.

In the early toddler/pre-school days, instead of celebrating the progress LB made, I had a feverish, obsessional focus on what hadn’t happened. I wonder now if there were some thoughtful professionals along the way who tried to point out progress, but were met with a frazzled, semi-hysterical woman who found the fact LB was no longer going quite so crazy ape-shite when I reversed the car less relevant “THAN THE FACT HE AIN’T SPEAKING A WORD YET DESPITE HIS GROMMET OPERATION!!!” All very stressful, distressing and ultimately unproductive.

As years go past, those markers of normal development become more and more meaningless and I chucked em out along the way. I suppose, with hindsight, I wish someone had let me know gently and effectively early on that his would be a different path, with different milestones. I suspect that some professionals thought they were. The paediatrician sort of tried but failed spectacularly with her statement, when he was about three, that we should expect nothing and come back to see her when he reached adolescence to talk about respite holidays. I couldn’t get out of bed for about two days after that appointment.

Anyway, I’m thinking about this today because LB’s progress has shone. First, he spontaneously said “Hello” to us this morning when he got up. Second, he opened the front door to Tom this afternoon and said “Hello, Tom. How was the cinema?” Tom looked as surprised as I felt. I filled Rosie and Owen in with these happenings this evening.

“You going all posh on us LB?” asked Rosie.

A crazy-dude free world

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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 →