Tag Archives: laughing boy

Hauntings

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Memories of going to Manchester with Rich and Tom in October the year Connor died. Visiting Rosie doing her maths degree. Who looked after Chunky Stan and Bess? Coming across a Goldfrapp installation at the Lowry Gallery. A song named Ulla. A mate who joyfully snaps at my heels while offering so much love. And a beautiful goddaughter.

A performance of Fiddler on the Roof was also on that day. Paul Michael Glaser, my first love (with Doyle from The Professionals who I thought was Blake in Blake’s 7). We were under the same roof as Starsky.

Tom spent a night with Rosie at her student home. We were in a budget hotel that made the most of every space including multi coloured fairy lights around the toilet area. Failing on cellophane wrapped shite for breakfast. A big name was playing at the Manchester Arena that night. Billy Joel. Another childhood figure. So many excited punters, a year or so before Ariana.

Four years later. Yep, four years… The Oxford Road GMC hearing into whether Connor’s irresponsible consultant was fit to practise. [Obviously not.] Rosie turned up at the drop of a strangled phone call the night before to sit with Rich and Charlotte Haworth Hird who represented us at Connor’s inquest in the public section. She came out of friendship.

I shared details of the Kimpton Hotel yesterday with attendees of a workshop we’re holding today and tomorrow to pore over the findings of a research project exploring the experiences of making a referral to a fitness to practise hearing. The Witness to Harm project. The GMC put us up at the Kimpton the night before I gave evidence. Only to be taken apart by a barrister who had lost any sense of human and a panel that looked the other way. A posh hotel for a subsequent breakdown.

Ten years on and the slow wheels keep turning.

Memory sticks

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Slow, slow countdown to July 4. Year seven.

Back in the day I wrote raw, fuck you accounts of grief. Real time, incoherent pain accounting. Trying to translate the unimaginable, unspeakable, incomprehensible into words. Into some sort of coherence.

Writing grief.

Seven years on it feels more like shades of a shipping forecast.

Lighter impact. in terms of dominating everyday life, tasks, being and doing.

Timing. winding and wounding moments, longer spaces between.

Emotional state. tears. water. drowning. sadness.

June 18 and my eyes (heart) have started the random, now familiar, tear filling gig. Working from home/Zoom meetings offer unexpectedly novel passing options. The immediacy of being able to delay joining meetings for a few moments. Of not turning on the camera.

longer spaces between.

I’ve taken to decanting the content of old memory sticks onto google drive. Memory sticks. Tumbling into particular date space clusters: presentations, photos and files. Recalling a conference or ten with seventeen hundred versions of a mediocre paper and flight details. Interspersed with detritus from the last seven years. Screen grabs, documents, reports and more, laying bare the outlandish and unspeakable. Snippets of horror and the inhumane.

Then every so often a photo pauses time.

Thinking photography

Post-death, photos demand forensic scrutiny. The whole shebang followed by a meticulous poring over the minutiae. The cast, the setting, the props, the clothes. The weather, the light. Faces, emotions, action and more. My eyes repeatedly drawn back to Connor. Sit kneeling in that funky way he did. Slightly disconnected from engaging with whatever is capturing the attention of his classmates off camera.

I sit and imagine him going back to his class, eventually getting his book bag, a mini bus journey taking a good 40-50 minutes to travel the 6 miles home and late afternoon/evening unfolding in familiar, unseen, unremarkable ways.

When you have a finite time with your child, each piece of stuff – photo, anecdote, a piece of school work, school diary entry, painting – becomes something so much more than it ever was in the moment. The dustings of unfolding life tend to be lost in the complacency of an imagined forever.

I’ll take shipping forecast grief. And a focus on the good times. Beautiful, beautiful, cheeky chappy.

An independently supported no life

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Full weight of mental health/learning disability bureaucracy/uncertainty yesterday, with LB’s CPA (Care Plan Approach) meeting. Anxiety was compounded by the rumour (don’t ask) that a CPA meeting was linked to discharge. Eh? Discharge? After the effective deskilling implications of the “choice” agenda for both him and us over the past months?

Adding to the general mix of uncertainty, on Sunday we went to London (one of LB’s fave and regular, pre-unit, activities), organised optimistically with thoughts of his possible impeding discharge in mind. After a good day hanging out, he punched himself so badly in the face on the motorway home that his nose didn’t stop bleeding for nearly 20 minutes.

Discharge seemed to be the implicit focus of the meeting based on the fact there is little more to be gained from his stay there. If there are no answers emerging through this process, who do we turn to? Er. Mmm. Good question. I suspect the answer to this, for the health and social care world, is twofold; 1. More drugs. 2. Some ‘independent supported living’ gig in which LB watches tv and YouTube all day while underpaid and untrained staff scratch their arses. A type of drugged up independently supported no life.

Anyway. Back to the CPA. Jan Sunman from Oxfordshire Family Support Network, with the support of Fran Steep, introduced a person centred dimension to the meeting. With varying levels of engagement and resistance. This disrupted proceedings healthily, making visible rigidity and entrenched expectations. It also enabled us to move beyond a 20th century medical model of learning disability and look at LB as an individual and not a set of behaviours. LB pitched up and made a contribution, muttering under his breath ‘this is bollocks’. Love him.

Anyway. There was no discharge date. Well not one we know of. Instead his activity level is to be increased, including some chores, to bring him back to a level where he’s able to do more than watch the tv all day. In the meantime, we will grub around trying to find some meaningful support. It shouldn’t be this hard.

The walk and the talk

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Yesterday I got home about 7pm. I rang the unit to ask if LB wanted me to visit that evening or today. I don’t feel I have to see him every day, but I like him to know that we’re around.

The staff passed LB the phone and I asked him the question.

“Today“, he said, straightaway.
“Are you sure?” I asked,one eye on a bottle of wine chilling in the fridge.
“Today, Mum, today“, was the firm answer.

When I turned up at the unit, the staff were surprised to see me. He’d given the phone back to them and said I wasn’t coming. Funny. Or is it?

The unit team have produced a communication care plan for LB which is stuck on his bedroom wall. The first objective is;

  • The family need to phone if they want to come. If LB doesn’t want them to come, staff to suggest to try again on a different day.

Mmmm.

The Department of Health only days ago published a joint statement with various partners about post-Winterbourne care for learning disabled people, which included a recognition of the learning disabled people in other NHS-funded hospital care. A commitment was made in the Winterbourne View concordat “to ensure that by 1 June they will all have had their care reviewed and a personal care plan developed, built around their particular needs, taking into account the views of their family carers”. [italics added]

Now, these things (as usual) ain’t rocket science, but I would have thought LB’s communication care plan could have started with any one of a billion objectives that would support and facilitate his communication with others. Starting with this one is kind of problematic to me, as it sets us up as a problem, or an obstruction to LB’s development. An issue that emerged in the very early unit days.  Given that only a few months ago, LB was a typical teenager, living with his family, I’m not sure what sense he makes of it, which may be why he told the staff I wasn’t coming, having told me I should. The communication plan is on fire, clearly.

But then, as with most of these things, there is a helluva lot of talking the talk, but little walking the walk. It doesn’t matter what grand statements are made at the top, if they ain’t going to translate into practice. And the irony is, I/we/carers are forced to become ‘problematic’ to try to get some walking done.

Choice anyone?

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Knowledge sources

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I had a call yesterday from the person running a specialist arm of a charity providing educational support to young learning disabled people/children. A care provider basically. I was put in touch with her through a mate, who met her in connection with her daughter’s transition to adulthood.  My mate rang me to say that this woman was one to speak to about LB. The subtext in this exchange is that there are a lot of people it ain’t worth speaking to. Something I think most parents of disabled children learn sooner or later.

At the time of the call, I was at a local retreat where we go for concentrated writing days a couple of times a year. The woman’s matter of fact summation of our situation contrasted with the scenery and sunshine. She reflected on how odd it was that various things hadn’t happened all those weeks ago; before we were ‘driven to such an extreme measure as admitting LB to the unit’.

Whoah.

That is an extreme measure. I almost forget the brutality of it. And here we are 80 days later, nearly a quarter of LB’s 18th year spent in hospital. Kind of beyond extreme really. This so should not have happened.

Specialist woman zoomed into action over the phone and made a plan to plan a possible programme to support LB’s return to school. Depending on funding of course. Cough cough. She was definitely one to speak to. But then she would be if she was recommended by a mate. Someone with personal experience of the gig. That’s the way it works.

If we’re going to talk about hierarchies of knowledge, my money is on the mate/mother network every time. Efficient, effective and it don’t cost a penny.

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The Unit. Day 78

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I was away for five days last week. It seemed kind of good timing as LB was a lot more like his old self. I was at the Nordic Network of Disability Research (NNDR) conference in Finland where several papers were about choice, autonomy and learning disabled people.

Rich took my mum and Owen to see LB while I was away. He was fairly disengaged and not doing much. Going to see him yesterday evening, after this break, was pretty disheartening. It made me want to toss the whole choice/autonomy agenda in the nearest skip.

His anxiety levels/aggression and hostility have seemingly reduced. Fab.  At the same time, he basically spends every day watching DVDs. Unless there is the option of a trump card outing, a ‘b’ card; burger or bus museum. This is in contrast to his school timetable a few months ago.

We’ve consistently said/thought/believed/argued that LB, and dudes like him, should lead a productive life. [I’m seriously boring myself now saying this over and over again with no sniff of a productive life anywhere in sight round this way, but I refuse to give it up]. Outside of some small and hugely oversubscribed/or hidden away pockets of brilliance, there ain’t much substantive choice for young learning disabled people. Especially with current cuts and welfare reform.

Call me a crappily cynical old baglet (yep, please do, because I’d love to be proved wrong), but it strikes me that the ‘choice/autonomy’ agenda is a bit of a cheap and effective tool really. It doesn’t cost much to ‘choose’ to watch DVDs all day, with an occasional ‘b’ outing. The long term implications (outside of cost – health, social, emotional and political) of people leading lives like this are too enormous to even begin to wince at.

One of the presentations at NNDR (twitter feed #nndr2013), was by Alan Roulstone who talked about choice, autonomy, community and  risk. One of his conclusions was the importance of engaging with a “realism that never lets go of ambition” and “ambition that never lets go of realism”.  He was weighing up risk and vulnerability in terms of hate/mate/(and general neglect) crime, but I wonder if his focus on ambition is a bit ambitious in reality [sorry]. Ambition, for learning disabled people, is a bit of a stretch. And way too pricey.

There is a new realism for LB though. About doing very little with very little expected.

The Unit. Day 71

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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. 🙂

 

Choice and enthusiasm

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Beginning to find our way around this choice issue with LB at last. Or just picking up the techniques we used for years before ‘choices’ were relayed through and monitored by a third person.  Yesterday I rang the unit and asked if LB wanted to go out somewhere today. Yes. Good.

This morning, after much thought and discussion with Rich about where to take him (we don’t want to go too far down the route of endless treats and no sniff of dishwasher-land), we agreed the bus museum would be a good plan. A ‘bus museum plus’ plan. A pleasure and pain model.

I picked him up from the unit at 12.

“Where do you want to go then LB?”
“Bus museum.”
“Ok. We’ll go to the bus museum. And then we’ll go to Sainsbury’s after to do the shopping.”
“Sainsbury’s after?”
“Yep. Bus museum followed by Sainsbury’s shopping.” End of.

Nearly four hours of watching mechanics and enthusiasts in action, with a vintage bus ride thrown in. And then a packed Sainsbury’s at closing time. All done joyously.

Don’t you just love buses?

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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 ?

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