“Must admit, I’m not a great dog lover, me. And you get them…they kind of come up to me and sniff me knees. You know what I mean? They sniff me knees, but once one dog’s sniffed me knees, other dogs can smell that dog on my overalls and they all want to sniff me knees. I got a cat at home. That probably doesn’t help either, as the dogs can probably smell the cat too. So I tend to shoo em away, like. You know, shake me legs a bit. But one man got a bit uppity when I did that. He was like “My dog wouldn’t hurt anyone!”, but these days, you don’t really know that. A lot of dogs that shouldn’t hurt people do hurt them. So I try to keep away from them… Yeah.. Just the one sugar thank you.”
“Come on everyone! Time to decorate the tree…!!”
“Eh? LB come and decorate the tree NOW.”
“Mum. Can I go back on Youtube after Mum?”
“I don’t think it’s straight. Is it straight?”
“I think it’s leaning to one side. Look…”
“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.”
“Hey! I found the walnut!!!…Oh wait. It’s awful.
“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!!!”
“I’d forgotten how stressful decorating the tree is.”
“I still don’t think it’s straight.”
Not a good day for LB related reasons. But caught the 280 home from work and had the following encounter with a geezer dude. Kind of cheering…
“I went to Smithers ya’know? Smithers?”
“Ah, yeah.. W.H.Smiths…”
“Yeah. I picked up a newspaper, tucked it under my arm. £2.60 it was. £2.60. I thought I’m gonna walk out with this. Without paying like.”
“Yeah. But then I saw the man with sweets and I thought YES! I want some sweets! So I got some and thought well I’ll pay for the sweets but then walk out with the paper under my arm… You know, as if I’d already paid for it…? But then I thought Don’t.be.so.childish. Do you know what I mean??? So I paid for the paper too.”
“Do you want a sweet? There’s jelly beans and all sorts…”
“Nah, I’m fine thanks…”
“Ahhhh. Fuck!! Dropped em! [….] I’m just gonna eat them anyway. Well these ones. Not that one. Look. It’s rolled in some squishy stuff. Yuk. Look at it.. I’ll eat these though. I love jelly beans.”
“Yeah, me too…”
“Funny. Jelly beans still taste good, but other sweets from when I was a kid. They just don’t taste so good now. They put other stuff in them I think. Not nice. When I was a kid, I’d eat some sweets then do twenty laps of the room. Like round and round and round! My mum used to say ‘You ain’t having any more sweets!’ Sent me hyper they did. But I like to get sweets now and again. And like scoff em all.”
“Ha! Me too…!”
“Yeah! Maybe I need that energy rush.. Every now and again. I dunno…”
“Maybe.. Nice to meet you, I’m getting off now…”
“Well a happy Christmas to you missus!! And don’t eat too much chocolate!”
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?
“LB, why did you shove Henri at school today?”
“He stole my cousin’s toolbox.”
“My cousin Dave.”
“You ain’t got a cousin Dave.”
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.
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.”
“I wish Tulisa was my sister.”
“Hey LB! Did you go to football club after school?”
“What was it like?”
“Cool. Did you score any goals?”
“No Mum. I was the goalie Mum.”
“Very cool! Did you save lots of goals?”
“Oh, did you let many goals in?”
“Oh. How many did they score?”
“Oh. Never mind. Do you like playing football?”
“No Mum. Not really.”
I met up with Doreen this morning on the bus to work this morning. Doreen worked for social services for 20 years as an escort and took LB to school for about 2 years five or six years ago. We loved Doreen. She was sitting with Sam who was on his way to work in the café at Oxford Brookes. It turns out Sam used to go to LB’s school so we did a lot of catching up with different kids from the past.
D: Oh yes, we used to pick up Ben T at Radley Way and then go on to Rose Hill for Sarah H, she was a funny one and then back to Barton for Tom L. Then there was James C…
S: James C? Awww… you’re kidding me! I know James C from Anjali Dance Group.
D: Yeah, James C and then Donna T, do you remember? She was at Saxon House for a while.
S: Donna T? Yes. Oh you’re kidding me! [hehehe]
D: And then there was Terry W…
S: Terry W? You’re kidding me! Oh you’re kidding me right! I know Terry W from Mencap.
D: Terry W yes. I saw him recently in town. He came over and gave me a great big bear hug, as he does. But the person he was with told him off for talking to strangers. He said to her ‘That ain’t no stranger. That’s Doreen’. I don’t know. I see ‘em now and they’re all so grown up, but I still got photos of a lot of a lot of ‘em. Anyway, I’m getting off here. Nice to see you both.
S: Do you know Joan M?
Me: Yep, I know Joan M. Do you know Danny F?
S: Danny F? You’re kidding me! I know Danny from Mencap. Mencap. Terry W. was in town. Why did the carer do that? They were wrong. Terry knew the lady sitting here. He knew her and they were wrong to say ‘don’t talk to strangers’. She wasn’t a stranger. Fucking outrageous. They were wrong. Do you know Daisy?
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?”
“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?”
“Who was it LB?”
“Recorded message Mum.”