Heartwarming post arrived yesterday lunchtime with a set of stitching materials from Janet, my PhD supervisor some years ago now, and a funky, customised phone pouch from H, a young family friend who went into hospital recently. Love em both.

Janet is a stitcher. An exceptional stitcher.

We organised a ‘Crafting space for Conversation‘ workshop at a Disability Studies Conference in 2010.  This was with a game colleague who said he’d bring an unfinished Airfix model from his childhood to crack on with. Both he and I stitching novices. The session was a bit wacky but it worked. We sewed, scribbled, knitted and quietly talked for the hour. The idea of the workshop grew out of our increasing  resistance to the circular, sometimes dogmatic and stale ideas that tend/ed to dominate disability studies. From the conference blurb;

“While this form of activity is more often associated with women and the domestic sphere, there is a long and honourable tradition among both men and women of using stitch to express identity, facilitate communication and offer resistance, particularly at times of confinement or oppression. For example, in the Pinochet years groups of Chilean women recorded scenes of their lives, First World War soldiers embroidered ‘trench cards’, Arthur Bispo do Rosario, fifty years in a psychiatric hospital, created stunning representations of ideas significant to him, using scavenged materials and so on. While the ‘artefacts’ and what they represent can be important, what happens to individuals and interactions during the process of creating something (however modest and private) may prove to be equally interesting.” 

Janet wrote and said she’d been thinking about stitching a copy of one of the pictures LB drew of a bus. Splashes of bright red and blue. A vibrant, lively, quirky picture.

On reflection, she sent me the materials and explained why.

The letter made me cry. I was so moved that she’d thought about doing this, and her thoughts about doing this. I wondered if I might join the stitching sisterhood (even though my stitching skills have always been pretty rubbish). Maybe it was time to learn to stitch as a form of resistance.  Resistance to the deeply oppressive process that lies ahead. Resistance to the rage, futility and despair generated by communications and nonsense going-ons that surround an internal NHS ‘investigation’. An ‘investigation’ into something that should never, ever have happened.

And stitching as a way of focusing on and delighting in LB’s unusual brilliance.

H is also passing time crafting and stitching. A kind of bricoleur working within the confines of a different NHS setting. Drawing on materials to hand to create. Engaging in action, activity and communication. The process as therapeutic in different ways, I hope, as it is a delight to receive such a gift in the post.

So, warm thanks to both of you. Stitching army extraordinaire.

Mum. An enormous word. For a tiny set of letters.

Mum.

LB eventually understood I was his ‘mum’ and ran with it. As he tried to make some sense of a sometimes challenging world. He used the word ‘mum’ more any other (even the old favourites like buses, Eddie Stobart, septic tanks…) For 13-ish of his 18 years (he arrived late to speech but made up for it), the word ‘mum’ consistently prefaced sentences when I was anywhere near striking distance. ‘Mum…Mum?’ ‘Mum?‘ There could be twenty ‘mums’ before anything else was said.

It drove me to distraction at times.

Now I ain’t claiming any special status, or a ‘super-mum’ identity. I was no super-mum. Quite the contrary. Particularly when it came to domestic type duties. Cough. Cough. And I could go away without him missing me. He was more than happy hanging out with Rich and the other kids.  But I was his mum. His constant.

A constant in a life that became increasingly bewildering, confusing and incomprehensible.

Mum. Someone he could rely on. The ‘just you and me Mum’ outings. The foyer incident. The re-assurer, after he learned about his diagnosis of a chromosome abnormality and then later, epilepsy, that everyone had got ‘something’. And if they didn’t now, they would at some point in the future. He’d often ask what people/animals had ‘got’, and we had a chuckle mixing it up; Chunky Stan had glaucoma, LB ‘trucks’, Steve Wright ‘dj-itis’.

“Dj-itis Mum?”

I was, like other mums of dudes like LB, a fighter, defender, protector, advocate, manager. A key worker trying to craft an imagined future for him. In a world in which imagined futures for dudes like LB are rare. The bar set so appallingly and unacceptably low. On every count.

A person who loved him beyond life.

He fully expected his mum to collect him from the unit.

But I didn’t.

Had a long kip this afternoon and woke feeling sadder than sad. Tears and darkness. Payback for trying to reduce grinding exhaustion. Bloody grief. Bloody crap old everything. Time to draw on happy memories and have a ‘fun times’ breather. And what better place than the trip to the London Dungeon? August 1st, 2006.

I took Rosie, Will, LB and Owen. Tom not happy that he wasn’t old enough. We fast-tracked to avoid the queues (Yeah, fast-tracked. Give it up you fast-track enviers/doubters/deniers/challengers.  You don’t know the half of it. Fast-track. A rarely spotted perk for the “disabled family”. One of the few times unusual challenges are openly recognised and responded to effectively). We fast-tracked. Clutching the blue disabled parking badge to prove our fast-track credentials (Yep, it ain’t a perfect system). Anyway, we were in. Quickly, smoothly and without agitation.

Kids (ours and others) instantly on edge. Darkness, chilly stone corridors, fear lurking in every corner. Growls and groans. Buckets of blood and gore. Staff who delighted in generating terror.

And LB was off. From the moment a ‘statue’ brushed a cobweb across his cheek, causing one of his (unnamed) brothers to do a cartoon, on the spot, scarper of fear, LB had a joyful time. Drenched with magic, fun and laughter. Not surprising really given the combination of London and a Horrible History type engagement.

We were herded through each horror area with a cohort of families. LB consistently picked out. He sat in the dock and received a sentence by the judge. Giggling uncontrollably, infectiously, as he was sentenced to death by boiling, or some other hideous punishment. He laughed his socks off as he was dragged out of the crowd to be the plague doctor’s sidekick. His merriment and joy a perfect foil to the mix of banter and horror chat.

His laughter, engagement and fearlessness a balm for terrified children there (including our own, erhem, no names and all that…)

When you have a child who is so far removed from being picked for anything because s/he is systematically and structurally removed from the ‘pick pool’, it’s a magical moment when they suddenly/unexpectedly are.

Dazzling. And priceless. A good day.

Dear NHS Trust internal reviewer,

I understand you are about to start an internal review into what happened to our son. An internal review. I’m not sure how you can effectively investigate the potential failings of your own organisation but hey ho. It’s as if we now exist in some bizarre netherworld where nonsense rules.

“Hey guys, what happened here?”

“Nothing guv. We followed the rules. Honest.”

“Okey dokes. Well crack on with the good work. Catch you laters.”

I don’t know if you are aware of this, but LB never once left the house without someone with him.  He needed more care than most. He needed actively protecting. This is probably the part that breaks my heart the most. We gave him that level of care and protection for just over 18 years. I was, like most mothers, a mama lion. Fiercely protective of my cubs. Instinctively protective. Particularly the one who needed it the most.

We assumed this level of care and protection would be replicated in the unit (without the love of course, and without genuine empathy even). We assumed he would be safe.

Somewhat ironically, we’d already made an official complaint against the Trust and local authority in April. A PALS complaint or something,  I still have no idea what PALS stands for. It was a comedy complaint really. The outcome was an assertion that LB received an acceptable level of care before he entered the unit. He died two weeks later while I was still in the process of responding to this.

He died two weeks later while I was still in the process of responding to this. 

There isn’t an awful lot more to say after that sentence. It’s a bit of a game stopper really. And this is a game. A crappy old game in which we have little power and no say over the rules. A game we never wanted to play. A game I despise.

I haven’t just written to rant as that would be a bit unproductive, although vaguely satisfying for me. So I’ll end with two requests. Please don’t use acronyms or jargon in whatever you end up writing.

And please don’t lose sight of the exceptional dude LB was.

Yours faithfully,

Sarasiobhan.

Rich and I met up with Sam on the bus this morning. Nearly a year since I met him and Doreen on the same bus. At the same time of day. At a time when LB was a cheerful pup. With no sniff of what was to unfold, so quickly. So unexpectedly.

I was glad to see Sam. Meeting other young dudes is something I love. I miss the colour LB brought to our lives on an almost daily basis. So effortlessly. An old tweet reminded me of how, when I’d asked him what he wanted to drink last New Year’s Eve, he’d replied “The fountain of youth”.  Without missing a beat.

“Hey, Sam! Are you off to Brookes?”
“Brookes, yeah. The bus is going to be full of people in a minute. So many students. Arghh!”
“Oh, yeah, Freshers week starts today. I forgot.”
“Freshers week. Yes. Students can join Keen and Mencap Oxford.”
“Very cool. Keen is brilliant. LB loved Keen Teens.”
“Keen, yes. It’s on again soon.”
“Yeah it must be. In a week or so?”
“October 14th. For Keen adults. October 14th.” [chuckle]
“What do Mencap Oxford do?”
“Seven o’clock club.”
“Ah, when’s that?”
“Tonight.”
“What do you do at Seven o’clock club?”
“Bingo. And other stuff.”
“Ah. Sounds good. What you up today at work?”
“Doing the dishwasher.”

Rich cried when we got off the bus. I didn’t.  I couldn’t believe the activities Sam mentioned (and seemed to love) were both run by charities.

And since googling the Seven o’clock club, I can’t believe it has an age range of 14-95. Deep breath. Fourteen to ninety five… And is over-subscribed with a waiting list.

An oddish thing has happened since LB died.

My bar of what is acceptable has taken a pounding.

‘Eh? What? Of course none of it was/is acceptable. Rage, rage, ragey rage… Whaddaya talking about silly?’

Mmm. If only.

The acceptance of the unacceptable is common when you’re a parent of a disabled child/adult. Well, and among commissioners, providers, health and social care professionals, support workers and so on. Particularly in the fabric of ‘learning disability provision’. The bar set so low that accepting mediocre becomes a default position. We’re almost socialised to create an ever present bag of excuses and rationalisations for non-existent, inappropriate or partial services.

Our bag steadily filled through grinding years of negativity, deficit/tragedy orientated thinking, assessments, meetings, input by (often ill informed) ‘professionals’. Through jargon laden discussions, unintelligible emails/letters/reports and of constantly being told, explicitly and implicitly, that resources were limited. There was never an imagined future for LB. The vague future bandied around was mealy mouthed, thoughtless, mediocre or worse, budget driven and set within silos of ‘available service provision’.

We didn’t accept the unacceptable without challenge.  The (implicit) response generally one of two along similar lines;

1.  ‘A lot of families have less…’
2. ‘If you demand more, some poor other buggar will end up with less‘.

And challenging the unacceptable is a cracking way of earning a pushy mama badge. A fast track to being described in reports/notes as ‘difficult’, ‘hostile’, ‘in denial’, ‘over-protective’. When dudes turn 18, especially if they enter some hellhole like a ‘treatment and assessment’ unit (yep, they’re still open for biz despite the post-Winterbourne outrage/work/reform/recommendations) p-mamas can ‘legitimately’ be obstructed, diverted, shut out, repeatedly told they’re the problem. The choice/personalisation agenda, supported by the handy misuse of the Mental Capacity Act, becomes a stick to beat these jumped up p-mamas back. Away from the dudes they’ve loved and looked after for 18 years or longer.

But what about family love, encouragement, support and care? Surely that’s an important ingredient in people’s lives even after they reach the age of 18? Mmm. Well the (often) good old family input seems to be typically minimised, missing or deleted from official records. Effectively and neatly creating a medical model of families of disabled young people. Family members pathologised, labelled as ‘the problem’ and subject to ‘cure’ (distance/removal).

Things have changed for us suddenly. And devastatingly. Clarity gained through unimaginable horror. [Bit of an oxymoron, sorry, but as ever in trying to write about this, I’m left to kick over and use words that don’t fit, that don’t work, that can’t convey what is].  A tweet mate this morning commented “I could hug you until the end of time and it would never be enough”. Yep. That works. In perfect simplicity. ‘Enough’ has pretty much disappeared from my expectations which are hovering currently at a level of ‘shit’, ‘total shit’, ‘overwhelming shit’ and let’s ‘try and beat the shit back and try and regain some semblance of ‘normal’ life even if only for a second’. Exhausting.

But the grinding, wearing, ambiguity and ‘fear,’ generated by the relentless telling of the limited resource story, the wielding of the choice stick, is now meaningless. We can look at LB’s life from a health and social care perspective and recognise the unacceptability of what he/we experienced. Ending with the most devastating unacceptability possible.

We can also reflect on over seventeen years of joy, love, hilarity, warmth apart from service provision. We can chew over and laugh out loud at memories of LB with a remarkable group of different people, family and friends, who knew him well, loved him or just knew of him. We can draw on photos, video clips, weekend news accounts, pupil of the week sheets, DVDs of school trips, blog posts, and seemingly endless memories of a remarkable dude.

Time to transform what is ‘acceptable’.

I started writing this on Thursday night. In a student room in a hall of residence at York University. At a medical sociology conference:

Work. My ‘career’ has been indelibly influenced and shaped by our family life. Rich, through his constant encouragement/engagement (and numerous camping trips with the kids to create space for study/work). And the kids for simply being and doing, in their different ways. These experiences are interwoven in everything I’ve done, everything I’ve researched and everything I’ve written. With LB leading the way. Love him. 

I fell asleep at that point. Probably sensibly. It had been a long day. Sort of slipping back to work (but with space to withdraw). Tears on the train at Derby (unexpectedly). A presentation about diagnosis of autism in adulthood (flakey but got to the end). Catching up with lovely, lovely people. And wine in the bar in the evening. Not bad really. Relief that I could be in a work space without howling, pummelling the floor or lobbing out random swears.

I talked to a couple of people I didn’t know about what had happened. People who, in some way or another, generated a telling space. Both coincidentally not had recently experienced intense family experiences/horrors. Both were quietly compassionate and knowing.

I also told the taxi driver on the way to the station the next morning. He chipped away cheerfully, interrogating me about my recent work/summer activity until I told him. This telling was probably related to breakfast with a delegate who chatted about her research with bereaved parents of children/adults with a degenerative condition. Her enthusiastic chat was piercingly uncomfortable. But I said nothing.

‘Eurgh’, I thought as I walked away. ‘Why didn’t I say something?’ Awkward.

Not saying in that context creates a horrible, empty space. It makes interaction fake and meaningless for the non-teller. But what a conversation stopper? How to introduce such a brutal, such a shocking, horrifying, distressing happening? Most parents’ worst fear realised, in a setting commonly held to be life sustaining. A ‘safe’ space. (Yep. We now know what ‘jaw dropping’ looks like.)

Goffman would have a field day with this. I love the Goffmeister, as hardened readers know, but his recognition that ‘disrupters’ are obliged to try to minimise disruption to interaction means phoney smiles and small talk/phatic communication. Which is crap.

So, I told the taxi driver. He listened, and told me about his friend’s son who died unexpectedly a few years ago. We talked family. At the station he warmly wished me all the best. Small talk? It doesn’t have to be. There is a middle ground. We’ve just got to learn to negotiate it.

Blimey. This is a right old tough gig. Just shite. The enormity is not getting any less enormous. I still blub at the oddest things. The (craphole) pub up the road closed the other week and is boarded up. That set me off as I thought ‘LB will never know the Quarry Gate shut…’ We only went in there once for a firework display about 10 years ago? Why would that matter to him? Then other things I’d expect to upset me, don’t.

I got to thinking about sweet day sweets today. Every Saturday morning the kids got 50p each to spend on their ‘sweet day sweets’. They bargained and bartered with each other to do deals and ‘sharesies’ to maximise the sweet to cost ratio (threefertwos always a hit). Discussions would sometimes open on Friday evenings and they would even roam further than the local Co-op in search of the best sweets. But not LB. He chose a packet of fruit pastilles every week.

One of the things I’m struggling with, is making sense of him no longer being here. I’ve read accounts where people say things like “X wouldn’t want me to spend my life mourning for her or him”. Our lovely minister woman sent through her suggested words before the do which included something about LB not wanting us to have any regrets. This caused me to weep for a couple of hours, as I ferociously tracked changes through the draft. LB wouldn’t think that. That’s threefertwo/shifting sweet source sort of thinking. Not fruit pastilles every week.

He loved us. He loved buses, lorries and septic tanks. He loved Chunky Stan. He couldn’t stand David Cameron and he found Simon Mayo boring. He believed the police protect people and catch criminals. He had complete faith in the legal system. Fruit pastilles. He didn’t have the ‘nuanced’ thinking that means I can ascribe abstract thoughts to him around what he would be thinking from afar (wherever that may be, if anywhere). He would be thinking about going to Trax tomorrow. Or whether buses were roadworthy.

I get to this point and it becomes too much to think about LB being failed so devastatingly by the crapshite system that is health and social care for dudes. He was better than the system.

And he’d probably have been better off if we’d taken him to the pub up the road in March. Rather than the unit.

There is no sense to this at all.

One of the ‘Just you and me, Mum’ birthday gigs a few years ago was to do a ‘hop on and off’ Big Bus Tour of London. LB and I caught the Oxford bus to Marble Arch, nipped into Oxford Street to buy some lunch (LB chose a pasty and coke while I had bean salad and water) then boarded the tour bus. Blue route tickets. The extra long route. We sat upstairs in the open air. It was a brilliant, sunny November day. “This is exciting isn’t it?” I said to LB cheerfully.

After the first few stops at London landmarks, it became apparent that he didn’t want to hop on and off. Or do the free river tour included with the tickets. He wasn’t budging. Even the Tower of London didn’t tempt him off his seat. The sun dropped down behind the City buildings and it became grey and icy cold. Sitting on the top of the bus.

“Gotta huddle LB, it’s freezing!!!” I kept saying to him, trying to lean into his skinny bod for a bit of warmth. He just ignored me. “Wish I’d got soup and coffee… crappy old salad and water,” I grumbled. Silence. LB was the picture of contentment, soaking up the sights and sounds of his favourite city. He didn’t want to talk to me. And he didn’t pay attention to the commentator, who kept telling us to look in certain directions to see particular landmarks. After a few times of trying to get him to look in the ‘right’ direction (for whose benefit?), I gave up. We sat in silence.

By the time we got back to Marble Arch just under four hours later, I was a block of ice. It took until we arrived at the Park and Ride in Oxford before I started to warm up. And the Oxford buses are always snug, warm spaces. What a day, I thought at the time. Chewing over the idiosyncrasies of having a child like LB.

I’d sit on top of that bus in a snow storm now. I’d sit in torrential rain. A thunderstorm. Anything. Just to hang out with him again.