Day 96: Oxford Bus Museum #107days

Day 96 was adopted by Brigid Greaney and Kathy Liddell. They wanted to do something with some dudes and dudettes to honour LB and connect with one of his favourite places. Here’s why they got involved:

Like many others who have supported the #107days of action campaign we had never met LB or his family but were both following Sara’s blog, which quite frankly was often the highlight of certainly my day. So well written, funny, inspirational, I would devour it word for word and would frequently recite chunks of it to anyone who would listen regaling the antics of LB, even forwarding it on to my husband who became a convert himself. Then that fateful day. Will anyone ever forget that posting on July 4 2013? 18 words that turned the lives of a family upside down. We felt shock, rage, despair and we had never even met them… we couldn’t even begin to comprehend what they must be going through.

As mothers of young ‘dudettes’ with severe learning disabilities, one of who also suffers from epilepsy we are both well aware of what it is like to have to entrust our young adults to those who deem to know best. A fine balance between letting go so they can develop some independence but wanting to be involved so we can help smooth the path before them so that those inevitable challenges don’t seem quite so insurmountable. As parents we all want the best for our children so why wouldn’t we want to work with those also entrusted to support and care for our loved ones. 18 years of parenting doesn’t just stop overnight as I well know. I’m also a parent to a 21, 22 and 23 year old and am still very involved in helping them make decisions so why wouldn’t we still want to do so for our 18 year olds who need that extra support. Isn’t that what good parenting is all about? So to read that LB who so obviously adored his family, loved life to the full and enjoyed nothing more then making people laugh had died in the care of others was both frightening and heart wrenching!

Here’s what they decided to do:

Like many others we wished there was something we could do to help… but how do you make a difference to a family whose lives were torn apart by what we now know to be a preventable death in a supposedly caring and supportive environment? When the #107days of action was born we knew we had to support it somehow and wanted to do something that was meaningful to our young people, something that they could relate to and something that LB would have appreciated.

Day96

So yesterday we took a group of our young dudes and dudettes to visit one of LB’s favourite places, the Oxford Bus Museum in Long Hanborough. One of the things that came across in his Mum’s blog was LB’s passion for buses and all things transport and the enjoyment he got from visiting these places over and over again. Despite living nearby most of our young people have never been here before so we hope that by bringing them here, even though they will not have the pleasure or privilege of meeting LB they will be able to walk in his footsteps and see some of the things that were meaningful to him. And who knows… maybe just one of them will become as passionate about transport as LB and if that’s one of his legacies then his unnecessary death will not have been totally in vain and his family will have the pleasure of knowing that LB has left his mark in the best possible way.

Day96Bus

 

Usually with these posts we don’t report on the success of an action because they’re taking place on the day (there may be more we can do re capturing them, more of that later on after #107days and we’ve had a wee break from blogging for summer). However, Kathy and Brigid’s trip happened yesterday which means we know how successful it was, we have the photos and they also sent this lovely covering email, the comment about the staff made my eyes leak a little:

Attached are a couple of  photos from our trip to the bus museum today. It was a glorious time – the staff were fantastic and put on a bus ride for us which was a great success and more importantly the kids loved it – including my own daughter who had a fab time going in and out of all the buses. So it achieved in a small way what we wanted it to do and introduced our kids to a place much loved by LB. More importantly the staff there remember him obviously very fondly and were really chuffed today to find out that LB stood for Laughing Boy. Thank you for allowing us to be part of such a worth while campaign! Kathy and Brigid

As ever, the thanks are all ours.

Day 92: Inclusion East and the Missing Sock Bus #107days

Day 92 was adopted by Inclusion East. Here’s what they did, and are doing, for #JusticeforLB and #107days:

The members of Inclusion East are a small,committed bunch of people with complex needs, their families and good friends. In June our monthly Directors meeting was devoted to thinking and talking about Justice for LB.

We were keen to be up to date with what is happening with the campaign. Who is doing and saying what but more importantly

a) What were we doing to add our voices to the outrage, sadness, injustice that led to the very need for LB’s campaign?

All this is very keenly felt as we are families of people who live with autism, epilepsy and complex health and communication needs.

b) What were we doing practically to speak up, challenge ,include people and prevent future disaster?

We took stock and made our list which included:

  • Active Tweeting
  • Mentioning Justice For LB at all meetings, conferences and consultations. Long List!
  • Particularly raising awareness of good epilepsy support at conferences and workshops and yes, on twitter.

Then we adjourned to The Missing Sock which is a funky, Inclusive hostelry in Cambridge. It was there that we plastered The Big Red Party Bus with our home made #JusticeforLB posters.

Deep thoughts and a lot of laughs for Laughing Boy.

Day92

Day 81: We won’t ever stop the bus #107days

Day 81 was adopted by Izzi and it builds on yesterday’s post Busking for Justice, while also standing alone (so you don’t have to have read yesterday’s, but really why wouldn’t you?). This post also includes links to awesome performances which are well worth checking out.

This is why Izzi wanted to support #107days and #JusticeforLB:

I’m struggling to know where to start, my whole life I have wanted to write and I always have plenty of middle but no beginning or end. Much like Connor’s and the Augustines’ stories, both ongoing and timeless. I wasn’t there for the start of either story and I know they will live on far beyond me in the hearts of all who hear them.

I heard about Richard, Sara and Connor before I met them. Back in 2007 the new fella in my life, John (aka Busker John/Kid Rage) as Richard’s new ‘employee’ spoke fondly of them and very highly of Sara’s lectures. I can’t remember when we first met but I felt like I had always known them and was immediately accepted into the fold. I am the baby of my family and as my older brother and sister grew up 5 years ahead of me I wished that I had younger siblings. Connor and his brothers and sister very quickly came to feel like surrogate little sibs.

At a bit of a hard time for me in 2009, returning to the ‘real world’ after travelling with John in India, straight into the recession, struggling over whether or not to be a traditional classroom teacher, Sara asked me to do some child minding for Connor and Tom and I leapt at the chance. Who wouldn’t want to hang out with those dudes of an afternoon.

Some of my fondest memories of Connor are simply sitting in the living room: Bess snuggled beside me; Stan adoringly attached to Connor’s lap; Tom on the floor with his Lego; Coach Trip, Police Interceptors or Horrible Histories on in the background. I used to watch Connor more than the TV, not to ‘mind’ him but taking delight in his absolute focus and dedication to the things he loved. I learned so much from our LB.

Actually I don’t think my career mentoring children in care would have started without LB and his family, and I know John feels similarly about his work. I definitely mentioned Connor in my interview. Real people, real emotions, real face-aching laughter and bundles of genuine love and care for friends and strangers alike.

We moved further away and naturally lost touch a bit but always revisited stories of Connor. I was thrilled when Sara started her blog as I could keep up with their lives despite the distance. Just like Beck from Day 60, it was the first and only blog I’ve had email alerts for. I would read out the stories to John and we’d be crying with laughter, then gradually pulling our hair out as times became increasingly difficult and scary. I wish I’d let Sara know more often how much their battle raged within us and about the thoughts and good vibes we were sending their way.

Then those words, seared into my mind’s eye, appeared in my inbox one sunny afternoon last July.

Never have any words affected me so completely or baffled me beyond any recognition or belief. I had to show John as I couldn’t say them out loud but he wouldn’t believe it was a real post for a long time. I rang my parents crying down the phone in a way I only remember doing as a young child realising that I could never be Peter Pan.

So that’s why I love Connor and his family so wholeheartedly and what made me want to do something, however small, for #107days. I owe Connor so much and he taught me to keep listening to and learning from young people.

To be honest at this point I think if Izzi had just shared that context it would have given me enough food for thought today, but no, context isn’t enough for Izzi and here her post continues with why she has adopted today.

Connor’s story needs to be shouted on the rooftops until something significant changes. I wish I held the magic wand. I was humbled and in awe of everyone’s creativity throughout this campaign and struggled to think about what I could do (beginning issues strike again!) I was very fortunate that the answer found me in a surreal, ‘this only happens to other people’ way.

Nearly 2 years ago, 364 days before Connor died, I took John to the O2 Academy Oxford on a whim to a BBC Introducing gig for about 6 quid. A band whose album he had just bought, We Are Augustines, (now just ‘Augustines’) were headlining. Sweet, we thought, we like the sound of them. It turned out to be one of the best gigs we’d ever been to. Despite only hearing a couple of their songs in John’s little green fiesta (which, incidentally, came to a sticky end on the M40 on the way to Connor’s funeral), I was bouncing away at the front and singing along in no time. To our surprise, the whole band came out afterwards and sat with us, chatting and just hanging out. Again, real people, real emotions and bundles of genuine love and care for friends and strangers alike. We listened to the album on the way home, completely pumped and blown away by the energy and emotion in every song.

We found out more about the band and learnt that a lifetime of tragedy and grief had been poured into this record, which went some way to explaining its gut-punching impact on heart and soul. (You can read more about their story here: Augustines) Billy McCarthy, the frontman of the band was in foster care in the US as a child which again struck a massive resounding chord on my ‘corporate parenthood’ strings (hate that phrase but the sentiment behind it is genuine).

I’m not one to exaggerate but if you’ve ever read Philip Pullman’s ‘His Dark Materials’ or watched the movie of ‘The Golden Compass’ the silence at the end of each song or gig feels a little like, I imagine, the intercision of your daemon. A little vital piece of you that you didn’t really know existed, is torn away and left exposed. I bought the (now vintage!) T-shirt, spread the word and started a fairly healthy obsession with their record. Like Connor with Keane (then drum ‘n’ bass!) I would listen on repeat, watch YouTube videos and basically never get enough of them.

Last year, John mentioned one day that one of their songs ‘Headlong into the Abyss’ made him think about Connor and he’d unconsciously adapted the words in his head. I realised it had also started to mean more to me and I would sing at top volume driving to work wondering how I could still see past my blurry eyes. The lyrics that resonated so much with Connor’s life were/became:

“We were headlong into the abyss…in a red routemaster [four-door sedan] and a kid that always questioned [stuttered]. We stole it for the feeling of stealing. And drove it like our days had been stolen…

Our wheels touched the highway we travelled on down from the valley that raised us up to shrink down. It gave us the drive to keep driving from dreary and dread, to make bets we could not afford to; Call the police! Call your shrink! Call whoever you want but I won’t stop the bus [car]! Call the police, call your priest, call whoever you want call in the National Express [National Guard] I ain’t gonna wait around, ain’t gonna wait around for some pill to kick in…”

Last month we were able to see Augustines for the 4th time, back in the O2 Academy Oxford, now just down the road having moved back. After another ‘is this really happening’ gig, Billy and the gang took to the streets (our very own Cowley Road) for an acoustic set then on to The Library pub for a final singalong. We were able to meet the band again, buy them a drink and sit with Billy into the early hours (on a school night too!). What I love about their second album is that their past experiences and grief run like a lifeline throughout, but there’s an overwhelming twist towards hope and the joy of living, especially in ‘Now You Are Free’, which I feel is mirrored by the hope and passion of this campaign.

I plucked up the courage and inspiration from #107days to ask Billy if I could share a very sad story about ‘Headlong’ with him. He listened intently and was clearly moved, drawing some parallels with his own personal story. Amazingly, Billy offered guest tickets to their final gig of the UK tour that Friday in my home city, Birmingham, along with the possibility of doing something for Connor during the gig. I explained how much that would mean to all of us and we left feeling rather stunned.

After a few emails with Billy I realised that it was quite an ask for them to change the very last UK show of their life-changing tour at last minute, especially as ‘Headlong’ was their opening song. I told him that even the offer was enough and he said he’d be around for a hug and a chat after. I don’t have to tell you that the gig was phenomenal (skipping over a brief issue with the guest tickets not being on the door!)

Day81_Izzi and Billy

Ever true to his word, Billy had more time for us than I could have anticipated (possibly not out of choice?!). In tribute to Connor, I gave Billy an LB bus postcard, which I hope will travel at least as far as New York with him (photo please Billy?!) and also a little Travel West Midlands toy bus. The bus was a gift from my oldest friend, Leanne Curl (who also came to the gig) when I moved to Oxford, in memory of all the buses we shared on our long trip to school every day for 7 years. We never lost the excitement of being upstairs on a double decker (to this day!) I asked Billy to hold onto it for me as it was even more special since Connor died; it poignantly found its way onto our bathroom sink soon after 4th July and became a bittersweet reminder of our favourite dude and his bus collection. I hope it has great adventures with Billy and the band, wherever it ends up.

So this is as good a place as any to stop writing, but it is certainly not the end and Connor, my little brother, I still see you riding off into the distance on the top deck of the U1; we won’t ever stop the bus.

A huge hug and thank you to John, who keeps me smiling even when I don’t feel like it; Leanne; Sara, Richard and co; Billy and all the Augustines for being the most ‘real’ band I know. And last but never least, Laughing Boy, for everything.

You can hear Augustines for yourself singing Headlong into the Abyss and see them after their Oxford gig in two street appearances, here and here.

Day 66: Woodcrafting buses #107days

Day 66 was adopted by Sharon, Heather and the Oxford Woodcraft Folk. They shared LB’s story with their young people on an evening a week or so ago, this is what they had to say:

Woodcraft folk is the cooperative children and young people’s movement. In Oxford there are grass roots groups for young people age 3-18+. We are committed to promoting inclusion, respect and social justice.

The young people of East Wind Pioneers (aged 10-13) were moved by the #JusticeforLB campaign and were able to show their compassion and support through these drawings. We hope you enjoy them!

It has been particularly heartening to see the contributions, support and compassion of young people in today’s activity, and yesterday’s from Ohio, and in several other days. We live in hope that they will grow into young adults who live in, and insist on a more fair and equal society, but we really shouldn’t wait and leave it all to them, we need to keep improving it now.

Day66

Day 38: Happy Birthday Big Man #107days

Day 38 was adopted by Big Man’s mum, who wished to share a post celebrating some positives, on his 10th birthday. We love positivity at #107days, in fact it’s underpinned nearly everything we’ve done in this campaign so far, so we are delighted to share this post:

What’s wrong with loving buses? Bus lovers of the world unite and celebrate! From the mum of an ex-bus lover (now replaced with a football team that play in red) I salute you LB and hope that you get the justice that you deserve.

On this day, ten years ago, I had a baby. This baby grew into a dude, we call him Big Man.

BM has some very special qualities – like LB, buses were a great love of his from an early age, from bus numbers and time tables he learned to read. Sometimes he would combine this love of buses and reading by reading out loud all the adverts on the bus; “Mum, what’s chlamydia?”

In time BM started nursery school. By this point he had gone off buses and onto dinosaurs and computers. Once we found he had ordered a load of dinosaur stuff the internet and only stopped when he didn’t have a credit card to get through the checkout. We sat back and admired his awesome brain. We told everybody how clever he was.

Not everybody saw his awesomeness like we did though. They had concerns.

The first IEP I threw in the bin.

I thought it was a record of parents evening and everybody had one.

In time he progressed from IEP’s to different pieces of paper. Assessments, meetings, pathways and diagnoses. It was a language I had to learn fast.

Then he got some letters after his name: ASD.

They said he could stay in mainstream school, he should be able to take some GCSE’s.

The BM does maths for fun.

If Minecraft hadn’t already been invented he would have invented it by now.

He loves a glorious football team that play in red; football trivia and FIFA has replaced buses and dinosaurs.

If he doesn’t like you, he will just ignore you. If he loves you he will love you forever without caring who is watching or who knows. He can’t tell a lie. That’s a good thing, right? Not everybody seems to think so. Some people think he needs fixing, working on, improving.

He is very moral, always stands up for the underdog. He is amazing, complex, cuddly and funny. His capacity to eat dad’s pancakes and chips from the chippy is unrivalled.

So many people seem to live in fear of an ‘autism epidemic.’ Having a child with such a label is portrayed as disastrous, burdensome, tragic. What is this ‘normal’ people seem to aspire to? Is it being the same as everybody else? Is it judging people to be less worthy because of being different? We’ll pass on that thanks.

IEPs are tragic, children aren’t.

Happy Birthday Big Man.

bday10

Day 33: Fulfilling ambitions #107days

We’re coming up to a third of the way through #107days and we are delighted to share that a number of LB’s ambitions have been met, so Day 33 is focusing on fulfilling ambitions. This weekend Sara wrote a post reflecting on LB’s future and the lack of ‘loss of potential future’ narrative; one thing we all know is LB’s love of London and of buses, indeed it is his artwork of a London bus, that has become the visual symbol of #JusticeforLB. You can read Richy Rich’s words to learn more about the context of this, especially the last paragraph.

So we know LB wanted Connor Co and last week Ally Rogers found it in Urbana, Illinois:

ConnorCo

Connor Co wouldn’t have worked without a fleet of vehicles though. To quote his Mum from another post introducing the fleet, which kicked off with the help of Mrs Buhweet pulling a few bus strings:

The dude had massive, steadfast, consistent dreams around ConnorCo and a fleet of vehicles. There are now three (3??) double decker school buses dedicated to him. Just makes me cry. With more to come on the fleet front…

LLBus_Day33_1

LBBus_Day33_2

So the LB ripples will continue for many years to come. Hundreds of school children will travel on those buses in the coming weeks and months, and we hope that LB will live on in a small way with every one of them.

There is another small movement trying to ensure that the lessons of the preventable nature of LB’s death are learnt across the globe, through the challenge to ‘Draw a Bus for LB’, heavily supported by Beckie and a number of people on our facebook page.

Atawhai Brownies Drawing

Atawhai Brownies in New Zealand drawing a Bus for LB – thanks to Karen

So far we have 54 buses, so we’re one over half way, but we still would like another 53.

image

So if you have children (or adults) on holiday at the moment (you don’t have to be as creative as Becky and her family), but please do encourage them to draw a bus, then take a photo and post it on our facebook page, or tweet it to us, or failing all else you can email it to us. If drawing or colouring isn’t your thing then there are still a number of ways in which you can get involved with #107days, check them out here, and thanks again for all the support so far.

GraphicsOnTheGO

 

Day 24: An Exmoor marathon #107days

Last weekend our first #JusticeforLB marathon was run by Ruth on Day 18 and tomorrow sees Deborah and Daniel treading the streets of London in the London Marathon, but today, Day 24 belongs to Lucy Skye.

Lucy is running the Exmoor Marathon, she isn’t running for money, although feel free to donate, but is running to raise awareness of LB and the treatment of many others like him. Here’s what Lucy had to say:

There weren’t many buses to be found on Dartmoor during training for this marathon (plenty of mud though) but whatever the length of the run, #JusticeforLB was never far from my thoughts. I know I feel powerless to make the changes to systems/people/organisations that so desperately need to happen, and if that’s how I feel, I know it’s only a fraction of what others are feeling. But I can also see what joy can be gained and maintained in small things, how we can freely add another bit to this puzzle, and how they all add up to something so much more.

And so the last long run is now done, and the tapering before the race has started…it’s this waiting around bit I find hardest.

I can plan it all out to the ‘n’th degree, but I’ve still got to go and do it, and I just want to get it done. I’m not going to lie, I’m scared I won’t finish and that it will all be too much. But there are more important things to keep me going:

  1. I wish I’d met LB. He sounds like the sort of guy who got things done. In his way and his time. So that’s the first thing I’ve got in mind – to take my time and just enjoy the view. I’ll get there when I get there.
  2. Second, that I need to laugh my way round. Probably not all the way or I’ll run out of breath and conk out. But I need to find things to laugh about, and think of things that will make me laugh. There’s no point in doing this if I don’t enjoy it.
  3. Third, that I’ll try and share those two things with as many people as possible. And how, and why. Because then they’ll know about LB too and we can all laugh in celebration of him up and down the hills and out to the sea.

And I’ll keep an eye out for buses. Just in case.

Please take a few minutes to visit Lucy’s facebook wall and wish her luck and thank her for her efforts as Lucy carriers the virtual #JusticeforLB running baton forward.

LucySkyeMud

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.

SandBus1

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

SandBus2

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.