“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.”
“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.”
“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.”
“…. and there’s two! Two Scania’s… Ahhhhh.. lorry heaven. I’m in lorry heaven. Oh my god! It’s got my name on it!!!”
“LB, can we talk about something else at teatime? Something me and Tom are interested in?”
“But I love lorries Mum. I’m in lorry heaven Mum.”
“I know. But just while you eat your tea. Talk about something else to be sociable.”
“Sociable Mum? I don’t want to be sociable Mum.”
“Why not? You were obviously sociable last week on your school trip.”
“I know Mum. But that’s because there were people to talk to Mum. People to be sociable with Mum.”
“Well be sociable with us!”
“Ok Mum. Sorry Mum. I’ll be sociable Mum.”
“Good.”
“Do you like lorries Mum?”
LB came home with his Individual Education Plan today. The first target is;
I will introduce myself at the beginning of a conversation with new people.
“Ooh, that’s a good first target, LB. So what are you going to say when you start a conversation with new people?”
“Dunno Mum.”
“You’re going to introduce yourself….”
“… how about me and Mum show you, LB? Pretend we don’t know each other and we just bumped into each other in a shop….”
“Hello, I’m Sarasiobhan.”
“Hello, I’m Tom. Pleased to meet you.”
“Your turn, LB. You bump into me in a shop. What do you say?”
“Hello Mum.”
“….pushed me off the computer. He doesn’t get enough exercise. No he doesn’t. He’s not healthy. He goes for me all the time. And for me it’s horrible. It’s very, very hard for me…”
“Eh, what you talking about LB?”
“Simon, Mum. He got annoyed with me Mum. He pushed me off the computer Mum.”
“Aww. That’s not very nice. What happened? Did he get told off?”
“Yes Mum. He got put in time out Mum.”
“That’s OK then…”
“Because he wants to go on it all the time Mum. All the time, checking the football scores Mum. The football scores Mum. I can’t let him do that, can I Mum?”
“Mmm… Well you could take it in turns to use the computer.”
“He pushed me off it Mum.”
“Did it hurt?”
“Maaaaay… beeee…. it hurt Mum. AND HE GETS ON MY NERVES! I might get my legal team if he hurts me Mum.”
“I thought he’d left school a while ago?”
“He has Mum. He’s at college now Mum.”
“So when did all this happen?”
“Dunno Mum.”
“Morning LB! How you doing?”
“Good Mum. Very good, Mum.”
“Cool. What did you do last night when I was out?”
“Went to bed Mum. I was tired Mum. I was sooo knackered Mum.”
“Wow! What time was that?”
“9.30 Mum.”
“Did you sleep OK?”
“Yes Mum. After all the girls left.”
“The girls, eh? That’s good. What do you want to do today?”
“Bit of youtube Mum. Bit of DJing.”
“What would you have done before youtube was invented I wonder…”
“Why Mum?”
“Well youtube’s only been around for about five years.”
“Dunno Mum. Be sociable Mum. Talk to people Mum.”
“What sort of people?”
“You Mum. Is Stan fat Mum?”
I bumped into Danny in the supermarket, this evening.
“SARASIOBHAN!!!! WHAT.ARE.YOU.DOING.IN.HERE???” he shouted loudly, laughing, phone pressed against his ear.
“Hi Danny!! How you doing???”
“OOOOH!!! Joan is on the phone. She wants to speak to you.”
“Sarasiobhan! WHAT ARE YOU DOING??? What are you doing in DANNY’S FLAT?????”
“Hi Joan! No, I’m not in Danny’s flat. We’re in the supermarket…”
“WHAT???”
“WE’RE IN THE SUPERMARKET. I’M.NOT.IN.DANNY’S.FLAT,” I shouted.
“Ahhhhhh!!!!”
We laughed. Had a chat. Then Danny disappeared.
I’ve done a bit of research about going out in public places. Probably not surprising to you loyal blog followers, given LBs open engagement with all things ‘out of order’ in his book. In one interview early on, a mother of a young learning disabled boy told me she always shopped in Tesco’s with him early on Saturday mornings. I remember thinking to myself “Sensible woman..”
I asked her at the end of the interview to explain why she did the early morning gig. Without hesitation, she explained that her son liked to touch people and say “Hiya”. If the supermarket was busy, people never responded. If it was empty, there was more of a chance someone would say “Hiya” back.
It was a lesson to me in assumptions. One I still use in teaching.
She went on to say that she liked the way in which being out in places like the supermarket, or on the bus, with her son, had reduced her inhibitions. She enjoyed his random behaviour and interactions with other people. It made everyday life more fun and lively. “Oh blimey,” I remember thinking, “You totally lost me there…”
It took a few years, but I’m with her on that now.
Public space can be a dull, colourless, overly ordered, space.
It was good to see you, Danny. And to talk to you on the phone, Joan!
Still a bit grumpy this week, sorry. Dunno why. Unfortunately, the grumps weren’t helped earlier by remembering the experience of LB’s epilepsy diagnosis last year.
I won’t go over the whole sorry, sad story but just focus on a tiny part of it. The GP. Just to illustrate the layers and layers of crap and nonsense that parents of disabled children (and others) are subjected to.
LB was discharged by paediatric neurology after investigations into some absent type seizures he’d had. They said he needed to learn to manage his anxiety.
Next thing, I get a call from his deputy head teacher, while I was at work. She passed the phone over to the paramedic who reassured me that LB was now conscious after full tonic clonic seizure but on his way to A&E in the ambulance….
Surely pretty high up on ‘parents’ worst nightmare’ scale?
He was discharged after six hours in A&E and the next day I rang the (random) GP and filled her in with what had happened.
“..so I wondered if you could re-refer LB to neurology?”
“Well you’ll have to bring him in for an appointment..”
“Why?”
“Well I need to see him before I can make a referral.”
“Why can’t you just refer him?…He gets very stressed at the doctors and has obviously just had a pretty stressful experience.”
“Well I need to see him before I can make a referral.”
“Why? Why do you need to see him? I don’t understand. What is seeing him going to do?”
“I need to take his blood pressure.”
“WHAAAAA???? Whaddayamean????? He was in A&E for six hours yesterday having everything checked. WHY DO YOU NEED TO CHECK HIS BLOOD PRESSURE???”
“I’m sorry Ms Sarasiobhan, but I cannot make a referral without seeing the patient. It would not be accepted by the practice.”
“Are you listening to anything I’ve been saying? He had a referral to neurology, after being seen by the GP six months ago. He spent 6 hours in A&E yesterday after a huge seizure. Why can’t you just write the letter???”
“If I was to write the letter not having seen him, I’m afraid I would be lying. And I’m not prepared to lie.”
“Don’t lie!!! Just say what happened. He shouldn’t have been released in the first place without proper investigations, he needs to get back there ASAP. Why can’t you just make the referral?????”
Sniff. “Well, I’ll write the letter but I’ll have to phrase it in a particular way. I don’t think it will work.”
Four weeks later we get a letter from the hospital saying that LB had turned 16 since the original referral. He needed to be re-referred by the GP to adult neurology.
Grumpy? I dunno.
I love Twitter. But lots of people I know, don’t. They don’t get it. They hold onto facebook as a space for sharing stuff with chosen, monitored and policed others. Facebook is more intimate, apparently, and isn’t about stalking Scoph, Stephen Fry or Justin Beiber. Facebook doesn’t restrict status updates to 140 characters. What can you say in 140 characters for fuck’s sake? Well, I’ll come back to that..
I went to a social media talk recently by an expert from York University. He strongly cautioned against our increasing over reliance on social media, saying it would lead to us all creating very narrow social lives, funnelling down, bookmarking our favourite websites and increasingly closing ourselves off to broader social experiences. Facebook can do that. We select certain people that we allow into our circle and can even restrict levels of access to our personal lives. It is static, dated and restrictive.
Twitter smashes things wide open. Even though we choose who we follow, once we follow people, we can’t choose what they retweet to us. So if I was to follow 100 people, and they each followed a hundred people, and so on and so on (I ain’t no mathematician so I’m not even going to attempt to develop this equation/sum), that means I am potentially open to shedloads of information, in bite size pieces.
Yeah, yeah, yeah. I hear you twitter doubters say. What-effer. You can interact via email or facebook. Not as fast or as effectively. Increasingly, Twitter is part of media stories about particular events. Twitfeed is feeding into live tv and news coverage. It’s forcing governments, institutions, people to be more accountable. Through Twitter, a recent petition against proposed NHS reform has got over 170,000 signatures in a few days. Through Twitter a group of disabled people were able to raise funding, research, write up and disseminate their report into the proposed Welfare Reform Bill. Through Twitter (not through the BBC or other media channels) we know that Andrew Lansley’s recent trip to the Royal Free ended up with him being chased by a doc down the corridor to the words “Your bill is rubbish. And you know it!” Through Twitter, people are able to demonstrate and provide evidence of lies, deceit and cheating (largely by the current UK government at the mo’).
What can you tweet in 140 characters? Well, a lot. You’ve just got to be concise, pithy and cut out so much crap that we usually produce/circulate. It’s a liberating experience.
Twitter is what you make it. Depending on who you follow. It can be supportive, political, social, entertaining, funny, informative, creative and always fresh.
Finally, for mates that have shouted ‘help!, I don’t know how to use it’.. here are a few things that I’ve learnt in the last few months (or days;);
Now, if someone wants to let me know the best way to manage lists, that would be great.
mydaftlife 