Men at work: Day 105

LB went to the farm yesterday for the first time in weeks. He’s timetabled to go every Monday and Friday but has consistently refused. Even though he always enjoys it when he’s there and works hard.

Apparently he’s been interested in the decorators, carpet fitters and electricians who’ve been working at the unit for the last few weeks. Yesterday it was turn of the gardeners.

“You hear that sound LB?”, asked his support worker.
“Yes,” said LB.
“What is it?”
“No, it’s the sound of men at work.”

And that was it. Bowl of porridge (or two) and off to work. Beautifully done.


The Unit. Day 6

Crawled back to bed this morning, exhausted, and was kind of slumbering when the phone rang. It was Vicki, LB’s teacher. Charlie’s Angels were going to visit him this afternoon and she’d just had a call from a nurse at the unit. Could they talk about LB returning to school?

WOW. WOW. WOW. Back to school????

The highs and lows of the last few weeks are indescribable. Three sections in as many minutes and now back to school??? Fanbloodytastic.  Vicki told the nurse a bit about LB when he was Laughing boy, before he became withdrawn, distressed and eventually aggressive. They’re going to discuss a return to school after Easter.

I rang the nurse. They’d had the team meeting yesterday, done their baseline assessment over the past five days and will now start to get to the root of the problem. In the meantime the team think he needs to get active again, rather lying around all day.

I’m beginning to seriously love that unit.

Time for me to crack on with work now. I’ve got some cakes to bake later. And a load of other stuff to catch up with. Happier times indeedy.


March 2012. In place of this year’s daffs.

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.

The dishwasher. Again

“Mum. I’ve got a dodgy stomach Mum.”
“You’re going to school LB.”
“Dodgy stomach Mum.”
“School LB.”
“I don’t like you Mum.”
“Eh? How can you say that? I grew you.”
“No you didn’t Mum.”
“Where did you come from then.”
[points to the dishwasher] “There Mum.”

The blue onesie

“Hey LB, how was Trax?”
“Good Mum.”
“What did you do?”
“Looked around Mum.”
“Wow. What did you see?”
“Car workshops Mum.”
“Cool. What else?”
“Many many more Mum.”
“Many many more what?”
“Car workshops Mum.”
“Very cool. When are you going to start there?”
“Wednesday Mum. I’ll wear my blue onesie.”
“Maybe call it an overall there, eh LB?”

Transition (a steady descent)?

Here’s a photo I love of LB  at his last but one residential school trip in Devon. The one before last week when he had to be collected at a halfway point on the motorway, half way through the week. Because he was distressed, anxious and lashing out at a staff member.


I’m not sure if I’m posting this photo to hold onto his obvious enjoyment/happiness during the trip, facilitated by school staff who consistently push the boundaries with the kids, or whether I’m posting it as a record of transition (which I’m increasingly interpreting as a steady descent) into ‘adult services’. It’s probably a mangled combination of both.

I don’t understand how we allow (stop? prevent?) this descent. This change from a reasonably happy dude to someone who finds themselves at odds with life. The circumstances around LB’s current anxieties are, at the same time, specific, random and seemingly  ‘irrational’. So difficult to understand and make sense of.

Lashing out at people, and demonstrating intense upset is hugely upsetting for everyone involved. It’s happened sporadically (but memorably) in the past, but it’s uncharacteristic for LB to be so consistently unhappy. He’s pretty much had a much loved role in our family. He’s happily bypassed years of bickering, fights, wanting to win, score, or just be heard. He’s always occupied his own space, peppered with youtube and Eddie Stobart (and, thankfully in the past, Keane). For the last couple of months, he’s been unreachable, different, anxious, unpredictable and unhappy. And fucking irritating.

I was kind of pleased the GP today resisted referring LB to mental health services. He said it was medicalising a problem that wasn’t medical. I agree with that. And appreciate his refreshing approach.

But how do we stop the descent. How we get the happy surfer dude back? And who will help. It shouldn’t be like this.

The school play

LB, Rich and I went to watch Tom in his school’s production of The Wizard of Oz. It was deliciously brilliant and the hours and hours of practice the cast had put in shone through. LB started muttering to himself about 50 minutes in. Stamping on the floor of the tiered seating. People started surreptitiously looking. Curious.

Disruption of public space has long been an interest of mine. Through years of experience and studying it. How much ‘disruption’ is acceptable and why? In what contexts? My bar is set fairly low so I didn’t mind LB chittering on too much. Either people accept unusual behaviour in public, or certain people who can’t conform to (often spurious) normative standards can’t join in. Uncomfortable discussions around ‘what about people who buy expensive opera tickets and expect to be able to watch it without disruption?’ (as Len Davis once discussed at a memorable keynote talk) weren’t relevant here. I thought.

It got hotter and hotter in the hall and LB got increasingly agitated. Clenching his whole body and shuddering.

“WHAT.EVER!” he finally shouted out when the Good Witch told Dorothy to follow the yellow brick road.

“I’d better take him out,” whispered Rich, who was sitting nearest the aisle.
“Let’s wait and see,” I said. “It must be the interval soon…”

The songs continued, the heat rose and LB was tipping into full blown agitation gesticulating at the ceiling, bouncing on his seat and full body clenching. It was time to go. Rich manoeuvred him out and took him home, after a teacher brought him some water. He did well really at keeping a lid on it.

I stayed for the second half. Enjoying watching Tom and his mates singing, acting and dancing their socks off. With niggles about what had happened. The enjoyment was great.  The niggles were a bit more complicated. It’s upsetting having that kind of experience. For all sorts of reasons. There are going to be enduring tensions between us (and others) making LB do (some) ‘typical’ things that he doesn’t want to do. Sometimes these things will be necessary, sometimes because we want him to.  He should have been able to sit through the performance, as he sits through other things he enjoys. I was reminded of a friend’s husband saying to her in frustration “When are you going to realise our lives are less than straightforward?” after their son, one of LB’s classmates, had to leave a candlelight carol service at Christchurch College after repeatedly trying to blow the candles out.

I  think LB (and other dudes) should be able to attend events with a leniency allowance. They may not sit quietly for the duration. LB gets very involved in things and the audience could suck it up really… within reason. And they seemed to in this context. In the interval and later people (friends, parents and teachers) asked after LB with genuine concern/interest without being intrusive.  But there were the performers to consider here, too. A dose of ‘heckling-type’ behaviour could throw ’em right off track. Which ain’t ideal.

I collected Tom at the end of the show. A mix of excitement, exhaustion and smudged face paint.

“When did dad and LB leave?” he asked.

LB and the school bully

“LB, what happened at school today?”
“Nothing Mum. Nothing.”



The foyer

I randomly decided to pick LB up an hour and a half early from after school club yesterday. And found him sitting patiently on a chair in the foyer. Alone.

“Waiting Mum.”
“Dunno Mum.”
“What are you waiting for?”
“You Mum.”

I rang the kids club staff on the internal phone (you have to ring and speak to staff).

“Er, I have LB here. In the foyer on his own.”
“Ah, is he there? We’ll come down and get him.”
“GET HIM? I’ve got him! What’s he doing in the foyer on his own?!!!”
“We’ve been waiting for him to come from football. Usually he’s brought up to the hall after football by school staff…”

After this exchange on the phone (???) we left and the service provider running the kids club texted me disclaiming any responsibility ending with “..we are not at fault”. It was the school’s responsibility. Lovely.

This morning, the school liaison officer (SLO) rang, hugely apologetic. It will never happen again. LB had told a staff member that he wasn’t going to kids club that afternoon, I was picking him up. He had to wait in the foyer. Whoa. Cheeky monkey or what? (He doesn’t  like after school club and was pretty fixated on getting Eddie Stobart Series 3 in the post).

Or, as the SLO suggested, was the dude a bit psychic?

I asked LB what he thought about what had happened, at bedtime last night.

“I hate the foyer Mum.”