Day 71. And LB is happy again. He’s definitely turned a corner, as staff told me yesterday, and is delighting them with his humour. He is one hilarious dude. Time to start thinking about next steps. But for now I’m off to a disability conference in Finland (and some cheeky Finnish street photography) which couldn’t be better timing. 🙂
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 ?
* http://www.guardian.co.uk/society/2012/nov/23/remploy-workers-new-jobs-labour
You know that saying; that things can’t get worse? Well that’s turning out to be a load of old codswallop. After the whole CPA meeting surprise (see yesterday’s cheeky little number for details) and, as yet, no sniff of what the future might hold for LB (Don’t. Just don’t even mention support), I went to visit him yesterday evening. He was in bed, dozing. With a bitten swollen tongue. Signs of a seizure. Or size of an elephant it might well have been.
The bitten tongue had been noted and Bonjela on order. The seizure dimension overlooked. LB’s seizures have always worried the pants off me. Not least because it took about four ‘in your face’ tonic clonic epics before the docs would even entertain the idea that he might have epilepsy. We were tripping over that old ‘he’s got to learn to manage his stress/star charts anyone?’ chestnut (a.k.a. the learning disability trump card) for months.
The thought of him having a seizure, in a locked unit, unnoticed, has generated a new level of distress I can’t describe. Â I don’t care how old he is, and I certainly ain’t treating him like a child, but I want to comfort him, and keep a watchful eye for any further seizures. And I can’t.
It was LB’s community team meeting at lunchtime today. He’d refused the farm so talk turned to finding him something to do instead of school. My brain nearly melted.
How can we be in this position of “finding him something to do“? Not just him. Any young learning disabled person? How can we be talking in these terms? Where’s the aspiration? The opportunities? Â Ironically of course, giving LB choice is an effective way of erasing aspiration from his life; he will choose to stay in bed, watch DVDs and eat loads of cake.
I walked back from the meeting, head reeling. I’d mentioned that we have given thought to LB’s longer term plans (of course), we have got a folder full of residential college brochures that the county council will never fund, we know that local college provision is crap, and that leaves, er, direct payments. Which is where we started.
How can provision be this crap?
Well the walk to the unit kind of (but not really) sheds some light on that question. A 25 minute walk through a local estate to the ring road where the site is. I thought, funnily enough along the way, how this location reflects the status of learning disabled people in society. How much learning disability provision is located on the margins, at the edges of towns and cities? Winterbourne View was on an industrial estate. Leominster day centre is literally next to the dump.
A very recent indication of this status is evident in the endless discussion and jokes in the media, and social media, about the ‘swivel eyed loon’ comment, with barely any reflection on the offensiveness of this comment. It’s almost as if people don’t see it…. because really, and maybe subconsciously, they don’t see learning disabled people as fully human.Â
I got home and had an email from the Care Manager. I’d chased her up this morning about arranging a meeting to talk about LB’s future plans. She’d emailed me a couple of months ago to say that when someone is about to leave the unit, they have a Care Plan Approach (CPA) meeting to discuss what is going to happen.
Her email said it was being held on June 10th. In less than three weeks time.
Turned out the invitation had been emailed to various professionals last week with a note at the bottom saying:
Please let me know if anyone else should be invited to this meeting.
No words. Just tears of frustration and rage and despair.
Buffet lunch at our favourite Indian restaurant. Fun and filling. And no burgers.
LB went to the farm today. Under duress but with effective encouragement. His face lit up when he saw his teachers apparently.
He was lazing in the living room, surrounded by his transport magazines when we turned up this evening. He showed us his scrap metal notebook. After the list of items he’ll need to set up a scrap metal depot, he’d drawn a picture of a lorry on each page and labelled them ‘scrap metal lorry’.
Towards the end of the book, there was a picture of two men with guns pointed at each other, labelled ‘Dirty Harry’.
“Wow. Have you seen Dirty Harry LB?’
“Yes.”
“You must tell Grandad, he likes Dirty Harry.”
“Yes.”
“Whose the other man in the picture?”
“Dirty Barry.”
Crap. Crap. Crappity-crap. Thoughts are pinging round my head that I want to write and ‘resilience’ keeps cropping up to capture them. Ggggrrrr. Â I’m not convinced by ‘resilience’ in this context. I want a different word, one that feels more comfortable. But what???
Anyway, parking that for a moment, I had two days off this week. What a pile o’ shite they’ve been in some ways. Terrible weather, the weekly community team meeting (CTM) at LB’s unit which is (inevitably) a real party stopper, a few failed tasks and overdue domestic stuff. The cockroach remains in the freezer, way too cold and miserable to schlep up to the post office – me/the weather that is, not roachy. LB refused my offer of various outings preferring to have a long bath instead. [And no, I didn’t play the McDonald’s card again, because it can’t become about burgers all the time].
After piecemeal chores, and heating up leftover curry for me and Rosie, I went back to bed with my book and ipad to power through some Candy Crush levels. And have a kip. That was cool. We got to visit LB early evening and, with some persistence, caught his attention in a scrap metal yard discussion. With him smiling, it was ok to leave. (And get caught in rush hour traffic on the ring road home. In the pissing rain).
Anyway, this is a long ramble really, about my thoughts yesterday evening.  I got to thinking about the recent jaunt to Bristol with twitter buds Kate and Alexa, to visit a superb social enterprise set-up. This memory was one of those winding moments that can be unexpected.  It’s a funny one really. I avoid LB’s bedroom and feel sad when the odd bit of his clothing comes through our (chaotic) washing process. But I can watch previously lost home movies with real enjoyment. Then I notice an old ‘Pupil of the Week’ page (yep, the dude racked up quite a few over the years) pinned to the fridge, or chat to someone in the street, and that punch in the stomach is back. Together with the old rock throat combo.
Ironically, 57 days on, we’re in another liminal space.  Liminality was something Katherine RC and I wrote about a few years ago in relation to being (academic) mothers of disabled children, excluded from disability studies (for not being ‘disabled’). LB being contained is another version of this, in a different space.  We have no idea what is going to happen, how it’s going to happen and what we should do to help/make things better for LB (and us). There are no guidelines, no advice, no rulebooks.
The CTM focus is on the here and now; LB’s everyday life in the unit. The broader questions can’t be answered. I was recently flagged up as a problem in a meeting I missed; described as unable to move beyond seeing LB as a child. While this has since been ironed out as misunderstanding/miscommunication, it contributes to the experience of liminality.
My reflections here are twofold; I’ve been struck by our resilience adaptability? acceptance? ability to get on with stuff? as a family. We’re all mucking in and making do, getting through and looking out for LB. That’s fab. Seriously fab. I don’t know where these resources come from – if someone said 56 days ago, that LB would still be in the unit at this point, I think I’d have collapsed – but we’re muddling along.
My worry is that in the same way I’m only able, with hindsight, to view the course we took with LB as a pup, as unhelpful, we may similarly get blown off course here. We’re almost back in that ‘just diagnosed’ type space. Unable to make any sense of it and dependent on the views of health and social care professionals. Â We have no idea what ‘the course’ is, or should be, particularly now LB’s tipped into an unthinkable place. And perhaps they don’t either.
I also wonder if being ‘resilient’ may muddy things. Â We’re so busy muddling along, dealing with direct payment nonsense, negotiating visitations to LB on a daily basis, schmoozing, ranting, questioning, trying to get some sleep, and hold down jobs, we’re unable to see things clearly. We’re simply following a well trodden path which I suspect should be changed.
Bit of groundhog day this weekend. My PhD (started about 10 years ago now) focused on going out in public places with learning disabled children and McDonald’s featured consistently in the interviews with mothers. Or the ‘Land of the Golden M’ (as it was then) as one mum called it.
Children’s ‘busy behaviour’ was tolerated, the food arrived quickly, it was always identical (very important to a lot of kids who were on the autism spectrum) and sprinkled with that magic dust that makes it pretty taste-tastic for kids.
Regular readers will know that now LB is offered choices in a fairly blunt way, it can be difficult to encourage him to do things. Last weekend he said no to going out with us, so this weekend, we decided to fall back on the old favourite and offered breakfast at Mooky D’s. An instant “yes”.
Wow. Changes afoot in the Oxford branch; self service machines and a new queuing system. Even better for the less than patient. It was fast and we had a laugh.
LB was in great spirits and, once he’d noshed every bit of his food and drunk his milkshake, chatted about scrapyards and tyre disposal. Perfect.
We now have a dead (I hope) cockroach in the freezer.
It was hanging out with some carrots and leeks in the bottom of an organic veg box. The size of a small elephant. The freezer wasn’t our idea but the advice of the veg box company’s resident insect expert (a PhD in moths apparently, but turns her hand to other insects). Cockroaches don’t like the cold and it’s heading off on a journey to London Zoo for identification on Monday. Doc Moth thinks it’s a Periplaneta australasiae from the image I emailed. Rich thinks it’s an American one. Whatever. Whoever. My organic veg box days are over.
Randomly, it’s not the first cockroach of the week. One of LB’s unit dudes had a right old chuckle enjoying people’s responses to strategically placed giant plastic (but very lifelike) cockroaches around the unit midweek. Love him.
Then this evening, I was reading about Mencap’s  latest campaign, Steve and Sam, and was floored to see that Winterbourne View was called a ‘treatment and assessment centre’. I hadn’t picked up on that at the time.
So a further layer of hideousness to what happened there.
Is that possible?
Cockroach week.
Back from work this evening to find Will here. Fab surprise. Â He drove me [????] round to see LB. Yes. He drove me round to see LB.
We found LB in the living room with his DVD playing on the big screen. Everyone sat around, chatting a bit. Watching the film. Hot Fuzz. Peaceful times.
LB didn’t really say much but Will caught his attention a few times – with mention of Chunky Stan and his work trip to Somerset tomorrow. And Eddie Stobart of course.
50 days later.
mydaftlife 