The walk and the talk

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

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 bath and the bell

One of my birthday presents was a bell so I could ring for ‘service’ (wine, newspaper, clean towel, etc)  when in the bath. I know. It’s a laugh riot in our gaff. On Sunday, LB was about to get in the bath when I realised the full potential of the new, shiny bell. LB loves baths but has quite a way to go to mastering effective tap control (heat and quantity). We run it for him and leave him to soak. Trouble is, it’s tricky to decipher general chatter from a help request (or outright alarm). This means he doesn’t get much privacy.  Dinging the bell could resolve this.

“So LB, if you want anything ding the bell. Like this…” DING!
“Yes Mum.”
“Ok? If the water gets too cold or you need anything, just ding.”
“Yes Mum.”
“Ok, I’m going in the other room.”
“Yes Mum.”
DING!
“Wow. That was quick. What do you want?”
“I love Irish lorries Mum.”

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Nothing short of a miracle…

“Mum?”
“Yep?”
“Can I have a bath Mum?”
“Yep. Course you can!”
“Mum?”
“Yep?”
“Can you find me some clean clothes to wear Mum?”
“Yep. Of course I can.”
“Thank you Mum.”

Unbelievable. In the best possible way.

Football club

“Hey LB! Did you go to football club after school?”
“Yes Mum.”
“What was it like?”
“Fine Mum.”
“Cool. Did you score any goals?”
“No Mum. I was the goalie Mum.”
“Very cool! Did you save lots of goals?”
“No Mum.”
“Oh, did you let many goals in?”
“Yes Mum.”
“Oh. How many did they score?”
“Hundreds Mum.”
“Oh. Never mind. Do you like playing football?”
“No Mum. Not really.”

The phone (2)

If we ask LB to get the phone, he usually shouts at it “Whatdoyouwant???” until it stops ringing. Tonight was progress. With a big fat P.

“LB! Get the phone!”
“Who me Mum?”
“Yes, quick!”
“Do I have to Mum?”
“Yes, quick before it stops ringing.”
“BLOODY PHONE. I hate it.”
“Just do it.”
“HELLO! HELLO! WHAT.DO.YOU.WANT??”
“Who is it?”
WHATEVER!
“Who was it LB?”
“Recorded message Mum.”

LB and the coffee morning

“Hey, you going to the coffee morning again tomorrow LB?”
“Yes Mum.”
“Where’s it held?”
“In the church Mum.”
“Wow. Do you meet people there?”
“Yes Mum.”
“Who do you meet there?”
“Old people Mum.”
“Oh. Do you know any of their names?”
“Barbara Mum. And the other old people.”
“That’s nice. Do you talk to them?”
“Yes Mum.”
“What do you talk about?”
“Old people stuff Mum.”
“What’s old people stuff? Tell me something you talk about?”
“Getting older Mum.”

The why? question

LB has become adept at answering most questions “Yes“, “No“, “Don’t know” or “All of them” in typical teenager fashion. We’ve been pushing him on this recently (not least because it’s pretty boring).

This morning (as with so, so many mornings);

“Mum? I love lorries Mum.”
“I know.”
“Mum? I love lorries Mum…”

Usually at this point I say “I know LB. Do you know how I know?
And he answers “Because I’ve told you 25,000 times, Mum.

This morning I mixed it up a bit;

“Mum? I love lorries Mum.”
“I know.”
“Mum? I love lorries Mum…”

“Why do you love them?”
“Dunno Mum.”
“No, think of why you love them.”
“Dunno Mum.”
“C’mon LB. Try to explain to me why you love lorries.”
“Because. Because…… Because of me, Mum.”

Love him.

The adult service

Realised I’d double booked myself for this Friday and had to cancel a visit from LB’s new social worker. The adult social worker. I then realised that a) I didn’t know her name and b) I didn’t have any contact details for her. Other than ‘ASW, Friday morning’. “Hey, crap bollock”, I hear some of you shout, “Why didn’t you write down the details at the time?”

I dunno. But I’m not sure it’s my responsibility to fact find in this situation.

When I met ASW, with LB’s current social worker, a few weeks ago, it was a pretty underwhelming situation. Chittering on, as I filled the kettle, I lightheartedly mentioned that LB said he didn’t want to meet her.

“Well,” she said, bristling, “I am his future.”

We sat at the table for ten minutes, having a forgettable chat (well apart from the bit where she defended A4E’s performance in the local authority). And made an appointment for Friday. I’m not sure what the point of the last meeting was, or this one because nothing is made clear. But I obviously needed to reschedule.

I emailed LB’s existing social worker. Asking for ASW’s contact details (and whether  she remembered her saying she was his future). I got an email back, ignoring my second question but stating the following;

  • Adult care manager is ASW, you can email her on xxxx. She will be his care manager when he transfers to the adult service. Once his care package is up and running she will then close to her. However he will remain open to the learning disability team. If you require further support after the closure to ASW then you just contact the team and they will re refer you to a care manager that is more than likely be ASW.

Eh? Sorry, but what does any of this mean? Is this social care speak? Are there some missing words? What does ‘close to her’ mean? And ‘open to the learning disability team’? What does that mean??? And why all the jiggerypokery if the outcome ‘more than likely’ is  always going to be ASW? What does any of it mean???

And why are you emailing me this crapshite piece of opaque, insider, meaningless jargon when I’m terrified enough about what the future will be like for LB?

Shunned

“Who did you share a room with LB?”
“Nicky.”
“Ah. Did you get on with him?”
“No Mum.”
“Why not?”
“He was very loud Mum. He scared me.”
“What do you mean? How did he scare you?”
“He told me to stop talking Mum.”
“Ah. Was this at night time?”
“Yes Mum.”
“Well you know you can’t chatter on all night when you’re sharing a room, don’t you?”
“He shoved me Mum.”
“Shoved you? Whaddaya mean?!”
“SHUNNED ME Mum, HE.SHUNNED.ME.”
“Wow. Why’d he do that?”
“Dunno Mum.”
“Did you talk to him?”
“Yes Mum.”
“What did you say to him?”
“‘Do you like lorries?’ Mum.”
“Ah. What did he say?”
“No Mum.”