The fish tank, gotes and dressing up


An old mate Jill called round unexpectedly this afternoon while I was crocheting in the back room. I’m getting not too bad at crocheting squares with wobbly sides.

We had a bit of a reminisce over a cuppa and hob nob or two. The time we first met. About 20 years ago when Rosie, and Jill’s son Tristan, started at primary school together. Jill and I randomly sat on a wooden bench by the fish tank in the foyer so absorbed in chatting we missed the talk the headteacher was giving to new parents in the school hall. We laughed (in part horror) when they filed out passed us.

Failing our first ever school-related parental task.

The headteacher explained in the talk we missed that the bench by the fish tank was where kids would wait when no one turned up to collect them at the end of the day. The cone of shame bench. Rosie was to sit there a few times over the next four or five years. After what now seem like capers in the overly complicated and convoluted world of family life when a child is labelled as disabled.

ConnorWe remembered how Tristan became a regular fixture at ours after school typically wearing his Thunderbirds outfit. Virgil. Captain Tracey… The outfits.

I’d forgotten about the outfits. LB was a sucker for dressing up. Captain Scarlett, Woody from Toy Story, a racing driver, the Early Learning Centre policeman tabard. Batman to Tom’s handed down Spiderman.

Washing up gloves, school shoes and wobbly masks. The full gear.

Jill’s younger son Will became one of Tom’s bezzy mates. He was with us on the visit to the rare breeds farm when LB let the goats out.  I still chuckle when I remember being in that tiny space with LB and those cheeky goats. I recently found his school holiday diary where he’d written:

‘I let the gotes out’.

You did matey. And I should have seen it happening.

We didn’t half laugh though. That memory is priceless.





The orange bag and the harvest festival

Last Friday when we had the LB film meeting, Sue (Charlies Angel) dropped off an orange bag of LB’s school work she’d had in her car for months. She was never sure when was a good time and, until last week, I hadn’t said ‘Cool, I’ll take it now…’ Dunno why I did then, but I did. Funny thing time.

I’ve dipped into it slowly over the week. A mix of pain and preciousness. Among other bits, 3 arch level files documenting carefully and in great detail LB’s school work in later school years. Bringing back memories of some stuff, like the egg of trust, written about on these pages. And some things I didn’t know about.

This made me chuckle. Before his pagan and drum and base years, clearly. Love him.


Cup of tea, bit of a sprint and the Jam Factory

Oxford City Council have funded My Life My Choice to make a film about LB. Oxford Digital Media (ODM), a hip and happening video production company, are working with them. (Here’s an example of a recent collaboration between the two organisations, both based in the Jam Factory). Coolsers gone wild.

This afternoon, Sam and Guy from ODM came round to meet a few people who knew LB well and get a bit of an idea about who he was. There was no end of stories and laughter. Including a bit of back story about a set of tea making pics that have been pinned on our fridge for a few years.


LB rocked the tea making with some novel adaptations. And a cheeky bit of sprinting that still makes me chuckle.

The footy guy nights

old pics (2)

Most evenings, sitting in the front room, I end up looking at the floor. And think about LB. And spaces. Wow. He did a number on spaces. Occupying different spaces within our space. Like sleeping on the Billy bookcase as a tot. Or hanging out in the swing bin. Now that sort of space isn’t occupied it’s odd/hard to remember it ever was. Who lies on their side on the living room floor? Across years…

Back in the day, the footy guy nights were a pretty unremarked upon part of family life. Like so much other stuff. Absorbed into our ‘normal’.

old picsI look at the floor and wonder how he fitted. With Chunky Stan, and the Playmobile audience. It’s a tiny space really.

There was no guessing when the box of ‘footy guys’, goal and makeshift ball would appear. In a seamless and low key celebratory joining in of a mainstream footy event. In his own way. How the hell did he fit in that tiny space?

He sort of studiously ignored the match on TV. Applying sometimes silent, focused concentration on his match. Remarkable really as footy fell outside his typical interests. At the same time, he was fully engaged in the moment. Some of the real time match entered his commentary but his match had its own dynamic. And own moments. LB was no slave to premier antics. old pics (3)

I loved these footy guy nights. I loved his absorption in the match, played out with a ball made of scrunched up paper and Sellotape (made after the original tiny ball went missing). I also loved (without realising it at the time), how everyone fitted around him. Picking across the guys to sit down. Respecting his engagement.

LB kept his footy guys in a Spongebob box. The goal and ball were stored in an old CCTV camera box. Which doubled as the second goal. Everything carefully packed and stored in his room until the next time.

I photographed this one evening. I don’t know why. Or why that night. January 29 2011. He was 16. Capturing a school boy. Absorbed in doing something he loved.

As he should be.

old pics (1)


Memories, grief and ‘old’ social media

Yesterday I was a bit thrown by facebook chucking up a post from December 31 2012. Bloody facebook I thought. That was a curveball.


First thing this morning, Mark Neary tweeted about his distress at watching a video with Stephen, of him and his classmates doing Bananas in Pyjamas fourteen years ago. Given that half the kids were now in ATUs, miles from home in residential provision or dead [dead?]

I replied to say that Fran had a picture of her son James, LB and another classmate as cheerful chappies in primary school. Not a care in the world. Not a sniff of what lay ahead of them: in various ATUs for over two years (mostly in Newcastle), James’ experiences touched on here and LB. Three classmates. In a class of about ten. Now aged (if still alive) 18/19.

What happens to these kids is simply inhumane and should stop people in their tracks. They are just kids. Like any other kids. And yet their lives seem to close in on them once they reach adolescence and the toxic space called transition. Which involves, sooner or later, a varying combination of the misuse of the Mental Capacity Act, financial stick waving by the local authority or clinical commissioning group, ill health and/or a cutting off/sidelining of family love and care.

I had a scooby back in time on facebook tonight. I’m not a big facebook fan but am a sucker for any LB snippet. Trying to hold on to him. Trying to keep him ‘alive’ in whatever space possible.

This was a bittersweet experience. Lovely to be reminded of happier times. But also dates leaping out at me. The happy hippy wedding was almost three years to the day to the day he died. And reminder of context I’d completely forgotten about. Anna Chapman. (Who?)

fb stuff2

The interactional context was also warming.Throwaway comments at the time. Chat. Or banter as Tom calls it. The grounding of LB’s life, and our lives, in a space in which family and friends commented in the moment, later, or returned to photos after LB’s death.

And then there were just posts.

fb stuff

I’ve only been able to dip into, and quickly out of, old blog posts so far. But I’m glad I captured those moments of everyday life. I’m glad I used to be forever snapping happenings/’non’ happenings with my camera. Capturing the life of a young dude whose life was worth nothing within NHS/social care spaces of ‘care’.

LB’s shortened (howl.howl.howl) life enriched, added colour, illuminated, made human what was seen to be less than human, and just was.

He was delighted to win the prize for achievement and endeavour in July 2010.

Pain, Dan and the dentist

I’ve had a toothache on and off for a while now but ignored it. Pain schmain really. That’s the name of the grief game. Then it got worse and the dentist prescribed root canal treatment. I got a cancellation appointment for this afternoon. I was fairly practical about the whole gig. Noshed a load of pasta and tried to think what I’d do for the 45 or so minutes it would take. One good outcome of this whole happening is that I’ve ditched a load of worries/concerns. I got some new ones but happy to get shot of dentist fear.

As it was, I thought about LB. And the last time I’d been to the dentist with him. Sitting in the same chair. He loved his dentist. Dan was like a young Indiana Jones. A bit nerdy, enthusiastic, funny and clicked with LB straightaway. (LB had been banished to a ‘special’ dentist after biting his original dentist there when she tried to x-ray his mouth). We smuggled him back in a couple of years later and he was assigned to Dan. From that point, dentist trips were a highlight in LB’s social calendar.

In between appointments “Where’s Dan mum?” was a constant refrain. Often (not sure why) on a Sunday evening. I ended up concocting a bit of a life for Dan to satisfy LB’s questions.

“Where’s Dan mum?”
“Dan? Ooh, I should think at home now…
“Where does Dan live mum?”
“Mmm.. I think he lives in Boar’s Hill..”
“Does Dan have a girlfriend mum?”
“Has Dan got a car mum?”
“Yeah, I bet he’s got a sporty number.”
“Why mum?”
“Cos he’s a sporty type of guy.”

And back to the beginning.

Funnily enough, when he was at the dentist, LB was pretty quiet. He did what Dan told him with some gravitas. And a bucket of cool of course.


The unit staff took LB to the dentist last June. They were surprised the receptionist wouldn’t tell them when LB had last been.

Dan had left.

So the story changed. For a couple of weeks.

“Where’s Dan gone mum?”
“Dan? Blimey, he was heading places. I bet he’s set up his own practice somewhere like Harley Street.”
“In London mum?”
“Yes. In London.”
“Where’s Dan mum?”