The Rare Conundrum…..

If I had a penny for every time my children have confounded the medical profession, I would as the saying goes, be a very rich lady.  I won’t dwell on the fact that if I had a penny for every time they have confounded me, I’d also be very rich…and probably less wrinkled, less dependant on caffeine (IV drip anyone?) Chocolate and wine but that’s another story.

However, let me elaborate why my precocious precious cherubs have elicited such responses as “we have never seen that before” or “that’s very unusual/odd/strange” and my personal favourite: “that just doesn’t happen!” – when confronted by my child doing exactly what doesn’t happen right in front of their eyes. 

You see my children, well 2 of them at least, are considered “rare.” On the whole I try to see that as a positive, albeit at times I think the whole world should appreciate their uniqueness by observing them inside a perspex case in a museum but usually those days are few and far between 😉

‘& here we have the lesser-spotted children horribles preserved for prosperity….’

2 years ago I wrote a blog piece to explain what being rare means and how it affects our family. If you would like to have a read: https://definitelynotthewaltons.com/2018/02/

Rare Disease Day is once again looming large upon us – 29th February 2020 to be exact. This year marks the 13th International Rare Disease Day which is held every year on the last day of February. 

Given that every 4 years the month of February inveigles an extra day into the calendar month and thus is a little bit quirky in itself, it seems especially fitting to celebrate all things rare in a unique month, highlighting the weird, wonderful and downright peculiar  (of the medical world you understand(!) – In fact this year there are reportedly 146 events in over 100 countries to raise  awareness on the day itself as well as  thousands of other events throughout February. You can learn more https://www.rarediseaseday.org/article/about-rare-disease-day

You may find yourself thinking that you don’t have anything in common with a rare disease or even know anyone affected by such a thing but if you will spare me a little more of your time, I’ll explain why in actuality, this misconception is most likely wrong.

Based on current data it is accepted that 1 in 20 of us will at some point in our lives be diagnosed with a rare disease and the majority of them, being so rare, will have no cure. Some of those rare diseases may be transient, others life changing and in the very worst cases, life limiting. 

It is not my intention to scare you or depress you (how am I doing so far?!) Merely to heighten awareness around the fact that rare diseases, well really they aren’t that rare and if you personally aren’t affected by one (or more) you are bound to know, possibly even be related to someone who is living with a disease or condition that falls under the rare moniker.

For those of you who are unfamiliar with my family background, I am a mother of 4 of the human child variety, married to the long-suffering Mr DNTW’s, owner (used in the very loosest of terms) of 2 crazy dogs and 1 cat. We used to have 2 cats but one couldn’t stand the melodrama of life with us and shipped himself out. Funnily enough he was also sort of rare, being of the ginger hue – ginger cats are apparently less common than the typical moggy; perhaps he just couldn’t face the competitive nature of this family in the rare stakes?

Furry friends

In a sense of irony that befits our family largesse, all our children have unique and/or rare genes and in a further twist of fate, we only discovered their ‘foibles’ for want of a better turn of phrase, in reverse age order!

I sometimes feel I have to add that bit in almost apologetically – the fact that we discovered this from youngest backwards I mean. When you exchange the usual pleasantries on meeting new people and the topic invariably comes round to the whats and wherefores of each other’s lives, they already think you are a bit bonkers because you have 4 children (or that you don’t have a TV – so, funny…ha, ha, ha….not!) Add in extra/special needs and they either assume you must have adopted and are therefore saintly or if they are your actual birth children, then you are clearly more than a bit soft in the head . Why would you go on to have 4 when you already have one or more with special needs?! Of course no one has been rude enough to say that to our faces (yet!) But you can feel the silent judgement all the same.

All the same, I will confess it was a bit of a poke in the eye with a sharp stick moment (understatement) when our then 17 year old (20 this year!! How?? Believe me I have asked myself this question a lot – I don’t feel old enough to have a 20 year old, although I definitely look and physically feel it) was diagnosed out of the blue with a congenital heart condition, solely as a result of a medical he had undergone because of his chosen career path.

Not only was this new diagnosis very scary – well to us as parents anyway, he took it with the brevity of teenagers and their immortality concept – I did have a bit of a why us moment? In fact I distinctly recall saying that in spite of us making beautiful, amazing and rather fabulous children, (offspring if you are reading this, don’t bother asking for a pocket money raise!) Mr DNTW’s and I are clearly a car-crash genetically.  

Considering there are approximately 7.8 billion people on earth, you have to wonder what the odds are that 2 people who are not related to each other in anyway other than by marriage (we have been asked by sooooooo many medical professionals over the year whether we are cousins/inter-family marriage and such like!)  manage to meet, marry and have kids, all of whom likely have extra needs all because of wonky DNA (technical term wonky!) from each parent; whose chromosomes whilst not an issue individually, in combination have resulted in the difficulties our children face.  There was a distinct wanting to rage against the unfairness of it all and a feeling of being given the shi**iest end of a really shi**y stick. It didn’t help that he received this news at a time I was also stuck in our local hospital with G-Man, (our 3rd) because of his own medical issues.

After a strong coffee (and probably wine) I gave my head a wobble and we began the medical process to discover more about his condition and the implications of it for his future. As these things go, if you have to have a heart condition, he has escaped relatively lightly. Whilst it is progressive in nature and will need addressing in the future, we already know that there are things that can be done when the need arises and because of our wondrous NHS, he will be reviewed regularly and receive the very best care and attention. 

According to an article produced by NHS England in 2016, congenital heart defects are the most common birth defect. Approximately 8 in 1000 children are born each year showing signs of disease and the figure rises still further to a prevalence of 4 per 1000 in adulthood – not quite sure why the discrepancy in figures. Perhaps because associated issues or co-morbidities of the disease are leading to an improved diagnosis ratio?   

Moving on. our almost 17 year old (another DNTW’s on the road later this year?? UK watch out!) is diagnosed with high-functioning autism, sensory processing disorder and traits of Pathological Demand Avoidance (PDA) 

Whilst it is right and proper that autism in his presentation is now more often referred to as autism spectrum CONDITION (previously stated as a disorder and within the medical/scholarly community, it largely remains so) it would be unfair to gloss over the difficulties that this diagnosis brings with it. 

Our son is many things: clever, bright, articulate on subjects he is passionate about (of which there are many) intensely focused on specific interests, able to recall events and facts from an astonishingly wide range of areas (and years of family memories, both a blessing and a curse!) and with a sense of humour that borders on cheek but *just* manages to avoid rudeness….most of the time. Sometimes I don’t know whether to laugh or wish I could gaffer tape his mouth shut; usually depends on the audience. 

But over the years, it has been hard to not understand each others perspectives. At times it’s  felt as if we were each speaking a foreign language with no hope of translation or commonality. It’s been scary and worrying and frustrating. 

Autistic people can find social interactions and communication in general problematic. There are so many surprising ways that we interact with each other so interpreting body language, tone of voice, facial expressions and even the spoken word can lead to a whole host of misunderstandings and anxieties which have knock on effects on self esteem, mental health and well-being.  

To witness his struggle to make sense of this world, to comprehend that the things we say are not always literal – only years later can we laugh about our miscommunications: the expression I used to use when in a rush to get out of the house in the mornings for school: “C’mon, get a wriggle on!” shouted in exasperation and then looks of disbelief at the child appearing to body-pop across the kitchen, which resulted in more shouting (not my finest hour). Or the look of horror on his face when I would say things like “Keep your eyes peeled” if I was looking for a car-parking space. 

Sensory difficulties in so many aspects of life too have taken their toll. Going out to eat at a restaurant, going shopping, holidays, day trips and even visits to family and friends require meticulous planning and contingencies. 

The intensity of the world around you when you are over stimulated by your senses  – hypersensitivity –  and your ability to regulate them must be extremely stressful for many autistic people and especially those with sensory processing difficulties. 

There is an excellent video courtesy of the National Autistic Society which demonstrates this very well: (be warned before viewing, this could be triggering for some people)   https://www.youtube.com/watch?time_continue=12&v=Lr4_dOorquQ&feature=emb_logo which my son tells me is very representative of how he feels when out in public. I know the first time I watched this I felt thoroughly over-whelmed and exhausted, craving peace and solitude by the end. School teachers I imagine this is a but a snap-shot of your day – kudos to you all.

Paradoxically people with sensory processing difficulties also experience significant hyposensitivity – under stimulation in certain senses, particularly tactile (touch) vestibularly (part of the brain/inner ear concerned with balance and eye movement) as well as proprioception  – awareness of one’s own body in space around you. These intertwined sensory needs can result in a craving for input in order for the person to self-regulate. 

These are all issues we have learned about and try to continually learn from in the best ways to support our son but it’s not an exact science.

So is autism a rare condition or one that’s being bandied about like a box chocolates? Hmnnnn, that’s difficult to answer. Certainly I have heard time and again that “autism didn’t exist in my day” more times than I care to recall. There’s a great meme, something along the lines of:

There was no autism diagnosed before 1830……

Mount Everest wasn’t ‘discovered’ until 1856 but I suspect it was there all along!

Our son didn’t receive his diagnosis until he was 10 and this isn’t unusual, even though we had first sought help and guidance when he was around 3 years old. Adults are increasingly being diagnosed later in life but diagnosis rates still vary hugely across the UK alone and there is no one specific test that can confirm whether an individual is autistic.  

In our wider family, there are a number of children with a confirmed diagnoses of autism and/or co-morbidities thereof. Whilst there may be a genetic component for some, testing may only indicate the presence of a known autism gene rather than whether the individual themselves is autistic. Genetics is advancing and evolving rapidly but there remains a long way to go. 

I personally believe the exact cause of autism is irrelevant and understanding, management and appropriate support should always be the best practice approach.  

So far, so not particularly rare or unusual you are probably thinking. However, where things get a little more complex is with our youngest 2 children, G-Man 13, and Minx 11. They may be the youngest but are truly determined not to be left out and are the 2 largely responsible for causing the medical community much vexation. For the time being we know that Minx has an as yet, undiagnosed neuromuscular condition, likely genetic in origin and it is likely that G-Man has a variant of this too.

Minx is the more severely affected but both children are tube fed, had severe reflux as babies, both have dysfunctional swallows related to muscle fatigue of repetitive action and there are various commonalities in their difficulties. 

This is what just 2 weeks of tube feeding equipment/nutritional supplement looks like….. for 1 child!! 🤦🏽‍♀️

Both children are SWANS. This is not a diagnosis. It stands for Syndromes Without a Name and you can learn more here: .https://www.undiagnosed.org.uk SWAN UK is the only designated support group for children and families in the UK without a diagnosis and they have provided my family with a life-line, connecting us with other families in similar situations, even though their children’s needs may be very different to my own. It has given us a sense of belonging, people to talk to at all hours of the day and night, balloons after hospital stays, coffee mornings and family days out. I know from my own experience and talking to others how valuable this is in our rare and undiagnosed community.

Thank you SWAN UK for balloons!

In the early weeks after Minx’s birth her difficulties came to ahead at the age of 9 weeks resulting in an emergency hospital admission and a flurry of subsequent appointments. None of them gave   answers.

I felt very alone and I pinned all our hopes on every specialist or therapist we encountered. I was convinced for at least the first 3 years of her life that the next appointment or admission would be the one where we got ANSWERS and  a PLAN. 

But despite being on genetic studies from the age of 6 months, enrolling on DDD – Deciphering Development Disorders: https://www.ddduk.org in 2013 and https://www.genomicsengland.co.uk/about-genomics-england/the-100000-genomes-project/ in 2015, at the age of 11 ,we still have no over-riding genetic answers.

I can reel you off a list of conditions: upper limb arthrogryposis, lower limb hyper-mobility, gastrointestinal reflux disorder, gastrointestinal dysmotility, chronic abdominal pain, muscle weakness and fatigue, congenital myopathy, etc etc  – but although we have seen specialist consultants in numerous different fields, at many different hospitals and although many differential diagnoses have been proffered, thus far nothing explains why my children require a feeding tube for nourishment, why Minx is a part time wheelchair user, has had to undergo countless operations, tests and procedures over her tender years. Why I can’t explain (to her immense frustration) why she is able to do something one minute but not the next; why she can be running around like her friends and then her legs turn to noodles and she can barely stand, let alone walk;  why her hands can hold a pen and write one day but the next it is all she can do to hold her head up; why the things so many of us take for granted are such a battle for her.  

I’ve held her in my arms as a baby, screaming as she was prodded and poked, as Doctors trooped in and out, relentless personal questions about whether my husband is my cousin or other close relative,  examining this body part and that – hers and mine!  X-rays, MRI’s, needles, blood tests, skin biopsies, muscle biopsies. 

I’ve handed her over to anaesthetists, surgeons or gastroenterologists more times than I can recall, laughed about her antics and singing (caterwauling?!) over pre-meds (an early indication of what she might be like when intoxicated in later years I suspect) manipulated her joints for intensive physiotherapy, tried different diets and multiple medications.   Soothed her, cajoled her, bribed her (she is VERY good at extortion!!) wanted to yell at her for being non-compliant but secretly proud of her feistiness and determination that has got her this far. 

G-Man too has had more than his fair share of tests, procedures, trials and tribulations. Both kids have been through more in their young years than many adults do in a life-time.

I’ve paced hospital corridors, driven in a state of recklessness when I should have called an ambulance, ridden in the back of them on blue lights, cried, put a brave face on, been meek when I should have called out poor practice and learnt to fight my children’s corner when necessary. 

I will always have respect for those in the medical profession but equally I no longer place them on a pedestal or assume they know best. They know their speciality, they don’t know my child/ren. It sounds a bit cliched and twee but I have learned such a lot over the years and I do consider it a journey of sorts.

These days I don’t often dwell on the fact that we don’t have a diagnosis and I try not to worry about what the future may bring. Other than typical parental worries: will they drive me to distraction by refusing to wear a coat even though it’s minus 2 with a windchill of minus 10 and snowing? HOW SHORT are those SHORTS?! Will she stop stealing my lipsticks, will he ever hang up his towel instead of leaving it on the bedroom floor,; will they do well in their exams (not because it matters to me as such, more that it opens doors for them),will they have a nice group of friends, make only the kind of mistakes they can learn from without devastating consequences? 

But sometimes in the small hours, or when something new rears it’s ugly head or when they ask me questions I can’t answer, those worries can’t be so easily silenced. And the truth is we don’t know what the future holds. I can waste time worrying about the ifs and buts and maybe’s but down that path lies only doubt and pain and I wont give it headspace.

Tomorrow is never a given for any of us so we may may as well make the most of today ❣️

Comfort food or food to comfort?

Today has been a bit 💩 I’m not going to lie……
We had to be Chez Hotel NHS Harrogate bright and early this morning for a date with radiology following G-Man’s “discussion” with a fire extinguisher on the last day of term. For the avoidance of doubt the fire extinguisher won & once again G and the NJ parted company. 😫
Given that it happened late on a Friday and from past experience of the difficulties this causes, I didn’t bother to contact anyone medical until yesterday. But I got sneaky this time and bypassed the ward, going direct to G’s pediatrician.
Recent visits to replace the NJ tube have been traumatic and getting more so each time. G has borne this bravely but enough is enough. The last experience left us all traumatised.
I don’t use that word lightly but given the radiologist said we were going to have to abandon the placement due to the levels of distress and G effectively withdrawing consent, I knew we needed an alternative approach.
I have asked in the past about some kind of amnesic inducing drug or light sedation and been berated for wanting to “drug” my child. However, the medical bods eschewing this approach only see a snap shot of my child for about an hour and usually aren’t in the room when the procedure is being carried out.
Nor do they deal with the longer term fall out, the increasing hysterical approach to anything medical, the begging, pleading and promises he will be good, eat more, try harder; listening to this I defy anyone without a heart of stone not to be affected and I feel huge guilt. How do I reinforce this isn’t his fault?!
At CAMHS appointments I listen as my child pours out his feelings of helplessness in the face of such procedures, his loss of rights over his own body and the feelings that he is not being listened to or even heard. And I question if it is right that he is put through this but we are left with little choice until a long-term solution is found.
The radiology department are giving me increasing (well-intentioned) grief about the risks of his repeated exposures to radiation. I am told that each time they have to replace the tube in this manner it is the equivalent of undergoing a CAT scan in radiological terms. I have lost count of how many times the tube has had to be passed since it first went in in May and with no end game in sight, I am mindful we are potentially creating a different set of problems.
So I threw myself on the mercy of our wonderful pediatrician, pleaded our case and to my immense relief, he immediately agreed and to save me having to battle and negotiate, liaised with the ward directly so that all we had to do was show up in the right place at the right time.
There was the occasional raised eye-brow from a clinician TRIPLE CHECKING I definitely wanted to ‘DRUG’ my child but I think the steely stare and unwavering gaze assured her I wasn’t going to be persuaded otherwise and from there on out, G was treated with the utmost care and consideration and after the usual shenanigans of weighing, measuring, a gazillion questions, signing of consent forms, he was popped on a monitor, given the maximum dose of meds and was soon off his face, happily rambling utter nonsense.
Truth told it was quite entertaining listening to his diatribe; apparently he was flying himself down the corridor, nothing to do with the trolley, porter, myself or the F1 accompanying! If it hadn’t been for his reaction to the taste of the medication, (lots of spitting and cries of DISGUSTING) I might have tried a cheeky request for some myself.
I’ll spare you the ins and outs but it was so much easier and kinder to have the tube passed this time round.
There is only one specific radiologist who can carry out the procedure and we are on first name terms now due to G’s frequent flier status! I know the names of his children, that he was born and grew up in Jersey just like me and that he’s off on holiday shortly so it was particularly hilarious listening to G shouting “Dude, stop that, why’s he shoving things up my nose Mum?! Dude seriously stop doing that, don’t look at me. NONE of you, face the wall! Why are you laughing?!”
The best way I can describe the procedure is like watching someone rod the drains. My apologies to all medical people and specifically the radiologist concerned who no doubt trained and worked exceptionally hard for many years. To compare his skill and expertise to dyno-rod seems rather unfair and very dismissive!! But there is a lot of see-sawing of flexible tubes and guide wires, pushing, prodding, twisting and turning till eventually the sucker ends up in the right place!
One hour later procedure complete, G still high as a kite, we were able to go back to the ward and let him sleep it off! He rambled and raved like a caricature of a Hollywood movie ‘drunk tank’ extra but he was funny and (mainly) charming and most importantly didn’t remember a thing when he eventually came round and found his tube safely back in situ. I count that as a definite win!
Of course it would have been nice to be able to contact loved ones and let them know all was well but my phone and internet seemed to be playing up. I had received a mysterious text telling me I needed to make a payment to our phone provider and reacted with dismissal knowing that Mr DNTW’s has every thing set up on a brilliant contract where we get oodles of data, texts, unlimited calls etc. I assumed it was just my phone (or me!) playing silly beggars.
But when eldest son contacted me on messenger saying he couldn’t call or text and could only use the internet when on wi-fi, I knew there was more to it. Still I assumed the network was probably down.
Several hours later, when his nibs was back in Blighty, he messaged me to ask if there was a problem with my phone and that’s when began to wonder if there might be a little more to it….
Child number 2, J, has been home for the last week. He’s our fabulously witty, dead-pan humoured, technology wiz with a knack for circumventing every manner of parental security and or block we have ever put in place. He has what was called aspergers but now changed to high functioning autism (don’t get me started). I tentatively mentioned the issues we were having and his face changed….
£448 worth of bill later, we know what the problem was/is!!! Suffice to say J was mortified and Mr DNTW’s after a few ‘effs and jeffs” spoke to our mobile provider, explained what had happened and we are extremely grateful to their management team who were so understanding and agreed to refund the excess charges. Big up EE!
So despite having left the house by 8am, not getting back till 3:45pm and feeling pretty drained all round, I felt the need for comfort food. Despite the fact that current air temp even “oop north” is on a par with the surface of the sun, I decided we needed a family roast with all the trimmings. A large portion of roast potatoes, chicken, lashings of gravy, Yorkshire puddings and veggies later my sense of equanimity is restored!
It is only with a slight sense of irony that I reflect we have 2 tube fed children and one with food-sensory issues but nonetheless by small miracles, everyone ate at least something of what was put in front of them; apart from yours truly: I ATE all of it and then some…possibly double helpings……sssh! Don’t tell….. x
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Relentlessly Relentless….

blog picture June 2018 final draft 3

Who cares for the carers?

There are many days where I feel like waving the white flag of surrender. I give up. Stick a fork in me, I’m done. Substitute your own personal favourite motto for when the 💩💩 just keeps on coming and you really don’t want to face it anymore.

As a rule, I am not a woe is me kind of a gal but there are limits and even for the Queen of “the glass is half empty, therefore there’s always more room for wine” claimant, sometimes I just don’t want to play anymore.

So why today? It’s been a busy week – nothing new there. Multiple appointments – again lather, rinse, repeat. Certain “dark forces” (bear with me, having to be slightly obtuse so it’s not too outing; a story for another day!) have done their level best to floor us as family and put up barriers; as my Dad would say: “same sh*t different day.”  Nothing especially jumps out as being out of our ‘norm.’

Actually, the straw that broke the camels back today is really rather ridiculous –  especially since I’m a grown (loosely termed since I barely scrape 5ft 3″) woman.

I don’t know about you but for me, it’s often the little things that tip me over the edge and today was no exception: there were NO apricot danishes left in a certain food establishment that prides itself on offering not just any old danish…. and boy did I have my heart set on that danish.*

You could in fact say I had built that particular danish up to be the highlight of my week (I know I know, I need to get out more!) and I was relishing scarfing it down with my mid-morning latte whilst staring daggers at my ever-increasing piles of paperwork that needs to be set light to dealt with and some of it rather urgently (anyone thinking I might be procrastinating by writing a blog post instead of dealing with said paperwork, that’s an affirmative!) particularly if I intend to throw my own kind of shade back at the dark forces. They might be putting up barriers but I’m packing TNT, a demolition ball and an AK47 to pulverize them. Ok perhaps I should STEP AWAY from the caffeine….my over active imagination, key-board-warrior-esque approach and twitchy eye suggest that caffeine, my drug of choice, has been consumed in too vast a quantity.

Whether it was the *slightly* murderous deranged look in my eyes or the muttering  sotto voce of curses questioning the parentage of all food halls connected with this particular establishment that caught the attention of the lovely man on the bakery counter, I can’t be sure but clearly sensing something was amiss from the plethora of delicacies in front of me, he tentatively asked if everything was all right.

Resisting the urge to scream out in the style of Ross from Friends a la “My Sandwich” sketch (you young things aren’t likely to be familiar with that gem so let me share it here https://www.youtube.com/watch?v=6tqmXTYa3Xw) and without resorting to tears either (the struggle was real people!) I managed to convey my deep disappointment that there were no danishes of the apricot variety to be seen.

And then, as if by divine intervention (ok, I’m waxing faaaaaaarr too literally, all that caffeine has really done for me today!) the dear, dear bakery man, (alas I did not find out your name in the ensuing rush of emotions that came over me!) uttered those most blessed of words: “not to worry, I’m just about to put some out!”  Yes! Fist bump, air horns and angels singing the hallelujah chorus; the gods and goddesses and the high priestess of bakeries had smiled righteously upon me.

I must confess it felt like there was something in my eye. I’m thinking that as my salivary glands went into over-drive, some sort of neurological spill over occurred to cause watering?

But the thing is, I’m a firm believer in taking your pleasures where you find them (erm just to caveat, legal ones, I’m definitely not advocating lawlessness or reckless criminality!) because being a parent is at times bloody hard work.

Being a parent carer is even bloody harder, thankless work and as far as I can find, there’s no resignation clause and as for the pay? Well if you are “lucky” enough to qualify (there are certain criteria and the person you are caring for has to have significant needs taking up significant amounts of time) for carer’s allowance, do the maths –  you don’t even get minimum wage for the hours you put in. Oh and no matter how many people you provide care for, you only get a single carer’s allowance.

When you multiply caring for 3 children and an 18-year-old who all have varying medical/social-emotional needs and complexities, there really aren’t enough hours in the day. I go to bed every night with a to-do-list that grows ever longer. For every 2 things I manage to tick off during the course of the day, I seem to have added at least another 5.

It plays on my mind that I have dropped the ball somewhere; have I requested everyone’s medications from the GP and arranged for them to be sent to the pharmacy? Do we have enough feed/containers/giving sets/dressings/lotions and potions in hand to get to the end of the month? Have I transposed all of the appointments that crop up into my phone calendar so I can plan everything round them in the weeks ahead? And woe betide if any of those appointments were only given to me over the phone and I don’t have an actual letter to cross reference and double-check with –  will I get the right child to the right hospital/clinic/specialist on the right day and time?!

I’m not ashamed to say I take a concoction of various medications every day to help me manage one way or another; be that for my severe depression, anxiety and inability to sleep or for the acid reflux that plagues me and the dodgy back/neck/shoulders and most   recently, excruciatingly painful sciatica (so many carers suffer with joint/muscle pain and problems as result of the physical demands of caring for a loved one with mobility difficulties) I’m acutely aware that these are a crutch for want of a better word. In an ideal world, it would be far better to tackle the sources of the problems permanently. Even better in some far off utopia, it would be to put provisions in place to be proactive instead of reactive. To prevent the aches and pains and feelings of isolation, despair and all the affiliated emotions and physicality’s that go along with being a carer.

I learned to my cost (and that of my families, not to mention the NHS etc) that if we carers don’t put protective measures in to fortify ourselves it all comes crashing down.

I am not unique. As a member of support groups such as SWAN UK –  http://www.undiagnosed.org.uk I read far too many comments from parent-carers who face battles similar or even harder than my own.

On other forums I’m a part of in relation to education, health and social care there is a generalised resignation to the fact that accessing support, working WITH organisations or professionals instead of the THEM and US facade is a constantly uphill battle; at best a ‘sorry there’s no money in the system’ approach to outright horrific accounts of utterly despicable, underhand tactics designed to deprive the most vulnerable members of society from the most basic, fundamental human rights and discrediting, even slandering or making false allegations against those who have to pick up the mantle and strive on their loved ones behalf. Probably best I don’t get started. I can feel the vitriol rising and that won’t help the acid reflux!!

Next week from 11th June to 18th June inclusive is Carers Week in the UK.  You can learn more here:  https://www.carersweek.org  It is estimated that in the UK there are 6.5 million carers and that figure is only certain to rise as we face an ageing population who are living longer, an NHS that is under resourced, over stretched and a welfare system that has been not so much stripped back as hacked to death and lord only knows what, if anything will be around in future times to help and support those most in need.

But for now anyway, I have taken care of myself by refuelling with a double shot, fully caffeinated (you don’t say?!) latte and a belly full of apricot danishso I’m bouncing off the walls all fired up to tackle the paperwork and smite those dark forces with a mother’s wrath.

*If anyone suddenly feels the need to shower me in delicious pastries of the apricot kind, you know, I’ll happily take one for the team 😉 Or tell me your own personal sanity savers and maybe I’ll see what else I can try!

A picture paints a 1000 words?

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When you look a this picture, what do you see?

A smiling girl (admittedly that’s probably stretching the use of the word ‘girl’) and her dog? A woman who looks tired, definitely in need of a bit of slap (literally and figuratively?!) and probably some air brushing?

This picture is so bittersweet in so many ways that I *almost* can’t bear to even share it.  My beautiful dog Buddy is in it and he’s no longer with us, departed over the rainbow bridge to be with other furry friends. It makes my heart ache all over again but he still brings warm thoughts and a semi smile to my face nonetheless. The power of canine love.

But what this picture represents is so much more than the image at face value.

Just over one year ago this picture was taken in the reception area of a psychiatric hospital. I was suicidal and had been admitted two days previously having reached crisis point and having made the decision to end my life.

Even trying to write that phrase feels unreal and melodramatic.  Like a bad soap opera or overly prosaic novel.   This stuff doesn’t happen in the ‘real’ world. Except it does.

I don’t know if it was a surprise when I eventually confided in some of my closest friends about what I had done and what at times, it feels like I still intend to do. In some ways reaching that point was a huge shock, even for me.

If there is such a thing as a poster girl for depression, I’m not certain mine would have been the picture used (hopefully not this one anyway…it’s not my best side!) I was and still am (usually) a glass half full type person – I’ve said it before and I’ll say it again – a glass half full means there’s still plenty of room for more wine!

See, I crack jokes, talk a lot, especially when nervous, I smile, put make up on, clean clothes, prepare meals, answer phone calls etc etc so how can I be depressed? And therein I think lies the crux of it: what does a depressed person look like? What image does someone who has reached the end of their coping skills project?

I wouldn’t dream of speaking for others who have gone through and continue to battle their own demons. But in my experience, depression is such an insidious thing. So even if you seem to be the life and soul of the party, the one that is strong and capable, dependable and reliable, it doesn’t mean you can’t experience the gnawing, dragging, emptiness. The feeling that it’s all too much, no way out, nowhere else to run to.

Too much effort, too much expectation, everything from getting up, dressed, one foot in front of the other a herculean effort. But it doesn’t mean you don’t keep DOING all those things. Sometimes the doing of all those very things is one of the ways you keep some kind of a handle on it, albeit a wonky one.

So it doesn’t in any way seem surprising to me when I read accounts of how someone has gone about their day-to-day life, seemingly taking it on the chin, even appearing to have a great time attending events, get togethers, nights out….and then they end it all.

The shock and grief to their nearest and dearest must be bitter, unpalatable and shrouded in disbelief.  There must be soul-searching. What did they miss? What clues didn’t they pick up on? How could they let their friend/partner/family member down so unreservedly? Why couldn’t they be stopped from choosing this final absolution?

And anger, only natural too. Rage at their selfishness; that they left everyone in this mess, they stopped trying. Took the ‘easy’ way out.

All these things run through my mind regularly, over and over, like a fuzzy old-fashioned film negative.

I feel burdened by the weight of other people’s expectations of me and the damage that would ricochet through our family unit if I achieve my objective. I once had a crisis mental health worker give me the statistics of how many young people go on to take their own lives in the event that a parent ‘chooses’ to commit suicide. Harsh and horrifying and heaping on the guilt. Crafty, effective move that was.

Perhaps because so often my every day life involves meetings with professionals in relation to the needs of our 4 children, it is so important (to me) that my armour is in place. Keeping up appearances, stopping them from defining me as *that* mother, that weak, special snow flake.

The vast majority of professionals we deal with have been nothing but supportive and helpful, even sympathetic but there are always a few, (ironically the ones who in my view have most failed our wider family), who would like to define our ASD child’s difficulties by my ‘shortcomings.’

The fact of course that respite care was proffered but never organised, dangled like a mesmerising carrot for so long, just out of reach; the fact that our child required appropriate specialist schooling and wrap around care, the inevitable self harm, suicidal idealisations, violence against myself and our other children, the regular police involvement, ambulance call outs, CAMHS care and so forth, all accumulated into some persistent, momentous ball of hell unravelling at lightning speed had nothing to do with my break down at all. I’m *just* that sad and pathetic and attention seeking……

Mental health is still, despite the (much-needed) increase in awareness and highlighting by people like the Duke and Duchess of Cambridge, Prince Harry and high-profile celebrities, radio presenters and such like, a taboo, a dirty little secret.

Admitting that you have mental health difficulties, at least to me, feels a bit like shouting out the word VAGINA (or other awkward word of your choosing that doesn’t tend to come up in day-to-day conversation!) on a megaphone, naked on stage to a silently packed out Wembley arena, being globally transmitted by multiple satellites……

I can only speak for myself but having chatted to other friends going through similar concerns, I know they too feel a sense of shame, being perceived as somehow weak and feeble, lessened.

One of the most crucifying  experiences I had in the latter months of last year related to the ill-health of our youngest son. Due to severe gastrointestinal difficulties culminating in losing 5 Kilos in a 4 month period, an extended hospital stay and the insertion of a naso-gastric feeding tube, the lead paediatrician (also our regular consultant for both G-Man and Minx) called a multi-disciplinary meeting to discuss both children’s health concerns (they share many similar aspects) and a plan going forward.

Present at the meeting (in addition to the consultant) were an Occupational Therapist, Physiotherapist, Dietician, Speech and Language Therapist, Community Nurse, Student nurse, Ward Sister, Disability Children’s Team Social Worker, Paediatrician, myself and Mr DNTW’s and a few others I can’t recall. I think the only person who wasn’t there was Uncle Tom Cobley*

The consultant outlined the various medical difficulties, asked professionals for observations and then having brief knowledge of our background family situation asked for us parents to outline relevant events over the year.

It’s trite but during that account, it did feel like time stopped. There seemed to be a palpable and  collective withholding of breath as I relayed the events of significance. I did my best to remain factual, honest, hiding nothing but not (at least I don’t think) boring them to slumber and derailing the topic with a pity party for one.

I couldn’t make eye contact. I didn’t dare look up. My attempt to be detached failed. I cried; big, fat, salty tears of shame. And of course that always brings on the snot. So as I crumpled tissues and wiped and snorted my way through this hideousness, it brought with it crippling anxiety; the awareness that I had laid myself especially vulnerable to the people I need to work with for my children’s sake on a regular basis and I was in their eyes, at least to my thinking, diminished, fallible.

I must take pains to clarify that not for one moment do I think the consultant was doing this to be unkind or humiliate me. His request came from a genuine place: to what impact psychologically were (are) G-Man’s difficulties related to what is going on in his life and how as a collective could we address this for the best patient care.

It’s an ongoing situation. G doesn’t have an eating disorder; his medical ‘foibles’ are complex and require further investigation (even as I type a referral to Minx’s gastro team at GOSH is on its way), interwoven with understandable anxiety around food , the pain it causes and the bigger picture. He’s also under CAMHS.

That there has been a fall out from my ‘situation’ on all the children, there can be no doubt. Even now, if I am unwell physically or seem low the children are hypersensitive to me, like little meerkats on guard.  It will take time for that to subside and what I am beginning to realise, it may never go away entirely.

I’m still recovering if that’s the right word to use. I feel frustrated with myself and angry. There are too many should’s/would’s/could’s (which my mental health team would rap me over the wrists for) – unhelpful words those – and I suppose like the layers of an onion, or perhaps the facets of a diamond, (definitely preferable to root vegetables in my eyes!) are to be evolved and discovered in time.

Therefore, just as the 4 c’s in diamond terms are all important – cut, colour, clarity, carat weight –  we know there is no such thing as a flawless diamond; technically speaking even those given a flawless classification have the tiniest of blemishes or imperfections – (bet you will sleep better knowing that hey 😉)  Having a love of all things sparkly and glittery, I’ll happily compare myself to a flawed diamond (less of the rough diamond please).

Perfectly imperfect. Needing a bit of a spit and polish.

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  • Uncle Tom Cobley origin:
    “Uncle Tom Cobley and all” is a well used British expression to define (in slight derision) a lot of people. It’s akin to the expression “the world and its wife” and  comes from from a Devon folk ballad (Widdicombe Fair in case you are really interested!)  Uncle Tom Cobley (and all) is named as the last of a long (long!) list of men with a chorus ending Bill Brewer, Jan Stewer, Peter Gurney, Peter Davy, Dan’l Whiddon, Harry Hawke, Old Uncle Tom Cobley and all.

When is an EHCP not an EHCP?

For the avoidance of doubt or for those who may be unfamiliar with the UK and it’s education system in general, I will outline what an EHCP is supposed to do.

All children and young people who have a learning difficulty/disability which makes it difficult for them to access education and need more specialist help than a typical child or a child with educational needs over and above that which the school/college is usually expected to provide from their nominal budget, should be assessed for an EHCP.

As it stands, if a child has a relatively low-level learning based difficulty/disability/need, their school would be expected to fund specialist support out of their own budget before making an application to their local authority for additional top up funding.

The Governments own website outlines the EHCP in more detail: https://www.gov.uk/children-with-special-educational-needs/extra-SEN-help

 

Rather succinctly this little gem  sums it all up in a very appropriate nutshell:

The EHCP should identify, as detailed on the UK governments own website:

educational, health and social needs and set out the additional support to meet those needs

So there you have it!

Hopefully this makes things clearer to you than mud (please read that in an ironic tone) but the whole EHCP process is such a lengthy, demoralising fiasco, so forgive me if it’s still murky. Anyway, I digress….

EHCP stands for Education and health care plan. I’ll say it again and in bold, just in case and for the avoidance of doubt:

EDUCATION  AndHEALTH  AndCARE

Let’s take a moment for that to sink in.

Okay then. Got it?

If you saw those words at the top of an important document, with your child’s picture beaming out at you from the front page, what do you think you might expect to find reading on?

I may not be the sharpest tool in the box, no contender for Mastermind or MENSA but even I don’t need a dictionary or google translate to understand those 3 little but ever so important words.

I would expect a to-the-point, concise yet detailed report outlining what and how all my child’s EDUCATION, HEALTH and CARE needs could be best met.

I would assume (& yes my dad did teach me the adage about assume making an ass out of you and me) that such a document would clearly state what steps/methods/therapy or such like would be put in place to accomplish this and help the child achieve the best possible outcomes, uniquely tailored to their own specific requirements.

There would be bullet points stating  identified needs. And to each of these there would be a response detailing how those needs can be met, who would provide the support and how. Quantifiable, specific. Defined.

As you may have guessed by now and if you have read my previous blog posts: (https://definitelynotthewaltons.com/2017/10/07/how-do-you-sleep-at-night-part-1/) and https://definitelynotthewaltons.com/2017/10/08/how-do-you-sleep-at-night-part-2-😡😡 we lost our educational tribunal case as the judge decided after hearing the evidence that we couldn’t prove a waking day curriculum (residential school mon-fri) was solely necessary on educational grounds, which is the ONLY aspect of the case he could rule on.

The judge however did stipulate verbally on the day of the tribunal hearing itself and in his subsequent summation that there is a clear, identified need for both the bodies representing children’s social care and health (ie CAMHS) to step up to the plate and that a tri-funded agreement would have been in our son’s best interests.

Regrettably because the latter 2 aspects are not enshrined under current legislation and despite the overhaul of the whole statementing process which took place in 2014, leading to the creation of EHCP’s, the judge was not able to rule on any other factor than education and he also had to balance his judgement with the best use of public funds.

We found all this out last October but there has been so much other assorted 💩going on in our lives that I’ve needed time to step back, lick my wounds, retreat, repair and decide what to do next. It is still an ongoing process.

So as it stands, it turns out I really should have listened to dear old Dad because assuming anything positive about the EHCP process really did make me an ass.

I naively thought the 3 very specific words of education, health and care would formulate the basis of MY child’s frame work of specialised education.

That those in authority and tasked with facilitating the EHCP would recognise not just his needs but his fundamental RIGHTS to access appropriate care and support to his emotional, social and educational needs as an entirety. Ha!

Essentially it seems MY child’s needs are pretty much irrelevant in the document that stands as HIS EHCP. Furthermore how his needs interplay and merge with those of ours as a family – because we are a functioning (debatable!) unit – seem totally irrelevant.

How egotistical of me to think all these things should be reflected and factored in as a holistic approach in his plan?! I think wishing for unicorns and rocking horse sh%t would have been more achievable.

As I was succinctly reminded the local authority do not have a duty to provide the best possible outcome for our son or our family, just an outcome. So let’s disregard what could have been a fantastic opportunity; a way forward that would promote his independence, resilience, friendships and enhance every aspect of his life.

Let’s ignore the fact he’s bright and potentially capable of achieving highly academically (as stated by an independent professional) Lets disregard the lack of ‘real’ life contemporaries, social skills and tasks pertaining to daily living that would best be achieved by supporting him in a residential school placement. In fact let’s knee cap him before we even start.

Because what we wanted for our son costs too much… and shame on me for appealing to the powers that be that providing the best possible support in EDUCATION HEALTH and CARE right now would reap dividends in the future.

I was told by “management” that long term goals/achievements aren’t even considered when looking at the costs right now!! So what the bloody hell is even the point????

Silly, silly old me! Bottom of the class for me. Do not pass go, do not collect £200 and straight to the jail!

Only we are not playing a fun game of Monoply (if the way you play Monoply is anything like the way my lot do, I accept I might be playing fast and loose with the word fun) I suppose if we are using paradigms as an example, we should choose The Game Of Life as a better synonym.

Forgive me if I’m coming across a little over zealous with the italic button. But the unhappy little fact is, we aren’t playing games and our story isn’t unique.

We are talking about REAL life, REAL children, REAL families being put through the mill and being spat back out again. Crushed, devastated, lost.

In fact those 3 words above would far better sum up the plan that is now recognised as the official EHCP document, prescriptive and responsible for shaping my child’s future.

Our legal representation has reviewed the decision made in law and reluctantly concluded there have been no errors in interpretation of the legal aspect. And just because we don’t like the decision, it doesn’t give us the right to appeal.

I’m still deciding what to do next and how best to proceed but in the interim if we refuse to accept and send him to the school stated in the plan, then we are in breach of the law and could face a fine and/or prison sentence. It saddens me beyond belief that legally I cannot do anything other than comply obediently in the interim.

The irony is not lost on me that on 24th October 2017, the Minister of State for Education department in the UK – Robert Goodwill – issued a statement advising that with effect from March 2018, every local authority in the county should ensure that all EHCP’s encompass the health and social care needs of the child in addition to those of education.

Whilst this is not mandated in law, a previously trialled scheme of 17 local authorities demonstrated an overwhelmingly positive response and therefore Robert Goodwill has announced that it should be adopted as best practice on a trial basis going forward for the next 2 years.

So, I can tell you and more importantly, the bean counters in their ivory towers: I won’t retreat, withdraw or go quietly. Of that you can be sure. One way or another I’m coming for you.

How do you sleep at night… part 2 😡😡

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

We are now the others. 

How do you sleep at night?… part 1…

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

To be continued…. 

What a fu**in* liberty…..

I am cross!!img_1256

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

 Edvard Munch – The Scream

Once Upon a Time….

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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