What a fu**in* liberty…..

I am cross!!img_1256

My nearest and dearest (and not so nearest/dearest!) will attest to the fact that this is not a good state to find me in.

I have been chatting to my friend Mrs Jones. Like most parents, she is lion-hearted when it comes to her children and their needs; her own.. not so much…. but cross her children or deny them their rights and be prepared to unleash a hell-beast…or at the very least a woman not to be taken lightly.

So what is my current vexation? Honestly, it’s more of a case where to start right now…. I could witter on about Brexit or The Donald; I could bemoan the ever-increasing fuel prices, electricity hike and the weather (how terribly British) but right now, it’s a little more ego-centric.

In the words of Catherine Tate’s Nan character (link below just in case you need a quick reference point)  https://en.wikipedia.org/wiki/Joannie_Taylor “What a fu**in* liberty!!!!” I’m also quite partial to her teenager Lauren Cooper’s “ain’t even bovvered” except right now I am. Very.

Mrs J has been trying to sort out school for her son James since main stream education has been such a spectacular fail, in spite of the school doing their utmost to support him and his parents.

James has been out of full-time education since April last year. He’s a bright boy: capable, intelligent, insightful (as far as teenage boys, especially high functioning autistic ones go)  but the intensity of secondary school, the 2000 odd students, the constant moving from class to class for different lessons, the noise of bells ringing, corridor chatter and the hustle and bustle of every day life in a large building are too much, too over-whelming for his sensory processing. The added influx of teenage hormones and puberty have made a difficult transition from primary school to secondary impossible.

James is currently year 9 but in order to reduce his stress levels, anxiety and depression and thereby the impact on his home life, he has only been doing core subjects of English, Maths and Science since last year; and to be honest, even getting him to attend those lessons is more miss than hit. Essentially his current school are baby-sitting him to ensure he maintains some form of eduction in the very loosest of terms.

Of course Mrs Jones is beside herself with worry; What will happen to James in the future? Will he be able to sit GCSE’S and if so, since he has missed so much schooling, how will he catch up to achieve passable results? Will he be able to continue to some form of higher education or vocational course? Whilst Mrs J is under no illusions that exam results are not the be all and end all in life, they do open doors for her son’s future.

Potential college courses, employers etc will need some kind of yard stick to measure against when James seeks independence later in life. For his own self-worth, self-esteem and satisfaction James will need to reach some kind of bench mark, especially with his contemporaries seeking careers, opportunities and  embracing whatever life throws at them. James will need to prove his capabilities.

Although his 13-year-old self is quite happy to spend the majority of his time on the X-Box and achieving “Flawless” on Destiny (neither Mrs J or I are quite sure what the means but we know it makes James inordinately happy!!) James will need to exist in a society that is dictated by finances or the lack thereof. Frankly with the current economic state of the UK and its benefits system, who knows whether there will be anything available to support those in need? Not to mention, James should be a valued, contributing member of the work force; he is more than capable, at least academically, of achieving but his needs must be met in a very specific educational environment.

James now has an EHCP – Education and Health Care Plan – https://www.gov.uk/children-with-special-educational-needs/extra-SEN-help but frustratingly, in an already lengthy and drawn out process, Mrs J has reached a stale-mate with the local authority.

Back in September 2016, after assessing information from James’s existing school, James himself, his parents, CAMHs, Family support Team, Social Care and lord knows who else, a dedicated panel called APP (I can’t recall what the initials stand for) met to consider all the relevant details surrounding James education and what best meets his needs.

It was agreed that James needs to be educated in a specialist provision, preferably one that specialises in high functioning autism and social, emotional and behavioral needs. Both Social Care and CAMHs stated that a facility offering a residential setting would be in the best interests of James and his family to provide all parties with some form of consistency, routine and  respite.

Whilst neither Mr or Mrs J had specifically entertained the idea of a residential placement, nor was it something they had ever wanted for any of their children (despite growing up with a lust and insatiable appetite for Enid Blyton’s Malory Towers and St Clare’s tales, boarding school and the likes there of was something of anathema to Mrs J in reality) James struggles with the disruption that comes as part of having a medically complex sibling and no immediate family as a support network in times of difficulty or crisis.  Therefore a residential setting would provide consistency and routine, particularly at an already stressful times for James and his wider family.

The local education authority (LEA) advised Mrs J to look at schools of their choice, having agreed that there was nothing within county that could meet James’s needs. Whilst in theory this sounds fantastic, an open invitation to consider whatever was out there, it was actually quite difficult to know where to start. If you type “autism specialist schools in the UK” into google (other search engines are available!) you get more than 895,000 results.

Whilst you can narrow your search criteria discounting schools that focus on traditional autism rather than the more recently labelled “high functioning” (an expression I hate passionately since it does such a disservice to ANYONE on the autistic spectrum for a myriad of reasons) it is still akin to throwing a dart at a map of the UK and hoping it lands somewhere favourable.

Panel did suggest 3 schools to view and paperwork was duly submitted to these establishments by the LEA but very quickly 2 out of the 3 came back to advise they could not meet need.

For obvious reasons, the LEA, CAMHS etc are not allowed to “recommend” schools, although they can give suggestions of where to look and duly did so. Mrs J also consulted the oracle that is Facebook on various autism support sites, special needs etc. After all, real-life experiences of other parents is invaluable.

SENDIASS   (http://www.sendiassleicester.org.uk/what-sendiass) suggested a web-site that offers a sort of “Pick ‘n’ Mix” (far less exciting than the sweetie stands in the fondly remembered Woolworths but I digress) option to schooling – type in your child’s needs/issues/support required and up pops a list of potential schools that *may*be suitable. Even so, this illicted over 200 establishments all over the country and with the constraints of time, family life, cost of getting there and physical distance, it was quite impossible to visit all on the list.

The Jones family decided to narrow down the search criteria to schools within a 2 hour distance and based on recommendations from people/parents who had actually utilised the facilities to make the task more manageable. They also discussed them with the assessment officer appointed by county.

After having previously had their fingers burned by a school they had submitted an application to detailing their sons needs, warts and all and upon visiting the Headmaster who had initially welcomed James warmly, promised he could help him achieve his potential and meet his needs, then when the LEA submitted formal paperwork being told  no, the Jones’s decided they would only visit schools after paperwork had been sent by the LEA  if they felt able to offer a placement, (subject to meeting James in person of course).

Needless to say, this entire process took considerable time but eventually various professionals indicated that subject to dotting the i’s and crossing the t’s, James would be in placement before Christmas 2016!! However, best laid plans and all that…schools have 15 statutory days to respond to requests and as it happened, all replies exceeded the given time scale.

This period of time coincided with James’s sister having surgery in London and her recovery was delayed by infection and some additional complications so Mrs J spent considerable time away from the family and then trying to get things back on track when they returned home.

By this point, Christmas was fast approaching and once replies had been received from the various schools, it was decided to schedule visits for the first week of January 2017. Things were looking up!

Several visits later, the Jones’s had found 2 possible schools, one of which they felt particularly would be in their son’s best interests and both schools had capacity. The Headmaster of the preferred option came to the house together with an educational psychologist to speak to James and review his needs and offered him a place unconditionally.

James was taken to view both establishments and watching him relax, feel excitement, understanding and a desire to partake was all the affirmation his parents needed to know they had found the appropriate placements. The fact that the LEA had also named these establishments as possibilities felt like a sign and so the Jones’s were sure they were on the home stretch and there was a frisson of excitement and hope that James would be in placement before February half term.

Having previously been told that their case would be taken to an interim panel due to the length of time events had been ongoing, the LEA assessment officer came back to advise that her manager had declined to pursue this with the higher tier and they would have to wait until the February meeting (APP meet once a month) for their case to be considered.

A small set back but not unexpected (everything is about cost saving don’t you know!) the family waited on tenterhooks for the outcome of panel on Monday 6th  February …..they waited…and waited….and waited. The assessment officer was great at trying to update even sending the family an e-mail just before she finished work for the day to let them know they had not been forgotten but she had heard nothing back.

Recognising that their son is not the only child with complex needs and that panel would have had many cases aside from their own to consider,  the Jones’s remained quietly confident that Tuesday would bring them much-anticipated news. It did; but not the kind that had them doing a fist bump.

In spite of over-whelming support and evidence from the numerous services involved, James’s own opinions,  in spite of pursuing some of the school options that panel had suggested, in spite of Mrs J having written a lengthy explanation as to why they had elected for one specific school as their first choice, incredibly, panel deferred their decision and asked that the family go back and look at 3 further schools not previously suggested!!! Furthermore, 2 of these schools have already been approached by the family and advised verbally they were unable to provide the kind of support James requires.

Mrs Jones veritably turned the air blue on hearing this news. It was indeed a good job all the kids were in school or their vocabulary may well have been “enhanced” – although it’s highly doubtful the teachers would have given the children star of the week for learning new and exciting terminology.

The family haven’t been given the courtesy of an explanation as to why their case has been deferred but it doesn’t take a genius to surmise it’s likely related to the costs of the schools involved – they would have been aware of indicative costings when first suggesting 2 of them back in October.

Whilst it is entirely correct and diligent that each authority can justify their expenditure, at what point in the scenario does this go beyond farcical??? What is to prevent panel from deferring the decision-making process again once these schools have been consulted? and potentially ad infinitum thereafter? It’s not so much that the goal posts have been moved, it’s more that the pitch itself has been demolished, bull dozed and the goal posts used to hang out washing.

It must be recognised that merely undertaking the EHCP process is costly to all parties involved  – educational psychologists, paediatricians, local authority, any and all parties involved with the family need to contribute,  visit the existing school, child and parents. Hours and hours of professionals time.

Whilst parents themselves do not financially contribute, (although indirectly in the form of taxes I suppose!!) the time factor alone is considerable and for working parents may necessitate them taking leave to attend meetings, file paperwork in appropriate time frames – multiple forms/questionnaires, do schools visits etc) and therefore it is in everyone’s interests to expedite the process.

First and foremost however, the needs of the young person missing out on their education must also be taken into account and on behalf of Mrs J I am vexed that panel are failing James. They are failing in their duty of care not only in respect of his educational needs but also his health and well-being and that of the wider family too.

It is fair to say this family are fragile; poised on the edge of exhaustion, stress and the relentless nature of 2 of their children having significant medical, mental health and emotional needs.

Ultimately, if James isn’t supported to achieve the very best of his potential, both academically and personally then the longer term costs to society in terms of benefits,  mental health, NHS care generally, possible criminality to fund his lifestyle or because he is unable to control his moods, assaults someone in anger etc  (an integral part of James’s education will support him in identifying his triggers and find ways to self-regulate and employ diversion tactics) then I fear the longer term costs could be far more substantial and not necessarily just financially…. 😦

 Edvard Munch – The Scream

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Once Upon a Time….

IMG_0186Let me tell you a story. Are you sitting comfortable? Then I’ll begin…

Once upon a time there was a (relatively) normal family. Let’s call them the Jones’s, although I don’t think may people will be aiming to “keep up with the Jones’s”  once they have read this. In fact perhaps, it’s more a nightmare, horror type story rather than a settle-you-off-to-sleep bed time type of thing?

So the Jones’s live in a lovely but ordinary house in an ordinary part of the world and are distinctly unremarkable. Perhaps they break slightly away from the norm in that instead of the requisite 2.4 children per family, they have 4 (these days I hear that 3 is the new 2.4 anyway).

Not only do they have 4 children of varying ages but they in fact have 3 with special needs. In spite of some trials and tribulations along the way and more than a few bumps in the road over recent years, the Jones family are a happy bunch, very grateful for what they have and definitely appreciative of all the best things in life. They closely adhere to my own motto: the glass is half full – therefore more room for wine!

Nonetheless, at times things have been a bit sticky and the Jones family have often wondered whether they accidentally broke a lot of mirrors, spilt salt or walked under too many ladders for the gods of luck and chance to ignore. Perhaps they had poked the evil eye with a very sharp stick?!

When you have one child with a medical/phsyical or cognitive difficulties it can be tricky for the whole family. Add in 3, top that with children who don’t fit nicely into a tick box, one size fits all diagnosis, it becomes like doing a rubix cube – & Mrs Jones would freely admit that the only way she ever successfully completed one of those was by peeling the stickers off and rearranging them to fit the colour order…

However, the Jones’s have an extra dirty little secret;  it shouldn’t be such a stigma but it still is, even in this day and age:  one of their children has a significant mental health issue triggered by his diagnosis of autism spectrum disorder (ASD)  – aspergers with sensory processing disorder.

Since Christmas last year, the Jones have witnessed a steady decline in their son’s mental health. He has become increasingly unhappy, rebellious, not eating or sleeping well, absenting from class, leaving home, even jumping off the first floor roof in the middle of the night and self harming frequently. The Jones’s have had to call the police on more than one occasion to enlist their help in finding their son and getting him safely home.

The Jones’s suspect that the combination of puberty, hormones and aspergers plus main stream secondary school education is over-whelming for their son. School, to their credit, have been on board and supportive, despite what must be a very frustrating and difficult time for them too, especially considering the sheer volume of pupils in the school. The Jones boy –  we’ll call him James – has a cracking sense of humour when on top form but can be exhausting in the extreme, demanding of time, attention and support, and exhibit behaviour not dissimilar to that of a tantrum-ing toddler, only with a much more inventive vocabulary!!

One of the problems with a main stream school is that unless the teachers themselves decide to read up in their “free” time on subjects like autism, they will have had the very bare minimum input and training for special needs children. In spite of the huge rise in cases of autism being diagnosed, trainee teachers are given a mere glance at the SEN world and may encounter their first autistic child when he/she presents in the classroom as disruptive, disobedient, likely  in their mind set, a right little sh*t, a product of questionable parenting. You might want to take a look at the vey interesting article: http://www.autism.org.uk/get-involved/media-centre/news/2016-03-21-teacher-training.aspx

Anyone who has dealt with a high functioning autistic adult or child will be familiar with the rigidity of mind set and literal thinking that encapsulates ASD. Over the years Mrs J has been on the brunt of many a sharply retorted, brusk response that wasn’t quite in keeping with her expectations. She has learned not to use phrases such as “Would you like to help me unload the dishwasher/tidy your room etc?” She will be met with a re-sounding “NO!!”

To neuro-typical persons, (as those with aspergers or aspies like to call us) this response is cheeky, rude and impudent in the extreme;  que explosion from Mrs J, meltdown from James and all hell breaking loose Chez Jones. In the world of ASD however, Mrs J has merely worded the question wrongly and it’s taken quite a long time for her and the rest of the family to adjust their ways and rethink what they are ultimately trying to achieve.

If Mrs J was to turn to her son and phrase her request in a far less excruciatingly polite British fashion “Please can you help me unload the dishwasher,” she might have been met with a grumble or two but ultimately, James’s reply would generally have been far more acquiescent. You see, those with ASD hear the word “LIKE” in the request and assume it literally and therefore that they have an option in the matter. When you are cognisant of how important your phrasing is, you will realise those with ASD are merely being honest in telling you, no they would NOT LIKE to do the aforementioned chores.

It is perhaps something James’s maths teacher could have done well to remember. James came home from school only recently telling his parents he no longer needed to attend maths classes and what great news this was! Suspecting that somewhere along the lines, things might have been lost in translation, Mr and Mrs Jones quizzed him further.

It turns out that James’s maths teacher had told him, he didn’t care whether or not James attended his lesson since it was ultimately wasting his own time and the teacher would teach the rest of the class come what may. Not quite the you don’t need to come any more that James interpreted.

Similarly,  the cookery teacher having told James to bring in ingredients to make a sandwich that he would eat. Since James doesn’t eat sandwiches in any shape or form, he was not to be persuaded that he needed to take in balanced portions of protein, carbs, etc etc. In his view, he didn’t need to take in anything and it didn’t apply to him. Mrs Jones tried to reason with him and explain what the teacher had really meant but James had clearly heard the teachers instruction and was not to be dissuaded. James’s sense of injustice at the detention that followed was magnitude and I can’t say I blame him really.

Of course it goes without saying that meeting one person with autism doesn’t mean you have met them all; very far from it but there are key, recognised difficulties that cause a variety of difficulties for those with such a diagnosis.  Although those of us who are neurotypical can struggle to understand and see things from the point of view of someone on the spectrum, imagine how much more difficult it must be to live in a world that favours the neurotypical? Since ASD is a social communication disorder, body language, facial expressions, tones of voice, nuances and social niceties are things that often go over the heads of those individuals with aspergers and the like.

Additionally, sensory issues are extremely common for those on the spectrum. Noise, colours, lights, the environment, textures, tastes and smells can all be much more vivid or paradoxically dimmed necessitating those experiencing difficulties to crave further or seek to repress the influx and assaults on their sense.

James needs high and intense stimulation in most areas. He has always liked to push himself to extremes. Many a time the rest of the Jones family have looked on in horror as James scuttles up the nearest tree, climbing to the highest, most unstable branch, calling triumphantly from the top.

The faster, higher more exhilarating the roller coaster, the more James wants to ride it. Which likely explains why in younger years Mrs Jones found herself riding, unaccompanied, the most vomit inducing rides known to man. James having queued only to be disappointed and turned away from the ride due to his lack of height would beg and plead a reluctant parent to go on his behalf and feed back on the ride experience. Mr Jones would sensibly plead a bad back and leave Mrs J to take one for the team as it were….

In the winter James likes to sleep with PJ’s, a onesie, fluffy slipper socks, woolly hat and cocooned in  the highest tog duvet that can be found. Squished in like a sausage roll, surrounded by teddies and all things fluffy is his happy place. Little changes in the summer and it’s rare to see James without his trade mark hoody, firmly pulled over his head. Shorts are greeted with a look of disgust even if the fickle British summer busts the 30 degrees C mark (that’s 86 F my US friends.)

Noise is a problem. On his terms, James loves his music loud and pulsating. The Jones house reverberates with Back In Black and similar on a regular basis but James cannot tolerate his younger siblings playing or crying. Noises like the water heater springing to life, the background hum of a restaurant or kitchens in the distance, seem physically painful to him.

As for food. Mrs Jones will roll her eyes at you and clutch her hands to her head woebegone. It is a well known fact that children can be notoriously fussy but it is well documented that those with ASD find food particularly challenging. It presents numerous sensory issues – from texture, shape, size and smell. James can’t sit at a table with cheese, his food can’t touch any other item on a plate, his toast – plain, no topping, cannot be cut in half with a knife that has so much as touched anything else and the thing that was his most favourite thing EVER, that Mrs J bulk bought in a fit of jubilation will be consigned to the back of the cupboard only days later with rallying shrieks of disgust and a hearty “I HAVE NEVER EATEN THAT SO WHY DID YOU BUY IT!!!!” tirade. Unless of course it’s tomato ketchup, in which case, only the most expensive brand that will do, splodged liberally over everything and anything….it may be that Mrs Jones has found that a certain supermarket rhyming with ‘piddle’ do a brand that is just as good and as long as she decants  it in to the pricier named brand bottle without anyone seeing, nobody knows, but that would be telling.

So where does this leave the Jones family right now? Well they remain on quite a learning curve since their son was only formally diagnosed 3 years ago despite frequent presentations from the age of 4 to the Gp, Health visitor and eventually a CAMHS (Children and adolescent mental health) referral  requesting help, detailing their son’s extreme behaviours, anger, aggression, rigidity of thinking. It took from the age of 4 to almost 11 to get the diagnosis despite what in hindsight appear to be a glaringly obvious, one could say neon sign pointing to ASD.

Whilst the Jones’s would agree that labelling a child unnecessarily is never a good thing, it left them wondering in the wilderness feeling like terrible parents for far too many years. It dented their confidence and self belief and did unquestionable damage to their other children who were both witness and victim of their siblings extreme behaviours.

And yet, even now, with a diagnosis on board, the Jones family find themselves once again in a time of crisis. Where James’s self harm and suicidal tendencies, his violence, aggression and extreme mood swings are wreaking their chaos on the family as a whole. It’s devastating to see their child experience this; to watch him helpless in the grip of the disorder that causes such extreme anxiety and stress. He is convinced that he is fat, ugly, worthless and useless; that he has no redeeming qualities and is stupid, unteachable, unreachable.

He is none of these things but cannot see other. He cannot find a way through. In his darker moments, he really does want to end it all and terrifyingly in the moment is unable to see any other way out. His parents want to simultaneously hug him so tight they will never let go and yet shake him to wake up and fight. They also feel guilt that they sometimes intensely dislike the havoc that is being wreaked on them, their other children, their home. It was bad enough when unidentified numbers only meant calls from hospitals or consultants, now  seeing  No Caller ID flash up on their mobiles often heralds a phone call from school detailing that James has gone awol, insulted a teacher or got into a fight.

The Jones’s were forced to admit their son to hospital recently following a profound escalation in his risky behaviours and concerns that they were unable to keep him or their other children safe. Multiple agencies are involved in trying to support the Jones family and CAMHS wanted to help, they really did. But the family had presented at 10am on a Thursday night to A&E and CAMHS work 9-5 Monday to Friday.

At the mercy of numerous professionals the Jones prepare to keep fighting the good fight. Surely with a diagnosis on board, accessing support will be so much easier than dealing with their other conundrum children who remain undiagnosed? And there’s the rub – government funding and cut backs to mental health services in the UK are well known and so the whole process is just as daunting, just as lacking in cohesion and perhaps even just as time consuming from a co-ordinated care approach?

Mental health services for children and young people in England were cut by £35million last year, whilst mental health beds have been reduced by 8 per cent since 2010. (Source: The Independent, January 2016)

34 out of 51 (Two-thirds) of local authorities in England have reduced their CAMHS budget since 2010. One council reported to YoungMinds a drop of 41% in their CAMHS budget from 2010. 

YoungMinds are the UK’s leading charity committed to improving the emotional wellbeing and mental health of children and young people. They campaign, research and influence policy and practice as well as providing expert knowledge to professionals, parents and young people. For more info:  http://www.youngminds.org.uk/about/what_we_do

So where are the Jones family now? Despite James stating quite clearly that he fully intended to try and take his life again, that he could see no reason for living, Mrs James was told that the paediatric ward was not the right place for him, that there were no inpatient beds unless to quote “he was dying of an eating disorder or in the hold of a psychotic episode”.

School have been crying out for more advice, more planning, more assistance going forward. They too have to examine the purse strings, magic up funds and resources to keep James safe and in statutory education until the lengthy process of an Education & Health Care plan, which there are no guarantee James will qualify for, have been decided.

The Children’s Prevention Team want to help but they need more information from CAMHS who need more information from school who need more information from CAMHS who need input from Children’s Services and Social Services. And then there’s the paperwork. This family in time of dire need and desperate help: well they can’t get that till the paperworks done so round and round it goes. It would almost be funny if it wasn’t so serious. Will the Jones family story end with “and they all lived happily ever after?” I really don’t know….