Day 41: A question of trust #107days

Today’s post is from Fiona who has a dude the same age as LB. Fiona raises her concerns for the future and asks how we can trust the NHS;

“I wanted to get involved in this campaign as it touched my heart and soul and my thoughts go out to Sara and family of Connor. This is my 18 year old son, who has global learning difficulties, epilepsy and autism as well as type 1 diabetes. Although we struggle sometimes, and some days are more challenging than others, I cannot comprehend how this tragic end to Connor came about while he was in the care of a unit specialising in care for vunerable adults. I would not leave my son unattended in the bath, privacy is one thing, but abandonment and lack of care is another. This is negligence which they were forced to admit only after an independent investigation.

How are we supposed to trust in the NHS to look after our vulnerable children and adults after this?”

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This is a huge question which  gets at the  heart of what we’re trying to achieve.

As we don’t have any answers right now, one small way forward may be to record those small ‘drops of brilliance’ that have made a difference.

A collection of brilliant drops may offer  ideas, thoughts or changes to what people do. The otherwise unsaid or invisible stuff.

 

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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.

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Day 1: Postcards of Awesome #107days

Yesterday we launched #107days of action to bring about #JusticeforLB and today is Day 1 and we’re focusing on Postcards of Awesome. Postcards of Awesome sees us collecting at least 107 (more if there’s interest) postcards that share what is awesome about a person with a disability. LB was one awesome dude and we know that there are other awesome dudes and dudettes out there, we’d like to share them with the world.

If you are a person with a disability, or the parent, brother, sister, friend, colleague or carer of someone person with a learning disability, then this is an activity for you. We would like you to send us a postcard with your dude/dudette’s first name and what it is about them that makes them awesome. It can be any postcard, we don’t mind, as long as it includes lots of awesome.

We’re starting today by featuring two dudes. One is Luca, who is 10 today:

Luca

Luca loves The Rolling Stones, Pink Floyd and The Killers, the dodgems, the beach and ice cream, and hates being kept waiting and traffic jams. Last year his Mum @fnafilms took Luca bowling and he kicked the ball down the lane. What a dude. You can read more about Luca in this special birthday blog post his Mum has written.

Another dude we’ve heard about is Reece, we had a postcard from his mum and another from his sister:

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Reece has had epilepsy since he was 12months old. He loves his little therapy dog Scooby and his favourite subject at school is physics. Reece wants to be a computer game designer when he leaves school and spends all his time on his computer. When diagnosed with autism he was relieved to know why he stood out at school. He says he’s not disadvantaged everyone else is…. as he’s got supersonic hearing and a brain like a sponge. Reece is the most loving and kind hearted person you can meet. Laura says ‘Reece is awesome… he teaches me something new every day, sometimes interesting, sometimes not so!’

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So those are our first two dudes who feature on Postcards of Awesome but we need many more. We’ll do something to share the postcards once we have them, most likely is that we’ll organise an exhibition of them and take photos and share them online. So please do get involved, we’ll challenge misconceptions one by one. Please send your postcards to:

Postcards of Aweseome
My Life My Choice
The Jam Factory
27 Park End Street
Oxford
OX1 1HU