“Hey, LB. Tell Mum what you called me when I came in yesterday,” said Richy.
“The ‘c’ word Mum.”
“What?!!! What did you do that for???”
“Dunno Mum. It just came up and out of my mouth, Mum. I’m sorry Richy. I won’t say it again, I promise.”
Postscript: We ain’t made him stand in the corner. He’s peering at the bus depot through the park fence. Honestly.
Well this is a biggy. And will make all you dog lovers feel warm and fluffy. Stan hasn’t featured much in this blog so far (though his paws play a starring role). Stan is the treasured member of our family. He is a little bit of a chunky, doting, loyal Jack Russell who likes nothing more than hanging out with us.
After a shaky start – he was Richy’s 40th birthday pressie without us realising how much Richy did not like JR dogs, but lets not dwell on that – he has become a central character. Everyone loves Stan. Not least, LB.
LB has an unusual relationship with Stan. Though maybe typical for dudes like LB. LB will confide in Stan, discuss his day with Stan and seek Stan out more than anyone else. If we ask LB about his day at school, or elsewhere, he will disclose nothing. If we say that “Stan wants to know…..”, LB settles down with him and retells his day in detail. Using the voice he always uses when interacting with Stan. LB’s ‘Stan’s voice’ is a bit of a mystery given how good he is generally at impersonating people. It’s a sort of high pitched, slightly sing song voice, that has stayed the same for many years.
LB loves Stan without question. Stan, on his part, is remarkably tolerant of LB. Patiently listening to his chatter, sitting with him when he plays with his football guys (with his carefully arranged Playmobile crowd), putting up with some awkward handling. Funnily enough, LB doesn’t engage with Bess at all. He has got a ‘Bess voice’ when pushed (much squeakier and higher) but he has no real engagement with her. He is a one dog dude.
There are some (schmulzy) books written about how autistic kids’ lives have been transformed through their relationships with their pet dog. I don’t subscribe to a rescue/cure discourse at all, but there is definitely something remarkable about LB’s relationship with Stan, and the window it offers us into his life.
His literal (intolerant?) side remains constant though. His two most consistent Stan related questions are;
“Mum, is Stan fat, Mum?”
“Has Stan got a small head, Mum?”
I’m ain’t saying anything.
LB was in his favourite place this morning. Sitting at the kitchen table, watching lorries rolling on and off cross channel ferries on youtube. A cacophony of relentless grinding metal, reverse beeping lights, blaring horns and revving engines.
“Christ LB. That’s just noise,” said Richy, making a cup of tea.
“IT’S NOT JUST NOISE RICHY!!!,” shouted LB, angrily. “It is NOT.JUST.NOISE.”
Richy left the kitchen, leaving LB mournfully talking to himself, and shaking his head.
“It is not just noise. It is not just noise. It is not just noise.”
“Mum, it is not just noise, Mum,” he said, looking at me sadly.
“Well it is really,” I said, as another lorry started to slowly reverse.
beep.beep.beep.beep.beep.beep.beep.beep….
“It.is.not.JUST.NOISE, Mum.”
“Well what it is then?”
“It’s a way of life, Mum.”
Eight hours left of 2011, so here is a toilet tale to round off the year. I’ve always been a bit scatological. This is defined by the Oxford Dictionary as “an interest in or preoccupation with excrement and excretion”. OK. I find the topic interesting, sometimes funny, diverting and love the taboos surrounding all things pooh-related/matter out of place. More harshly, the Cambridge Dictionary definition is “showing an extreme and unpleasant interest in solid waste and sex”. Wow. A lovely example of pejorative, value laden, interpretations of words and language, wrapped up in an authoritative, comprehensive (‘neutral’) text.
Every year we do a family Christmas jigsaw. Well, it’s not really a family jigsaw. Rich hates em. Owen, Tom and I have always been at the puzzle frontier. The others used to drift in towards the end when the bulk of the work had been done. The puzzle late-comers. After the glory.
I know this post will be hated by those (many) of you who hate Chris Moyles but anyway.. here’s what happened.
Richy and I spent two days in Central London combining Christmas shopping with a very good hotel deal. In the pub, after a fab meal at Busaba Eathai, I randomly commented that it would be funny if Chris Moyles came in for a drink.
“Why?” asked Richy.
“Cos I’d say hello,” I said.
“Why?” asked Richy.
“Well, he seems that sort of guy. You know, chatty, cheerful, man of the people?”
“You’re mad,” said Richy. “He’d just tell you to fuck off and leave him alone.”
“No way!” I said, “Not Moylesy.”
“Course he would,” said Richy. “Why would he want to be bothered by you?”
“Well if he comes in, we’ll see.”
The following afternoon, we were battling along Regent Street, in the sleet, with a billion or so other last minute shoppers, when Richy, who was ahead of me, made a bizarre, jabby gesture to the left.
“What?’ I said, catching up with him.
“Chris Moyles,” he said.
“Whaddayamean Chris Moyles????”
“Chris Moyles just walked past.”
“NO WAY! Quick, let’s find him. I can ask him if he’d have told me to fuck off in the pub.”
I turned back and looked down Regent Street. A sea of people. About a million people looked like Chris Moyles from the back. Man of the people and all that.
“Nah, we ain’t gonna find him,” I said, disappointed. “Next time you see him, let me know a bit sooner.”
“Ok,” said Richy.
Part of LB’s new care package includes a 12 week course with a buddy. This buddy will take him out and about, to help him increase his independence, encouraging appropriate behaviour round the ladees and road safety. I told LB this morning that Terry, his new buddy, would be coming to meet him this evening, then promptly forgot about it.
Last Christmas I gave you my heart…
“And the man was sectioned. He was ….”
“Your mum was a big Wham fan, Tom.”
“WHAT? No I wasn’t!”
“… a PAEDOPHILE.”
“Shhh LB and eat your porridge. I was not a Wham fan.”
“Yeah, yeah, yeah.”
“Stop making it up. So irritating.”
“Me irritating? Living with you is…”
“Dad, I’ve lived with Mum for 12 years now and it’s been pretty good.”
“Aww..thanks Tom. How many years have you lived with me, LB?”
“Dunno, Mum.”
“Think about it LB. How old are you?”
“Seventeen, Mum.”
“So how many years have you lived with me?”
“Dunno, Mum.”
“If you are seventeen years old, how many years have you lived with me?”
“Three, Mum.”
LB came back from his trip to the Christmas market today in fab spirits. He’d seen a girl he liked. An American girl wearing a baseball cap, gloves and an apron.
“Mum.”
“Yes?”
“Mum, she fancied me, Mum.”
“Cool.”
“Mum, she fancied me, Mum.”
“That’s super cool. How do you know she fancied you?”
“She looked at me, Mum.”
“Ah. Did you talk to her?”
“No, I was too shy Mum. Can I go to the Christmas market again, Mum?”
“Yeah, course you can. We’ll go again next year.”
“Thank you, Mum.”
“TO FANCY OR NOT TO FANCY? THAT IS THE QUESTION,” he shouted triumphantly, walking up the stairs.
I’ve been thinking about ‘diagnosis’ a lot recently (see here for reflections on LB’s diagnosis) and, in particular, the process by which parents are given their children’s diagnosis of some form of impairment when the impairment ain’t obvious. This is partly because of a project I was tangentially involved with which explored the experiences of mothers of children with cerebral palsy. One of the main findings of that study was that participants were angry and upset when they found out that the diagnosis of CP was discussed among medical professionals several months (or longer) before it was disclosed to them.
In discussion, the paediatrician on the research team said that diagnosis was probably delayed because CP can be difficult to diagnose and health profs didn’t want to unnecessarily alarm those parents of children who turned out not to have CP. Apparently around 20% of children, in her experience, would turn out not to have CP after presenting some possible symptoms.
Now, I ain’t no scientist, but I couldn’t help thinking that this meant that the feelings of 80% of parents were being sidelined in favour of the 20% of parents who, presumably, would be pretty chuffed to bits that their children didn’t have CP after all*. I couldn’t understand why the emphasis was on not upsetting the smaller number of parents.
I got to thinking that maybe it was to protect the health profession against some form of legal action for mis-diagnosis, but this doesn’t really hold as an explanation. Paediatricians don’t have to authoritatively diagnose children at that early stage, but could, instead, suggest that one of the conditions they want to rule out is CP. Emphasising that this is a very tentative ‘could be’ at this stage.
An email exchange with fellow twitteree, @lizith, a PhD student, involved speculation that health professionals may feel a need to protect some parents from a diagnosis. Some parents may not ready to accept a diagnosis. This argument has always struck me as a form of paternalism and doesn’t have much substance based on the accounts of parents I’ve interviewed in the past who have largely been very keen to know.
So I can only conclude that this focus on the feelings of the minority is a reflection of broader responses to disability and impairment. The 80% of parents of children with CP have joined a new club. The Club of the Lesser Valued. The complexity, depth and reach of the negativity associated with membership of this club continues to surprise and depress me.
*I can remember before LB was diagnosed, but once the health visitor had identified serious concerns with his development, I was told to take him to an interaction type group called something like Learn to Play. There were about six kids at the weekly group and a pre-school teacher counsellor. I think we were all in a pre-diagnosis liminal state, so the atmosphere was pretty weird. Apart from one little dude, Elliot, the kids tended to do their own thing. The parents sat awkwardly talking about anything other than what we were doing there. One week, Elliot’s dad turned up with a bag from the Early Learning Centre. At the end of the session, he gave each child a little wooden Brio train.It turned out that Elliot had been released back into the mainstream and wouldn’t be returning to the group. Still makes me feel weepy, remembering that moment. Suspect Elliot’s parents don’t give it an awful lot of thought.
mydaftlife 