The Unit. Day 68

“And LB, make sure you say ‘Hello’ before you ask grandma for your bus magazine. Ok?”

“Yes.”

“Hello LB.”
“Hello.”
“How are you?”
“Hello.”
“Did you enjoy the bus museum?”
“Hello.”
“Would you like a drink?”
Where’s my bus magazine?”

Home movies and translation

As a prelude to two days annual leave, I started to ‘sort out’ stuff yesterday afternoon. A painful experience. Partly because it highlighted my (our?) hoarding tendencies groan, but also because it made visible the way in which our lives were disrupted/interrupted/put on hold a few months ago. This interruption – still no effective words for this – was apparent through opened but discarded post and other overlooked detritus.

Shudder.

Anyway, one positive to the sort out was finding home movies that had been missing for several years. They’d fallen down the side of the desk where I’m sitting typing this (the darker reaches of sides and behinds that are only explored when annual leave beckons).

I took time out of sorting to graze this footage. Sob. Where.did.the.years.go???

Various things jumped out, including a trim version of Rich *cough cough* and the total cuteness of the kids. And LB’s quirkiness and humour shines. In one scene, he’s jumping up and down with excitement during an Easter egg hunt, completely missing any eggs even when gently guided towards them repeatedly by Rich. In another, he’s sitting eating his tea with Rosie and Tom, wearing a cycle helmet, his ELC police tunic and a pair of googles. Hilarious. Why was this version of him absent from every ‘official’ report/discussion over the years?  Looking back, we were completely derailed by a system which delivered so little. I can remember LB and Rosie being filmed by a paediatrician at an assessment centre as tots. She wanted to capture his “non-interaction” and “own world” stuff on film for teaching. Makes me cringe now but in the early days of crash landing into ‘special needs-land’, you invest so much hope in these professionals making your child ‘better’, you do pretty much anything they suggest/ask. Hunter-gatherer diet….? Er, let’s not go there.

Framing ‘learning disability/autism’ as a negative, needing treatment, repair or containment [yes, I know. The irony] rather than engaging with LB (and other dudes like him) as individuals, means that support is pretty much useless. And as I keep saying, support that don’t support, ain’t support.

So what advice would I give my fifteen year ago self?

The dude’s different, and he’s always gonna be. Get over it and get on with enjoying what he brings to the party. Oh, and don’t get too hung up on all those meetings with health and social care professionals. They ain’t as important as you think. Really.

‘Busy behaviour’ in the ‘Land of the Golden M’; The sequel

ryan5-195Bit of groundhog day this weekend. My PhD (started about 10 years ago now) focused on going out in public places with learning disabled children and McDonald’s featured consistently in the interviews with mothers. Or the ‘Land of the Golden M’ (as it was then) as one mum called it.

Children’s ‘busy behaviour’ was tolerated, the food arrived quickly, it was always identical (very important to a lot of kids who were on the autism spectrum) and sprinkled with that magic dust that makes it pretty taste-tastic for kids.

Regular readers will know that now LB is offered choices in a fairly blunt way, it can be difficult to encourage him to do things. Last weekend he said no to going out with us, so this weekend, we decided to fall back on the old favourite and offered breakfast at Mooky D’s. An instant “yes”.

Wow. Changes afoot in the Oxford branch; self service machines and a new queuing system. Even better for the less than patient. It was fast and we had a laugh.

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LB was in great spirits and, once he’d noshed every bit of his food and drunk his milkshake, chatted about scrapyards and tyre disposal. Perfect.
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The Unit: The beginning

I’ve just been reading old posts in preparation for a meeting with the learning disability service manager this morning and realise there was a jump from Charlie’s Angel’s taking LB to town on that Tuesday morning to him being sectioned that night.

Just briefly, to fill in that gap;

The trip to town on the bus went ok but LB became agitated after his Subway sandwich and they came back quite early. I was at work later that day when a mate rang and told me about a mental health/learning disability treatment unit she’d been told about, very locally, that should admit LB on an informal basis because he was a danger to himself or others. She gave me the number to ring to set the process in place. And a second number to ring to follow up, if he wasn’t admitted within an hour or so.

Sitting on the bus home, holding the scrap of paper with the two numbers scribbled on it was indescribably awful. As was the rest of the day. And the days that followed.

Funny really, looking back. These numbers obviously gave us access to tap into a tried and tested process. After a very short space of time, we had a consultant sitting at the kitchen table. Bizarre really as we had been shouting for help with zip all effect up to that point. But hey ho, until you know what you really need to know, you don’t really know anything in the weird world of learning disability support.

The consultant talked with LB first on his own, and then went though a load of questions with us. There were some tensities, shall we say. Rich nearly exploded when he suggested organising outreach workers to come in each day to check on LB instead of admitting him. Things had got beyond outreach in a big way. And we had little confidence in whether ‘outreach’ would materialise. Eventually, after nearly two hours, and a call to his line manager, it was agreed that LB should be admitted.

The consultant left saying he would call when ‘the bed’ was ready. Tom had his judo grading. Rich dropped him off and told him to walk round the corner to his grandparents after and wait for us to collect him. I got together some pyjamas, clean clothes, wash stuff and sat with LB who seemed quite excited. He loves the whole hospital/institution thing; uniforms, wards, processes, order.

We got the call and set off for the unit.

“Where are we going?” said LB as we turned away from the local hospital. We explained it was a different hospital and then, five minutes later, arrived at a neat two storey building on the site of the learning disability team. Right by the psychiatrist’s office. ‘Five minutes from home’, you say? Next to the psychiatrist’s office??? Yep. Knowledge eh? It’s a vicious beast when you don’t have it.

There was a  brief blip and slight tensities as we weren’t expected and waited at the door trying to establish our credentials.  Rich asked, again through gritted teeth; “You get a lot of people turning up randomly to try and get their children admitted, do you?”

We waited in the living room while the official approval to admit LB was received and then unpacked his bits in his new room. We left pretty much straight away and went to pick up Tom. He got his blue belt.

Charlie’s Angels

At 8.45am today I was sitting with the phone ringing through the list of day services and respite from the social services. We were desperate for some help. Got to number three (No. 1 only took referrals through the county council and No. 2 sounded very dubious and said to ring back in a couple of hours when a manager might be there). The phone rang. It was Vicki, LB’s teacher. “We’re coming over to see you right now, me, Tina and Sue. We can have a chat and then Tina and Sue will take LB travel training.” Eh? Wha???

Twenty minutes later they were sitting in the kitchen, giving Chunky Stan fuss and organising a new school timetable for LB that didn’t involve him going into school at all (but them going out of their way to collect him and drop him off). Their focus was LB, and our family.

Sue and Tina went off with LB to catch the bus to town. Vicki turned to us saying it had all been a bit last minute; she’d told me on the phone they were going to come over before she’d checked with the head teacher if it was ok to leave school. They felt they just had to do it.

This is what support looks like.

And thank you beautiful ladies.

Definitely not laughing boy

LB is upstairs, muttering and smacking his legs, shouting out and watching scrap metal videos on youtube. We had a burst of sunshine this afternoon when he came down for a piece of coffee cake and chuckled about how good it was. Funny how tiny snatches of what was can be so powerful. I went up to see him a short while later but he was talking a bizarre type of gibberish and looked at me with hatred. He muttered about how Sara had been killed.  “Ok, matey, I’ll be downstairs if you need anything”, I said,” [fake] cheerfully.

We are occupying this strange, exhausting, stressful space at the moment. He’s threatened Rich but remains OK with Tom and Owen. We have the medication to knock him out if necessary, though where the line is drawn between deciding he needs medicating before it’s too late to get him to take it isn’t clear.  We are piecing together strategies; not say no to him outright, prepare him carefully for any expectation he will do something, listening constantly for any shift in tone or intensity, mentioning any past special interest (Mighty Boosh, Irish lorries, cross channel ferries) to try to snap him, even fleetingly, into the coffee cake mood.

Today I chased up social care. Yes, despite the set of exchanges on Friday afternoon with the learning disability team, I had to contact them. The duty Care Manager seemed active and concerned which is great. He put me in touch with someone from Southern Health Outreach (based at Saxon House, the building with the snooker table). I rang them and have an appointment for April 3rd. Seventeen long days away. The psychiatrist rang straight after. She suggested we meet or have a telephone consultation soon. Er, right now would be good, I said. She found her notes, listened to me (without really listening) and suggested doubling his anti-depressant. We are meeting her in a week to see if this has helped. The psychologist was already booked in to meet us on Thursday. That is no support our support right now.

I’m writing these miserable posts because I think that we shouldn’t (not we as in our family but we as in every family with a dude like LB) be in this position. It screams to me that support and services are woefully inadequate and structured in a way that ultimately cause harm rather than good. LB’s following in almost identical footprints to a classmate, a situation I never dreamed of six months ago.

Now I ain’t a psychologist, or a psychiatrist, but I think LB probably wanted a mate, a girlfriend and a slightly different structure to his life. And now he’s retreating into some hideous fantasy type world that has got trouble written all over it. Doubling anti-depressants and organising late in the day, middle aged carers isn’t going to do an awful lot. But hopefully I’m wrong.

Comic relief day. No.

LB punched one of his teaching assistants* in the face this morning.

Horror.

I rang the emergency number on his Care Manager’s ‘out of office’ email and was told someone would ring back. The guy called back ten minutes later and suggested a referral to the learning disability team nurse who specialised in challenging behaviour.

“Ok, how long will that take?”
“Well I’ll put the referral through next week and she’ll get in touch when she gets it. I’m not sure how soon she’ll be able to come and see him though.”
“Eh?? Have you listened to what I’ve said?????” 
“Er, sorry?”
What are we supposed to do in the meantime, if he turns on someone else?????”
“Well, I could make it an urgent referral I suppose… Ok. I’ll put it through as urgent then. And there is a psychiatrist too. I don’t know if….”
“She.discharged.him.last.week.
Well I could try ringing her this afternoon.”

Thirty minutes later he rang back.

The psychiatrist had gone home, he’d spoken to the duty psychiatrist; we have to go to the GP and ask him to ‘escalate’ LB to the psychiatrist.

I’m putting it out there now, the support and services for young learning disabled people in Oxfordshire is worst than crap-shite. Unacceptable. Please feel free to pass this link on to anyone in health and social care. Or anyone really. Things HAVE to change. And not just for LB.

*Sue, who has gone about as far beyond the call of duty as you can with LB, including getting in contact with mermaids around the world and sitting around in a stinking, freezing cold workshop every Wednesday, while LB does mechanic training.

The bath and the bell

One of my birthday presents was a bell so I could ring for ‘service’ (wine, newspaper, clean towel, etc)  when in the bath. I know. It’s a laugh riot in our gaff. On Sunday, LB was about to get in the bath when I realised the full potential of the new, shiny bell. LB loves baths but has quite a way to go to mastering effective tap control (heat and quantity). We run it for him and leave him to soak. Trouble is, it’s tricky to decipher general chatter from a help request (or outright alarm). This means he doesn’t get much privacy.  Dinging the bell could resolve this.

“So LB, if you want anything ding the bell. Like this…” DING!
“Yes Mum.”
“Ok? If the water gets too cold or you need anything, just ding.”
“Yes Mum.”
“Ok, I’m going in the other room.”
“Yes Mum.”
DING!
“Wow. That was quick. What do you want?”
“I love Irish lorries Mum.”

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Football club

“Hey LB! Did you go to football club after school?”
“Yes Mum.”
“What was it like?”
“Fine Mum.”
“Cool. Did you score any goals?”
“No Mum. I was the goalie Mum.”
“Very cool! Did you save lots of goals?”
“No Mum.”
“Oh, did you let many goals in?”
“Yes Mum.”
“Oh. How many did they score?”
“Hundreds Mum.”
“Oh. Never mind. Do you like playing football?”
“No Mum. Not really.”

The phone (2)

If we ask LB to get the phone, he usually shouts at it “Whatdoyouwant???” until it stops ringing. Tonight was progress. With a big fat P.

“LB! Get the phone!”
“Who me Mum?”
“Yes, quick!”
“Do I have to Mum?”
“Yes, quick before it stops ringing.”
“BLOODY PHONE. I hate it.”
“Just do it.”
“HELLO! HELLO! WHAT.DO.YOU.WANT??”
“Who is it?”
WHATEVER!
“Who was it LB?”
“Recorded message Mum.”