Tag Archives: laughing boy

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

Carers Assessment? No. Groundhog day

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This weekend is officially a catch up weekend. Beyond boring but necessary. I started this afternoon with a mountain of paperwork and a canny system of ‘bin it’, ‘deal with it’, ‘park it’. The ‘deal with it’ pile had the carers assessment form on the top. Oh dear. Regular readers will know that this (mythical???) assessment has been dragging on for years. The form in front of me was different to the version I failed to fill in before (because it was beyond inadequate). I sat at the kitchen table, determined to fill it in.

So ‘caring’ is divided into ‘practical tasks’, ‘personal tasks’, ‘mobility’, ‘getting around’, ‘health’, ‘communication’ and ‘other issues’ (including mood swings, anxiety, aggression and so on). Each section includes a list of things to tick (‘communication’ has support with socialising, advocating, and interpreting) and a section for ‘carer’s views’. I ticked all the relevant boxes (most of em) but wasn’t sure where to start with my views. What does it mean?

“I’d hoped LB would be able to go out and about by himself but now, but suspect he ain’t gonna be able to do that for the forseeable future.”

“I find it pretty rubbish supervising an 18 year old boy in the bath.”

“It’s all pretty fucking shit really but it could be so much better if I knew that adult services wasn’t a big hole of crap-all.”

Anyway, I left the ‘carer’s views’ sections and got to the end of the form. Only to find this little beauty:

This form is the first part of a Carer’s Needs Assessment. Would you like a full carer’s assessment to be undertaken?  Yes?  No?

Now I don’t know who is coming up with this crap, and I don’t know what the intention is behind it. It’s obstructive, ill thought out, insensitive, meaningless and time consuming. I don’t know how many meetings I’ve attended thinking I’m ‘doing’ a carers assessment. Or having a carers assessment done to me.

When I started sorting through paperwork today, I was struck by how LB had his own folder of paperwork bursting at the seams. No one else in the family has a file really. Just general stuff. Why is there so much paperwork around certain children/adults when the outcome is less than acceptable? A ‘special needs industry’ exists in the UK with a wasteful, usually ineffectual and pointless focus. But embedded within that industry is a level of tyranny. That these are hoops that parents, carers and disabled people have to jump through. Regardless of outcome.

Over 15 years into this gig now, I’m going to say now, I seriously hate it.

Can we have  transparency, honesty and realism about what is what? And what is likely to be what in the future?

Cousin Dave

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“LB, why did you shove Henri at school today?”
“He stole my cousin’s toolbox.”
“Which cousin?”
“My cousin Dave.”
“You ain’t got a cousin Dave.”
“Oh.”

The school play

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LB, Rich and I went to watch Tom in his school’s production of The Wizard of Oz. It was deliciously brilliant and the hours and hours of practice the cast had put in shone through. LB started muttering to himself about 50 minutes in. Stamping on the floor of the tiered seating. People started surreptitiously looking. Curious.

Disruption of public space has long been an interest of mine. Through years of experience and studying it. How much ‘disruption’ is acceptable and why? In what contexts? My bar is set fairly low so I didn’t mind LB chittering on too much. Either people accept unusual behaviour in public, or certain people who can’t conform to (often spurious) normative standards can’t join in. Uncomfortable discussions around ‘what about people who buy expensive opera tickets and expect to be able to watch it without disruption?’ (as Len Davis once discussed at a memorable keynote talk) weren’t relevant here. I thought.

It got hotter and hotter in the hall and LB got increasingly agitated. Clenching his whole body and shuddering.

“WHAT.EVER!” he finally shouted out when the Good Witch told Dorothy to follow the yellow brick road.

“I’d better take him out,” whispered Rich, who was sitting nearest the aisle.
“Let’s wait and see,” I said. “It must be the interval soon…”

The songs continued, the heat rose and LB was tipping into full blown agitation gesticulating at the ceiling, bouncing on his seat and full body clenching. It was time to go. Rich manoeuvred him out and took him home, after a teacher brought him some water. He did well really at keeping a lid on it.

I stayed for the second half. Enjoying watching Tom and his mates singing, acting and dancing their socks off. With niggles about what had happened. The enjoyment was great.  The niggles were a bit more complicated. It’s upsetting having that kind of experience. For all sorts of reasons. There are going to be enduring tensions between us (and others) making LB do (some) ‘typical’ things that he doesn’t want to do. Sometimes these things will be necessary, sometimes because we want him to.  He should have been able to sit through the performance, as he sits through other things he enjoys. I was reminded of a friend’s husband saying to her in frustration “When are you going to realise our lives are less than straightforward?” after their son, one of LB’s classmates, had to leave a candlelight carol service at Christchurch College after repeatedly trying to blow the candles out.

I  think LB (and other dudes) should be able to attend events with a leniency allowance. They may not sit quietly for the duration. LB gets very involved in things and the audience could suck it up really… within reason. And they seemed to in this context. In the interval and later people (friends, parents and teachers) asked after LB with genuine concern/interest without being intrusive.  But there were the performers to consider here, too. A dose of ‘heckling-type’ behaviour could throw ’em right off track. Which ain’t ideal.

I collected Tom at the end of the show. A mix of excitement, exhaustion and smudged face paint.

“When did dad and LB leave?” he asked.

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.”

Football club

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“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)

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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.”

Scrap metal

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This week, LB shifted his attention to scrap metal. A break from Irish lorries but with worse sound effects on youtube. He also came back from his dad’s with a toolkit containing a hammer and screwdriver.

Last night, there was a terrible crashing noise upstairs. He’d put his die cast models (some limited edition) in a pile and was hammering the screwdriver into them.

“Whoa! Stoppit LB! What are you doing?????”
“Making scrap metal Mum.”
“Well you gotta stoppit matey. Now!”
“Why Mum?”
“Because I said so! You’ll ruin them!”

“Blimey,” I said to Rich, sitting back downstairs, “Model enthusiasts would be weeping if they saw that…”

Then I started wondering why he should stop bashing them.

LB and the coffee morning

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“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.”

Doc-advisor

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There was an article in yesterday’s Observer reporting on a survey showing that Brits are less likely to ‘rate their doctor’ online than restaurants or holidays. Parking any engagement with the quality of the study (because it’s late), the article underlined the importance of patient feedback in informing change in the NHS and suggested people were wary because they thought nothing would change, the NHS didn’t care, they would get staff into trouble or their care would be affected.

Today I dutifully logged on to NHS Choices to rate my GP. I completed the boxes and fed back. I then read the other five comments about my surgery. An anonymous poster recommended the surgery two years ago, but complained about the leaking roof. One person complained about the lack of continuity of care. Two other very recent posters raised the same issue I’d outlined in my previous post. The sixth person, anonymous in June, wrote an essay about the wondrous care they’d received over the last 15 years. Here is an extract;

I really can’t think of how they could improve it. I marvel at how well-run it is, and how intelligent and knowledgeable the doctors are, and how kind and responsive the other staff are. When I was very ill at home once, they sent round a community nurse every day, and doctors visited me at home and phoned me several times. On another occasion I failed to respond to a letter asking me to make an appointment because of some blood test results, and the doctor personally visited my home and left a handwritten note, they were so concerned. 

Whoa. We’ve been at the practice for 15 years too and haven’t had a sniff of this uber-service. I want to know more. How do you access this level of healthcare? Marvel at how well-run it is?? A handwritten, hand posted note after failing to respond to something?  Responsive staff? Home visits? Concern???? This patient’s 15 year period spans the entire roller coaster experience of LB’s diagnoses and everything that came with that (too laborious and lengthy to even start recounting).  Where was the GP in all of that?

*tumbleweed*

I can only hope this feedback is a plant… Ironically.