Contactless Payment using bPay Loop

J's been getting out and about quite a bit lately... and with increasing outings, there's been a need to 'sort out' money and paying.  Having a problem dealing with social situations and with the additional difficulties his essential tremor brings meant we were on the look out for something to allow simple transactions.

Last year I was part of the Barclays #AccessHealthCare hackathon and have kept in touch with them through their twitter @BarclaysAccess account.  I'd mentioned that I felt there must be a way to meet J's needs without him having to carry around cash.  Having kept looking for potential options to assist J, nothing had met with his requirements.

Then, in the summer, we were sent a bPay loop by Kathryn as she thought it may be what I was looking for... I attached it to J's lanyard and activated it online.  As the lanyard is something J's very familiar with, he was happy to 'have a go' with the bPay loop once he understood it allowed him to pay without needing to "mess about with coins". 

His first trial was at a local cafe where he usually struggles to get his money ready.  It was a great success and he was even able to ask "do you take contactless payment?" and then use the loop to pay.

J's next success was finding the sports centre where his weekly club is held also has a contactless terminal at the front desk.  We no longer have to remember to ask about change and find the right coins to pay - J just taps to pay and it's all done!

An interesting development when out and about with his bPay loop is that J is willing to engage in conversation with people about contactless payment, and is happy to explain how it works.  Spending is tracked through auto top up texts sent to my phone and we are working together talking about budgeting so J understands this is not just 'magic money' which appears from nowhere.  He loves his bPay and says it, like the name Felipe, as if it's his friend.  A great tool for our family in certain situations.

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.

Hedgehog Feeding Station

The wildlife cam we've been using over the summer has revealed that a neighbourhood cat is enjoying Hedgie's food as a supplementary meal each night.  With this in mind (and also that hedgehogs need to gain weight at this time of year before hibernation), we decided the time had come to seek a solution.  We aim to engage J in "meaningful" activities and this was one he was happy to take a hand in helping with.... he thought about what we'd need and we assisted in delivering the outcome he envisaged....  Here is what we did -

Having bought a 32litre underbed storage box (ours was £4), we took a white board pen and marked a doorway for Hedgie.

Drilling small pilot holes at each corner, a sharp craft knife was
carefully used to cut the plastic - it was brittle so there were some sharp splits.  After removing the "door", the rough edges were then filed and covered with electrical tape.

The lid was secured at the door end by using a

drill to make a small slot, then threading a cable tie through (it is rather fiddly but J persisted).  Making sure the lid would still open, using the cable ties to form a hinge, the ties were tightened (don't overdo it - you need to get in to replenish supplies)

Placing the food bowls at the opposite end of the box to the doorway, we set the wildlife cam up and waited to see who visited.  Night number one was only tabby cat neighbour but he didn't access the box and we're hopeful Hedgie will soon be eating happily.

UPDATE 
Second night's activity on youtube - an early visit!

Ideas for organisation and planning

J has struggled with keeping track of 'things'... whether they are physical belongings or the passage of time and the need to move onto a new activity.  We are experts in charts, lists, timetables, visual cues, reminders, tick sheets to name a few.  Early on, I realised the laminator would be my friend.  J hates the feel of certain types of paper but if it's encased in a bonded plastic wallet - hey presto, he will touch it!  Not only that but if we make a sufficiently 'generic' template, we can laminate it and then use dry wipe pens to customise it as appropriate.

For things like hand washing, when J was younger, we took pictures of each of the steps involved so he got them in the right order without having to always ask (or, more often, forget what to do so didn't bother).

Blank month template - created in Excel

We use timetables - monthly overviews and then weekly detail is added on a Monday. Ours are laminated sheets and J uses whiteboard pens to fill them in.  Using them to put on the 'definites' like therapy appointments and activities as well as maybes like seeing friends or chores around the house/garden.  J likes to see his weekly timetable updated on a Monday and, if there's a hated dental appointment ahead, he DOES NOT want that mentioned again until we set off.

Tick lists are good for 'what do I need in my bag' and used to consist of things like water bottle, fiddle toy, items for activity, snacks, suncream, hat, glasses and so on.  But these days, after years of learning, J will talk these through 'out loud' to himself when getting ready for the day rather than use a physical list.  Actually, he talks through most tasks if he's undertaking them 'solo'.  He seems to need the repetition to consolidate the action.

A great part of J's organisation and planning 'training' has been cooking.  He follows a recipe and will take each piece step by step.  He likes the familiarity of gathering the ingredients, checking for the equipment and then following the method.  Recently we have started to type up and laminate favourite recipes.  With a clear layout and step by step instructions, these sheets are also used as tick sheets to keep track of where in the recipe has been reached.

We often use a cooking analogy when taking on other things like packing an overnight bag or sorting out what is needed for a hydrotherapy session - remembering 'ingredients' (things needed for the task/outing) and 'method' (what will be done, in which order to achieve the outcome).

Shoe sticker

As a younger child, colour coding things also worked well.  Obviously, he loved all things yellow (hence the name of the blog) and
so, where possible, we gathered items that were yellow and then when looking for 'our stuff' when leaving Nana's or coming home from sports club, he'd look for yellow items that may be ours.  We had a blue bag for school so things related to that were also blue. 

Home made shoe sticker

He had stickers, cut in half, in his shoes so that the picture was showing properly when the shoes were put together.  He then knew the shoes were the right way round and would go on the correct feet.

Counting down the time to a change of task or getting ready to go out is still something we do.  J has very little concept of the passage of time and hates to be 'surprised' by what he sees as a sudden change.  In school he had a sand timer (which he'd tip onto its side) and we have digital timers that we set for him to see and hear the time passing.  These days, for going out of the house, we do a fifteen minute warning, a five minute warning and a 'right, time to get going'... the dog has picked up on the word "right" and dashes about which is an additional cue to make J realise his time's up!

Of course, there are resources aplenty to buy online... usually at great cost because anything labelled SEN or disability aid appears to have a hefty mark up added.  So, I have spent hours trawling sites, reading books, chatting to therapists and seeking our own 'version' of things that work for us.

Key Marking

J has a problem with locating things.  As mentioned in this blog, he likes the colour yellow. A lot.  Wandering around Homebase the other day, a small pot of Rustoleum Painter's Touch gloss finish in Bright Yellow was spotted... and, looking at the materials it can be used on, metal is covered.  So, a 20ml pot was bought (for £1.99).  We would paint the keys we need to find quickly - key covers have been tried in the past but they never last long.

Today, we assembled our equipment - old newspaper, small paintbrushes, keys and paint.

Covering the table with newspaper, the paint shaken and the correct key identified.

The key was painted yellow (we were lazy and didn't take it off the key ring)...








...and left to dry in the sunshine.

Once fully dry, it took about an hour, we had two sets of keys with a lovely bright yellow key for us to spot - effectively, a visual "USE ME" for all of us to see.

As shown in our pictures, we also use yellow wristbands on key rings as these allow the keys to be seen and held easily.  J's getting used to using keys when we go on dog walks - locking the door and keeping the keys safe - and having a wristband means he worries less about losing them.  Attaching them to his wrist gives him the security to know he has the keys with him and also has them readily available when arriving back at the door.

Hearing problems...

Over four years ago, we waited months for J to be 'seen locally and failed' in relation to his hearing problems.  We were told this was necessary and we had to be told they could not assist J as this would then mean a referral to a tertiary centre might be possible.  So, despite us knowing from the outset what was required and who J should see, this is how J was eventually referred to Royal Throat Nose and Ear Hospital.  The RTNEH had a specialist Paediatric Hyperacusis clinic within its Nuffield Hearing & Speech Clinic.  It turned out, as a result of his referral to this specialist clinic and talking to the staff, that tinnitus, hyperacusis and Autism Spectrum Conditions often go hand in hand.  Something that, when we'd mentioned it locally to "professionals", was met with raised eyebrows and their 'fussy family again' eye roll.

Another thing we learnt early on from the specialists at the clinic is that, contrary to what had been shouted in J's face locally, hyperacusis can be painful and this is known because adult sufferers (who appear to be more readily believable than a child) report it as 'feeling like a knife is going through your head'.  So, to the local 'professional' who got down to J's level and shouted in his face "don't be silly J, there is NO noise and it doesn't hurt you", you are wrong and your 'clinical manner' sucks.

Once referred to London, J undertook a series of appointments at the clinic, the first of which was a real eye opener as we all learnt about how hyperacusis felt for him.  We agreed an intensive treatment programme with the team and during late 2011 we attended fortnightly appointments at the Nuffield H&SC.  We all saw clinical psychologists and J initially worked with them to explain the problems he had.  There was a marked change in his ability to verbalise matters when he was told what the names of the problems he has, how the brain works processing sound, that he was not alone in having the difficulties and that they CAN be painful.

The reason we had persisted with obtaining an appropriate specialist referral was that, prior to treatment, J was completely uncontrollable and put himself at risk when out and about.  Problems were at their most acute when we used public toilets on days out as, if someone used a handdryer,  J would absolutely HAVE to escape the noise he heard.  If an emergency vehicle passed by with its siren on, he'd run away - anywhere, just away... His hyperacusis meant his body was taken over by its 'flight' response and that's just what he would do - exit/flee, without warning and run as far away as possible.

By undertaking a series of counselling sessions, which allowed J to talk through things and experience loud noises in a controlled and safe way (for him), progress was made.  He started with deciding on some words (a mantra of sorts) to write down and have with him in situations when he feared there may be a loud noise.  We worked hard to provide controlled exposure to all sorts of different sounds - hairdryer, vacuum cleaner, handdryers and so on.  It took weeks and J had anxiety charts to fill in and rewards were agreed (yes, they were all Lego!) for when he met his targets.  He liked the charts, targets and rewards.  The continued work with exposure to sounds was a chore, he didn't like it and it was a MASSIVE undertaking to complete the London clinic's treatment plan and attend for every appointment.

Slowly, very slowly, J was able to switch the vacuum cleaner on and off.  Then, he'd switch it on for 5 seconds, then 10 and so on.  Next he'd stay in the room whilst the hairdryer was on.   And so on. Tasks were agreed with J in advance and he not only had to repeat them, he had to work to remain calm and log his worry level.  Initially it was really small steps but, amazingly, after months of hard work, J was able to use a hairdryer himself, tolerate the vacuum cleaner and be far less stressed by hand dryers when out and about.  He now regulates himself when a siren sounds and will often say out loud "is that something I should worry about? No? OK. Carry on, it's all right."

J still has ear defenders (yellow of course!) which are shown at the top of this post.  We were advised that using ear defenders can make matters worse (as they may not be with J when he experienced a loud noise) and often they worsen tinnitus (or rather it becomes more noticeable as the background/white news is reduced).  However, J does take his ear defenders in his back pack to places where he knows there is going to be a short burst of loud noise - eg his disability sports day where the event's start is marked by a fanfare, played by a military corps on brass instruments, in an enclosed and echoey sports hall.  He wears them for as short a time as is possible.

We know J has sensory processing difficulties which together with hyperacusis and tinnitus can make visits to busy places such as shops and cafes unpleasant.  Add to this his challenges with his autistic spectrum condition and his associated/additional communication difficulties and it becomes easier to understand why the 'simple' act of asking for and buying a drink is, at the moment, impossible for him.  What the setting brings to J is a seemingly overwhelming set of "everything" that, in his own words, "paralyses me with fear and worry".  He has been working on a chart to share with his therapists in an attempt to find a way/provide him with the means to buy a drink and his favourite cookie.  He WANTS to do this.

When he's made progress, and I am sure he will given time, then we will blog more about it... and perhaps share the whole of this chart (which he worked on today and sparked an interesting twitter chat).






NOTE - The audiology professionals' magazine Audacity has an article on the clinic J attended here and how it has a programme to assist with childhood tinnitus (see page 26 onwards).

We also blogged about J's tinnitus here.

Jargon Busting? Maybe...

When you get into the realms of Special Educational Needs and Disability (SEN/D) a whole new language opens up in front of you.  At first, a decade ago, we went along to meetings where 'professionals' (or service providers) were spouting off terms that we had never heard before... and so the struggle to educate ourselves in this new environment and language began.  At the outset we (naively) believed the 'professionals' would know best as they would have experienced the difficulties we were talking about many times before and J is our only child.  This was a major mistake.   We should have been warned that many 'professionals' have such a honed area of expertise that they couldn't see J as a whole person - merely talk to the particular area in which they prided themselves in knowing alot about.  Rarely do the 'professionals' we meet see J as a whole, rarely do they go away and seek information prior to subsequent appointments and rarely do they explain, properly, what in the world they are wittering on about.... for that is what it sometimes (often) seems like.

Over the years, we have learned a huge number of TLAs (Three Letter Acronyms) and shorthand speak for 'things' that relate to J.  Starting in pre-school with SENCo - Special Educational Needs Co-Ordinator making an IEP - Individual Education Plan.  Moving through to LA - Local Authority and 'professionals' such as EP - Educational Psychologist, SLT (SaLT or S&LT) Speech and Language Therapist, OT - Occupational Therapist, PT - Physiotherapist.

Later came the dxs (diagnoses), treatments, investigations, assessments and discussions about difficulites: DCD - Developmental Co-ordination Disorder, ASD - Autism Spectrum Diagnosis/Disorder, AS - Asperger's Syndrome, LD - Learning Difficulties, EDS - Ehlers Danlos Syndrome, SPD - Sensory Processing Difficulties/Disorder, CAE - Childhood Absence Epilepsy, AED - Anti-Epileptic Drug, SI - Sensory Integration, MRI - Magnetic Resonance Imaging, EEG - Electro Encephalo Gram, CE - Conductive Education, VF - Video Fluoroscopy, SIPT - Sensory Integration and Praxis Test, WISC - Wechsler Intelligence Scale for Children, CAMHS - Child and Adolescent Mental Health Service, CCG - Clinical Commissioning Group

Along the way you hear of other terms: DS - Down's Syndrome, CP - Cerebral Palsy, ADHD - Attention Deficit Hyperactivity Disorder, ADD - Attention Deficit Disorder, LAC - Looked After Children, OCD - Obsessive Compulsive Disorder, BI - Best Interests, CoP - Court of Protection, CAF - Common Assessment Framework, MH - Mental Health, EBD - Emotional and Behavioural Difficulties, PMLD - Profound and Multiple Learning Difficulties, SW - Social Worker, PA - Personal Assistant, VI - Visual Impairment, HI - Hearing Impairment, NT - Neuro Typical

Then the terms relating to legal challenges regarding education and disability:  SSEN - Statutory Statement of Special Educational Needs,  WD - Working Document, FTT - First Tier Tribunal, UTT - Upper Tier Tribunal, JR - Judicial Review. From 1 Sept 2104 SSEN will be transitioned to EHCPs - Education Health and Care Plans, LGO - Local Government Ombudsman, PHSO - Parliamentary and Health Service Ombudsman.

Not forgetting the DLA - Disability Living Allowance, CA - Carer's Allowance, PIP - Personal Independence Allowance, DSA - Disabled Student's Allowance, ESA - Employment and Support Allowance.

Unfortunately, this is in no way a comprehensive list of terms that are regularly bandied about in relation to Children and Young People (CYP) like J... it's a quick list that has come from a twitter chat (where TLAs come in useful to maximise the 140 character limit) in which someone expressed wholly understandable confusion around the terms being used.  I'd started this post ages ago but am now wondering if perhaps it may help a bit?  Whatever, it's being posted and can be used/not as suits.

Feel free to add more terms through using the comments below!