“Mar-vaaah!”
“Eh? Wha?”
“Mar-vaaah!”
“What are you saying LB? I don’t understand you.”
“Mar-vaaah! Do you like Irish lorries, Mar-vaaah?”
Mar-vaaah
Reply
Category Archives: Laughing boy tales
Siblings
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…
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.
Meet the gang…
It’s difficult to buy Christmas/birthday presents for a boy who doesn’t really want any presents. And has very, very specific interests – die cast model buses/lorries and the emergency services – that have remained the same for a good fifteen years. We decided to drop the Playmobil option a couple of years ago as it seemed a bit age inappropriate, but these guys are still played with regularly. I thought they deserved a group photo. Love em.
“A degree of autism” and Dr X
I’ve talked about LB’s broader diagnostic journey before. Today I’ve been thinking about the way he has been put on (and off) the autism spectrum. I had a shufty through his medical records (a source of bafflement, frustration and ‘what the fuck?’ moments) and traced autism through the various reports. So, starting when LB was a toddler;
He became quieter and happier when he spotted the wheels on my mobile chair, and spent 10 minutes pushing the chair backwards and forwards with his eyes fixed on the wheels. (Speech and Language therapist, August, 1996)
Classic, stereotypical autistic behaviour flagged up, but the word autism doesn’t appear till the following year in a letter from the GP to the paediatrician;
Hazard Alley
LB went on a school trip to Hazard Alley today. A purpose built safety centre in Milton Keynes for ‘experiencing hazardous scenarios in safety’.
In his diary, his teacher had written “LB was on fire, answering all the questions.” Attaboy! Being known as ‘Health and Safety Sarasiobhan’ around here, this was a trip after my own heart. Risk reduction knowledge.
“How was Hazard Alley, LB?”
“Good Mum. It was good Mum.”
“What did you do there?”
“Looked at hazards, Mum.”
“Cool.. What sort of hazards?”
“Like roads, Mum. Roads are dangerous.”
“Ok. And what else?”
“Lorries, Mum. Lorries are dangerous.”
“Why?”
“Because they run you over, Mum.”
“And anything else?”
“Petrol stations, Mum. Petrol stations are dangerous.”
“That’s right. What about in the house? What hazards are there in the home?”
“Dunno, Mum.”
“Try and remember.. What is dangerous in the home?”
“Cookers, Mum. And fires. House fires, Mum. And everything, Mum. The home is full of hazards*, Mum.”
“That’s right. Hey, Vicki said you answered questions. What questions did you answer?”
“It’s very dangerous, Mum.”
“Oh. What was the question?”
“How dangerous is it, Mum?”
“….. What did you learn then, about avoiding danger?”
“Don’t go down dark alleys, Mum.”
*Yep, you’re right matey… spot on.
Heavy haulage
“Mum?”
“Yes?”
“Mum, do you like heavy haulage, Mum?”
“Yep.”
“Mum, is heavy haulage roadworthy, Mum?”
“Yep.”
“Have they checked the oil, Mum?”
“Yep.”
“Have they checked the tyre pressure, Mum?”
“Yep.”
“Have they checked the bunks are bolted in, Mum?”
“Yep.”
“Have they checked the engine, Mum?”
“Yep.”
“Mum?”
“Yes?”
“Mum, do you like heavy haulage, Mum?”
“Yep.”
“Mum, is heavy haulage roadworthy, Mum?”
“Yep.”
“Have they checked the oil, Mum?”
“Yep.”
“Have they checked the tyre pressure, Mum?”
“Yep.”
“Have they….
……
The homework
LB came back from school with homework today. A questionnaire to fill in about sleep. Homework hasn’t really featured much in his life.
“I hate homework, Mum. I’m not doing it.”
“You’ve got to do it.”
“No. I’m not doing it, Mum. I’M.NOT.DOING.IT.MUM.”
“Don’t be silly, you’ve got to do it.”
“Why Mum? Why Mum? I HATE HOMEWORK MUM!!!”
“Stop shouting. Why do you hate it?”
“I HATE IT.”
“Why?”
“BECAUSE… I HATE IT. I don’t have to fill it in, Mum. I’m not doing it. I don’t want to FILL IT IN!”
“Pack it in. Tom has to do homework and he doesn’t like it. Why don’t you think you have to do it?”
“BECAUSE I’VE DONE A LOT OF HOMEWORK, MUM. ALL THE TIME. My life has been spent doing homework. All my life! I hate it. I hate it AND I’m not doing it.”
“You don’t do a lot of homework, matey. You’ve got to do it. It’s good for you.”
“Why’s it good for me, Mum?”
“It helps you to learn more.”
“I already know more, Mum. I’m not doing it, Mum.”
“Ok, tell me what you know…”
“Sleep’s good for you, Mum.”
“……”
“Anyway, homework’s boring. It’s depressing actually [makes crying noise]. It’s depressing, Mum. I’m NOT doing it, Mum. I hate it….I’M NOT DOING IT. THAT’S ALL.”
Silence.
“Can I do it now, Mum? Get it over with, Mum?”
LB and the Co-op
Well, as I updated earlier, the dreaded annual review was a surprisingly productive meeting today. Depressing moments as expected but some other suggestions too. Like let LB shop in the Co-op on his own.
WHAAAAAAAAAAAAT??????
His teacher was very reassuring about this. They’ve been working on shopping smarts at the local Asda and LB is now able to find different products and work the U-scan.
“Make sure you tell him you want a receipt,” she said, cheerfully, “So he doesn’t walk out without paying…”
Gulp.
So. Deep breath and we head to the Co-op. I give LB his shopping instructions – semi skimmed milk and a newspaper – and a £5 note. I tell him I’ll wait at the entrance.
Off he went. With a serious demeanour. He missed the newspapers on the way in but two items was probably a big ask. He disappeared up the aisle towards the milk fridge. I sat on a chair by the U-scan.
Eeek…. Scary times indeedy…. I was like a meerkat, determined not to get off my seat, but turning to check the entrance to the supermarket while scanning the aisles for him. Minutes ticked by. No sign. I was jiggling up and down on the seat, terrified I’d missed him leave the shop. It was quite busy. Door/aisle/door/aisle/door/aisle/door/aisle/door/aisle..Should I shift my chair over to the centre of the entrance, I wondered to myself?
At last. He appeared from the booze aisle (way to go LB). He was still walking seriously, holding the £5 note in one hand by the tiniest corner. No milk.
“Hold the money tightly”, I shouted at him, silently. He disappeared down the home baking and bakery aisle, money flapping.
Again, several minutes passed. The assistant manager looking after the U-scan kept turning to look at me. Despite being a regular, I think I was tipping into a dodgy behaviour category with my fidgeting and longevity sitting on that chair.
Some local secondary school kids ran out of the shop, giggling. Crap. Have they picked his money off the floor? Or swiped it from his hand????? I tried to distract myself, remembering when Green Dragon worked in here. He was nowhere to be seen this evening. Then I saw LB. He emerged from the toiletries aisle, holding the milk and the £5 note.
Way to go LB! He speeded up and made a beeline for the newspapers he’d walked past on the way in. It was a Chariots of Fire moment. The boy was on fire. He picked up the right paper and made straight for the U-scan. First U-scan was broken but that didn’t stop him. The second U-scan was working and, with a little bit of help from the assistant manager, he scanned, paid, collected his receipt and his change.
Well. What can I say?
The dude did good. Bloody good.
With many thanks to Vicki, Sue, Tina (and Henry)….
The Annual Review and Melinda Messenger
Crapholes x 10 (000). It’s annual review time. Again. Number thirteen I think…
I hate annual reviews.
For those who ain’t familiar with the system, they are (I think) the opportunity to revisit LB’s Statement of Special Educational Needs and change anything that needs changing to bring it up to date. Given that it was written when he was four, he’s now 17, and changes are sporadic over the years, it is a bit of a pointless, bureaucratic exercise. For example, his Statement still includes the report from the psychologist guy against whom I made a formal complaint that was upheld years ago. There is no proper re-visiting of any aspects of LB’s life as it is now. Just a bit of polyfilla here and there, in a bodge job worthy of a whole episode of Cowboy Builders.
‘So what actually happens?’ I hear you ask, edging closer to the edge of your seat…
Well, not an awful lot, to be honest. You can request particular professionals attend, but I gave up that process years ago when I worked out anyone reasonably relevant didn’t bother attending anyway. Way too busy doing important things elsewhere. You get some random people, like Connexion workers or the occasional transition social worker, pitching up. But hey ho.
My despondency at the process was further underscored a few weeks ago when, at a night with my ‘speshy pals’, I was told that that LB had been entitled to Employment and Support Allowance for the last fourteen months. Er, Ok. So no one mentioned this last year? What the fuck?
The bottom line is, I don’t really understand the point of annual reviews. Lip service? Tick box exercise? Well maybe it’s about time the experience of parents is taken into consideration by the Education Authority. As fellow parent @AlexaDWilson commented on Twitter, it’s a ‘lowering experience’ and we really don’t need any more of those.
So, tomorrow at 1pm, think of me. And LB.
And if anyone has Melinda Messenger or Dominic’s number, can you send them in our direction?
Cheers.
Update: Well. I’ve gotta eat my words this time. Still depressing, but good turn out. Connexions person and LB’s social worker were spot on. Lots of good ideas and suggestions to support him, particularly from his teacher, and a lot of laughter. Number 13 was a revelation.
mydaftlife 