Lisa in the sky with diamonds…..

A play on words shamelessly stolen from the frankly legendary Beatles song “Lucy in the sky with diamonds” (tuuuunnnnee!) & as rumour would have it famously refers to LSD, a popular hallucinogenic drug back in the day (illegal FYI) & for all I know, possibly prevalent in the same/similar format today.

I’m still on the goooooddd legal drugs several times a day whilst my doses are being adjusted to appropriate levels and I’m still in the hospital (or spa package extraordinaire as one fiend/friend would have it) & have been overwhelmed and humbled by the lovely & vast load of cards, flowers, texts etc that you fab lot have thrust upon me. And herein I hate to confess lies part of the problem: I feel undeserving of your generosity, selfish in the extreme & basically pretty weak and pathetic – I guess that’s what severe depression, exhaustion & anxiety leaves you with.

It’s not even a question of not being good enough. It’s the feeling of being good for nothing, entirely worthless & lacking. I hate this feeble person I have become. Please believe me when I tell you this post is not about me fishing for compliments or hoping you will reply with praise in abundance – I am not self sacrificing/promoting; just trying to give a little insight into how debilitating and all consuming mental health issues can be & how they take over your life.

I’m allowed out of the hospital for brief periods on accompanied leave – either with a staff member if there is someone spare or released to Martin or a friend’s care as my “responsible adult” (ha!!!)

Although I have enjoyed popping into Harrogate for an hour or so just for a change of scenery (and to potentially find an acceptable substitute for the Dune shoes I’m still lusting after… total mission fail ūüôĄ) ¬†it’s a real sucker punch when the anxiety comes roaring in & all you want to do is be invisible, unnoticeable & back in the sanctity of the hospital. The return cannot come quick enough & often I need PRN (from the Latin pro re nata meaning as the circumstances arise) medication to bring me back to some semblance of serenity & normality (whatever that is) just to function. ¬†I’ve also (unknowingly & unintentionally) begun ripping the skin on my arms to shreds; not as a form of self harm but apparently a well documented side effect of severe anxiety. It’s not pretty & I don’t want my children to see it & worry but can’t seem to stop myself unless whomever I’m with points out what I’m doing.

People’s (on the outside world) ¬†well meaning comments can be hard to handle to: “you look so much better” “you seem so lively” or “it’s been 3 weeks so you MUST be feeling back on the road to good health now!”

Truly I understand these are all said with the best intentions and meanings (none of us really want to be told we look like crap particularly no matter what the circumstances) but myself and fellow inmates are learning to take things hour by hour or even minute by minute during the really terrifying, utterly disabling anxiety moments. Being told we look so much better or similar puts us under huge pressure to be that person for you, to live up to your expectations. Of course we are all terribly British with our stiff upper lips & brightly repeated “I’m fine!” even if we have a limb partially hanging off so to admit that your mental health, self worth, esteem etc is in your boots goes against every fibre of our being and it’s not even as if you can especially see something is actually wrong with us so we feel even more fraudulent. I realise I may be generalising too much here but certainly this is representative of the majority of my fellow (spa) residents from chatting it over.

The last few days have been particularly hard as I have had by necessity of deadlines & time frames had to put a formal letter of complaint together against both the education department, children’s social care & the emergency duty team to follow up the complaints I put in by email.

This has dragged up a huge amount of unpleasant emotions, memories, the feelings of overwhelming fear and desperation and exacerbated my exhaustion but needs must and as I may have mentioned once or twice when it comes to my children, I am lion-hearted. I also hope to set precedent so that no other families will have to experience what we have been through over the past 18 months or so.

So am I getting better? Honestly I don’t know. There are certainly some chinks of light at the end of the very long, dark tunnel. But the thought of what happens when I eventually have to face the various professionals when I leave here, ¬†the meetings I will have attend, my lapse in mental health being held up ¬†in judgement as to my failure to parent, not to mention the tribunal, caring for the kids & running the household again absolutely terrifies me. Paralysing, crippling self doubt abounds & in discussing my risk assessment & care plan with the staff recently, my level of risk (to self not others) remains the same.

In the meantime if it’s not time for the gooood drugs or I can’t have any more PRN, I have found a fairly helpful interim substitute:


Thanking you all ūüėć

Caffeine, compassion & the crazy jigsaw lady…

I am the one in 4. That is the statistic (currently) for those who will experience a mental health crisis at some point during their life time.

I am in a place of safety & being well looked after by caring, compassionate & dedicated staff; & let’s not forget my fellow ‘inmates’ as I affectionately think of us.

It is a strange twilight sort of existence. By day 2 in “The Big Bother House” I railed at the staff: “I don’t know what’s expected of me! I don’t know what you NEED me to do!!” They smiled kindly & sympathetically, patently having been asked the same question many times over & their answer was ‘we expect nothing.”  And that’s just it; there aren’t prizes for perfection, goals here are very different & to utterly bastardise a well known phrase to fit my purpose: one small step for man is one great leap for mankind…or something. 

Just being in the moment is enough. An achievement might be as simple as eating a communal meal or a walk in the garden. 

Get yourself showered in the morning or don’t, get dressed or stay in your pj’s. Eat toast or biscuits, do something involving exercise, (horrific!) attend group therapy or make a gazillion things out of cards/paper/sparkles (but don’t expect to keep custody of the scissors). No one judges. 

The lack of hooks for towels, hangers, door handles anything with sharp edges & 15 minute observations that the staff try to carry out as an unobtrusively as possible are noticeable but not bothersome. I’m slightly less keen on having to request my razor from its storage box in the staff room every other day to avoid my yeti impression but it’s not a deal breaker (yet). 

Every day life carries on distantly around me. I’m peripherally aware of meetings, emails, phone calls & my loved ones holding the fort for which I’m unspeakably grateful but in a very laissez faire manner. That might be the drugs talking…. I have some very good ones on board that leave me alternatively slightly floaty or very zen. There’s stuff to help you sleep, stuff to chill you out, stuff to lift the mood or in the case of some fellow inmates stuff to bring them the f*ck back down to earth… I’m in here with a former governor of the  Bank of England, someone married to a Hollywood producer & someone whose met the Dalia Lama. Is it true? I have no idea; nor frankly do I care. 

Of course it’s not all drugs, there are therapies, both group & 1:1, relaxation groups, challenge sessions & even a weekly massage. There’s a local indoor heated pool at a nearby hotel & a gym for those so inclined. A particularly good friend whose known me for umpteen years & then some joked I’ll do anything to get a spa weekend…. 

We are all here fighting our various personal demons and wrestling our consciousness. Sometimes I feel like Sisyphus & the stone on my back & the drop down that hill is a long way to fall, crushed under rolling rock.

My feet of clay, the toppling off my pedestal lies firmly at the hands of the various ‘support’ services who essentially told me to suck it up butter cup & jolly well keep coping, despite my desperate pleas that I was failing due to exhaustion and fatigue. I’m not going into that further because legally there are many issues that need to be addressed. 

Although I still feel shaken to my very core, weak, feeble & ashamed of my self indulgence,  I am lifted by my fellow warriors, sharing their biscuits, proffering cups of tea & joining me (the crazy lady in the corner snuggled in my dressing gown) doing endless jigsaws.  

Just don’t take away my coffee machine or then I might really go batsh*t crazy…. 

Fractured….

I see you sitting there, shell-like, hollowed out. Disconnected from what’s around you. Present but not.

I felt you slip away on gossamer thread, so fine & yet so strong…but only to a point. The elasticity has gone, worn out like the saggiest of greying bras.

You sense you are a drift but it is not the gentle bobbing of the sea current on a warm summer’s day; more the angry swell preparing to form a crashing breaker.

There is no physical pain but the detachment is bewildering. Not comfortable, not sharp but discombobulating. The edges are raw & scratchy. To steal from  Alanis Morisette “a jagged little pill.”

Watching from inside, outside looking in, 2 halves of the same coin & yet not. If the pieces can be put back together, will you see the glue lines that bind & create a tough, resilient polymer or will you see the fractures, brittle, raw, not pretty to look at? 

I get knocked down….

 

I have an ear worm … Clearly harking back to my ‘yoof’ and revealing my age but Chumbawumba’s Tubthumping lines (https://en.wikipedia.org/wiki/Tubthumping) “I get knocked down but I get up again seems particularly appropriate right now.

I had a phone call this afternoon which didn’t fill me with joy but at least it was honest and kept me informed regarding the progress, or rather the lack thereof re Mrs Jones’s son’s school placement .

Unlike all other lines of communication by the parties involved which seem to have gone strangely silent….apparently e-mails go unanswered as do voice-mails or are merely shunted sideways for some one else to pick up the baton and run with, the assessment officer has continued to provide us with support and encouragement; has revealed herself to be as frustrated as we are at the faffing and procrastinating. So I’m erring by the sentiment that no news is good news.

Except it’s not and unless I am very much mistaken, the Jones family will be heading down the tribunal route to secure an appropriate school placement for their son. Panel’s request following last meeting to look at a further 3 schools was, as we largely suspected fruitless and just a waste of time and resources. None of the 3 schools detailed can meet need – hardly surprising since 2 had previously confirmed verbally that they were unable to do so; quite why the powers that be thought they would magically change their mind when issued with paperwork, I do not know. Even so, nothing further can (apparently) be progressed until panel meet again on 6th March. Tick tock, tick tock, time marches on and James’s education continues to fall far, far short of his needs.

So presumably we have reached a status quo. Frankly, I am tired of this bulls*t and want to cut out the middle man, stop waiting for them to fill in their forms, rustle their papers and convene their meetings. As my Dad, so quaintly says: “either pi$$ or get off the pot!” But I don’t even have the ‘luxury’ of taking the county to tribunal until we have gone through the motions of whatever hoops they decide have to be jumped through next – after all ‘fair and due process’ has to be followed – can you tell my scepticism? In my opinion this falls under stalling tactics and denying any need for expenditure in the interim.

If I sound bitter and twisted, I guess it’s because I am and I loathe that but the system grinds you down, wears you out, leaves you a husk of your former self.  Is this an admission of defeat? No, I won’t go quietly. Maybe the powers that be are hoping if they can deflect, retract and throw numerous spanners in the work I will go away, lie down and give up. Clearly they have not dealt with their fair share of special needs parents then.

So in the inspired words of Chumbawumba “I get knocked down but I get up again, you are never going to keep me down”…and whilst there may not any whisky, vodka or cider drinking, their might be some prosecco quaffing….and when the Jones’s eventually WIN the day (for they WILL prevail) there might even be some champagne opened.

 

 

 

 

 

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…. ūüė¶

 Edvard Munch – The Scream

Eyes WIDE Shut…..

Do you remember my friend Mrs Jones?(https://definitelynotthewaltons.com/2016/05/10/once-upon-a-time

We met again recently for coffee. Truth be told both of us could have done with a large gin followed by a prosecco chaser but it’s generally frowned upon at 9 O’clock in the morning ¬†and however much we tried to pretend it was 5 O’clock somewhere, I think even for us that was reaching.

Mrs Jones has had a tough summer. She’s not really felt up to chatting about things much and it gets a bit boring, painful, not to mention shameful to divulge too much. When the online food delivery arrives, you can bet your bottom dollar that the driver doesn’t really want your life story in response to “and how are you this morning?”

Mrs Jones knows too that once you open the floodgates, you risk breaching the dam so most of the time she keeps it inside, stiff upper lip and all that. After all isn’t it what we quintessentially British people do best? (And perhaps explains at least part of the reasoning behind the UK’s rising mental health crisis?)

Mrs Jones has learned not to trust, not to expect too much and most of all not to hope. The various agencies that assured her they would spring into action in response to James’s increasing anxiety and therefore violent outbursts against himself and the rest of the family have all gone suspiciously quiet. False promises, empty words.

The teams that told her she and her family needed urgent support over the summer holidays and how concerned they were for everyone’s well being in a time of increased family contact went awol, or possibly at least to France; who can say? They have largely so far failed to return.

Even though Mrs Jones has had to contact the police on several occasions, disarm James who had located a hammer and used it to bash holes in the wall, break chunks of wood off his bed and threatened the family with said hammer; despite Mr J having installed locks on various cupboards to store sharp objects, medications and chemicals and having ¬† purchased a safe with a combination lock, (not to store immense valuables – no matter how much she’s hinted to Mr Jones about the diamond earrings she’s rather partial too) ¬†but to keep all the different keys to cupboards, the wine chiller, the garage, for James’s own safety as well as the wider family.

Reporting these numerous incidents to the authorities and those intricately, intimately part of the Jones’s life, those who Mrs J thought had the power to do SOMETHING has elicited nothing more than a raft of paperwork that could deforest the Amazon (she and I both hope they are using recyclable paper) and a pitying head tilt with a promise to follow up and report back…at some point….Good job Mrs Jones hasn’t held her breath; she’d have expired a long time ago but each time she has to go through this rigmarole, in the vain hope it might generate some actual support, a little more of her crumbles away inside.

James meanwhile is no longer able to attend full time school and is doing the core subjects of English, Maths and Science only. This has been the case since the summer term and Mrs J spent much of the time before school broke up for the summer driving James between school, CAMHS and the hospital as needed; this is hard enough when you have one child with issues, add in others, it becomes ever more problematic.

As the school year progressed, James’s anxiety meant he couldn’t take the school bus even at times of the day when he had to be in first thing or last lesson before coming home. Mrs Jones tells me she is seriously considering a crowd funding venture into cloning for the regular parent….I’m sure she’s on to something there.

Now that the Autumn term has resumed, James has again only been able to return to school in a limited capacity and scarily, the Jones family are as yet, no closer yet to having obtained an Education Health Care Plan (EHCP ¬† –¬†https://www.ipsea.org.uk/what-you-need-to-know/ehc-needs-assessments)

The Local Authority have 6 weeks from the date of application to decide whether they will assess a pupil for a plan then a further 20 weeks to discuss putting some kind of plan in to place and if that is agreed a further 26 weeks to hammer it out and implement whatever has been decided. A year then to plot a way forward at time of desperate need. The Jones family may still be waiting for something to be done this time next year!!

What the Jones’s would like and what James craves in terms of education AND respite is an education in a school that deals specifically with children who have high functioning autism, ADHD and PDA – Pathological Demand Avoidance – http://www.pdasociety.org.uk/what-is-PDA/about-pda

The Jones’s have managed to locate such a school. The school offers both day attendance and Monday to Friday boarding. James upon visiting the school, despite his initial trepidation and fear of something new, quickly blossomed before their eyes. His excitement after they met the headmaster, other teachers and pupils,¬†viewed the grounds and the activities and support available was palpable. James had found his niche, his happy place, his square hole to fit his square peg.

James was for the first time in a very long while, enthusiastic about the possibilities that education could bring him in such surroundings and perhaps of most importance, the head teacher (who had initially promised 30 mins of his time, but ultimately chatted to James for an hour and half, gave the family a personal guided tour and invited them to stay for lunch) recognised something in James that could be honed; something that could be worked on, to help James become a productive, well balanced, well educated and happy member of society over the longer term.

Ultimately the Jones’s, the headmaster and James himself felt this school would enable James to achieve what he is truly capable of ¬†academically and personally. It would promote his self esteem, life skills and education both in the short term and over the years ahead to ¬†ensure James could contribute economically, personally and professionally to the system of life.

However, although Mrs J has been assured by one department that James will definitely qualify for an EHCP, ultimately of course it, all comes down to that mother of all evils: CASH. Pure, hard dirty¬†money and therein lies the crux. Who will pay for this? How can funds be found? As Mrs J was advised by a source, the local authority have a duty to provide your child with an education; that however doesn’t mean the best education for your child, what meets their needs best; what best supports the family as a whole.

Such was the desperation of the Jones family to secure a place at this beacon of hope, they enquired about the possibility of self funding if they could somehow find a way. But this is not an option for this particular school and only with an EHCP and funding from the local authority can James attend the school. So what will become of this family?

James’s siblings spend large parts of their time terrified of their brother’s volatility, creeping around, never knowing what can or will set him off.¬†James’s siblings have witnessed and been subjected to his violent outbursts.

Recently his little sister was so scared of him she chose to stay on her bed and wet herself than venture into the bathroom. James’s brothers have been put in head-locks, kicked, punched, jumped on. One ¬†refuses to sleep in his own bedroom and another wants a lock for their bedroom door having heard James during a rage say he will kill him in his sleep.

They have seen James lay into their mother, using her as a punch bag in moments of sheer fury and frustration. Other adults have had to intervene on more than one occasion and the humiliation, burning shame of that, can never be under-estimated. James is hugely remorseful after such an outburst and for days after but it doesn’t stop it happening again.

The family live on tenterhooks, tip-toeing round trying to keep the peace. Family outings have become more problematic since James’s sensory processing issues have become more pronounced (he finds crowded places, busy places, noises of a certain pitch very difficult to manage and whilst the rest of the family enjoy heading off to explore and do things together, this is increasingly difficult and stressful to do en masse.

All the while, it’s clear to me and probably those around them, that the Jones’s family are barely holding it together; living in some kind of waking nightmare and sleep walking through life. But will those who hold the purse strings, those who have the power to provide some form of respite to this family see the bigger picture? Will they see past a balance sheet for one child and view the family holistically so that it doesn’t end with the rest of the children needing input from a mental health professional, from the police, from god-forbid, A&E or potentially worse still….

 

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