Going through the posts I wrote and never posted. I’m going to start to post these (well the ones that won’t end up with defamation charges cough cough) to create a more comprehensive record. Some aren’t finished. I’ll include the original date of writing.

31.1.13

Short, not sweet, but want to capture the transition experience in real time.

Huge upheaval, upset and in some ways calamitous moments over the past six weeks or so. LB is back to school for four days a week. The lid is kind of on now, in a piecemeal, minute by minute way. Social services have chucked a load of money at him to cover emergency care (would be good to know where the emergency care is outside of family, and institutionalised spaces, but that’s personalisation for you).

I’m struck by the level of complexity/involvement in every interaction around LB at the moment. What I’m calling the ‘dit.dit.dit’ moments. (A very fast, sharp dit.dit.dit). That’s how I’m experiencing them. A kind of frenetic pinging, round and round my brain;

Let transport know he’s back at school on Monday. Dit.dit.dit. Rearrange work plans (in tandem with Rich) to cover after school because after school clubs/activities are not doable at the moment. Dit.dit.dit. Keep the mobile phone on loud even during meetings. Just in case. Dit.dit.dit. Organise a car parking permit for the first time since starting work. Dit.dit.dit. Make decisions about how much of private? home life needs to be disclosed at work to enable working life. Dit.dit.dit. What about Wednesday when there’s no school? Dit.dit.dit. What about Tom and the other kids? Dit.dit.dit. Dit.dit.dit. Etc, etc, etc.  Etc.

Yikes. Do these moments relate to the numerous articles reporting on the suffering, coping and burden experienced by parents of disabled children that I tossed aside furiously in my earlier research?

Nah.

They are related to (and these are all interrelated):

• A reactive rather than proactive, integrated health and social care system
• Entrenched views of learning disabled people as worthless (or worse) and the accompanying paucity of funding
• A lack of vision, or aspiration, for the lives of kids like LB

We’ve set up a fund. It’s only taken around 3 months to organise and think about, but it’s now in existence and the full details are available here; LB’s Fighting Fund. Basically, in amongst the horror of the events of early summer, we found out that it was hugely important to get legal representation at the inquest. Without this, it would be harder (or pretty much impossible) for us to find out exactly why LB died, and what changes should be made to ensure that no other dudes experience what he experienced. This legal representation is hugely expensive.

So, so outrageously and enragingly unfair. Our son died, in the ‘care’ of the state, and we have to pay. Another example of a stinking system. We are lucky to have an exceptional legal team fighting LB’s corner (this is probably clear from the twists and turns of the past few months), including some pro-bono support (for which we are enormously grateful). We still need to raise in excess of £10,000 over the following months.

While thinking about fundraising, we hit on the idea of producing postcards, greetings cards and A5 prints of a couple of LB’s fantastic pictures. Crowdsourcing funds through selling single postcards at £1.50 (including p&p) with a range of alternatives to suit most pockets. So crack on over to LB’s Fighting Fund and order some postcards. Let’s get these babies pinging all over the country.

PS: This fund is to raise money purely to cover legal costs. If any of these costs are eventually recovered, or if LB’s artwork goes viral and outstrips the legal costs, we will split any remaining money between two charities; INQUEST.org and OxFSN. 

The Trust have commissioned an independent investigation into LB’s death. It will be done by an organisation with an excellent reputation. This is an immense relief to us. Thank you.

For the first time really, since LB died in July, we can sit back and just think about him.

So here’s a little seen photo of him shopping in Asda with the 6th form, in the months before he went into the unit.

And a funny memory from when he was younger. Playing charades one Christmas.

LB’s turn. Bouncing up and down, almost bursting with excitement.

“A film”, he said, with some cheeky prompting.
“A film!”,  we all chorused.
“One word!”
“One word!”, we all chorused.
“TITANIC!!!!” he shouted. With a beaming smile that would melt your heart. Love him.

Parking the NHS/social care stuff tonight. No swears. Too weary. Just a reflection about home life and LB.

We had the big push very early on to sort out his room/belongings and stuff. Agonisingly painful, but the right thing to do.  A new ‘order’; special, special memories in a trunk in our bedroom (the one that LB shared with Owen), other belongings in the loft. Sob.

But the order drifted pretty much straightaway. We’re hoarders. Well maybe I’m the hoarder, indulged by those around me. Memories, mementoes, pieces, delights, treasures, things/objects that have, in the last few months, taken on an aching symbolism. Countless handmade gifts from school; dusty gift boxes/candle holders, decorated with shells, buttons, mosaic. (Priceless) declarations of love, care, affection and thought.

New spaces are appearing. Spilling outside the chest and the loft. The ‘pupil of the week’ sheets (yes, yes, he had so many… what can I say? The dude was a dude and a half…), stacked up behind fridge magnets have been stored away carefully. But other things appear. Hornby figures from LB’s 18th birthday, almost a year ago now, are lined up by the computer where I work at home. With a rogue football figure from his  team of ‘football guys’, a bus badge sent to us by someone who works with Rich, and a stack of DVDs/CDs of photos from school, school trips and home movies.

Preciousness. More ways of keeping our exceptional dude in our hearts and minds. I don’t know. I’m not sure how much we need these reminders to remember LB. But when I think this, I weep. And continue to enjoy looking at the quirky reminders, of a quirky dude. Magnified.

Another week in which the stress and pressure generated by the actions of the Trust has been almost unbearable. I don’t have words to describe what this experience feels like. I say ‘almost unbearable’ because the only other step is ‘unbearable’ and then what is there?

As I’ve said repeatedly for what seems like forever now, the death of a child is any parent’s worse nightmare. To then have to deal with the appalling, pretty much inhumane system that kicks into touch when this happens, unexpectedly, in an NHS setting, is beyond words. I’m at the stage that any update on the latest development in the twisting, turning, shifting, contradictory process makes me cry. Simple as. Very classy.

So fuck off Trust (legal team and whoever else is fuelling this horrible, nasty, destructive and completely unnecessarily designed process) for a few moments. And let me focus on the precious moments. Team LB. What can I say? A group of people who are dedicated, passionate, experienced and committed, bringing a shedload of expertise, networks, ideas and action. In the background, INQUEST.org. A remarkable organisation. Unobtrusive, non-intrusive and quietly and efficiently effective. A perfect mix for the recently shell-shocked.

And then an army of family, friends, colleagues and people we don’t know. Offering thoughts, good wishes, love, kindness, support, space to grieve, momentary havens from hell, cakes sales and accessory swaps. Random moments of beyond kindness. People raging with us, moved by the death of our beautiful, funny dude who was goodness itself.

Preciousness we never really knew existed.