Special Mission to see the LB Quilt

Some people may know that we have been keen followers of #JusticeforLB .  In case not - here's my very potted summary - Connor Sparrowhawk, also known as LB, was admitted to a STATT (Short Term Assessment and Treatment Team) as an inpatient (Southern Health NHS Foundation Trust ran the unit) in 2013.  107days after admission, LB drowned in the bath on 4 July 2013. An entirely preventable death. 

Just this month (June 2016), Southern Health NHS Foundation Trust FINALLY admitted that both Connor and his family had their Human Rights breached - more details here in Sara's blog.  I have absolutely NO IDEA how LB's family has made it through the last almost 3 years with such dignity, tenacity and utter resilience.  The personal toll has to be immense.  Without their persistence many facts revealed through numerous investigations and, horrifically, LB's inquest would not be known.

Inexplicably, as I type, the CEO of the organisation whose neglect is acknowledged as the cause of LB's preventable death remains in role. You can check on her status here  - you never know, one day she may be given her marching orders seeing as she is not willing to go of her own accord.

As part of the #107days campaign, which ran up to the first anniversary of LB's death, people were asked to contribute panels to be included in a quilt. The Justice Quilt was completed in September 2014 and has been displayed all around the country... we made it our aim to get to see the quilt.  J's followed the twists and turns in the #justiceforLB campaign and, when our MP was successful in the Private Members Bill Ballot last year, he sent an LB Bus postcard in support of the LBBill.

Anyway... to the Special Mission... I'd tasked J with planning a visit and taking pics (on his iPod) of the quilt.  He attempted this on Tuesday but was thwarted by the request for an entry fee - £10 in total for his support worker and him - but this was not possible.  They returned home somewhat disappointed but took some learning from the experience - J had managed to keep calm, had a break and visited The Herbert Museum (which he enthused to me about - reliving all of the exhibits he'd seen!)

Armed with a better understanding of where we needed to park, and J providing "Sat Nag" in car directions (he sits in the car and nags the driver!!), today we made a return trip to the Coventry Cathedral.  And The Herbert Museum... with a few other 'spots of interest' along the route.

Here's a picture story (of sorts) from the visit...

This way to the Cathedral...

Passing a handily-placed electric vehicle charging point (much to J's glee)

"I hate these bits... they frighten me... where am I supposed to walk?"

"Spotted the Cathedral, Mum!"

Remains of remains

THE QUILT!

"Take a picture of this, Mum. I like the yellow dude."

A rare 'image' of J... he spotted this malfunctioning display screen and was finding its error message amusing.

"This is like my brain... seeing detail in things you miss"

 

"Look, Mum, it's different here"

"Take a pic of the ammonite"

Fluorescing minerals...

Narwhal tusks... "feel them... they're spiral (or helical)"

"Part of a TAVERN (that's a PUB) from 1406"

Back to the car... passing the surveyors learning how to use theodolites... 

At this point I must admit to being overcome with tears in the Cathedral... the LB Justice Quilt is fantastic.  I left the building still blubbing but at least I had my lovely lad with me to give me a hug and say "Are you alright mum? Are you alright mum? Are you alright mum?"  How lucky am I?  It was a LOVELY way to spend the morning.

For info - I mentioned at the entrance to the Cathedral that we were only wishing to see the LB Justice Quilt and today we were allowed to enter without being asked to pay (or for J to 'prove' his age).  Phew.  "Thanks Coventry Cathedral till lady", says J.

Clothing - Raising Awareness

Having seen a tweet from @SquarePegCIC on twitter about hoodies and t shirts using fashion to educate about special needs, some of which are hidden as not every disability equates to being in a wheelchair.  When we took a look at the site there was no yellow option, so J was not interested.  Following a twitter exchange, Lauren at Square Peg Clothing agreed to look into the colour options with her suppliers.  It was great to hear, a few weeks later, that they were able to offer yellow hoodies and J was then keen to try one. 

There are t shirts and hoodies available, in child and adult sizes with various slogans.  J had a look at the website and all that was on offer.  Athough he liked "You can't get my designer genes just anywhere", he chose the message "Somewhere over the spectrum".  This was because he likes the concept of spectra (both electromagnetic and also the 'autistic one') as well as the use of the linking jigsaw pieces. Jigsaw pieces are used by Ehlers-Danlos Support UK (which is another of his diagnoses) in their message about the various symptoms and types of EDS.


In the pictures you can see that J was very keen on the top... in fact, since it arrived, he has worn it every day!   The colour of the hoodie in the pic on the left (with J's pal Peppie in) is the best for demonstrating the shade of yellow it is - a deep sunflower, "happy" colour.

 
Today at his aquatic therapy session, which is held in a special school, J was delighted to get a couple of lovely comments from the staff and his favourite physio particularly liked the shade of yellow saying it had brightened up her day.

Initially, we had talked around the topic of whether J wanted to bring attention to himself with the slogan and came to the conclusion that people stare and question anyway so they may as well have something nice to look at when doing so... it also opens up J's lines of communication as gives him a 'topic' to use as "chit chat" which is part of his Speech and Language therapy.

The photo to the left is J demonstrating the hoodie part...  he says it's lovely and soft and keeps the chills out.   He also likes the 'pouch' on the front (which can be seen best in the photo at the top) as he can snuggle his hands in and keep them warm.

J is a slight 14 year old and we were sent a 12-13 (34" chest) hoodie by @SquarePegCIC   Taking a parent's view, the fabric is lovely and thick (80% cotton, 20% polyester) and washes at 30ºC... amazingly, given J's usually messiness, it hasn't had to be washed yet.  Hopefully, it will still look as good once it's gone through the machine.

Thank you Square Peg Clothing, this top is a great success! 

Disclosure - J was sent a hoodie by Square Peg Clothing, the opinions are our own and we have not been paid for this post.

Battling on...

It's a way of life for us that things are not as simple as we'd like.  Recently, things have become even more of a challenge... and not because they've changed (much) but that, once again, we are forced to read *things* in black and white.  We should be used to it as over the years, J has been assessed and tested many, many, many times but only a minute proportion of these 'evaluations' have come with a follow up of support and assistance.  What's worse is that the 'tests' are all about showing how difficult things are... there's little that's done to highlight the strengths and delightful characteristics J demonstrates on a daily basis.  This, in itself, is soul destroying.

Add to this the frustrating postcode lottery that means that a few miles to the West of where we live, things would be so different.  This is what is reality for us within the Midlands UK.  Suffice to say, where we live has been a disaster in terms of the interventions and assistance J has been offered... and it's now apparent that "because he looks normal" (whatever that may mean) he is even more disadvantaged as 'people' think he *shouldn't* have the severe problems he has.

The catalogue of matters we've dealt with is a long one but does include health and education.  We know alot about J and what will work for him but, for the most part, this is not given any credence.  Instead of being supported in our goals for him we are blocked by the very people whose job should be to assist.  Slopey shoulders abound with no-one wanting to raise their head above the parapet to assist and/or take responsibility for actions (or in J's case their INaction).

It's not all doom and gloom, support and advice has come from charities and other special needs parents.  But these are people that really *know* what we face and see the challenges for what they really are.  Most of the professionals (or 'service providers' as one parent told me to think of them <- a great tip, by the way) seem to do the bare minimum and, in some cases, actively work to prevent support.

Using the internet is great for linking up with similar people and information finding is easier as a result.  But local services should not be about us finding out what there is supposed to be available and then battling to get even a morsel of understanding... and we're not blaming this on austerity or the current administration.  This has been our experience all along - since J was 3... a whole DECADE.  It's just not good enough and the battle is only ongoing because his problems will NOT diminish (although, of course, we hope they might) and we won't be here forever.  It's worrying and wearing.  But we will persist.

The support of twitter pals has been fantastic... and the resources we've been able to learn about and access have been worthwhile.  But how much easier and better it could have been FOR J if support and understanding, as the default, was offered.

PLEASE don't judge people by how they look.  Don't presume to know what's happening in their life... and, if you can, please offer a thought for those who have a less straightforward run at life.  One day, in the future, it could be you or your loved ones facing similar challenges and demands.