How do you sleep at night… part 2 ðŸ˜¡ðŸ˜¡

I’m a bit less ranty today but no less passionate so let’s get this done and written before I lose my impetus… never mind the will to live. 

I like to think I’m currently  channeling my inner Taylor Swift and her pals in the Bad Blood music video: 

(*above image may be subject to copy-right) 

But in reality I should be so lucky. I’ve spent far too much of the day with my youngest son on a hospital ward, wallowing, sat on my butt, scrolling social media and eating chocolate. Less Swift, more sloth;  I can feel the helplessness wanting to swallow me up; shut me down again. 

(sorry sloths everywhere who are probably outraged at the comparison) 

I’ve been extremely touched how many people have commented/got in touch or shared my previous post. Thank you. 

I wish what I had written didn’t resonate with so many but I am also grateful for the support and the sense of solidarity. 

I recognise the issues facing my family are far from unique. Judging by support groups I belong to, friends, social media and so forth, this utterly deplorable battle for services to provide and protect those most in need, those who don’t have a voice of their own, those with the least ability and energy to fight are being waged up and down the county. 

Whilst the difficulties faced may be slightly different, they all share a common denominator: the vulnerable, those in crisis, those society should be protecting and empowering. 

Forgive my Whitney Houston moment but our children ARE the future and if we don’t invest in them and secure the best possible pathway, what hope is there for society moving forward? 

I also know the elderly, infirm, mentally unwell and so on deserve their cause being championed in the same way. 

I recognise on a deeper level my attitude is simplistic and that something policy-wise, fiscally, has to give or change dramatically going forward. 

How do we achieve this? I don’t know; I never professed to have the answers as to what this should look like in terms of the bigger picture. 

All I do know is a seismic shift is necessary, society is screaming out for it. How we approach this, how we can achieve it is for somebody/ies far more qualified than I. (Otherwise I probably should be standing for government….🤔) 

The demands of a large, aging population who are living longer, the epidemic of obesity, drugs/alcohol/cigarettes, the advances in medical science meaning those who once would have met their maker because of cancers, heart disease, prematurity of birth and the terrifying increase in the so far unstoppable dementia are well documented. There can be no escaping the fact that expectations and demands for provision will increase year on year. 

All the while the funding for front line services is being reduced or in some cases done away with all together. Departments asked to find millions in cost savings, balance the books and yet still pull it out of the bag, somehow. 

Morale is at an all time low as evidenced by the mass exodus of Doctors, nurses, emergency services and so forth. 

I’m not naive. I know the country is on its knees financially and floundering in uncertain times: Brexit, the future of the NHS and government but the refusal to engage, instead throwing up wall after wall, challenge after challenge means there’s less money in the pot to provide even the most basic of services. 

Is it just me and people like me that can see the irony in money being spent on disputing and denying care instead of the care itself? 

We are informed of cuts to services/benefits/ grants every time we switch on the tv, open a news paper.  The effects of austerity on all aspects of social care, health and education (and of course the ripple effect on our police force, armed forces and such like) have been hiding in plain sight for many, many years

Why is it that the major political parties seem far more invested in scoring points at each other’s expense and plotting a coup to oust their leaders than implementing change and securing services for the greater good? 

I want to believe the bean counters genuinely care, that there is an appetite for change but they have become so blinded in covering their backs, their departments and their funds, (actually the tax payers funds) they have forgotten their original purpose. The other alternative: that they enjoy the power trip, playing god and causing abject misery has to be some dystopian fantasy…. doesn’t it?…

I do know that continuing with this ostrich style approach, riding rough-shod over those of us trying to cope day in, day out and strangling us in a bureaucratic nightmare, (presumably in the hope that parents/Carers will give up) ISN’T helping. 

If as much effort and emphasis was put into providing and fulfilling services, identifying and enabling children, parents and the wider family before they reached crisis point a great deal more would be achieved. 

I can’t help thinking that in fact the overall financial outlay would ultimately be a lot less, nevermind the impact and fallout on the family which ultimately add to the spiralling costs. 

How much do local authorities spend on retaining expensive legal council, defending cases and when challenged by parents on the attack, concede a case with moments to spare? The costs in such situations are not merely financial.

Whilst I cannot go into the ins and outs of our case in detail at the moment (until we receive the decision of the SEND tribunal I don’t want to prejudice any outcome) I can relate some of the damage and the wider implications the delays have caused us so far: 

  • Inability for autistic child to access mainstream education since March 2016 resulting in high levels of anxiety, depression leading to self harm and suicidal idealisations necessitating multiple in patient/out-patient hospital stays
  • Provision of interim specialised education package with 1:1 staff ratio/on occasion 2:1 to provide up to 2 hours study per day (where possible round child’s anxiety) 
  • Child unable to access GCSE subjects/make option choices
  • Involvement of multiple agencies on numerous occasions – police, accident & emergency, CAMHS, children’s social care, Young Carers, autism out reach, fostering team and foster carers
  • Local authority (LA) assessment and review officers to prepare EHCP, take information to specialist information panel on multiple occasions, liaise between relevant parties, issue consultation paperwork to potential schools 
  • Assessment of child by educational psychologist for local authority 
  • School transport (single occupant) with escort to ensure autistic child safely taken to and from school
  • Maternal mental health crisis triggered, medical intervention required,  inpatient psychiatric care for 3 months, multiple medications and therapies
  • Community care package to support maternal mental health, crisis team management, out of hours services 
  • Care package from disabled children’s team to provide direct payments in support of care for medically complex child thus enabling sole breadwinner to continue to work 
  • Emotional support to other children in the family necessitating pastoral support, teachers from 2 separate schools reporting back on children’s well-being and attending looked after children’s (LAC) team  meetings, approximately every 6 weeks
  • All children in family requiring support and intervention by CAMHS  to address trauma and ongoing psychological fall-out
  • Family engaging professional legal team and independent educational psychologist to prepare case for tribunal
  • LA engaging in-house legal advice and support
  • LA acquiring professional legal counsel to present at tribunal
  • Convening of independent tribunal and panel member(s) in official court to hear evidence from family and LA surrounding case 

How much does all of this add up to? This is not an exhaustive list and no doubt  there are things I have unintentionally missed/forgotten but I think it is a fair representation. It’s pretty depressing reading isn’t it?  

Has what I’ve detailed shocked you? We are just one family in a cast of thousands, dare I even say millions. 

Unless you or a loved one need to avail yourself of services, you assume it happens to others; not to people like us. 

We are now the others. 

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How do you sleep at night?… part 1…

Heads up, a warning: I am enraged. White hot, scalding anger that is making me vitriolic and bitter. 

I know it’s doing me no good and I should channel some inner zen but there’s no yin in my yang and frankly I need something else to focus on; some kind of drive to power forward instead of zoning out passively. Time to create a stink. 

I don’t as a rule swear very much. Mainly because I have spent and continue to spend a great deal of time round small folk, be they my own or other people’s and the fact that mummy has a potty mouth is not the kind of accolade I want to be renowned for.  It doesn’t mean I don’t think in creative Anglo-Saxon oaths but I try to restrain myself from actually launching into a tirade that would make a sailor blush. 

Over the years, it’s been quite amusing to find substitute words for the things that have nearly slipped out & turn them into something socially acceptable before the offspring absorbed it as their latest word du jour. 

Try to teach them please/thank you/hello/goodbye in polite company, you would think I was attempting to teach them the full works of William Shakespeare… in Flemish. Yet one *almost* expletive of a wangdoodling, cowbunkerling f-bomb amd such like and they have absorbed it by osmosis. 🙄

Tonight however. I make an exception. I am angry. So fucking angry. The fact that fucking just autocorrected to ducking as I typed it, has incensed me further still. 😡😡

I feel sweary. I feel ranty and shouty and full of words my Dad would get cross with me for using (even though he taught me most of them) I’m even tempted to use the ‘c’ one (& I don’t meant Christmas) – sharp intake of breath.

But I can’t have a good shout, unleash a stream of invective because yet again we are in-patient on Hotel NHS and there are a lot of very small people around whose parents would quite understandably be distinctly unimpressed.

So I’ll do my ranting, raving and effing and jeffing here on my blog; after all I did start my musings some years back in an effort to make sense of it all. Life that is. It’s been cathartic to brain fart away.  Download and dump the crap (d’ya see what I did there?!) 

Half the time I start a blog post with some vague notion of what I want to write about but no idea what will spout forth. I usually feel better by the end. I’d love to be all coy and twee and say I don’t care if people read it or not but actually that would be a lie. I do care. I suppose I need some validation. 

Tonight however I REALLY need you to read it, share it, spread the word. Because I’m sick of the powers that be getting away with it. Letting down vulnerable children. Leaving families in crisis, drowning in despair and fracturing already fraught and taut relationships. 

3 weeks ago today we took our local authority (LA) to a special educational needs tribunal in an effort to secure an appropriate, residential school placement for our high-functioning autistic son.

This was a culmination of 18 months of fighting and battling and relentlessly dealing with the stalling, the hoop jumping bureaucratic, bean-counting process. 

Our 14 year old who should have chosen his GCSE options last school year and commenced this September term on the pathway forward to achieve his future potential has been entirely let down and cast aside by THE SYSTEM.

Would it shock and surprise you to learn he’s received less than 2 hours education per day since March 2016? I know it does me. 

I also know if we personally elected he only attend school for this woefully inadequate amount of time, over such a long period, we would have been threatened with fines and imprisonment by the education department. But this situation is not of our making so apparently that makes it legal, ok, just tickety-boo and we can all smile sweetly, nod and wave because they are trying THEIR BEST. Except they are not. 

The powers that be are far more concerned with covering their departments backside, zealously guarding their pot of funds so they don’t actually have to put it towards what’s in the best interests of the child. 

 I hasten to add this is NOT the fault of his current school who have done everything and then some to support him and us as a family in providing him with a suitable education whilst time ticks on relentlessly. But they don’t have the resources or specialist autism knowledge to support the style of learning and can’t provide the low-sensory low-stimulating environment he needs to facilitate his learning.

Even so his mainstream school have strived to do all they can; he has 1:1, sometimes even 2:1 sessions in an area well away from the hustle and bustle of the main school. They have come up with creative and thoughtful ways to stimulate him;  to forge a kinesthetic approach that captures his imagination where they can. But it’s not working. 

On that at least the LA are in agreement on. But that’s pretty much where it ends. 

I knew I should have smelled a stinking, great dirty rat when the  placement panel convened in October last year and agreed that our son did indeed require a specialised educational establishment. 

Not for us the refusal to assess for an education health care plan (EHCP), not for us the refusal to grant such a plan and not for us the dispute over main stream or specialist placement. So I should have known. It had all come to us far too easily.

Having had the benefit and heartbreak of reading other parents accounts of the lengths they have had to go to even just to get their  LA to agree to assess, I knew we had been extremely, for want of a better word, ‘lucky’ 

But really that’s where our luck ran out. It’s much harder than you think to find appropriate, specialist education. There are a myriad of schools out there meeting complex and varied needs but how do you narrow it down?

In actuality your LA are supposed to help you with this too. They paid lip service to it so I ended up resorting to google and a pick and mix approach, narrowed down by area of expertise and geographical location. 

I’ll spare you the laborious ins and outs of the very lengthy and exhausting process. Suffice to say, after panel sat in January 2017, they decided they didn’t have enough information on our case to make a decision. Sigh.

In February 2017, although all the information from the 3 schools we had received provisional offers of placement from (we had approached more than 12 by this point who couldn’t meet our son’s needs) the panel asked to consult with yet another 3 schools. Of course if they had read the case notes properly they would have seen that 2 out of the 3 had already been approached by us and felt unable to offer a place. The remaining school was full and wasn’t suitable for reasons I’m not at liberty to go into. It would be an understatement to say I was fuming.

The assessment and review officer (ARO) acting for the LA tried her best and wanted to expedite matters instead of making us wait till the March sitting. She was new and fed duff information from people higher up the food chain who left her carrying the can after dangling false promises.

The people with THE POWER don’t like taking your phone calls. They are it seems unable to respond to email, even when you have their direct email address. Their phones must also be unable to make out going calls as they never call back and mysteriously all voicemails go awol. Or something. 

Apparently they can reply to your local MP if he/she gets in touch after you have involved them and made them aware of your dissatisfaction  but only with vague promises that matters are in hand and will be dealt with. A word to the wise: don’t hold your breath. 

So March 2017: to our dismay,  panel named a wholly inappropriate day-placement school some hour or so away from our home which they expected our son to travel to and fro on a twice daily basis.  

Having previously viewed this particular school, I had submitted a lengthy explanation highlighting why the establishment, the cohort of students, the academic remit (or lack thereof) and lack of opportunity to promote our son’s social/emotional development in a holistic over-arching approach to his education were not just incompatible but potentially very damaging and in the worst case scenario likely to exacerbate his anxiety, self harm tendencies, suicidal idealisations and more extreme behavioural difficulties. These concerns were also backed up by his psychiatrist and psychologist from CAMHS (child adolescent mental health) in 2 separate letters. 

It will hardly comes as a surprise that the school the LA had selected was the cheapest option. 

I was swiftly reminded that the LA only have a duty to provide an education for my child and if they can prove that is enough, it doesn’t matter what we know to be in his best interest, what has already proved dividends in students with a similar make up, what’s in the best interest of society over the long term in aiding him to achieve his potential, thus ensuring he contributes economically, socially and attains independence; to negate relying on the state for benefits, or support services. The school we have found and the costs associated with it are ‘incompatible with the public purse’ and therefore they can refuse to provide it. 

They accepted the school we had found is superior in every way; they accepted it could meet need and that  like on like it would (based on past performance of students very like our son) offer him the best opportunity and chance of success going forward. Indeed The Judge at tribunal was very clear on all these points.

Yet the LA refused to concede. They have played dirty; suggested we have stalled the case by refusing to ask for an earlier tribunal date – although fully aware that the independent educational psychologist we had asked for input from couldn’t assess until the end of June. Paradoxically, once the extremely enlightening report had been shared with the LA and we suggested moving up court proceedings, they couldn’t accede to our request. 

Although the statutory dates for submission of evidence were clearly set out in writing and which both parties agree to abide by, the LA suddenly found a pressing need for their own educational psychologist to assess our son, although they hadn’t deemed it necessary since the previous visit a year ago. Funnily enough they then asked for the revised report be admitted into late evidence.  

Surprisingly they also suddenly discovered a letter that had been ‘misplaced’ from our son’s psychiatrist (and which we had never been party to even though we have always been copied into all other correspondence to date) which were counter to 2 previous letters she had written supporting the need for a residential specialist school and expressing her grave concerns to him being placed in an environment such as that outlined in the LA’s chosen school. How very curious indeed that all this information had only just come to light…..

To be continued…. 

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

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….