Weekend News

LB is back! He marched in with his PGL certificate, a bin bag of filthy clothes, shouted “HELLO MUM” and disappeared to find the laptop to go on youtube.  Any details of his five day trip will have to be teased out with Chunky Stan’s help a bit later. Just before he got back, I was reading through his school news book. Hilarious really. So similar to my diary entries in my teens with exactly the same focus. 

This entry made me chuckle. Undated it details food (banana cake), TV (Passport Control, Traffic Cops, Britain’s Got Talent, Somewhere over the Rainbow) and daily mechanics (bath, bed, sleep). He trumped my early efforts with a finishing sentence “..and I went to sleep and that’s it basically.”

Mind your language

Tom was teaching Will some Spanish this morning. He’s off to Valencia on Wednesday to stay with his girlfriend’s family.

“Pretty impressive Spanish Tom. Where’d you learn that?”
“Er, Spanish lessons.”
“Spanish lessons? What in school?”
“Er, yeah. I’m doing Spanish GCSE in Year 10…”
“Ah cool. Do you speak any other languages LB?”
“Yes.”
“What ones?”
“Irish.”
“Wow! Say something in Irish.”
“Top of the morning to you.”

The torch relay

“Come on LB! Hurry up or we’ll miss it!”
“I hate the torch relay Mum. I HATE it!”
“Come on…”
“I HATE THE TORCH RELAY! I HATE THE TORCH RELAY!
“Look, I think it’s coming along St Clements already…”
“Why are you doing this to me Mum? I.HATE.THE.TORCH.RELAY.”
“There – look! Can you see it? Above all those people? Look up there..”
“I hate it Mum.”
“Ok. It’s gone. Home now.”
“Thank you Mum. Can I go back on Youtube Mum?”

The Sickie

“Mum? Mum is it school today Mum?”
“Yep.”
“What if I didn’t feel well Mum?”
“Don’t you feel well?”
“No Mum.”
“What’s wrong?”
“Dodgy stomach Mum.”
“Well you look fine to me.”
“I can’t go to school Mum. I don’t want to infect the other kids.”
“You’re going to school.”
“Mum! I’ve got a dodgy stomach Mum. And I feel sick. That’s what I feel like today.”
“School LB.”
“MUM. I’m knackered Mum. And I’m seventeen. I HATE school.”

Sunshine, support and fluffy dogs

Old social worker: So I think if you are hoping that LB will eventually move into supported living, he needs to get used to staying away from family…

Adult social worker: Well there’s always respite at Saxon House.

Me: Mmm.. I’m not sure he’d want to go there for respite.

OSW: Oh no. Definitely not. [laughs] He hates ‘the disableds’ does LB [laughs]. He is hilarious. You haven’t met him yet but he comes out with the funniest things. [starts crying with laughter] He sat there, looking at me last time and came out with these one liners. He is totally comical…[wipes eyes]

ASW: Well there’s always Camden. That’s run more like a hotel than a respite centre. It’s like walking into a hotel and it’s all set up like a hotel. There’s a couple of them locally and I think there’s one at the seaside. And actually, you’d be surprised how many people don’t see themselves as disabled.

Me: Wow!!! Camden sounds amazing.

OSW: Oh yes. A hotel? That sounds right up LB’s street.

ASW: Well it’s all about choice these days. You know. Personalised budgets and choices.

Me: [floats off into some imaginary space full of sunshine, fluffy dogs, support and services]

The adult social worker

“LB, your new social worker’s coming to visit me today. Then she’s coming to meet you at school.”
“She’s already been Mum.”
“Eh? Wha?”
“She’s already been Mum.”
“Oh. What did you talk about?”
“Being sociable Mum.”
“Oh. Ok. Can you remember her name?”
“Anita Mum.”
“Ah, that’s your current social worker. You are going to meet your adult social worker today.”
“Adult Mum?”
“Yes, the one who will be your social worker when you’re an adult.”
“She’s already been Mum.”
“No, that was Anita. You’ll meet the new one today.”
“I don’t want to meet the social worker Mum. I don’t even know her. She’s probably racist Mum. And… And.. she’s on placement Mum. She’s not coming to school.”
“Don’t be silly LB. You’ve got to meet her today. She’s your new social worker.”
“The law’s the law Mum. She’s not coming back to school.”

Slavery

“I AM NOT DOING THE DISHWASHER AGAIN. EVER. EVER! IT’S A CRIME AGAINST HUMANITY..AND.. AND IT MAKES BOSSY KIDS’ LIVES MISERY..”
“Eh, what’s that LB?”
“Nothing Mum.”
“What are you shouting about?”
“Nothing Mum.”
“It didn’t sound like nothing.”
“Mum?”
“Yes?”
“Mum, what’s slavery Mum?”
“Where people are held against their will and forced to work for the people who hold them.”
“Is slavery a criminal offence Mum?”
“Yes. Why?”
“No reason Mum.”

Progress

It’s funny when you have a learning disabled child. The whole experience is drenched in so much unnecessary crap, and focus on deficit, that it becomes difficult to disentangle the important bits from the baggage that is thrown at you. It also takes time to step outside of the rigid, inflexible, structure of ‘normal’ child development to accepting the dude you have.

In the early toddler/pre-school days, instead of celebrating the progress LB made, I had a feverish, obsessional focus on what hadn’t happened. I wonder now if there were some thoughtful professionals along the way who tried to point out progress, but were met with a frazzled, semi-hysterical woman who found the fact LB was no longer going quite so crazy ape-shite when I reversed the car less relevant “THAN THE FACT HE AIN’T SPEAKING A WORD YET DESPITE HIS GROMMET OPERATION!!!” All very stressful, distressing and ultimately unproductive.

As years go past, those markers of normal development become more and more meaningless and I chucked em out along the way. I suppose, with hindsight, I wish someone had let me know gently and effectively early on that his would be a different path, with different milestones. I suspect that some professionals thought they were. The paediatrician sort of tried but failed spectacularly with her statement, when he was about three, that we should expect nothing and come back to see her when he reached adolescence to talk about respite holidays. I couldn’t get out of bed for about two days after that appointment.

Anyway, I’m thinking about this today because LB’s progress has shone. First, he spontaneously said “Hello” to us this morning when he got up. Second, he opened the front door to Tom this afternoon and said “Hello, Tom. How was the cinema?” Tom looked as surprised as I felt. I filled Rosie and Owen in with these happenings this evening.

“You going all posh on us LB?” asked Rosie.

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.”