The Unit. Day 5

LB seemed a bit odd when we visited. A mix of unusually cheerful and slightly different mannerisms. He was in his room where he spends his time when he’s not in the bath. His eyes seemed small and his face a bit puffy. I suppose he’s coming up to the best part of a week now without daylight or any exercise.

Rich tidied his room up while I drew him an Irish lorry from County Mayo.

“Where’s County Mayo Mum?”
“I dunno whereabouts it is. Hey, let’s look at the map K brought you and see.”


“Where’s your map, LB?”
“I threw it away Mum.”
“Eh??? Why did you throw it away?!”
“I threw it away Mum.”
“Oh. Did it get torn or something?”
“Yes Mum, it got torn.”

The Unit. Day 3

Went to visit LB this morning, after Sue and Tina called round in the mini bus with LB’s classmates. They’d brought a lovely card and flowers. Hilariously the kids pretty much ignored me but waved like crazy at Chunky Stan. LB was in the bath when I arrived, so I hung out in the lounge playing Candy Crush. It wasn’t so much about seeing him as knowing he was OK, letting him know I was around and, for me, being in the same space as him.

Various staff members stopped to chat and the other dudes hung out too. It was enormously peaceful. The odd offer of a drink. Lunchtime came and went, a communal eating of beans on toast. Some laughter and a sense of familiarity.

A staff member (JK) we hadn’t met before pitched up. He mentioned that LB’s dad had phoned the evening before but LB had said no to sharing his health information with him.

Screeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeching brakes.


Oh yes. LB had the right to say no. He also had the right to say no to visitors. We should ring so the staff can ask if he wants to see us. Ehhhhhhh??? He’ll never say yes to seeing me???? I make him fill the dishwasher????? The room started to spin a bit as the extremes to which this could be taken to started to sink in. JK said that if LB wanted to appeal against his section, they would support him. Oh boy. LB with rights. That was kind of hilarious. He is going to LOVE this. We talked through this a bit more, JK talking about various past experiences with patients. The room stopped spinning.

I left after 2 hours without seeing LB. He knew I was there but chose to stay in the bath. I rang the unit later to see how he was.

“He’s been fine all afternoon, totally absorbed in his map of Ireland that K gave him. He’s been tracing road routes along it.”
“That’s brilliant. I spoke to JK earlier about seeing if LB wanted to see us, which we’ll do in future. I just wanted to say thanks for letting me hang out so much there this week. It’s been so important to get a real feel for the place, see how everyone interacts and so on. I am so impressed by what I’ve seen.”
“That’s great and no problem at all,”
J replied cheerfully. “We’re here to support the families as well as the patients.

I’m off to have a piece of coffee cake now. And wait to be served the court documents.


A fledgling plan

Ok. I’ve been thinking about this for a while now. But only in short bursts. I thought if I start to document these thoughts, it may a) give me a kick up the backside to explore it more fully b) contribute to discussion/different ways of engaging with young learning disabled people and c) maybe get some tips, experiences and links.

So, LB is 18 in a few weeks. He is very funny, hard working and sensible (in an unusual way) with some serious interests around transport, recycling and justice. “Transition” so far has been pretty shite as I’ve documented. The future is not looking bright.

The facts as I’ve gleaned them (not easy); He has one more full year at school after this one. After that, he will be entitled to direct payments to create support for him.  What this means is not clear. There’s a chance of a further year at a local college to learn (more) life skills. Given that his sixth form are currently doing a cracking full on job of teaching life skills, I’m not sure that there is much point in an additional year. Well other than to occupy his time. After that, it’s day centres (shudder) or a life of being taken into town to go to the cinema, bowling or hanging out at home with a paid carer.

The fledgling plan..

To set up a small social enterprise scheme; get a loan, buy a small van, a mobile industrial shredder, employ a co-ordinator and run an odd job business. The odd jobbers. The idea is to draw on the strengths of LB and other young people and celebrate diversity/eccentricity. LB is an attention to detail kind of dude when pointed in the right direction and encouraged to stay there. Other young people I know have an infectious joy in meeting people (though not always joyful to their parents) and interacting, strength, humour, an ability to hang out cheerfully and other skills. The plan is to create a community presence where the odd jobbers become known about locally. People, and local businesses, enjoy the service they offer on a social, as well as financial, level. Driving round, collecting shredding, or bits for the dump, small deliveries and so on. Creating employment (for however many hours a week) and the associated benefits (productivity, achievement, activity, purpose, structure, pay and a social life) which is priceless.

There are enterprises that are doing similar type work across the country. I was pointed in the direction of Props who offer brilliant opportunities for young people in the Bristol area. But there are layers of hoops and bureaucracy to negotiate as local authorities interpret what direct payments can be spent on very differently. We had a taste of this when LB went on a “summer holiday” with a few other young men, funded through direct payments, only to come back with an extensive learning log. Oxfordshire county council insist learning outcomes are attached to funding. Props have had to create an accredited course for their enterprise. Choice and autonomy within a personalisation agenda? Forget it in practice.

These are early thoughts. It may be a vague, unattainable, undoable daydream. [Like my decluttering intentions..cough cough]. I’ve no idea how it could work in practice. But it feels better to think in terms of action. And involvement. Rather than just letting things pass by.

Choice and control

LB gets direct payments to cover the cost of four hours care a week. Direct payments were introduced to enable “service users” [people] to buy their own care support and services. It’s all about giving service users choice and control in creating a “care package” [support] that is tailored to their needs. So far so good…

The local “care provider” [company] that is somehow hooked into the local authority contacted me to say that LB was down on their list for a residential holiday.  When his case had gone to “panel” [no idea] a few months ago, his care package was increased to 4 hours a week plus a residential holiday. Oh. Ok. What kind of holiday? Five days at an activity centre in Swindon. I wrote the cheque.

Choice? Now that’s a funny one. Choice really means a choice of two or more things. If you’ve only got the choice of one thing and nothing, it ain’t really a choice. It’s a yes or no thank you. I’d already googled and failed to find any available holiday for LB, so, residential holiday in Swindon or no residential holiday? Yes please. But lets not pretend there’s a choice involved here.

The holiday starts today. The company have been in touch a few times about arrangements, LB turned down the meet and greet opportunity and he’s being picked up this afternoon. Between 1.30-3.30pm according to the paperwork. Then a call late yesterday afternoon;

“Hi Sara, just to let you know, I should be with you around 5pm tomorrow to pick up LB…”
5pm? Eh?  Why so late? What if we’d made plans? Why cut corners?
“Oh, great! Thanks!!! LB is really looking forward to it. See you then. Bye!!!”

Control? Not really. Not when you are handing over your dude to their care for four nights and five days. And what about LB? Does he have any choice in all of this? Not really. He’s been muttering but ain’t called in his legal team yet. I suspect he’s just hoping for a few Stobarts on the M4.


The holiday

“Hey, LB. (Social care agency) rang today…”
“Yes Mum.”
“They said they’ve got a great holiday you can go on in the Summer. Five days at an activity centre with a few young people.”
“No Mum. I don’t want to go Mum.”
“Ahh.. it will be fab. Loads of fun and activities. You love the holidays you go on with school…”
“Who is it with Mum?”
“(Social care agency).”
“No Mum. I don’t want to go Mum.”
“Why not?”
“It will just be misery Mum. It will just be a bucket of misery Mum.”
“Well, Sue from (social care agency) is coming round in a couple of weeks to tell us some more about it.”
“I don’t want to go Mum. It will be misery, Mum. I just like lorries Mum. Irish lorries Mum.”
“Well, let’s have a bit of a think about it when we meet up with Sue.”
“I don’t want to go Mum.”


Cripes. I didn’t anticipate this blog would become overtly political or polemic. Sorry. Though maybe it was just a matter of time. I’ll create a new category so fun-loving, chilled readers have the option of ignoring these more confrontational, thornier, issues.

So, what’s the story? Well, here’s the Daily Mail, and Guardian blog version of what happened this week. To summarise, three guys with learning disabilities were refused the opportunity of taking part in a karaoke evening in their local pub because one of them in particular, James, ‘shouted instead of singing’.  They had taken part in karaoke evenings for six months before the landlord changed and their involvement was blocked.  The new landlord sticks by his story that  his decision to exclude their participation relates to their (in)ability to sing, rather than their (dis)ability. Continue reading

A crazy-dude free world

Vince and Howard from the Mighty Boosh

Ok, here’s the rub. You’ve bought tickets to see a show in London (a costa-del-armandleg jobby).  Three rows in front, a young geezer does impressions of the gorilla, Bolo, from the Mighty Boosh in a very loud voice every few minutes*.  The person next to him makes a show of saying “Shhhhhhhhh”, but this is more to appease the increasingly irritated people around them, than any expectation that he’ll watch the show quietly.

So, should they leave so that everyone else rest can watch the show in peace?

Or should the audience relax their expectations? Continue reading

Taliban telecon

LB had a friend at school for a few years. Joe H. Joe H was outrageous in the best and worst senses of the word. He was a very funny guy. LB found him hilarious and talked a lot about shooting up in the playground and smoking weed with Joe H.  He left school last year and wanted to give LB his phone number but rules forbade this. Instead I had to write in the school diary to ask Joe’s mum to give me the number.

Continue reading

“Any minute now mum?”

We expected a BT engineer this afternoon as our phone and internet is broken. This had particular significance for Laughing boy because of his love of watching Eddie Stobart lorries, bus and cross channel ferry videos on youtube. I felt like shite and spent the day in bed but at 1pm LB came in and asked what time the engineer was coming. “Ah”, I replied, “Anytime now. They said between 1 and 6pm, so any minute now”. “Any minute now mum?” repeated LB, bouncing off happily.

Continue reading

21st birthday bundle

A few years ago, we were all invited to Danny’s 21st party. It was being held in a  big old pub in Hometowny and the party was in full swing when Richy Rich and I arrived with all the kids. As we walked through the lobby, a strapping young guy leapt on top of Richy and wrestled him to the ground in an arm lock. Me and the kids stepped over the pair of them and made our way to the bar.

“A pint of Carlsberg, pint of London Pride, four cokes and an orange juice, please”, I asked the girl serving behind the bar.

“I think he liked me”, said Richy, tucking his shirt back into his jeans, as he joined us at the bar. We made our way to a table near the disco.

Credits: Thanks to Mary (and Danny) for a great evening.  A sneaky ‘big up’ to My life My Choice..