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“No, maybe”. And ‘adulthood’

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More struggles over adulthood, rights and capacity… though I’m really trying. Honestly.

LB was due to go to the farm yesterday. Taken straight from the unit, bypassing school, to work with Sue and his classmates. When he was told to get ready, he didn’t look keen so he was asked if he wanted to go. “No, maybe” was the answer. There followed a hilarious conversation where he was asked various questions about whether he liked the farm and what he wanted to do, with a lot of “no, maybe” answers. It was finally established that he didn’t want to go to the farm and would prefer to go for a second choice; a drive and a long walk. His teacher was called and she asked to speak to him (love her). He didn’t budge. He later made it clear he didn’t want to do the drive/walk option either and stayed in his room. Whose idea was it to give this dude choices???

I’ve heard a lot of stories like this to do with learning disabled people making choices (usually from parents). It’s a tough one. I know, I KNOW, I KNOW that people should be able to make decisions about what they want to do. But LB will always choose to stay in his room hanging out “self occcupying” if he’s given that choice.

I think my struggle is around two overlapping things;

    1. LB isn’t making a decision in a vacuum; the choices offered, the way in which they’re presented in terms of the language used and the way it’s structured, the relationship between LB and the choice offerer, the implications of the decision made for that person, LB (and others) all feed into a complex set of interactions that can mean that the choice isn’t really a choice at all.
    2. There is a constraining kind of meta-level control always present which means that, ultimately, LB can only really decide what he’s allowed to decide. If he makes a decision that isn’t perceived to be in his best interests, the swat mental capacity team come in and stop him from making that decision.

So it’s a heavily managed and mediated, complex, uneven ‘choice’ space. I don’t know what the answer is really.  And I can’t see him ever emptying the dishwasher again.

Market life (2)

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Oh dear. Think I’d better apologise about my growing obsession with the framing, positioning and overlap of pitches, people and stuff at the weekly market.  ryan5-218 ryan5-217 ryan5-215

The Unit. Day 1

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Saddest time ever. But we keep telling ourselves it’s a necessary stage to help LB. He’s been sectioned now. Twice since yesterday evening. And was restrained in the night. On the plus side, we can visit between 10am – 8pm and it’s close. It’s easy to pop in for 10 minutes and the open door policy gives some confidence in how the staff are treating the patients.

It’s a building rather than a ‘ward’, designed in a circular shape so you can walk down the bedroom corridor, into the dining room through to the lounge and quiet room and round to the front door. Spacious, clinical, warm and clean. The staff don’t wear uniform and it wasn’t that clear at first who was staff and who was patient. Kind of hilarious.

The other four patients are youngish. We hung out in the lounge last night, waiting to get the OK to be there (after a bit of a mix up about ‘beds’). “Do you like fishing?” Rich asked one guy who was watching some fishing programme on the big TV. “Yeah, love it. I caught five fish!” “Cool! What kind of fish?” asked Rich. “Normal fish”, he said, cheerfully. Jenny* sat quietly chatting to herself about her trip to Londis the next day. She ignored LB when he asked her what she’d ‘got’.

Today our visits were about setting LB up with home comforts. I took in the rest of the coffee cake with a mobile DVD player and his Eddie Stobart box sets. He was pretty agitated when I got there and had a right old tough nut character watching his every move from his bedroom door. Tough Nut took me to the kitchen to get a knife to cut the cake. “They always find the first couple of days hard,” he said, kindly. LB ate the cake. His first food since he’d got there.

The second visit, with my newly appointed (she doesn’t know it yet) advocate Fran, was to drop off some more DVDs and money to buy snacks. He was calmer but sad. He wants to come home. He wants to go to Trax.

sackboy1The third visit with Rich was about pimping his room. A poster of the London Underground and Beatles album covers. He was asleep mostly, endured a bit of a cuddle and asked for  Series 2 to be put on his DVD player. He hadn’t touched his dinner.

So. A long day. And here’s to the Coffee Cake Fairy working a bit of magic. LB needs it.

*Pseudonym.

A different home

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Not sure how to introduce this, after the high of yesterday’s Charlie’s Angels post. So I’ll just say it:

LB’s now an inpatient in a local psychiatric learning disability unit.

Whoah. What? What? What? Whaaaaat?

I would be shrieking if I read this blog regularly and read such a random, unexpected development. Sorry for the rip roaring pace. But that’s how life rolls in the strange world of non-information, uncertainty and general crapness that is health and social care.

The story was left with LB heading off to town with Sue and Tina. And a new (non) school timetable. Through a series of texts and conversations with a good mate/little bird during a long meeting at work, I found about a learning disability/mental health unit, five minutes from our house. Fifty metres from LB’s psychiatrist’s office. Yep. In the three conversations I’ve had with her, in two of which I raised serious concerns about risk of harm to himself or others, she didn’t mention, reassuringly, that there was always the option of a proper inpatient assessment so close by. We thought there was only out of county provision but this is the case for under 18 year olds, not adults.

Hearing that the town trip with Sue and Tina was cut short through agitation it was obvious that LB was moving into a space that was becoming increasingly small. And pretty much unworkable. It was time to act.

There followed a (bizarre and surreal) process that led to a call around 7pm confirming he had a bed. It was time to pack his bag.

There aren’t any words to convey how this feels and I ain’t going to demean it by trying.

I hope he’s in the right place for him, and gets some proper help.

Home feels very different without him.

ryan5-137

Limits and horse-shite

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Well the light hearted, fun chit chat involving LB and his unusual take on the world, that partly inspired this blog, seems pretty distant now. I’m glad I captured some of it on these pages. It’s currently masked by reasonably regular extremes of behaviour that are unpredictable, aggressive and deeply upsetting. The trouble is, there isn’t any real (effective, valid, meaningful) support to deal with this.

I got a call at the beginning of a meeting in Manchester on Monday, after a Mother’s Day that included, in equal measure, horror and lovely, lovely love stuff. LB had had a serious meltdown? crisis? situation? at school. It sounded awful and his teachers and the school nurse were understandably shocked and upset by it. I could only say, standing in the corridor, trying not to cry with the futility of the situation, ‘I don’t know what to do’.

Cripes. Well who does know? Who should know?

Er, health professionals? Highly trained specialists who have the relevant knowledge to help LB and guide us through this.

No. Not really.

Trouble is, they won’t say that.There is a faux professionalism that involves sticking to a script that is irrelevant. Without that script there is nothing. LB’s unusual behaviour challenges, tests or confounds the boundaries of their knowledge. And this, in turn, is complicated by the resources available. This is not a comfortable situation for anyone, so we go through the motions in a performative way. Questions asked. Answers given. And they (pick your health professional) ease out of our home. No further forward. No change.

Tomorrow it’s the turn of the (learning disability service) psychologist, who was passed the baton by the (learning disability service) psychiatrist (who did nothing). Our GP embraced her contribution this afternoon in an obviously appalling situation.  I promised to be open-minded when I meet her.

“Can you prescribe something like a horse tranquilliser as well, maybe with a dart gun, for those particularly tricky moments?” I asked. “No,” he coughed, “this can’t be resolved through medication. LB needs help to learn strategies to manage his behaviour, aggression and anxiety. That is the role of the psychologist.”

“Ah, okeydokes,” I said, leaving his office, with my promise taking a hammering.

Strike a pose and the stool pic

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Through an increasingly common, though still unusual, turn of events facilitated by twitter*, I agreed to take some photos today at Turl Street Kitchen, a social enterprise cafe set up in Oxford, on the off chance they may be accepted for a piece about them in Vogue. HAHAHAHAHAHAHAHAHAHAHAHAHAHAHAAHAHAHAHAHAHAHAHAHA! Yes. Vogue. Stop laughing.

After a bit of a misunderstanding (I thought it was a group staff photo), I loitered there for 10 minutes this morning snapping customers, staff and space. The deadline was today, but as I was running a (slightly chaotic) focus group this afternoon, I didn’t get home till almost too late to look at the photos. There were a few quite goodish ones I hurriedly edited and sent to TSK. I got an email an hour later saying ‘lovely pics will get back to you in an hour’, then an email saying ‘they’re looking at the stool pic. Will keep you posted’.

O.M.G. They?? Vogue? Looking at my stool pic?????? Really??????

I looked at the stool pic I’d sent them. It was a bit fuzzy round the edges. I went back to the original photos. There was a much sharper photo I’d overlooked. A bit like I didn’t have enough shop vouchers at the end of the focus group earlier and wondered if I’d given someone two by mistake. It was tucked in among some paperwork. So careless.

I added the (heaps) better stool pic to my submission (is that the term?) but it was probably too late. I don’t suppose these big Vogue guns go back to look late entries. My almost hugely special-funtastic photographic moment dashed.

Finding the ‘missing’ voucher was important to the focus group participants though. Important to their sense of integrity. Much more so than a sharp photo of stools.

Vogue can wait.

*thanks to @abiccles for her thoughtful retweeting