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.

StickyTape-less Gift Wrap Method

Last year we blogged about the things that challenge J at Christmas (and birthdays too).  He doesn't like wrapping paper, won't open envelopes and can't cope with sticky tape - to name a few!  So, as is usual, I have kept looking for ideas that may help out with his difficulties.

During this week, I spotted a link to a youtube film from Royal Mail who'd asked an "international gift wrapping expert" for tips.  Taking a quick look, it was apparent there may be a technique she used that could work for J.  She speeds through it quite quickly (and uses paper that clearly costs mega-bucks) but I've broken it down into steps using the pics below... and it truly was a 'speed wrap' not and 'expert' wrap that I did!  Have a look and see what you think - it may help someone you know to access presents.

Get a piece of wrapping paper that's more than 5 times longer and at least twice the width of item being wrapped.

Place item near the bottom of the wrapping paper and fold the long edges in.

Crease the paper from the item to the cut edge, then fold in the corners and crease the fold line.

Fold up the end to enclose the item.

Crease the paper at the top of the item, then carefully (holding the folded end in place) fold the whole item over.

Crease the top end, again, and fold up to enclose in paper.

Crease and fold up again.

Carefully 'flip' the gift over so the remaining paper is now facing you.

Cut off excess paper length, aiming to cut the paper wrap to just cover the package.

Crease the sides.

Open out the newly cut end and fold in the corners, at shallow angle to the midpoint.

Fold in another, slightly larger, triangle at the corners.

Fold the flap down over the gift and fold the corners back on themselves.

Secure the flap with some ribbon...

... and here's the finished parcel (yours, and the 'expert wrapper', gifts will doubtless look better!)

You can make yours pretty with a bow and dangly baubles, bells, candy canes, attached to the ribbon but this is a gift heading to our little Chihuahua, Peppie, so we went for the 'less is more' wrapping approach. Enjoy!

Handling Hairbrushing and Haircuts

So, amongst his hypersensitivities, J has a real aversion to the touching, cutting and brushing of his hair.  We long ago realised that the 'cheery chappy' ruffling of a youngster's hair by an adult was something that would send J into a flat spin.  He loathes even the slightest touch of his hair.  In fact, the lighter the touch, the more he tends to dislike it.

Hairbrushing, when it is undertaken, is a much screamed about and avoided chore.  J will not brush his own hair (usually) and is very anti 'someone else doing it'...  So, on most days, we tend to keep it to a minimum.  However, sometime, the bedhair and ruffle look is not going to be OK for heading out so we do some serious negotiations around how to get a brush through the hair.  Usually, this will entail a 'distraction' agreement such as J uses the iPad to minecraft whilst I speedily attempt to tame his locks.  The other month, things changed a bit and a step towards a solution was taken.  A friend's daughter uses a Tangle Teezer and she suggested we try one out.  I mentioned this to J (as we've tried different brush types in the past and don't want another gathering dust in the bathroom cupboard) and he said "well, if it's yellow I will give it a go".... So, my task was to source a yellow Tangle Teezer.  First stop was the Tangle Teezer website where, to my dismay, I discovered they don't do yellow brushes.  All was not lost, however, as I emailed them through their contact form and an impressively swift reply arrrived by email.  Not only did they have a special salon edition yellow brush that they had found in their warehouse, but they were offering to send it out for J!!  The parcel was swiftly delivered and the lovely Sara had exceeded our expectations by not only sending the yellow brush, but it was packed in a box with yellow tissue paper... this was met with great delight. 

The brush was inspected and set to one side and then, a few days later, J actually brushed his hair with the Tangle Teezer and said 'it's not that bad' which is high praise indeed.



Thank you Tangle Teezer for going that extra mile and finding a brush that J is willing to use.  We really do appreciate it.





Haircuts are something that we have come to carry out in a regimented way to allow J to know what to expect.  He goes to a local barber, has the same chap cut his hair and sometimes does now actually talk whilst he's there.  The whole thing is a trial to be tolerated but only on a quiet day, when he's feeling well and we've talked about it for a couple of weeks beforehand.  There is now a trigger length when he will mention he may need a haircut - when his hair whips his eyes when trampolining.  We know it's then time to start the preparation and that, soon-ish, the problem hair will hit the floor having been cut.  The barber knows all about J and has been cutting his hair for well over 7 years.  He commented the last time that J's tremors were less noticeable which is good.  In the past, at a previous barber's, the 'awful man' shouted across to me "has he got Parkinson's or something? He's twitching like mad here"... so I said "actually he DOES have a neurological disorder - thanks for sharing that with the whole shop".  Needless to say we never returned to that particular place.  For J, having his haircut is all about knowing what to expect and how long he has to manage dealing with getting it done...  We aim to go early in the day and, after a haircut, we don't plan anything else as J just wants to return home to his Lego and swingseat.

Is this sort of thing familiar to you?  How do you deal with such senstivities?  Share your ideas and solutions in the comments below... 

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.

Tackling Toothbrushing

Spiky therapy cushion for standing on...

Having found toothbrushing to be a problem for as long as J has had teeth (since he was 4 months old)... we have amassed quite a few tips, techniques and tricks to get us through this important daily care task.  It seems we are not alone in finding things challenging when addressing the tantrum inducing time that is toothbrushing.  So, here goes - if you recognise this as a difficult task to undertake, see what we've done and perhaps there's something that may work for you (for a while, at least!)

J says that it is unpleasant brushing his teeth and he doesn't like the sensations he gets.  This is a little odd, given that he is always mouthing objects and uses chewy tubes for deep sensory input.  However, as child with Sensory Processing Disorder,  we have found it's not unusual for him to be a sensory seeker and avoider in the same area!  What matters is to try to get the messages he is receiving to be positive ones for the activity being undertaken.  

So, techniques and methods used for toothbrushing have been:-

• Swaddling will sometimes work - the deep pressure sensation provides a feeling of security and calmness.  This is still a good option (even at 11 years old) after a shower when wrapped in a huge bath sheet as tiredness means he needs to be relaxed... he props himself against the wall and is cocooned.
• Different types of toothbrush and varied flavours of toothpaste - J chooses the brush/paste combination for tooth brushing.  He prefers a dry brush and a low foam toothpaste but also likes a minty taste.
• Firm touching around the mouth area and along the jaw bone prior to beginning the brushing has been encouraged. This is something J does for himself now.
• Positive tactile sensations -  J selects an item to stand on or play with (in his non brushing hand).  He likes a spiky therapy cushion some days, others he will choose a small spiky ball to squeeze in his hand.

This small spiky hand toy can help.

• Deep pressure on his shoulders whilst he is brushing - this used to be a favourite "only Mum can do it right" solution but it was good whilst it worked!
• Humming/singing along to the noise of the electric toothbrush - this seems a good distraction technique but works best when not too tired.
• Doing it together - J likes to mirror what someone else is doing whilst brushing... it helps him realise where/what/how he should be brushing.
• Using an app - there are some good apps to accompany brushing that indicate time and which teeth to brush.  Points are earned and this engaged J for a while - he prefers one called Teeth Timer.
• Visual sand timer countdown as to how long is left of the toothbrushing - allows J to realise there is an end in sight!
• Tick chart - this is completed morning and evening and a reward for a full week of ticks (two misses, not on the same day, are allowed). J chooses at the start of the week the reward he is cleaning towards.

Son's TEETH chart

All of the above have been a success at one time or another.  Many are used in combination.  There is no simple answer in this household and the surest thing we know about toothbrushing is that it's not the 2 minute task that many others have... we have to allow about 30 minutes.  During this time there is much discussion, briefing, kajoling and insistence.  It's not a straightforward task and it takes a great deal of patience, which I do not always have in sufficient amounts, so it is a pretty stressful way to start and finish each day.  

ADVANCE WARNING: We are aiming to cover handwriting in the next blog entry... although it will, doubtless, require more than one post as it's a BIG topic here.