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….

 

red-cross-image-3-for-blog

 

 

In This Moment…

I am not overly given to mawkishness or sentimentality on the whole; those who know me well and especially those on my personal FB page are more inclined to find me tongue in cheek ironic about my own offspring’s “accomplishments” (0ften used in the loosest sense of the word) ¬†than lauding the joys and wonderment of parenthood.

I am not one for hashtags #blessed# or #perfectmoment# (no offence meant to those who do: ¬†your wall, your choice) on every picture of my child or their offerings. Truth be told I only signed up to Instagram yesterday (and that was only to keep up with one of the teenagers) so I have a lot to learn about the supposed art of deluded smug parenting and a picture showing perfect days out whilst I’ve stood the other side of the lens muttering “what the actual fu#k you little dip-shi#s?? Why can’t you stand still for 5 seconds without poking/disemboweling each other?!” so I can snap a moment of ¬†proud parenting.

However today, sadly once again, my¬†SWAN UK¬†family grieves for one of our own and it’s hit us all very, very hard. I had the joy and the privilege to know this precious boy, his wonderful family and his gorgeous little sister in person. They were one of the first families I met when moving to Yorkshire who welcomed me, invited us to a meal and generally made such an effort to make my family and I welcome.

Cruelly in the space of not even 10 days, 2 beautiful SWAN boys are no longer with us and daily there are accounts shared of more whose lives hang in the balance, those who have received a devastating prognosis or forecast of what horrifically may lie ahead for their own child. In honour of those already taken too soon, those waiting for nature to take it course  and any other parent going through the worst news they should ever face, some ramblings came to mind. I cannot proclaim that they are worth much, nor that they will help at all but to me at least they are poignant and a reminder of what I often take for granted, so here goes:

In this moment I can

Choose to despair of the doh-vince and play-dough that has welded itself to my carpets and been traipsed through out the house requiring a jackhammer to remove it or I can smile resignedly thinking of the giggles that accompanied the making of the mess

In this moment I can

Grit my teeth for the hundredth time this day because at least 2 of my children are fighting, one is stirring by taking sides and one has left his bedroom a tip for the thousandth time or I can celebrate that my children are strong enough, resilient enough to shout and yell and drop towels all over the place

In this moment I can

Keyboard warrior type e-mails to chase up appointments for surgery and chase up department heads for EHCP (education and health care plans) information that should have been forthcoming weeks ago or I can be thankful that my daughter’s surgery will ultimately make a huge difference to her life and well-being, know that my son will get an education that meets his needs, maybe not today or tomorrow but at some point in the future.

In this moment I can 

Feel resigned to making lunch boxes for my children who will suddenly decide they no longer eat x,y or z simply on a whim or I can giggle at the fact that one who needs the most calories will probably only eat her sliced peppers and ponder if I can dip them in pot of (non nut infested) chocolate spread to boost her calorie intake.

In this moment I can

Rant about the newly bought but already misplaced school shoes, football boots and trainers ready for back to school tomorrow or I can take comfort from knowing my children are healthy enough, lucky enough to be heading into new terms and new experiences.

In this moment I can

Roll my eyes at yet another bath time that will see the bathroom looking like a typhoon has passed through with soap studs galore and toothpaste marks on the sink or I can delight in the smell of the Johnson’s baby bath and hair wash that really they are too old for but takes me back to their toddler years.

In this moment I can

Count down the seconds till the littlies are in bed and speed read begrudgingly through a bed time story or I can revel in my inner child, excitedly agreeing to just one more chapter of Harry Potter.

Parenthood is not all roses and laughter, nor fun and games but for every moment of frustration and anger, for every minute you wish, just fleetingly,  that you could be elsewhere, that they were older, bigger, more self-sufficient, someone else will be wishing they could hold their child one last time, kiss the top of a soapy head, shush their baby off to sleep, to just be in the moment.

Schroeder_Piano

Picture of the Peanuts character, Schroeder

For the Music Man RD: Play on little Maestro

 

 

 

 

 

 

 

 

 

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‚Äôs 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….

 

 

 

 

Escape! 

I’m on a train down to London. By myself! Sans enfant!!! I’m practically fizzing with excitement (which likely explains why despite quite a busy train, nobody has ventured to sit next to me! ūüėä) 

Those of you who have to commute regularly are probably perplexed by my merriment, & wondering if I am a little ‘touched’ as the saying quaintly goes. Well perhaps I am but not by grubby little fingers, no one bugging me for the window seat or because he/she is taking up too much space/breathing too loud or heaven forbid LOOKING at them. Added bonus, I haven’t had to share my Kit-Kat with anyone & my coffee is still hot. Result!

This dear reader is actual TIME OFF… & I get to converse with grown ups later in the day too! I’m giddy with it I tell you! (I’ll apologise now, especially to all the English teachers for my prolific use of exclamation marks)

So, what did I do to deserve this parole? This time off for good behaviour? Well there is the *slightly* minor matter of speaking to MP’s later this afternoon at an all party parliamentary group (basically a meeting that is not political party specific, affects the wider community & therefore theoretically is something all MP’s regardless of their political party or leanings should be interested in since it is likely to affect all their constituents.) I did email my local MP last week & tweeted him at 3:46 this morning. Funnily enough he didn’t tweet me back… Can’t think why. Although I haven’t heard back in response to my email either, I’m hoping he will take the time to attend & gain some understanding of why I feel so passionately about raising the profile of SWAN UK – a support group for parents/Carers of undiagnosed medically, physically and/or cognitively complex children.

So although I don’t know exactly what I’m going to say (after all I’m not sure what I might be asked!) I do know it’s a subject that I can speak with first hand experience thereof. The feelings of isolation, worry, fear;  the struggles of co-ordinating care between multi-disciplinary teams, departments & hospitals; the impact having an undiagnosed child/ren on the wider family both financially, emotionally, mentally & physically and so on & so forth.

To be honest since I was asked if I would be willing to attend, I’ve been more preoccupied with a wardrobe crisis. After all, I live, sleep, eat & breath the undiagnosed bit every day but it’s not everyday I get to play with the grown ups in the wider community is it? Since I still hadn’t settled on an outfit de jour until 10:20 this morning, I have been fretting slightly. Serious, efficient, business like are not particularly words that fit my current couture. 

My last paid employment was carried out from home & frankly clients had no idea if I was in my PJ’s,ball gown or even in the ‘altogether’ so my daily wardrobe is much more based around comfy, practical & what can be sponge cleaned with a baby wipe… My clothing predicament has also been challenged by the good old fashioned British weather; renowned for its ability to encompass an entire gamut of metreological conditions in the space  of a day; especially when factoring the travelling from ‘oop north” to “daaan saff” factor… Not to mention the dilemma of whether I travel in my posh attire or change on arrival (creases being a factor either way). Decisions decisions ūüė¨

I did suggest to hubby that the tax-payer should foot the bill for a new outfit for this opportunity. He looked somewhat perplexed & asked how I expected to float that one past HMRC, even with receipts. Witheringly I pointed out that since HE was A tax payer, I had in fact meant him. From his snort of derision and eye rolling, I took it as meaning a new frock was a no no. Sigh. 

Still, I’m sure you will be pleased to know that as in previous posts, I had already decided on my shoes quite some time ago. Not red ones this time but pink. 

So I’m now going to use my remaining  train time to read on my kindle uninterrupted by small folk squabbling & enjoy the rest of my biccie!

Until the next time….. Wish me luck!! ūüė≥