The Big Dipper….

“Life is a roller-coaster & you just have to ride it” so the song goes (ear-worm all day now).

When you look at the picture below, what do you see? (No need for rude comments thank you very much!!)

I’m guessing you see one person with more miles on the clock than a company rep car does in a year & 2 smaller (may I also add adorable, no bias at all….well when I say adorable, I should quantify with the word mainly first and also add / mini hell-beasties” as an alternative option) peeps.

Yes we are pulling faces, in fun (no one boffed as far as I know!) playing up to the camera & posing like the loons we are. Clearly having a good time.

So as one lady I met recently told me, pictures show everything, they tell the story, hide nothing & prove everything. And she has a point; we’ve all heard the adage “the camera never lies,”  Except it does.

The social media stage we are all a part of often shows only the good: that friend with the enviable life style, amazing figure, adoring husband, cutest of angelic kids, oodles of money, au pair, designer clothes & all the purported trappings of luxury, do we know what goes on behind the seemingly idyllic snap shots of #soblessed# or #livingthelife# Maybe she’s lonely, crying into her glass of Sauvignon Blanc that’s gone from the occasional one a night, to more & more of the bottle. Maybe her husband’s never home & she’s moody & passive/aggressive. He could be working all the hours to pay for the luxury life style or in a cliched twist he’s having it away with a fellow employee or maybe they just don’t actually like each other much anymore, who knows?

That other friend constantly posing (smug) pics of the organic, free range, fair trade ribbon courgette pasta spirals that she just knocked up in 2 mins because little Bella and Fergus just love mummy’s home cooked delights & wouldn’t know a chicken nugget (or heaven forbid a McD’s happy meal!!) if it bashed them on the head sideways! Yeah perhaps she knicked that instagram pic from Deliciously Ella/Annabel Karmel et al…. or (shush) simply stabbed an M&S ready meal (other supermarkets available) shoved it in the microwave & then lovingly ladled it on to plates, sprinkled a soupecon of seasoning over the top….. meanwhile little Bella & Fergus screamed from the corner & dumped the entire plate across the farrow & ball paint work & travatine floors….

I guess what I’m ramblingly trying to say is, a photo tells one part, the story we are happy to share but not the warts & alls hiding just below the surface.

I spent about 4 hours at home yesterday with hubby, parents & all 4 kids. This was a big step for me and don’t get me wrong in the main, I loved it. But it didn’t stop the paralysing fear when the kids were squabbling over who got to play with me first & for how long. It didn’t stop the shaking, nausea and trembling when Minx had a fit of the hee-bee-jeebies because I played with G-man first and therefore she equates that meant I loved him most. It nearly broke me; sent me rushing back to the dubious safety of my ward. Give up, give in, run away and bury your head.

These are the demons that want to control and dominate my world at the moment.

I’m incapable of making even the most minimal of decisions or choices at the moment: chicken or fish for dinner? Bath or shower? I can’t explain why it’s so hard to make such simple, roll off the tongue answers, I just can’t do it anymore. Maybe my life of late has been so full of choices, decisions, and & weighing options, my brain has gone into some protective shut down mode. Someone far clever-er than me & probably with a Doctorate in front of their name has some fancy word to describe it. All I have is me, myself and I.

And this evil, dastardly anxiety & depression is so sneaky, so cunning and sly; it has robbed me off my self confidence, esteem, self assurance. But I will not let this be a sob story, I will not let it define me or who I am. It may be where/what I am right now but life is a constant state of flux & I’ll ride with the rough & the smooth…. the highs at the top of the roller coaster where you wave your hands in the air like you just don’t care (& scream the adrenaline out) & the plunge at the bottom that whooshes the air out your tummy & leaves you praying half that it’s all over & in equal measure that you get to climb to the peak and sore again….

Returning to the ward is a double pronged approach with the sharpest of forked tongues….it brings a level of safety & the promise of prn meds plus the ever open doors from the nurses & doctors. But the undercurrent of aggression, palpable fear & barely simmering feelings of violence from some very mentally unwell patients is always there.

Every loud bang/shout/slam of a door, every alarm that sounds, has me trembling on edge, not knowing whether to stay put or flee to my ward (which is shared with a grumpy lady who told me off for doing my teeth too loudly at 6:30pm the other night & for putting my clothes away slamming cupboard doors 🤔 I’m torn between being empathic, sympathetic, understanding that she’s facing her own demons & difficulties that I know nothing about her own situation to going all Kevin & Perry Harry Enfield style & sulking & flicking the v’s up at her behind my hospital curtain. (Demonstrating my maturity on so many levels 🙄)

So to summarise, although I loved being at home with the mini’s, the ‘rents, the dog & definitely not forgetting the hubby who should be commended for holding it all together (& then some) offering me a safe haven, letting me blub ridicously all over him, even if I leave Alice Cooper style eyeliner streaks on his shirt shoulders. (He definitely needs nominating for some kind of award!) despite all the happy pics (which I cherish inordinately) yesterday was a hard day…

Back on the ward, I was snotty, and sniffly, and having a little pitty party for one in my pj’s with extra prn & a good old chin wag with the the lovely staff who didn’t offer platitudes but did provide cups of tea, extra meds & reassurance by the truck load

Guess it’s time to get back on the rollercoaster & shout “wheeeeeeee” ear splittingly loudly….

A demain…. 😘

Shiny happy people….

I’ve noticed a theme in many of my blog posts – the titles often spring to mind based around music. 

Although I’m not quite sharing the lyrical prose, more precisely the sentiment behind Shakespear’s line: “if music be the food of love, play on!” I think it’s apt that music evokes so many thoughts, memories, emotions (good & bad) nostalgia for the past, excitement for the future (nothing better than THE song of the summer fueling the count down to an epic, sun-drenched, sun tan lotion coconut wafting, possibly cocktail inspiring yearning). 

For those of you who are mere whipper snappers, Shiny Happy People was brought to us by R.E.M. (Have a google, promise it’s worth it) Apparently released in 1991 (now I feel REALLY old) the video even now brings back memories & the halcyon days of having learned to drive, gaining the first tastes of freedom as my parents allowed me to stay out at parties providing they knew where it was, if there was a responsible adult there etc) & the realision that I was on the cusp of adulthood, (although A-levels were less fun)  In my present frame of mind how over-rated THAT adult bit turned out to be…. but it would be wrong to be all doom & gloom & as a rule of thumb, I think those who know me fairly well would have, up until this recent blip (understatement extraordinaire) have considered me generally an optimistic, enthusiastic, life embracing & vibrant (not necessarily alcohol induced on the last part – stop rolling your eyes at me! 🙄) person.

Since I entered the hospital (spa) i’ve many time been asked about the Lisa of old by staff and inmates. What was I like before I crumbled? What did I do with time & to describe my qualities good and bad.

I think the person I used to be tried her best, be that whipping up cakes, volunteering for various jobs/school activities/charity work, getting Minx’s request for 10 different shades of nail polish on each set of hands/feet PERFECT, trying to interject exactly the right amount of enthusiasm & salient nodding to G-man’s newly created mind craft world number attempt 24598645 and basically, feeding/clothing & generally keeping on top of things as  best I could on the home/medications/therapies & ENDLESS meetings and appointments front. Any day we made it through with minimal maiming/moaning and a modicum of decorum, applied equally to kids, spouse or the fur babies was a day to be if not exactly celebrated, vaunted as a win won.

Most of all, I’d like to think I was a friend to many. One that could be confided in, counted upon; secret keeper, confidant, being around through the highs & the lows – proffering the cake & prosecco as needed.

I hope I have been a decent enough mother/wife/daughter/sister/auntie etc & been there for those in need be that family or friend.

I recall the old Lisa being terribly nervous but honoured to stand up & speak to a roomful of strangers at the Rare disease conference https://definitelynotthewaltons.com/2016/01/15/put-on-your-red-shoes/ and   https://definitelynotthewaltons.com/2016/01/20/d-day-red-shoes-part-2/to a room full of geneticists, high powered medical bods & patients & families about my family experience of raising an undiagnosed child.  

I attended workshops, coffee mornings, presentations & felt confidant enough in a subject that I was passionate about to make my voice be heard and counted. 

But that Lisa isn’t me, at least not now & doesn’t feel like it ever will be again. (Don’t you just love a pessimist?! 😳) 

Group workshops and therapy have tried to convince me she’s still somewhere there, buried under some rubble, a bit dusty, rumpled & crumpled but nothing that a quick febreeze and a dollop of self belief won’t sort out; however at this very moment, the disconnected, discombobulated partial person I am seems far removed from the one of old.

So that leads me on to my next party piece favourite, with a slight play on words; “if you’re happy and you know it…. take your meds.” Meds are my friend right now. I *may* have alluded to this once or twice (ahem) in the last 2 blog posts and I am quite certain there will be many readers out there shuddering at my cavalier attitude to essentially keeping the pharmaceutical industry in filthy lucre. But a valuable lesson I have learned in these darker days is that whatever gets you through is whatever you must do.  

The Doctors and nursing staff keep a careful and watchful eye on what you take as stated by the consultant and what is written up for PRN (as needed) and if you start getting a bit trigger happy on the prn front, they are not going to dish them out like smarties and are very keen that you try distraction therapies, chatting things over with your designated care-coordinator or even something as simple as a hot drink, walk in the gardens before willingly handing over the gooood drugs.

It is fair to say they leave you a little floaty, present but not quite there, comprehending of your surroundings & those of your fellow inmates but all the edges are softened, flattened & much less likely to leave me blubbering pathetically and hoping I’ve rammed enough tissues in my pockets before having to resort to wiping my nose surreptitiously on my sleeve (eewww). 

Today has necessitated plenty of tissues, prn & if I could pull it off pop star sun glasses worn at ALL times inside and out plus multiple avoidance, floor gazing & a pretense I’ve gone slightly deaf. 

Unbelievably, my 28 day (spa) hospital stay is coming to an end this Wednesday and despite feeling far from ready, able or even slightly like I can cope, the health insurance have not agreed to continue paying for care. 

Apparently after 28 days, I’ve had my lot & should be back to my usual, sparkly self. (Must make a note of that, can be my new daily personal mantra) 

My consultant did her level best to persuade them I am far from ready, she argued for day patient therapy & that was met with a resounding no. They even tried to secure me on-going therapy as an out patient since this should be covered under a separate claim area but apparently “the computer says no.” 

Since costs in a facility like this are in excess of £3000 per week, we are not in a position to stump up the moola for a continuing stay. 

Apparently the kids still need all their vital organs & my liver/kidneys will be more likely preserved in a prosecco/formalyhyde combo – pre admission obvs… haven’t touched a drop in here & even for the few days prior to admission – in fact still not entirely convinced that my significant jitter/tremor commented on during early sessions wasn’t down to prosecco withdrawal symptoms…. NB – entirely joking; despite my reputation as the lush of FB, I’m generally a one glass a night type girl and for clarification purposes, I mean a small, glass not one that can fit an entire bottle!! So purely on a practical front I can’t ebay anything off…

So what now? Well the consultant has asked for the crisis team from the NHS local team to review me urgently tomorrow & try & find me a bed in the local NHS hospital. 

The thought of having to go through this all again with new staff, therapists, teams etc is exhausting beyond belief & I’d be lying if I said I wasn’t terrified. But my bigger fear is that there won’t be local bed space & I will be shipped off to Scarborough or such like; being this is more than an hour away from the family home & the logistics of trying to retain & build up some kind of relationship with my kids, puppy, not to mention hubby, this is untenable as an option to me. So I will be left with the only option to return to the family home. 

Do I feel ready? Hell no. Do I feel I can “cope?” Not even slightly. Do I still have as my end game the “plan” that put me in here in the first place as my intention? Without a shadow of a doubt. So back to the selfish, weak, feeble, ridiculousness  & all the other things I loath about myself it is then…

Meanwhile tonight I will cuddle G/man’s teddy that he gave me for support that bit harder & hope the combo of anti anxiety/depression & sleep meds I took will kick in asap…. 

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 🙄)  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 😍

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…. 😦

 Edvard Munch – The Scream