An independently supported no life

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 Unit. Day 14

I spoke to the psychiatrist this morning and got a proper update at last. LB has been much calmer since the first week, is undergoing continuous assessment and they are hoping to adjust his environment, rather than change him, to reduce the triggers to his aggression and anxiety. They are planning for him to return to school (for his non-school based week) after Easter and are hoping that he will agree to stay at the Unit, informally, at the end of this section in a couple of weeks time. The core ingredient during this time will be information gathering, past and present, from his family, school and the unit team.

What.a.relief. That sounds a sensible plan. And she sounded lovely.

Ten minutes later, Rich asked if I’d looked at the photography book I’d got for Mother’s Day.

“Eh? What book??” I said, looking over at the shelf he was looking at. WOW!! I’d completely forgotten about it. Mother’s Day was obliterated this year, as I’d scuttled up to Manchester early to get away from a raging LB. A long nine days before he was admitted. “Fab! O.M.G. What day is it????”
“April 3rd. Wednesday.”
OMG!!  I’ve got my hot rock massage today at 10.30!!!! Gotta scoot.”
“So today’s all about you is it Mum?” chipped in Rosie, ‘working’ (Candy *cough* Crush) at the kitchen table.
“Yep, bloody right it is.”

The Unit. Day 6

Crawled back to bed this morning, exhausted, and was kind of slumbering when the phone rang. It was Vicki, LB’s teacher. Charlie’s Angels were going to visit him this afternoon and she’d just had a call from a nurse at the unit. Could they talk about LB returning to school?

WOW. WOW. WOW. Back to school????

The highs and lows of the last few weeks are indescribable. Three sections in as many minutes and now back to school??? Fanbloodytastic.  Vicki told the nurse a bit about LB when he was Laughing boy, before he became withdrawn, distressed and eventually aggressive. They’re going to discuss a return to school after Easter.

I rang the nurse. They’d had the team meeting yesterday, done their baseline assessment over the past five days and will now start to get to the root of the problem. In the meantime the team think he needs to get active again, rather lying around all day.

I’m beginning to seriously love that unit.

Time for me to crack on with work now. I’ve got some cakes to bake later. And a load of other stuff to catch up with. Happier times indeedy.


March 2012. In place of this year’s daffs.

“A degree of autism” and Dr X

I’ve talked about LB’s broader diagnostic journey before. Today I’ve been thinking about the way he has been put on (and off) the autism spectrum. I had a shufty through his medical records (a source of bafflement, frustration and ‘what the fuck?’ moments) and traced autism through the various reports.  So, starting when LB was a toddler;

He became quieter and happier when he spotted the wheels on my mobile chair, and spent 10 minutes pushing the chair backwards and forwards with his eyes fixed on the wheels. (Speech and Language therapist, August, 1996)

Classic, stereotypical autistic behaviour flagged up, but the word autism doesn’t appear till the following year in a letter from the GP to the paediatrician;

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