I started writing this (in italics below) on Thursday evening. To try and create a measure (I know. Sorry. I am so anti-measuring anything but I couldn’t stand this drifting, shifting, murky, sometimes tedious, sometimes stifling, seemingly pointless (in productive terms), miserable grief existence that was blanketing me). I gathered spontaneously offered timelines from people who had gone through unexpected death (either recently or decades ago) trying to get some idea of how long these feelings would continue, develop and change.

Seven weeks today. Here’s where I’m at with ‘grief’:

• I cry less.
• The feeling that my brain is constrained in a sieve-like, fogging vice device remains.
• I’m dog tired all the time.
• I can almost cheerfully spend chunks of time with family and friends. 
• After any time of ‘cheer’, I have crushing feelings of deep sadness (of varying length) that are hard to deal with. 
• I get moments of breathtaking almost panic attack type induced despair sparked by anything and seemingly nothing. 
• I no longer feel the urge to tell everyone I pass on the street what’s happened. 
• I dread seeing people who may not know. Like LB’s old nursery school teacher outside the bank today. Does she know or doesn’t she? Dread if she does, dread if she doesn’t.
• I constantly re-live what happened and rage at how and why? 
• I miss LB. So much it hurts.  

This reflection was derailed with the latest email from our solicitor. My ‘current’  grief state’ crushed.

The extremes to which we are being pushed are remarkable. Given everything that’s happened. And what is going to happen in the months (years?) ahead. How this unimaginable happening is going to be explained, accounted for. It’s more than enough to catapult any parent (sibling, family, friend) into an unspeakably dark space.

I get messages from people I know and don’t know, about being strong. About being able to articulate this atrocious experience objectively. About the importance of doing so for dudes like LB. Yep. On it. I/we agree. Completely.

But the dark space is becoming darker the more we find out. It’s a toughie.

So. After the latest ‘news’, I’m going to put it out there and say that I hope there are people in the health and social care world with influence/power (humanity and decency) who are prepared to say “Enough is enough”. People who wont breeze over/ignore or sideline the mountain of evidence highlighting the premature deaths of learning disabled people. It has got to stop. Things have got to change.

Oh, sorry. Silly me. I got carried away there for a minute. I’d almost fallen back into the world of sunshine, support and fluffy dogs. Written pretty much a year to the day LB died.

Current grief state? Complete and absolute despair.

LB was born in a bath at home. A messy old biz but he came out happily and loved baths and swimming from that point.

I always loved baths too. A bath every evening, for at least an hour, starting with an academic article or the paper and then a trash read. Richard and Judy Book Club. Glossy mag. Perfect. Glass of wine and peace, apart from kidlet interruptions largely managed by Rich. In our old house LB’s bedroom was directly opposite the bathroom. I can remember for about a year, when he was six or seven, and he would constantly stand by the stairgate at his bedroom door and ask “Are you my mum, mum?”

“Yes, of course I am. Get back into bed LB”, I’d say. Over and over again. It was a mixture of baffling irritation. Years later, I interviewed a mother who said that when her (autistic) daughter began to learn categories of things, she wanted reassurance that she had got the right things in the right category.

‘Awww’, I thought, on the train home from the interview. ‘LB just wanted to check that I was his ‘mum”. So simple when you know.  These dudes don’t come with manuals though and support tends to overlook these kind of things. A small suggestion for psychiatrists/paediatricians/educational psychologists…(well pretty much anyone in the learning disability field); an early focus on helping parents to understand their children better may be more productive than framing them in deficit terms from the get go and trying to reduce ‘unacceptable behaviours’.  But hey ho. Right now I can’t see how the rot and accompanying malaise that riddles health and social care provision for learning disabled dudes will ever be treated effectively.

Anyway. Back to baths. Well they’ve pretty dried up in our gaff. I haven’t had one for over seven weeks now.  Another fucking loss, albeit on a tiny scale. This means I’ve gained around 9-10 hours a week of time. Add to this the time I no longer spend looking after LB. The time I’ll no longer spend in meetings about him, on the phone ranting, complaining, filling in nonsense forms, trying to organise support, doing direct payment returns and the like. I’ve probably gained about an extra day a week.

What to do with this time? Here’s where I’m at;

• Attempting to transform myself into a lean, mean fighting machine with a funky exercise regime. Nah. Unlikely.
• In the pub last night, watching men with their treasured sticks (bats?) concentrating intently on knocking down some white thing, I briefly considered taking up Aunt Sally. I could even join a local league team. Nah. Suspect I’d be a bit too aggressive at the moment. At risk of randomly violent stick/bat action.
• Rich has pretty much decorated the whole house in the last few weeks, love him, so home improvements are out.
• I’ve thought about writing a book about our experiences but whenever I move from ‘blog’ to ‘book’, I come over all Mills and Boon. Not good.

I suppose really I just want to be back in the bath. Book in hand and LB bouncing up and down at the door. Asking me if I like Irish lorries or when he’s going to Trax again.

Well I ain’t a philosopher. And other than my now fairly lengthy adoration of all things Eva Kittay, I haven’t read much ‘philosophical’ stuff. I probably should. But I keep reflecting on the nature of the health and social care emphasis on choice and agency and what this really means for the life chances, opportunities and aspirations of learning disabled people.  Alan Roulstone, at the recent disability conference in Finland [sigh], challenged the notion that complete self determination/independence for learning disabled people is either widespread or desirable. I’m sure there is a shedload of research about this but I’m chucking my hat into the ‘it ain’t necessarily desirable’ pot based on good old fashioned experience.

We’ve finished sorting through LB’s belongings. A beyond sad task.

His choices shine through here, in some ways. The consistency of these choices over so many years made it a particularly heart and gut wrenching task. There was so much well worn, familiar and much loved stuff. Dating back to when he was a pup even.  And then more of the same. Different colours, newer versions.  Not really replacing the earlier stuff (buses, lorries, books) but more a manifestation of normative present giving rituals that meant gifts were given, whether LB wanted them or not. Er, agency anyone? What does this really mean?

Our strategy for sorting the ‘special’ stuff to be stored in the chest in the bedroom, was to select the most used and well worn items. We could have picked these blindfolded. Family and friends were attuned to what LB loved, what he liked and what he wanted. He was surrounded by stuff that reflected his interests, his delights, his life. This was not only purchased objects – myriad buses/lorries, Eddie Stobart memorabilia, books and DVDs – but there was a generosity of time, thought and patience invested in making things or doing things for LB.  Cards, photos and mermaid related stuff from school, customised bus tickets and drawings by his siblings and friends.

A die cast lorry transformed into Lightning off Cars.  A cardboard box version of The Mighty Boosh boutique shop for his Vince and Howard figures. Carefully drawn pictures of various lorries, buses and prisons for him to colour in meticulously. An 18th birthday hat fashioned by Charlie’s Angels at school. The notebooks he filled with drawings and figures with words/additional figures drawn by others. Contributions that made LB smile. He delighted in people joining him in these spaces. Pure enjoyment.

Pure imagination.

I think the emphasis on choice and agency is a bit misplaced really. Particularly when it ends up being a divisive tool. Either explicitly used to distance people from their families, or when this happens unintentionally.

It strikes me that the core ingredients for a ‘good life’ for learning disabled people are family, friends, (enlightened?) understanding and familiarity, aspiration, imagination and a good dose of collective giving/caring.  Policy statements/prescriptions about the importance of choice carelessly transmitted to untrained, poorly paid and unsupported staff ain’t helpful. And could generate space for misinterpretation, misunderstanding and/or abuse. I wonder if policy makers should ditch the jargon and acronyms, shake off the dusty old coat of worn out, abstract discussions that bear no resemblance to the lives people are actually living, and go back to basics.

Finished sorting LB’s stuff yesterday. A terrible, distressing task. But it’s done now. And there were more treasures. Including a third ‘LB rocks!’ notebook. And this one. With different things written on each page, some ticked. LB’s spelling can be a bit colourful at times but we deduced some words from clues gained from the word before or the word after.

In order:

red police van
policeman
police cars
pcos
riot vans
riot police
sniper squad
armed officers
police dogs
organised crime unit
police station
hoodies
school
buses
hospital
police women
people
teachers
headmistress
cctv cameras
bus stops
shops
pubs
houses
parks
supermarkets
bus depot
restaurants
fish and chip shops
takeaways
McDonalds
Wimpey
garages
coaches
double decker buses
mounted police
clubs
bars
colleges
motorways
service stations
underground
Tescos
Sainsburys
Morrisons
Asda
Waitrose
tow trucks
Pizza Express
??? (1)
foreigners
French people
??? (2)
Indian restaurants
??? (3)
Spanish people
Irish people
Frankie and Bennys

The three outstanding words are pictured here.

In the order they are missing. Bit of a puzzle for a change.

Tonight I looked back at the photos I’ve taken over the past six weeks. I take photos whenever I can. I always have. Funny, odd, sometimes irritating and sometimes inappropriate I’m sure, from the perspective of other people, but that’s what I do.

It felt largely ok to look at the photos. Of the night of the do, out in the garden. Busker John playing the guitar by candlelight. Photos I took earlier that day. Early morning when I couldn’t bear to be in the house any longer and wandered around the park, along the London Road, retracing various paths. The path to diagnosis via the GP surgery to the JR Hospital. Photos of the kids and their mates the day LB died. Hanging out, grieving, laughing and just being together.

I went back past the photo of the Relatives Room at the JR and came across pics I don’t remember seeing before or taking.  Photos taken at Gloucester Green market. The morning LB died. I have no recollection of taking a detour through the market that morning. None whatsoever. I can remember getting a text from Fran while I was on the bus to work, asking if we were planning to take LB to the school ball the following evening.

“Ooh, not thought about it, will ask him later. xxxx”, I replied.

I must have got off the bus, walked to the office through the market and taken the photos. Less than ten minutes later, I received the call from the unit psychiatrist on my mobile. Just after switching on my computer and putting my lunch in the fridge.

Ordinariness colliding with the unthinkable. Captured, in part, on film.

Still can’t make any sense of it.

To try and keep in a less sad space, here are some more recollections from the do and after;

Just a few quotes from a li’l 7 year old to an 18 year old;
“Do you really have hounds in the back of your car?  Will you release them if I don’t do my maths?”
“Amy?”  “Yeah?”   “You’re beautiful”.
Treasured memories.

I’ll never be able to look at an Eddie Stobart or a bus without thinking of your splendid LB (and the travel industry!)  The world was a better place for him I’m sure.

LB was always so content in himself, I think more than anyone else I’ve ever met. I always admired that.

LB – you look like Romain Duris, very strange!  Beautiful!   Remember when we were in France, you kept asking ‘Why’? Until Sam told you to turn your whybox off!  Peace out dude.

T and Z always talk about when we went to London Zoo and on the way home we got off the London bus which started to drive off, and Sara thought LB was still on it.  She started banging on the side of the bus.  LB, who was standing behind her, said “Wot you doing Mum?”  They will miss their funny cousin.

LB, we will always remember you for that massive beaming smile, and your love of many different foods, especially the Branston pickle.  I always relish the memory of playing  football with you and your brothers. You kept telling us “I’m gonna get drunk tonight”. You made us laugh over and over.  I’m gonna have a good drink tonight LB and remember all those happy times.

LB – big smile at the mention of “Death’s Door.”
“It’s an outrage!!”
Vote for Pedro.

I’ll always remember our 2^nd holiday to France in 2006 when LB collected all the empty pizza boxes, put them on the back of a skateboard, sat on it and drove them down the chateau’s corridor, delivering pizzas.

This was at the same time he got a splinter in his foot, and despite Andy having removed it, LB still maintained he could not walk properly, so kept asking people to carry him up the stairs. This proved tricky as his bedroom was on the third floor, and he would inevitably have left a bus downstairs so had to go all the way back down minutes later.

This third floor bedroom was the one which Connor threw his model “Vince” from to see if he could fly.   It turned out that the 3^rd floor descent was a fatal fall and poor Vince came to pieces. LB buried him by a tree in the garden.

Thomley Hall where a great friendship started despite James P. knocking both your boys down a hole.  I will also never forget LB at the CPA saying “load of bollocks” under his breath.

LB: “Where do you live?”
Me: “Wheatley”
LB: “Near Plaistow’s Coach Company?”

Malvern Hills Residential
“Jackstar”
“What’s up LBstar?”
“Got the same shoes”
“Wow, shoe buddies”
Then that smile all day whenever LB saw my shoes. Just love him.

My favourite LB story, think it was my second day at JWS, it happened during one of my lessons. (Can’t remember what it was about but I can remember it wasn’t anything to do with colours!) I was still talking when LB said, “Is your mum black?” “No” I said. “Is your dad black?” “No”, desperately trying to get back to my lesson. LB said, “So why aren’t you black?” I stopped and said “LB, I’m really confused!!” He paused a while and said: “Me too. You’re from Africa so why aren’t you black?”

Rosie and I have worked through a few bags/boxes of LB’s things in the last week or so. We came across a notebook in our first box which was unused other than tiny colourful squares on the margins of every page. ‘Now that’s weird’, we thought. ‘Wonder why he did that?’

Then the other day we came across the two big ring binder notebooks he seemed to really love. One was filled with pictures of Tom Chaplin. The other with pictures of the ConnorCo removal lorry. The penny dropped. Totally genius.

We’ve been pitched into such a strange, howling ‘non space’ in the last six weeks. Yep, it’s six weeks tomorrow morning. My head remains in a ‘shrieky/turmoil ridden/too, too awful to fully engage with anything’ state of agitation. My heart? Well, I can’t go there. Not sure I ever will.

We had two days this week in London with Tom and Owen. As we’ve done for the last couple of years. This was ok-ish. Thanks boys. We had fun. We chatted, we wandered about. Rich and I walked round the Serpentine while they explored Oxford Street. The open water/countryside type space that allows me to breath. Later, I swallowed my irrational fear when the two of them went on the Star Flyer ride on the South Bank.

I managed to keep the anguish largely confined to moments in between family time. When it was just Rich and I. Between remembering LB moments. The camping trip a couple of years ago when LB announced “I know nothing about fishing, I just know about women”. Re-living memories of the ‘do’. The do that’s becoming a cornerstone of our reflections about LB. That it was as good as it could have been, an enormous comfort.

And then the many memories of LB in London. The space he loved. He consistently wished from an early age that he ‘was a Londoner’. On the ‘Just you and me mum’ trips that was one of the few things he’d say. On the South Bank this weekend, we reflected on how much LB would have loved the busker standing in the Thames. Singing about Pentax pens. The flame proof moth. What a guy.

I spoke to little sis Sam today. She’s got a rocking bereavement counsellor friend who is happy to give me a call, love her. When you get a waiting list for this sort of gig, it ain’t really that helpful. The Oxfordshire based children’s service, Seesaw, are on it.

Rich and I sat out in the garden earlier, talking about what’s happened. As we do all the time. He thinks I’m doing ok really. In the circumstances. Grief is total crapshite. How could it be anything else? He just wanted me to know that. And I am. It’s unspeakably, indescribably awful. A stifling cage of enduring, unstoppable shite. The whole ‘investigation/inquest and beyond’ stuff is unthinkable. I’ve read and re-read the unit and social care notes. I have some idea about what lays ahead.

What upsets me most in all this is where is LB? Where is our hilarious dude?  How can the processes that will (or are, or may be) creaking into being ever capture who he was? Who he should have been?  I want to know how our beautiful, funny boy will remain visible? As a person. And not just be another ‘case’ to be briefly picked over in some sort of faux ‘important’ investigation/review only to be ultimately ignored. Parked in the graveyard of learning disability and indifference.

I don’t suppose for one moment I’m alone in howling about this. Thankfully.

But I’m doing ok overall on the grief front. I agree with Rich. It’s just a festering pile of fuckingcrapshitebollockfilledtosswank.

Sadly.

The afternoon before LB died I was interviewed (and filmed) about my experiences of being his mum. This interview was to give our research assistant, Sophie, practice in in-depth, qualitative interviewing. The actual interview wasn’t ever to see the light of day, other than Sophie watching it through to reflect on her developing interview skills. Anyone who knows me would appreciate that this wasn’t a task I embraced, but Sophie did a good job and handled what was, in places, a difficult story sensitively.

This film took on a different meaning the next day. It was a record of me chatting and laughing about LB in the present tense. In a way I never would again. Rosie and I watched it together and separately during those sleepless early nights. We decided to make a short film for the after do party. A mix of photos, extracts from the interview, home movies and music. We sat at the kitchen table for hours, sorting through photos, deciding on video/home movie extracts and the soundtrack. Our attention to detail was faultless as we made sure the photo of LB delighting in the confetti thrown at a friend’s wedding coincided with the magical section of Pure Imagination. The lyrics about seeing paradise had a photo of LB sitting on Hergest Ridge with a stunning backdrop.  The film started with a short clip of LB as a babe, sitting in his high chair, laughing his socks off. The chatty bits from the interview had Einaudi’s piano playing quietly in the background. We laughed, we bawled and we concentrated.

I finished the interview with Sophie by saying “He’s made life interesting, he’s made life colourful. He’s great.” And we ended the short film with a blast from Divine Comedy’s ‘National Express’. As it should be.