Monthly Archives: March 2012

Yenworthy and Simon Mayo

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“Mum.”
“Yes?”
“Mum, am I going to Yenworthy, Mum?”
“Yes, LB.”
“Mum, I love Yenworthy Mum.”
“I know, LB. Do you know how I know?”
“Because I’ve told you 25,000 times, Mum.”
“Yes, LB.”
“Mum, when am I going to Yenworthy, Mum?”
“In June sometime.”
“Mum, am I going on Monday, Mum?”
“No, not this Monday. But a Monday in June.”
“Mum, when is June, Mum?”
“In about two months time. We’ve got April and then…”
“…March, Mum.”
“No, then May, then June.”
“Mum, I hate Simon Mayo, Mum.”
“I know you do.”
“Mum, I think he should get sacked, Mum. He’s so boring, Mum.”
“Mmm.. Where would he work if he got the sack?”
“In Tesco’s Mum. On the checkout Mum.”
“Hehehe.”
“Mum?”
“Yes, LB?”
“Mum, do you like Simon Mayo, Mum?”
“He’s OK. A bit boring sometimes.”
“Mum?”
“Yes, LB.”
“I love Yenworthy, Mum.”

 

“What’s the time?!!”

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“LB!!”
“Yes Mum.”
“EEEELLLLBBBBEEEE!!”
“Yes Mum. Where are you Mum?”
“IN THE BATHROOM. WHAT’S THE TIME??!”
“Dunno Mum.”
“GO AND ASK RICH THE TIME WILL YOU?”
“Yes Mum.”
[…….]

 

Playing games

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Now. I ain’t no politician. And I don’t claim to know an awful lot about the structure and process of British politics. Well, barely anything really.

But I do know that, unless you are an exceptional person, if you have the life experience of – very rich family, public school and Oxbridge education (most likely studying PPE) and straight into politics – you ain’t really going to know diddly squit about anything other than being very rich and privileged. Nothing.

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Meeting Danny in the supermarket

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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!

Siblings

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Has to be done today. In honour of my old Rosie turning up at 10pm last night as a Mother’s Day surprise. (Sob) After the shrieks and hugging, and after Tom had led Rosie up to her room to explain exactly how much of it he’d taken over for his stop motion films, we squashed back onto the settee (with the two dogs).

And it was lovely. So lovely to hear the kids chattering on together. Like the old days.

There is a lot of randomness growing up in a house with a learning disabled sibling. For years, there was a lot of terrible tantrums that could go on for hours and hours. These were so distressing for everyone, but from early on, the others seem to have learned not to moan, not to complain and not to say ‘What about me?’ There are too many ruined activities to remember really. Holidays cut short, days out that were a combination of military organisation and plain endurance.

Being on show in public is not something that many people like. But the kids have been in the centre of countless public situations where LB has berated people for (alleged) shoplifting, being ‘foreign’ or having some visible difference. Or just had a meltdown.

We went to White Scar show cave once. Britain’s longest show cave, one mile underground.  We put on our helmets (LB loves anything to do with emergency services) and set off in a party of about 20.  Our guide, a white haired cave enthusiast, led us along the narrow passages until we reached the highlight of tour; Battlefield Cavern. It was spectacular. The guide asked Rich to turn the light off as he was standing by the switch.  There was a collective “Aaaahhhhh…” as we stood on a wooden platform marvelling the glowing stalagmites and stalactites.  But switching off the lights was not a good idea.

LB started to quietly pray. Eh????

“Dear God, please get me out of this cave safely…”

We all looked at each other. A few people turned round to look at him.

“Dear God. GET ME OUT. GOD! HELP ME…”
“Shh..LB. Shhhh now. Don’t be silly…”
“Shhhhhhh LB…” hissed the kids, nudging him.
“God. Johnny English. Dear Johnny English save me, Johnny English…”
“Shhhhhhhhhhhhhhhhhhhh……”
“…save me from the cave. Johnny English. HELP US. THE ROOF IS GOING TO FALL IN. WE.ARE.ALL.GOING.TO.DIE!!!”

Oh crap. Crap. Crap. Crap. Things disintegrated pretty quickly at that point. Britain’s longest show cave and all that. A mile underground. “Turn the light back on!“, shouted the guide, as Rich scrabbled round trying to find the switch. Children started crying, parents got agitated, LB kept praying. Loudly.

It’s probably fair to say we got out of the cave in record speed. A cross between a fast walk and a jog. Parties coming the other way were forced against the wall, as the guide, followed very closely by LB (still calling for Johnny English), went into emergency exit overdrive.

Eventually we saw daylight. LB stopped praying and cheered up.

“Funny little lad,” said the guide, panting, “is he alright?”

Despite these experiences, they all get on brilliantly. There is an easiness to their interactions, in which LB has a central role. Even though he doesn’t always respond. They all demonstrate an acceptance and understanding that isn’t articulated or remarked upon. It just is.

And I love it.

Layers and layers…

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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.

Benefit cheaters

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The whole business of who should inform people of the benefits, support and services they may be entitled to has been playing on my mind for the last few weeks. In some work I’m doing, involving interviews with people with long term conditions, there are consistent reports of people not knowing. Not knowing they were entitled to x, y or z.

Similarly, I was surprised to be told by mates that LB has been entitled to Employment and Support Allowance since he was 16. Eh? Wha? Are you sure?? How do you know? (Other parents told them). How could I not know?

I cast my mind back over all the meetings I’ve had with various profs over the past year or so:

  • There was that DWP woman who travelled 100 miles to see for herself whether LB could manage his own finances.
  • Two annual reviews with a Connexion worker and a social worker in attendance, as well as school staff.
  • At least three meetings with a transition social worker (to increase LB’s care package (from 4 hours a month, to 4 hours a week and discuss the future).
  • The Direct Payments police.
  • School nurse, paediatric neurologist, adult neurologist, GP, local authority funded care agency… and so on.

Now I ain’t suggesting it is the responsibility of any one of the above to inform us of benefits. I’m just surprised that given the huge layers of bureaucracy and meetings that having a child like LB involves, we could get to him being over 17 without a mention of ESA.

On Twitter yesterday, a couple of people said there are welfare rights experts based in CABs (currently under threat from government cuts). But it boils down to the old saying; you don’t know what you don’t know. I didn’t know I should contact the CAB at this point (or a year ago). And, given the amount of time I have spent in meetings like the ones listed above, I suppose I didn’t think I needed to.

For me, there is an opaqueness to the benefit system in this country. So much information seems to be passed on from parent to parent, disabled person to disabled person, support group to members, rather than through ‘official’ channels.  I’ve had a shufty at the government website providing information about ESA and other benefits. Reading the information, it wouldn’t have crossed my mind that LB is eligible. A quick look at the other benefits/allowances left me as much in the dark. It took seconds to be told about ESA, by mates, and to be emailed the number I then rang to organise it. Seconds.

Makes me wonder, really, who is doing the cheating?