Tag Archives: family

The Unit. Day 12

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After a visit on Friday in which LB was bright, engaged and active, the weekend has been about sedation. How much and how often, we have no idea. We can only go on what we see when we visit. Yesterday, drowsy, laying in bed, looking lost, LB asked when he was coming home. And said little else. Today he didn’t say anything. He lay in bed, blinking and looking blank.

Incarceration, a lack of professional attention because of the ‘holiday weekend’, and a continuing information black-out for his family. I’m not sure how we’ll respond when we next get told about  his ‘rights’.

This ain’t right.

The Unit. Day 4

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After feeling strangely heartened by the reminder that LB had rights, I began to reflect on what this meant in practice.  Who would/should safeguard those rights? He said no to an advocate when he was sectioned, but he doesn’t really know what an advocate is. He’s been in the unit for four days now with rotating staff. What they know about LB you could write on a postage stamp. We’ve hung out with the dude for 18 years and loved the socks off him. If anyone has his best interests at heart, I’d say we probably coast it. I get the arguments about the constraints and limitations parents (particularly mothers ‘cough cough’) can place on disabled kids through an overly developed sense of protection. But I also know how vulnerable these dudes are.

We rang the unit at lunchtime to see how he was. The  phone was passed straight to LB. I just wanted to know if he was OK and having a grunt from him wasn’t really going to answer that. I had a quick chat (not really the right word for a largely one-sided conversation) and asked him to pass the phone back to the nurse.

“We’ll visit this afternoon around 4ish if that’s OK. His sister will be back from university. We’ll ring before we come.”

“Great.”

Later that afternoon I rang. The phone was dead. Oh. Luckily, I’d been given a second unofficial number by someone who recognised how distressing this was for families. That number was eventually answered and with some resistance (all of a sudden bedtime routines happened straight after dinner thereby interfering with visiting hours), we were able to visit.

LB was in his room and seemed pleased with his cakes and bus magazines. We hung out for a bit, and, when we left saw some of the other patients. As usual, they were chilled and said hello.

We haven’t seen any other visitors all week. Despite the extensive visiting hours pinned on the front door, there are no visitor type concessions, like a vending machine, or waiting area. I don’t know if there is an assumption that people won’t visit or that visitors will cause disruption. Or maybe the other patients have exercised their rights and refused visitors. From the interactions I’ve had with them over the last few days, I find that unlikely. It seems desperately sad if there ain’t any. But I can kind of see how it could happen.

The maybe pile

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11.06pm. Wednesday night.

“Mum? Mum?!!! Where’s my Hornby book Mum?!!!”
“Er, which book?”
“The Hornby book Mum. About trains Mum.”
“Mmm. Dunno. Do you need it now? It’s getting late.”
“Yes, Mum. Where is it Mum?”
“I dunno. I’ll come and have a look in your room.”
“Yes Mum.”
… “Mmm. Can’t see it. How about Horrible Histories?”
“No Mum.”
“Victorian London?”
“No Mum.”
“Eddie Stobart: the Story?”
“Maybe Mum.”
“Ok. I’ll start a maybe pile. How about Cars: The Cowley Story?”
“Maybe Mum.”
“Alex Rider graphic novel?”
“Maybe not Mum.”
“Bus magazine?”
“No Mum.”
“The Oxford Bus Museum booklet?”
“Maybe Mum.”
[…..]
“Well there’s quite a few books in the maybe pile now. Which one do you want to read?”
“The Hornby book Mum.”

The Stranger

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I stopped LB happily mending the downstairs toilet this morning, once it started leaking. He went apeshit. With a spanner in his hand. The language was dripping with expletives and the toilet seat took a hammering. With his head. He stormed passed me and went upstairs. I hung up some shirts in the wardrobe and the rail fell down. The rage continued upstairs, directed at me. I put my keys in my pocket and hovered near the front door. Billy Joel’s The Stranger came on the radio.

Yep, I thought. That just about sums it up.

The bath and the bell

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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.”

ryan5-45

Nothing short of a miracle…

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“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.

Monitor, distract (and Chunky Stan)

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Brief summary. LB’s become very anxious, constantly agitated and out of sorts over the past couple of months. He’s developed a fear or phobia of someone harming him.  His teacher/school nurse have suggested he be referred to mental health services which we’ve resisted. First, because we feel the medicalisation of these dude kids is a bit too free and easy (and can be damaging), and second, because previous encounters with mental health services have been pretty pointless (along the lines of “Er, have you thought of using star charts?”)

ryan5-25Then the Christmas tree fell over. Probably because all the baubles had been put on the same branch during a bun fight deccy situation. ‘Mmm’.. I thought. ‘This don’t bode well’….

Christmas morning, LB lost it over a tiny thing and had a distressing episode (? breakdown? frenzy? malange? Slinky malinky?) Not sure what language there is to describe this sort of thing, other than crap, meaningless jargony social care/health type stuff). But horrible. For everyone. Especially so at Christmas.  He stayed home, rather than going to his dad’s, and we swung into a ‘monitor and distract’ routine. For those of you who haven’t come across this (you lucky bastards), it goes like this;

    1. Constantly listen and look for any signs of mounting distress (in LB’s case, talk of being attacked, gesticulating and gurning).
    2. Act instantly to stop these (in LB’s case, through a firm ‘Stop it now’).
    3. Follow this up with a distraction (in LB’s case, an Eddie Stobart book, Mighty Boosh DVD, drawing cartoon figures).
    4. If necessary, follow this up with an uber distraction (in LB’s case, a very long, hot bath).
    5. Revert to A.

ryan5-23So 48 hours of monitoring and distraction was successful but relentless, wearing and, again, pretty shite over Christmas. We also weren’t confident of containing his distress anywhere other than home. I called the GP who suggested a type of prozac. And some emergency tranquillisers to use, if necessary, until the medication started to work.

That was yesterday morning. Last night (after step D) LB turned into a bit of a chill pill. We stayed up watching documentaries like Cop Squad with him. Enjoying the peace.

A mistake of course. Other family members also need monitoring. Like cheeky Chunky Stan.

ryan5-24

Baby Jesus in the walnut

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“Come on everyone! Time to decorate the tree…!!”
“SHUT UP!!”
“Eh? LB come and decorate the tree NOW.”
“Mum. Can I go back on Youtube after Mum?”
“Yep…”
“I don’t think it’s straight. Is it straight?”
“It’s straight…”
“I think it’s leaning to one side. Look…”
“It’s straight...”
“Rosie could always go upstairs and get her protractor…”
“Mum you don’t know what a protractor is, do you.”
“Yes, I do.”
“I’m going to look for the baby Jesus in the walnut. The one I made at nursery.”
“Watch that angel, the head fell off remember…”
“I’m going to put this one round here on this branch…”
“Grrrrr… I’d forgotten how much Tom talks…”
“And this one can go here…”
“Tom you don’t.need.to.narrate.your.life.”
“LB put the bubble wrap down and get some decs on the tree.”
“Yes Muvvar.”
“Hey! I found the walnut!!!…Oh wait. It’s awful.
“Hahaha!!!”
“I remember it being much better than that. I thought it had a proper face and everything. Look it’s just got two dots for eyes…Felt tip dots??”
“HAHAHAHA!!! It’s really rubbish!!!”
“DON’T PISS AROUND WITH THE TREE!!!”
“Hahahahahahahaha!!!”
“I’d forgotten how stressful decorating the tree is.”
“I still don’t think it’s straight.”

ryan5-2

Crispy duck, buses and Tulisa

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LB’s 18th birthday. As usual, he only wanted to open one present. The thing he’d asked for (little mechanic/bus guys). Then off to London for crispy duck in Chinatown. The trip involved a bus journey, a walk from Baker Street to Chinatown and a constant backdrop of London buses (and statements.)

“Mum. I wish I was a Londoner Mum..” “Mum. I wish I was a Londoner Mum..” “Mum. I wish I was a Londoner Mum..”…. “Mum. I wish I was a Londoner Mum..”
Then out of the blue, crossing Oxford Street, “MUM. WHERE’S ROSIE MUM?”

Wow! How cool is that??? (First time he’s asked since she started university over a year ago). I said we’d skype her when we got home.

The food was good and then it was back to Marble Arch to wait for the bus home. Big Bus Tour buses stopped at the same stop which was great. An added layer of deliciousness for the birthday boy.

After we’d been home a while, I found LB sitting in the kitchen on his own. He was waiting to skype Rosie. Sob.

Later, after a big fun filled skype session with everyone pitching in, we all (apart from Rosie) sat squashed on the settee, with crisps and pop, watching X Factor. LB loves Tulisa. She’s a Londoner.

“Mum, I wish Tulisa was my sister Mum.”
“Eh?”
“I wish Tulisa was my sister.”

The phone (2)

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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.”