Day 22: Coastal horizons #107days

Day 22 was adopted by Rebecca who has sent us this blog post from her holiday:

We’re on holiday this week and as the sea-gulls swirl above our heads and screech raucously, it’s a chance to step off the stressful merry-go-round of our usual lives. By which I mean, the endless letters, repetitive emails, discussions and whirligig of frustration that too often define our attempts to etch out a decent life for our autistic son.

This part of the Scottish coast has a huge tidal sweep: at low tide you can walk a mile towards the open sea and your feet will still be in soft sand and only an inch or two of water, warmed by the sun. My son likes to run towards the broad horizon, past the dog walkers, kite flyers and fishermen digging for worms, the waders pecking in the rock pools, and on towards the open sea. And even though I run after him (because I’m never quite sure when he will actually stop), I sense he enjoys the feeling of liberation he so rarely gets to experience.

Sara Ryan’s blog and twitter feed in the months before her son’s needless death often evoked the opposite feelings of confinement and reduced spaces. Humorous remarks about Connor (or LB, as she also calls him) avoiding going to school by putting his shoes in the bin, for example, were giving way to a tense commentary about narrowing options and residency at the treatment and assessment unit (with a lock on his door). The question of ‘choice’ seemed to be evoked often by the staff, and yet one sensed that this was not real; that his, and his family’s options were increasingly restricted. Sara’s blog was starting to get me down: I honestly wondered if I should stop reading it.

On July 4 2013, there was a single line entry:

“LB died this morning. In the bath. In the unit. He would be pleased the CID are involved.”

Alone in my living room, I actually called ‘No!’ out loud when I read this. Despite the unhappiness reflected in Sara’s blog, nothing remotely suggested that death was on the cards, that this would be the ultimate end-point of what was after all, a temporary family crisis. They may have had their concerns about the treatment and assessment unit, but they at least thought Connor was physically safe. And had every right to think that too.

As I watch my son running across the sand and splashing in shallow pools left by the retreating tide, I’m reminded of the attractive photo of Connor on the 107days campaign flyer: in shorts and sandals, relaxed, a loved family member, only 18 and free, with all sorts of interesting possibilities ahead of him. A son and a brother; a young ‘dude’ on the brink of adulthood. A human being, not a service user, whose cruel death was so coolly and casually passed off as being of ‘natural causes’ in the first instance.

The bright plastic windmill which my son holds in his hand spins furiously in the breeze and even though I am enjoying the break from the usual pressures, I have no intention of avoiding Sara’s blog and the JusticeforLB campaign from now on. Not only because it is for ‘all the dudes’, including those like my son, but because I have come to admire enormously her strength, honesty and intelligent determination in the wake of personal, emotional devastation.

Day 9: Beach Art #107days

Day 9 was adopted by @GallusEffie for some beach art. While it has been suggested this would be an ideal environment for the Commissioner Ostriches to bury their heads, none were spotted in Kirkcaldy that day. However there were a few doggies… GallusEffie has resurrected her blog to share her day, which was rather special, you can read the full story here. Brought forward by weather deterioration and parental wedding anniversaries, congratulations on 50yrs together May and Archie, we are sharing today the beach art for LB. If you’re inspired by GallusEffie’s creativity then feel free to get making sand buses too, and send us your snaps.

We have asked each person to share why they are getting involved with #JusticeforLB and this was GallusEffie’s response:

I first “met” Sara and LB on Twitter in 2012 and we soon chatted passionately and amicably about our common loves and hates about being mums to incredible dudes with additional needs. I remember in particular a conversation about filling out the ludicrous DWP form to apply for ESA…”can you pick up a pen?” “can you set an alarm clock?” – another instance of proving inability to the authorities that we’ve been doing since the get go…and it was a relief to talk/rant with Sara because she understood my exasperation exactly.

I won’t go into detail about the #JusticeforLB campaign here, I feel utterly inadequate to the task of capturing anything but the tiniest flavour of horror, outrage and disgust that LB died a preventable death…but there’s also the feeling of tenacity, forensic analysis and solidarity amongst the #JusticeforLB posse.

I like that line, tenacity, forensic analysis and solidarity, we really have and we’re not going anywhere until things improve for #JusticeforLB and all young dudes and dudettes. Anyhow, you want to hear about what GallusEffie got up to:

I’m not an artist but enjoy having a go at creative things and thought it would be good to draw a big bus on one of our many beaches in Fife and send in a photo. As it turned out the beach I wanted to use had a lot of cranes, diggers and security fencing at it (they’re improving the sea defences) and much of the beach was out-of-bounds to the public…so we went much further along, parked the car and headed down. There was a difficulty in that this bit of the beach had a lesser slope leading down to it, so the photos were hard to take from a height. Thankfully, Mr Effie had a set of stepladders in the boot and he was a very capable artistic director and photographer! We were “invaded” a couple of times by dogs, including a snarly wee shite called Chicco, and had a lovely chat about LB with a couple from Coventry up in Fife on holiday, turned out they have an adult daughter with speech and language difficulties and the dad drives the Tesco bus for a living….love, love, love that coincidence.

You’ll need to visit GallusEffie’s blog for all the photos and a step by step guide to recreating your own bus.

These are just two to give you a flavour. It really is worth checking out all of them. ps You can get the postcards on the bus here.