Child…..Abuse… Of Power?

Today after almost 6 months of hell at the hands of our local authority, we are victorious. But it is a hollow victory, tinged with indescribable sadness and pain. Lost opportunities.

I’ve been annoyingly cryptic on social media (sit down in the cheap seats with your cries of ‘generally just annoying!’ 😉) over the last 6 months or so. I’ve alluded to ‘things;’ vague references to #fighting the good fight# and such like but effectively been gagged from further explanation. Until now.

In August 2018 we were presented with a hand delivered letter from the manager of the Looked After children’s social care team (LAC) informing us they intended to pursue us through the courts for parental responsibility over our autistic 15 year old son.

I cannot begin to adequately describe the horror and pain we felt, as well as the sheer disbelief, on reading the allegations laid out in the Public Law Outline (PLO) document hand delivered that day in August.

And how did such events arise? Because we had dared to question, disagree and eventually file a formal complaint about the stance taken by our then allocated social worker and the part time foster care placement of our autistic son. That in a nutshell is the extent of our ‘crime.’

The LA brought a case against us stating we had caused emotional abuse, neglect and rejection, by placing the needs of our other children over and above our son’s. All because we had continued to seek and challenge them in providing an alternative, and most importantly, APPROPRIATE care placement.

The first hearing took place in October 2018. Upon reviewing the bundle of ‘evidence’ the Judge was quick to recognise that our battle with the LA stemmed from our request for him to be placed in an alternative provision to that which had been provided. She refused to allow the LA any grounds of threshold on their submissions and highlighted that the case brought before her was deeply upsetting and hurtful to us as parents. She also recognised that having been in dispute for so long, it was necessary for the matter to be heard in the court and therefore stipulated that the case could proceed on the grounds of being out of parental control with no fault being directed at us as parents.

Today the case against my husband and I was withdrawn by the Local Authority and whilst we are relieved in the extreme, there’s a pervading emptiness, an anti-climactic ‘that’s that then’ feeling.

After reading the lies and damning claims submitted by the LA, the hours I’ve spent pouring over documents, the hard-won receipt of social care records, enduring endless meetings with social workers and lawyers and providing evidential based-responses and testimony, today the Local Authority got to stand up in court and say “actually we withdraw, there’s no case to answer.” No sorry, no oops we got it wrong and no acknowledgement of the anguish or distress this caused us! It hurts. A lot.

It is no comfort (at least not at the moment) that our barrister says this is the best outcome we could have hoped for; that by instructing the Judge that there is no case to answer, she allowed the application to be withdrawn. He explained the fact that the LA did not withdraw prior to today meant they had to save face and thus we still had to appear in front of the Judge for her to formally dismiss the proceedings apparently….but it doesn’t feel like we’ve been cleared or had our chance to challenge why they brought such an erroneous case. Even the very favourable reports from the court appointed guardian highlighting that she has no concerns over our parenting bring little comfort.

I suppose we wanted retribution but it’s not in the redress of this particular court to address the, for want of a better word, ‘suffering‘ we have experienced. I think I’ve been too hooked on tv court dramas with all the vim and vigour (vinegar as far as my feelings go!) and the fire and brimstone. There’s no revelling in the fact that #justice# has been done.

Of course there will be some legal bod out there who would happily pursue a case on our behalf (💷💷💷 kerching???) but that will cost us funds we don’t have and for what purpose? Will it bring about closure? Will it heal our grievances? And I suppose I still worry that because we didn’t get to call them out on the stand and have a Judge formally rule on proceedings, there will be always be those people who assume the “no smoke without fire” philosophy, thus believing we are indeed at least partially at fault.

Those of you who have followed my blog/know us personally, will be aware that we have 4 children. All with extra needs and/or health conditions. Let me be clear, this is not an attempt in any way to curry admiration or pity on my part. It is just a fact.

For the last 3 years we have been in dispute with our local authority about the most appropriate way of meeting the needs of our high-functioning autistic son. When we first embarked on this quest, our children were aged between 7 to 16.

I’m extremely lucky to have Mr DNTW’s total support and 100% commitment in aiding (& abetting?!) family life but juggling everything alongside him working shifts with long, unsociable hours and for whom weekends off are as mythical as rocking horse poop, well, ostensibly meeting (attempting) the family’s day to day needs stands – or falls – on my shoulders.

By the latter part of 2016 it had become apparent that despite the multiple strategies and interventions by ourselves, CAMHS, various core emergency services, and the trialing of ever more desperate adaptations to “fix” things in mainstream schooling, nothing was going to reduce our son’s anxiety or the on-going repetitive, risk-taking behaviours and withdrawal from learning, family and friends. It was agreed that our son needed an education health care plan (EHCP) and specialist educational placement.

Our son was also requesting respite from the family home. He struggles when his needs cannot be met, with the hubbub and ‘chaos’ that manifests within our busy family and with the unpredictable nature of our other children’s health needs.

So we sought to find a solution encompassing not only his academic needs but his social, emotional and mental health needs. Additionally we wanted an emphasis on building, and imparting important life skills in order to secure the ability to support himself in living an independent (or to the best of his abilities) life in the future.

It is generally recognised that most children thrive with routine and that this brings them reassurance. Predictability, timely, boring regularity. In the case of many autistic individuals this is key to day to day management and reducing their anxieties.

Certainly in our son’s case sudden upheaval, changes to arrangements or fixed plans being altered are at best unsettling, at the very worst, a cause of deep distress leading to potentially risky, life-threatening behaviours.

We don’t have family to rely on locally and whilst we are ever grateful to the small groups of friends we have made locally, many of them have their own children, some also with complex needs; they are not in a position to assist in helping out or medically qualified to do so.

H now being over 18 means he doesn’t qualify as a child in the eyes of the law; nonetheless as I’m sure the majority of parents would testify, once your offspring reach a legal age of independence, it doesn’t mean you cease to parent…or care…. or worry…. sorry H you are stuck with me mithering you about what time you are coming home or if you are in for dinner! I promise to stop once you leave home “for good.” Probably.

Since H has a congenital heart condition which we know is progressive, albeit *should* be manageable with medication and surgery in later years, it adds an extra dimension to parental fretting. He doesn’t want a fuss making (in fact, I will probably be lambasted for even mentioning it here) so we try our best to abide by that and know that he is in good hands medically, as well as being cognisant of the importance of maintaining and being attuned to his physical well-being. Less so after his Saturday night shenanigans…. 🍻🥃🍷

In respect of our younger 2 children, their needs are much more complicated and unpredictable to manage, both by virtue of their ages and the nature of their difficulties. Suffice to say, life is not so neatly parcelled up with a cherry on the top.

I’ll spare you all the intricacies (if you want to know more, I’ve covered this in other blogs) but on grounds of the costs being incompatible with public expenditure we were refused a placement for our son at an autism specific residential school on a Monday-Friday basis. This had seemed the answer that best met not only all our son’s needs but also the wider family as well.

Our son was only offered a place at a day school (which catered for children with extreme behavioural issues, less than half on role have autism as their primary diagnosis) but there was nothing concrete forthcoming from children’s social care or health.

By this point, both ourselves and our son were desperate. And exhausted and demoralised. I will never forget reading an article that described how parents of children with autism show similar levels of stress to that experienced by combat soldiers.

It was glaringly obvious that we needed a complete turn-about from the impossibly, destructive situation we seemed perpetually quagmired in but I just couldn’t do it by myself anymore. We engaged legal representation in order to proceed to an educational tribunal.

This cost us hugely. I do not mean just financially. I had a complete mental health break-down and spent 3 months as an in-patient. To this day I take a cocktail of medications so I can “function’ and continue to receive therapeutic community care.

The fall out on our other children was immense and still impacts them in a variety of ways. Mr DNTW’s too. With him having to hold down a job and be soul parent, he called in favours left, right and centre to see to the care needs and day-to-day cover for our children. We could not afford for him to take unpaid leave.

Ultimately, my psychologist refused to allow me to leave hospital until social care had provided a medium to long term plan to accommodate our son to allow me to recoup my energy and build on my recovery. Our son was shunted between multiple foster carers which nearly broke our hearts.

Eventually after a period of 6 weeks or so where there were more than 8 people responsible for his care, he was placed in a foster placement some 45 minutes away from us as an interim measure. His needs arising from his autism spectrum condition were never appropriately assessed and we were all in limbo, waiting on the decision of the education court ruling.

During those darkest of days the response from social services was how soon can we return your son home? They simply weren’t interested in the wider needs of us all. Further, when we outlined for sensitive reasons that I won’t divulge here, the carer he had been placed with was not capable or suitable to meet our son’s needs, the response was if you don’t like it, take him home. A phrase that was repeated with alarming regularity during the last few years.

In late 2017, the Educational Tribunal ruled against us stating that we couldn’t prove solely on education grounds that our son needed a residential school placement and so we were back at square one. (This was before the commencement of the national trial from April 2018 which has allowed cases with an overarching health or social care need to also be heard)

Again we were deeply disappointed and living in groundhog day. We considered so many ways to go forward and had settled on proceeding to Judicial Review in order to get the local authority to formally assess our son’s needs holistically. It is a lengthy process and all the while we were being told by our former social worker that his needs were in hand. He was clothed and fed and happy.

But he wasn’t – happy – and his wider needs so paramount to his progress and development weren’t being met in any way. The social worker was intractable in her approach and either unable or unwilling to discuss our concerns.

Despite our repeated pleas for our son’s needs to be properly assessed and matched with an appropriately trained foster carer or a placement in a residential unit, we were refused time and time again.

I should add at this point that throughout the difficulties over the last few years we have continued to have plenty of contact with our son. Daily by phone and/or texts. He also comes back to the family home when there are 2 adults here so that one can assist or be responsible for the care needs of our younger children and one of us can be there for him. This averages out as a minimum of 2 nights per week and all school holidays. We are in daily contact with school for progress reports and updates and have an excellent working relationship with his various support workers.

I’m conscious my son may one day read this post and some of the events that led up to the court proceedings (and continued during the hearings) are very personal to him. That is his story to tell if he and when he so chooses so I won’t divulge specifics. However, despite our best efforts to reassure him that we would always be his parents, no matter what, and that we would always fight for what we believe to be in his best interests, it has been a deeply distressing time for us all. Knowing that the local authority could potentially dictate the where’s and when’s of contact, the amount of contact, where he lived and act as his parental guardians in all aspects of his needs has had a profound affect on us all.

Of note: two good things have come out of this (aside from the obvious relief of the case being dropped) – at the start of the LA’s actions, we were allocated a new social worker. She is fantastic and has worked extremely hard with us, our son and on our behalf. Her endeavours, alongside the evidence we provided and the evidence submitted by the appointed guardian who carried out assessments of us, the former foster carer, of our son and his school has led to securing an appropriate care placement for our son. He moves on Sunday after a few celebratory days with us as home.

Our social worker has taken the time to listen and actually hear what we have been saying. She has taken the time to get to know us, evaluate his needs and understand the impact of his autism, not just on him but also on us as a wider family.

We are quietly confident that the new placement will be the best plan going forward and it is all to her credit that in spite of the very difficult circumstances, we have built a relationship with her that is mutually respected.

Nonetheless, it will take a long time before we as a family are healed from this traumatic process.

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The Trigger…..(Pull it)

Recently for reasons that as yet I cannot divulge (I promise there is a blog post coming on this as soon as I am able; apologies for the cloak and dagger tactics. I’m not one of those “u ok hun?” PM/In box me” type people honestly!!) I have recently had to write an explanation of what led me to my break down almost 2 years ago. The account needed to be factual and pragmatic; the irony of trying to keep my feelings out of it when dealing with something so fundamentally, emotionally driven as a suicide attempt was not lost on me.

Although I will (if asked) talk to close friends and family about what led to my attempts and breakdown in mental health honestly and forthrightly, it doesn’t mean there isn’t shame; that there isn’t guilt and that there aren’t things that I (still) hide. There are somethings that are so deeply personal (buried?) that I don’t think I’ve even allowed myself to explore them.

In writing down the what’s, why’s and wherefore’s, its dug up a lot of suppressed memories, pain and feelings of helplessness, at a situation that was not of my own making. That’s not to say that I want to palm what happened off on someone/something else. I accept responsibility for want of a better word for the actions I undertook. However I reached that point where checking out seemed the only option to change what was going on around me.

It occurred to me as I typed the details up that it was triggering a lot of emotions even though I wanted to be concise and almost 3rd person in my approach. And I as thought about that word “trigger,” I realised that summed up my entire experience of a mental health breakdown. Seems obvious I suppose. I don’t know – I can only speak from my personal situation.

Suicidality  springs from a myriad of wide and varied causes;  I am no expert. For some it may be a single one-off event that causes the person to experience a sudden mental health breakdown (personal/financial/status loss spring to mind) for others something that happened in their past (abuse, specific traumatic one off/repetitive  event) which cannot be overcome.

For me, it came about insidiously, through a relentlessly relentless piling on of pressures and this too is of course acknowledged as a common cause. I guess for me the idiom “at the end of my rope” has more connotations than just being at the end of one’s patience. Apparently the original source of this expression relates to tethering an animal to prevent it moving and wondering off beyond a certain distance.  Personally, (in a somewhat grimly, ironic humour) I thought it meant at the end of the hanging noose knot….

My first suicidal ideation was triggered by the repeated use of the word COPE. An innocuous little word that is used to describe so many situations. As a parent carer of children with special needs, it’s not uncommon for others to utter “I don’t know how you cope!” This is something that I know many of my fellow parent carers  or carers in general will be nodding along with.

Carers are often seen as saintly like figure. A cross between Florence Nightingale and Mary Poppins perhaps? Truth is, very few of us chose this life. The role chose us by circumstance or default.  I know there are some utterly inspiring carers out there who did actually choose to foster or adopt children with special needs (and thank goodness for them) to prevent little lives being institutionalised without families of their own.

There are also those courageous individuals who when embarking on their journey of parenthood were given horrifying, frightening, diagnosis for their unborn child and yet chose to bring life into the world knowing they were doing so against the odds; that they  would do their utmost to love and cherish their child, no matter what. Other parents have had to face a child being diagnosed with cancer, degenerative or congenital conditions out of the blue or as a result of an accident or injury.

Of course later in life more and more of us are facing the hideous reality of dementia in family members. Those with grandparents and harder still, their own parents or siblings who they see deteriorating in their day-to-day abilities; losing their independence and all too often a decline in mood, personality and recognition of their own nearest and dearest. Very cruel.

Whichever way it comes to be, caring for someone isn’t something you get a medal for. There isn’t a huge amount of reward  – certainly not monetarily. If you can show that you provide care for someone receiving  specific incapacity benefits for over 35 hours per week and you earn under £123p/w (as of April 2019) from other sources of income, you can enjoy the princely sum of £66.15p/w (also April 2019) for the ‘privilege’ of being a carer. Even based on 35 hours per week(and the majority of carers I know ‘work’ substantially longer hours than that; 24/7 for many)  that equates to just £1.89 per hour. Wow. Best not get me started on that. A ranty blog post for another day no doubt.

Anyway I digress. The point I’m taking a long time to get to is many carers ‘cope’ because there really isn’t any other alternative. And those of you who say you couldn’t? Well you would. If you had to. At least for a period of time.

There are (too) many days I feel like sitting in a corner and rocking. Many days I wonder how I’m going to make it through the endless medications, physiotherapy, appointments, hospital visits and dealing with the practicalities and physicalities of caring for children with extra needs. Don’t get me started on the relentless laundry pile that never seems to go down, the food shopping and meal preparation that are just part and parcel of every day life in a busy family and I know I’m far from alone.

But the point is I do – cope – I mean, generally speaking. It isn’t a life I chose but equally my children didn’t ask to come into the world with neurological,  medical and/or physical difficulties either. So I get up, I keep going, usually with a grin (maybe a grimace) and somehow it all vaguely fits together, we get to the end of each day with perhaps only a modicum of sanity and no clean school shirts for the next day (Febreeze anyone?!) because it’s the only way we carers know how too.

There isn’t any one else out there to pick up the slack. Unless you are in the fortunate (and probably) unlikely position to be independently wealthy, the majority of carers get on with their role because they have to keep on keeping on. No one else is going to be there to pick up the pieces (or socks) if they don’t. No white knight (or even vaguely grimy one) will rush in where others fear to tred.

So back to that pesky trigger of mine. What’s more frightening than ever is it’s not just carers that struggle to COPE. Unless you have been hiding under a rock, you can’t have failed to notice the inadequacies in the health and social care system caused by austerity, lack of (meaningful) investment, candidates and poor morale. The system itself has reached breaking point.

The working conditions are sending droves of medical professionals overseas where they will have a better work-life balance and better remuneration. Fewer than ever medical students want to take on the role of General Practice and more GP’s than ever are planning to retire early. Figures released in July 2018 showed 1 in every 6 GP positions were unfilled leaving almost every surgery across England at least one Doctor short.

Mental health services have also suffered hugely and in real terms, whilst there were expansive (and expensive!) promises given that funding would increase broadly in this area (£2 billion was pledged by Phillip Hammond in October 2018) in reality the fall in in-patient beds has led to those in crisis being sent hundreds of miles from home, away from their nearest and dearest which can, at least in my experience, only create more hardship. The inability to access timely, regional in-patient care is not just inadequate but dangerous. The focus on out-patient/community based care is of course welcome but it is not a replacement for those battling psychosis, severe depression, eating disorders and such like, especially when either the beds aren’t in familiar environments or worse still, available at all.

Locally Harrogate Hospital plan to close the adult mental health in-patient unit at some as yet unspecified date in the future (rumoured to be later this year) and I for one will mourn this loss. Whilst I hope never to need in-patient services again, I made and have retained a very special  friendship with a fellow MH warrior. We often share some  deeply inappropriate, darkly humourous moments that unless you have experienced a mental health crisis, just wouldn’t be appreciated by  nearest and dearest.

I am forever changed by my own break down experience both in good and bad ways. I have learned my tolerances are much lower than before so whilst I’m in an *ok* place much of the time, it doesn’t take much to alter that kilter and send me spiralling to darker places. But I have also learned I am stronger than I thought it was ever possible to be, that I can ‘cope’ with most of what life throws at me and that will do… for now

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!

Same but different….rare as Unicorn 💩???

Rare disease G&A Photo 2018This year 28th February 2018 is the worldwide celebration of Rare Disease Day. 

The very first ever Rare Disease Day was held in 2008 –  a leap year so the perfect occasion for the initial 18 countries that signed up to celebrate.

Every year since, countries across the world have united to raise awareness of all things rare in terms of disease.

Last year 94 countries highlighted their commitment and support to raising rare awareness which is a pretty fantastic achievement.  In fact that’s an increase in ‘productivity’  of 422.2222% for want of a better way of describing it!!! (I had to ask my eldest son taking A-level maths to work that out so if the stats are not right, don’t blame me!!)  So it isn’t surprising that highlighting all things rare is close to the hearts and minds of those who live with a rare disease or have family members affected by a rare disease.

What does ‘rare’ mean to you? I googled the word rare in the Oxford English Dictionary and the top definition that came up as an adjective was this-  “RARE:  – of an event, situation, or condition not occurring very often. ‘a rare genetic disorder’,”

After that it went on to talk about rare steaks, uncommon birds and such like. Interesting I thought however that the very first sentence used to define ‘rare’ was in the context of genetic disorders!

Actually I think the use of the word ‘rare’ in the context of rare diseases is a bit of a misnomer. Why? Because at any given point 1 in 17 of us will be affected by a rare disease! Surprised? Think about this number in terms of the day to day and see how it relates to your experiences.

If you used public transport today (probably a bad example since much of the country seems to be under snow!) was it crowded? More than 17 of you on board? Probably. Bought a coffee in one of the many high street chains? Hopefully not 17 of you in the queue at any one time but probably more on the premises tucking into a hot drink or waiting anxiously for their turn.

17 is lucky in some countries, unlucky in Italy. 17 is the number of muscles it takes to form a smile, 17 syllables in a haiku poem. 17 is the least random number in a study conducted by MIT asking people to choose a number between 1 and 20. So again, not that rare.

A rare disease/condition in Europe is classified as affecting 1 in 2000; in the US fewer than 1 in 200,000. 80% of rare diseases are genetic in origin whilst others are as a result of infections (bacterial or viral) allergies, environmental factors, degenerative or  known as proliferative eg cancers.

Of those diagnosed with a rare disorder a staggering 75% will be children.  In fact, many of these children are a whole new breed of rare. So rare that their medical/physical and or cognitive difficulties don’t actually have a name!

Presently we know that there are approximately 6000 children born each year in the UK  alone who have an UNDIAGNOSED condition. Of those, only 50% undergoing genetic testing on the NHS will ever get a diagnosis. And this is something very close to my heart because 2 of my children are undiagnosed.

Whilst we can indeed be enormously thankful that medical science is evolving and improving so rapidly –  approximately 5 new rare diseases per week are described in medical literature  – organisations like https://www.raredisease.org.uk provide essential support and a voice for those affected by a rare condition.

For those of us still in unknown murky waters, studies such as  DDD – Deciphering Developmental Disorder  https://www.ddduk.org  or the 100,000 genomes project /https://www.genomicsengland.co.uk/the-100000-genomes-project/  offer families like mine the best chance of getting an answer as to why our children experience various difficulties and potentially the best way to manage their conditions, obtain treatment or assistance and potentially connect with families in a similar situation.

Families such as mine with children who are undiagnosed and/or ultra rare can often feel alone. SWAN UK http://www.undiagnosed.org.uk provide the only dedicated support network for families of undiagnosed children and young adults affected by a genetic condition. Hand on heart I can say that the support I have received by being a member (and now a volunteer parent rep) has been a veritable life-line.

Although my youngest 2 children have a myriad of medical terms/symptoms and diagnoses, to date we have no unifying “umbrella” that explains why they are affected. Their medical notes are vast. Between them they have confounded some of the brightest and most well respected specialists across the country. If I had a £ for every time I had heard the words ‘rare’ ‘atypical’  ‘uncommon’, ‘complex (the list could go on for a while, you get my gist) I would be a very rich woman.

If a part of the human body or a specific organ is supposed to work a particular way, you can pretty much guarantee with my kids that it won’t. If unusual presentations or the extraordinary were olympic sports, my kids would be gold medalists. Several times over.

So over the years, being able to talk to those who understand what we are going through, who have felt left out, different or isolated has been incredibly important and helpful.

If one in 17 of us will be affected by a rare disease in some way, IT COULD BE YOU

Please click on some of the links above to find out more and if you can, please consider fundraising or donating: https://www.raredisease.org.uk/donate/      https://www.undiagnosed.org.uk/donate/

 

 

 

 

Tonight Matthew I’m going to be……

An adult!

Strictly speaking I ‘adult’ every day, albeit some days more successfully than others.

Yesterday however, I ‘adulted’ myself to the nines.

So that you can feel comfortable continuing to read and for the avoidance of any misunderstandings, I should reassure you that this post is perfectly respectable and I won’t be revealing anything x-rated or of a delicate nature. You can all breathe a sigh of relief and resist the notion of poking out your own eye-balls/resorting to mind bleach for fear of dodgy pictures and such like!

I don’t know about you dear reader but the majority of the time I don’t feel old enough, responsible enough or even qualified enough to do the “adulting” parts of life. Certainly not with success and authenticity in any event.

Apparently however, being married having children, dog ownership (he might dispute that as pretty sure Milo thinks he owns me) a mortgage and all the other infinitesimal accoutrements of life plus being over a certain age means I automatically qualify as an adult… and there’s no resignation option (well unless you ‘check out’ entirely but that’s generally speaking a bit drastic)

Over the last year particularly, “adulting” has been a part of my life I’d quite like to have run away from.

Somehow wherever I hide, no matter how precisely I have chosen the deepest, darkest recess or how carefully I stick my fingers in my ears and shout la-la-la, the necessity for “adulting” always has a way of finding me….darn it.

And even before last years ‘annus horribilis’ I must confess that I had very often felt like a player in that game “Hedbandz” rather than a real adult.

For the uninitiated, the game compromises of a plastic head band device with a slot in which you stick a card in which states the object/word/profession and the wearer has to ask a series of questions to try & work out what or who they are.

For added ‘fun’ you can do a timed session so they have to guess in a specific time period or a specific number of questions. Adding alcohol into the equation for the ‘Adulty’ version I’m sure can only enhance the fun 🙄 But never in a million years would any card ever depict me as an adult; in fact I think I’m possibly only marginally up from a lemming….

Anyway, what I mean by my ramblings above is, in theory I suppose I should know I’m an adult but the actuality is very different and frankly I really don’t feel I’m quite mature enough to make life or death (somewhat over dramatic!) decisions on a day to day basis when I can barely decide what to cook for dinner!

So now I’ve long-windedly explained that, I’ll get to why I ‘adulted’ properly yesterday.

For those of you who have followed my blog for a while or who know me in the ‘real world’ you are probably familiar with my involvement in SWAN UK.

SWAN stands for syndromes without a name and it is the only specialist support network in the UK dedicated to families of children and young people affected by a syndrome without a name.

Having 2 children who are classified as SWANS – they are both medically complex and although they have multiple diagnosed difficulties/needs, we don’t have an over-arching diagnosis that draws everything together – getting support from SWAN UK over 5 years ago made a huge difference to myself and the whole family. In fact, if we had not joined SWAN UK (its free!) we would have had no idea where to even begin to think of living when we moved to the UK some 4 years ago.

Mr Def Not The W’s was allocated Leeds as a base when he joined his new airline but we knew nothing about the area, about hospitals, schools, housing and services and so it was to my trusty network of online friends that I turned to to seek advice and guidance in helping us formulate a plan.

Of course SWAN UK’s services go far beyond the things I mention above. You can read more about the vital support they provide here: http://www.undiagnosed.org.uk/

Over the years, the advice, reassurance, sense of belonging and community not to mention the family days out, coffee mornings and get togethers have been a huge source of comfort, support and a wealth of experience for me.

Back in 2013 it became apparent that holding down a job, even working from home as I had done since 2008, in a role that I could fit around my children, was no longer viable.

I eventually found that in order to keep on top of work I was in a seemingly endless cycle of being up very early, going to bed very late and working all the hours in between that weren’t occupied with the needs of the family including weekends. Something had to give. It was *almost* my sanity.

Although I don’t miss the crazy relentlessness of those days and we are fortunate in that we can (just about) manage for me not to work (and are hugely grateful at times to our parents for stepping in when an unexpected bill/costs rears their ugly head) I do miss that feeling of achievement and accomplishment.

So in September 2015 I decided I would like to try and do something useful with my life and if possible, give a little something back.

I recognised that combining this with (at the time) 3 children with extra needs was going to potentially be problematic. (Turns out we now have 4 children with additional needs, although our eldest is almost 18 and would revolt against the use of the word child!)

I decided to volunteer to be a SWAN UK parent representative for North Yorkshire…. if they would have me! And they did.

In fact, this was absolutely perfect because recognising that caring for medically/physically and or cognitively complicated children can mean life doesn’t follow the best, most carefully laid plans, SWAN UK are happy for parent representatives to volunteer as much or as little of our time as we are able to give. They also understand that sometimes we have to drop everything with little to no notice and have always made it clear that the needs/demands of our children, wider family and ourselves are paramount.

Over the years of being a SWAN UK parent representative, I have spoken at a Rare Disease conference about my experience of being a parent of undiagnosed children; I have contacted my MP about being part of an APPG (all party parliamentary group) to discuss and raise awareness of being undiagnosed and the implications that has on families as a whole, not just the affected individual. I have visited Parliament and spoken to a wide variety of professionals about the difficulties of living with the unknown and unexpected as well as assisted in organising days out to celebrate Undiagnosed Children’s Day (last Friday in every April) arranged coffee mornings and fund-raising events.

I don’t want to come across as holier than thou but aside from (hopefully) raising awareness and sign posting SWAN UK, it did make me feel useful and purposeful again.

It gave me an opportunity to step outside the role of parenting my own children’s medical management and hopefully gave a voice to others in a similar situation.

Anyway back to the reason behind the recent adulting: after something of a hiatus in 2017, I attended a professionals meeting at our local hospital.

Having contacted the Harrogate and District Hospital administrative team (via FB messenger no less!) I pretty much threw myself on their mercy. They kindly directed me to the Head of Paediatric Nursing and The Head of Paediatrics and we set up an appointment Gulp.😳

The fact that the head of paediatrics is also my children’s consultant was not lost on me and was more than slightly daunting.

Somehow, seeing me in a different role to G Man or Minx’s Mum felt strangely discombobulating; at least in the run up to the meeting itself and I was plagued with disconcerting dreams that I would somehow disgrace both myself and SWAN UK.

Nonetheless, I asked SWAN HQ to send me some literature and armed with this, my trusty, very bright pink SWAN UK bag, business cards (get me! I’m posh!!) and a lanyard, I put my big girl pants on (erm figuratively you understand, I haven’t gone totally Bridget Jones yet) and my “grown up” clothes on.

Being only 5ft almost 3 inches, adulting clothes usually involve heels for me. Fretting that I didn’t want to look like I was trying too hard or heading out for a slap up meal, I opted for heeled boots, a patterned skirt & top, with a bit of jewellery and a swish of eyeliner & lippy.

On the inside I may have felt about 5 and was quaking like a jelly but externally I *hopefully* projected confidant, knowledgeable and approachable….

Obviously I couldn’t really ask those present at the meeting if I had successfully captured that but my audience were enthusiastic and receptive. They were keen to read and then display the literature I provided and told me that they would be disseminating the information to fellow colleagues, the Paediatric ward, Child Development Centre, Parents Room and Paediatric clinics. I also got agreement to have a stand in the foyer of the hospital to coincide with Undiagnosed Children’s Day in April. So all in all, I think it went well.

I came away feeling positive and uplifted and like a real-life proper grown up for the first time in a very long time. I’m pretty sure I didn’t have my skirt tucked into my knickers at any point or commit any other embarrassing epic social faux pas’s so all in all winner winner… I hope…. 😊

These are my salad days….

Once upon a time there was a person called Mum. Mum originally had a name but Mum had ended up having so many children that she was now just known as Mum or for a spot of variety: G-Man’s Mum, Minx’s Mum, eldest teenager who must not be named’s Mum, Famalam (a whole new level of confusion brought about by the “yoof of today’s” obsession with roadman speak) and other variations on a similar theme.

Mum suspects that her local authority may also have some pretty choice names for Mum but they are unlikely to be printable (or provable!) here and that is a story for another day.

Before Mum actually had her own children, she was actually a very good mum even though strictly speaking she didn’t qualify for the title role. At that point in her life she only had 2 tri-coloured cats so unless you considered the phrase “who do you think you are, the cat’s mother?!” applicable, she was reaching somewhat.

It turns out it’s much easier to be a brilliant Mum when you have imaginary children (and real cats) and only occasionally baby-sit other people’s or smirk at other parents whose children are having a public meltdown, smug in the knowledge that you could do the job SOOOOO much better.

However, Mum knows that she was indeed a very good mother pre children because in those halcyon days she spouted such wisdom’s as “There’s no reason at all that ANY child should have a crusty/snotty note when its so easy to wipe with a tissue” or “my child will eat all the things we eat, just in smaller, less seasoned versions.” She also proclaimed  sagely to her fellow thinking- about-becoming- Mum friends that children wouldn’t really change her life as it was so important that children learnt to be adaptable and behave in all manner of situations, accompanied by a tinkly little laugh. Mummy was indeed the epitome of smug…

Then Mummy went ahead and had THE CHILDREN. Mummy wasn’t entirely daft/(un)lucky to have 4 little darlings all at once. No, she thought she would spread the misery joy over a period of years. And then they all lived happily ever after. 

So child number 1 was born and Mummy spent her days between feeding/crying/elation and exhaustion with her head buried in such bibles of wisdom as Annabel Karmel, Penelope Leach, What To Expect the 1st year, Toddler Taming and other such patronising fabulous tomes of parental guidance (no I don’t mean the film category) so that she could qualify as The BEST Mum EVER.

Since I don’t want this to be a bedtime story that bores you to sleep, I’ll spare you the blow-by-blow account of children 1 through 4’s every waking moment as it goes on for many (many, many, many) years but one skill that Mummy found accompanied her through the early childhood years and surprisingly still lingers today is something called THE GUILT.

Guilt was and is her ever-present ‘frenemy.’ It’s amazing just how guilt can raise it’s cocky little head at any given moment and Mummy feels sure that if universities offered degree courses in it, she would have more than qualified for not just a BA (hons) but probably an MA and possibly even a PHD too!

Mummy you see very early on discovered that guilt was there to keep her occupied in the small hours of the night (why does this child never stop crying/screaming…have I broken it?? Did I actually want a child/ren after all?? ) and was especially good at loudly shouting when she pontificated if her children had an off button once they had found their annoying dear little voices that she had waited so patiently for to utter their first babble.

Guilt was there when Mummy went back to work for the first time and everyone else she knew was a stay at home Mummy. Guilt joined her when she resorted to controlled crying. It sat heavily on her left shoulder (I’m pretty sure that’s the explanation for all the pain in her neck anyway) as she sat with her fingers in her ears when at her wit’s end she decided to try controlled crying in sheer, utter desperation. That didn’t go very well to start with as Mummy was unable to control HER crying and it very nearly became competition as to who would tire out first…..

Over the years Mummy learned that THE GUILT had an uncanny talent for sneaking up on her at times she would least expect it. Mummy thinks back and wonders if THE GUILT is what is responsible for driving her to wine every night…then she remembers an interview on early morning television that suggested that if you have a glass of wine every night – even if it is only the one – that you are actually an alcoholic and THE GUILT laps it up. It has a very good appetite does guilt and it isn’t picky what it feeds off.  Mummy tries not to let it be an appetite for destruction and I am pretty sure she isn’t referring to the Guns ‘N’ Roses album of the same name…..

One of the things THE GUILT has an extra special relationship with and most likes to taunt Mummy with is THE FOOD; specifically feeding THE CHILDREN.

Mum studied the various Anabel Karmel books from cover to cover and invested in more ice-cube trays that you can possibly imagine  – originally for the purposes of storing and freezing micro amounts of home-made, pureed baby food in but now mostly used for the ice in a gin and tonic.

Over the advancing years she resorted to google too. Technology being handily available at all hours meant she could consult this oracle getting tips on baby led weaning et al and make notes about delicious recipes even in the middle of the night!

Nonetheless, it appears that Mummy’s precious darlings weren’t reading the books and despite being capable of reprogramming the Sky box/DVD recorder etc (something Mummy still struggles with today) definitely didn’t seem to understand the guiding principles and ethos of those internet articles showing happy, smiley pictures of  babies/toddlers eagerly scoffing down quinoa and edamame dip, chia and lingonberry smoothies and that piled on the guilt still further.

Mum is pretty certain even over 10 years on G-Man still hasn’t forgiven her for the polenta/spinach loaf she lovingly created (what was she thinking?!) When served he deigned to take the teeniest of mouthfuls, then threw it disgustedly as the freshly painted wall. Mum watched in dismay as it “walked” itself over and over like a possessed rubber man toy down the wall to land with a splat forlornly on the wooden flooring. G clapped delightedly at the ensuing greasy slime mark.

You see, back in her earliest (judgemental) Mum days, Mummy made a solemn vow to promote healthy eating choices and to cook all organic, exciting, varied meals with plenty of vegetables from scratch! She thought that manufactured baby foods were the devil’s spawn.

Mummy didn’t quite think this through however with baby number 1 as she had gone back to work near enough full-time, was still having to get up for feeds in the small hours and was pretty much totally exhausted after a day at work away from her precious one (child, not wine for the avoidance of doubt).

Very quickly Mummy discovered that if she spent all her waking hours peeling/chopping/boiling/mashing and pureeing, it left very little time for doing anything else, especially playing/reading and interacting with her dearest first born…and that made Mummy feel MORE GUILTY than ever.

So Mummy got the stick out of her ass  relented and decided to buy some JAR FOOD thus freeing up some of her time and hoped that it would assuage some of THE GUILT. Surprisingly at times, this seemed to quite nicely pile on THE GUILT and Mummy may or may not have decanted jar food into baby bowls and sprinkled a few cubed bits of veg on to the top when she took it to nursery in keeping with the (myth) homemade baby food plan that she had…

Child number 2 helped Mummy on her journey with THE GUILT by being sensitized to dairy proteins once she had given up feeding herself  and put him on formula. This took the form of eczema so horrific that child 2’s back would weep open sores which made him very sad and cranky and the stealer of all the sleep for months at a time. He also started with asthma at the same time. Co-incidence? Possibly but it accompanied her special friend, guilt, very nicely.

Mummy subsequently found that an extraordinary number of every day items contain milk or dairy in some form or another and therefore spent a great deal of time of her time reading labels in supermarkets and working out how she could make alternative versions of favourite pasta sauces that Child 1 would also eat so that she wasn’t cooking herself into the ground and could at some point attempt the art of conversation with The Daddy. Mummy is pretty sure that at some point the art of conversation led to child number 3 but at that place in time she was so sleep deprived she can hardly recall.

Child number 3  – G-Man – had extremely horrible, painful reflux. Mummy knew this by the high-pitched screaming and the contorting and jerking of his back that exhausted his poor little body. He was also able to vomit at will, projectile and prolifically, even hours after a feed.

The Daddy didn’t really believe the Mummy at first when she insisted it was more than a bit of baby puke until he witnessed with his own eyes the baby upchucking so violently it hit 4 separate walls, the floor and the ceiling all in one go. Mummy was just waiting for his head to start spinning in the style of The Exorcist but at that point the Daddy had seen enough and agreed baby G should see the Doctor.

After several bumps in the road, poor baby G was hospitalised as his blood tests showed his chemical balances were completely out of whack and the medical bods suspected a condition called pyloric stenosis.

A few days of tests and investigations disproved this and thus began the ‘interesting’ journey of trying to get infant Gaviscon powder into a breast-fed baby.  This was not in reality a very fun game and by the time The Mummy and The Daddy had actually mixed it up, spooned it in, chased it back into the mouth from the drooly-chinned screaming baby, he had cried so much and gulped down so much wind, it all seemed pretty much pointless anyway.

Mum and Dad were assured he would grow out of it and that moving onto solid food would be the making of him. He didn’t and it wasn’t. There isn’t a single baby picture of him for the first 3 years of his life without a bib in situ.

Fast forward many years to present day, reflux is still hideous and painful and despite the maximum doses of antacid medications and motility speeding drugs, G Man has ended up being fed by a naso-gastric feeding tube since last October and no one is quite sure where this is going….Certainly the last 3 months of paediatrics appointments have shown he has lost weight, albeit very small amounts, and the medical bods are again scratching their heads as to the best way forward.

Child 4  – Minx – for a variety of reasons was born at a time that had been accompanied by much stress and worry. In her early weeks of life when her numerous difficulties and quite significant medical issues became apparent, Mummy was pretty sure that THE GUILT was responsible for what had happened and that made her feel it even more which was a bit counter productive in the end.

Minx’s first foray into actual food rather than breast-feeding definitely didn’t go to plan.  Frequent chest infections, coughing and choking during feeding, poor weight gain and a seeming inability to maintain a good suck reflex meant she had been assessed by a speech and language therapist (SALT) by the age of 4 months.

After listening to her feed via a stethoscope, the SALT was concerned enough to ask for a video fluoroscopy to be carried out. A video fluoroscopy is a form of x-ray imaging which examines the mechanism of chewing and swallowing using barium sulphate and this is  added to a variety of foods and drinks. Tasty… Whilst eating/drinking occurs, a series of images are taken at different stages and the barium makes it easy for the radiographer and SALT to view what is happening and pin point any areas of concern or difficulty.

Although the test is not in any way painful or invasive as such, since the body is exposed to radiation, it is not something that is undertaken lightly, especially in very young children.

Since Mum and Dad were very new to the world of special needs, they hadn’t really absorbed the ins and outs of it all and were most definitely in a haze of unaware, uninitiated denial. They certainly hadn’t thought through the why’s and wherefores of how this test would be carried out. In fact, since it was scheduled at short notice, they hadn’t even been given a leaflet or chance to look it up on-line.

On the day itself, it became apparent that getting barium liquid into a child who was solely breastfed, had never taken a bottle in her life and had no experience of “eating” not even a taste off a spoon was going to be interesting problematic.

Fortunately as both parents were present, The Dad was promptly dispatched to the nearby pharmacy to pick up a ready sterilised bottle, formula and jar of pureed baby food so that the procedure could get underway.

For many parents, no matter what number baby you are on, their first foray into tasting food off a spoon is a moment to be cherished, photographed and exclaimed over delightedly.  Watching a baby’s varying expressions of suspicion, doubt, grimace and/or delight is usually a fairly monumental occasion.

This first tasting experience in a freezing cold, sterile in more than one sense of the word, environment was somewhat marred; a most inauspicious start.  Suffice to say it didn’t go well on multiple levels; not the least of which were exacerbated by the SALT and locum radiographer having a bit of a barney difference of opinion about whether it was acceptable to expose such a small baby to radiation from the procedure.

I think I did promise further up that it wouldn’t be a blow-by-blow account of each child’s developmental journey…. I seem to have spectacularly failed on that front as this piece is already much longer than I had anticipated when the mood to put pen to paper or rather finger to keyboard originally struck me, so I’ll try to get to the point of why inspiration struck to write the dang thing anyway.

Mum remains nagged insistently by THE GUILT and despite all the reasons she should know better has endeavoured to continue making as many delicious,  varied home-cooked  meals as she can possibly muster….that of course is between the myriad of appointments/admin/general assorted crappery that comes from managing 4 children with additional needs and the day-to-day running of the house.

Contrary to at least half of the children’s falsely held beliefs that Mum spends ALL DAY every day on Facebook, Mum was inspired watching Gino D’Acampo on a well-known known morning TV show (whilst doing the ironing honestly and not at all checking out she of the Willoughboobby’s fame fabulous wardrobe – total lust envy ) talking about a family favourite meal from his childhood which was so easy and so delicious and could be made up from leftovers too AND incorporate all sorts of hidden veg! Genius!

Mum watched Gino and crew waxing lyrical over various stages of the preparation and thought to herself how quick and easy, cheap and HEALTHY it all looked.  Indeed her own mouth was watering and discovering that she had near enough all of the ingredient already in, save some courgettes and the conghiglione (that’s large pasta shells for the likes of you and I) Mum vowed to pick up the extra bits for dinner. *

Several shops later, Mum had scoured the local area for the blasted conchiglione without success. Waitrose had a blank space on the shelf as did M&S (although a price tag revealed that the shells were over £3 for a mere few hundred grams!!) and Ocado had plenty of alternative suggestions but nothing useful. If Mum had stopped to think for a moment, she should have realised that this was a SIGN and stopped right there and just served up some chicken nuggets goujons with nutritious vegetables chips.

Mum however was still lost in a thought- haze of smiling, pink-cheeked grateful children thanking her for such degustation and how the dinner time conversation would flow with abandon about all the new and varied food stuffs they would try together.

So Mum went to the overpriced deli and purchased the conghiglione then set about this veritable feast of gastronomy. About 2 hours into the process Mum reflected that the ba**arding recipe hadn’t looked nearly so time-consuming and complicated on the TV, forgetting of course that Gino had one of those handy “here’s one I made earlier” bods for at least 3 stages of the process that had been condensed down to a 10 min slot on TV.  Nor had Gino used every single item in the kitchen as she appeared to have done. Mum surveyed the unholy mess surrounding her with gritted teeth but glibly anticipated the raptures of delight from her children and knew it would all be worth the end result. She did however decide at that point if she was ever going to make this again she was bloody well going to buy béchamel sauce rather than make it from scratch!!

Fast-forward to dinner time, and the family gathered expectantly round the table, Mum anticipated their reactions excitedly. It certainly looked fantastic and smelled amazing! Plates were piled high and for good measure Mum had made a large salad and served some garlic dough balls on the side as an extra treat.

Child 1 promptly reminded Mum that he didn’t eat pasta (except on camping trips with friends as a “necessity”) and mooched off to make himself scrambled eggs. Child 2 wasn’t home and child 3 point-blank refused to eat anything. Sigh. All hopes pinned on child 4, she did at least raise a spoon to her mouth….then informed Mum that actually she “wasn’t a big fan of this muck” and would just stick to the dough balls, salad oh and the shop bought orzo pasta ready salad in the fridge

Mum could have just put her head in her hands and sobbed but she was far too busy shovelling in mouthfuls of the food to care at this point and The Dad seemed to be enjoying it anyway.

The dog put his paw lovingly on her knee with big, pleading mournful eyes and told her without the need of words that he would happily scarf down any portion she was willing to give him.

Although Mum has a STRICT(ish) ban on feeding the dog from the table, she did briefly contemplate putting something on his own special plate….and then she remembered it contained onions which are very BAAAADDD for doggies and cheese which was the equivalent of about 5 hamburgers or something  so she had read in the vet, so that was that.

Mum has learned many a valuable lesson from that last venture into making meals off the tele…..and she won’t attempt it again for a while….but she might just tell the guilt to do one…at least temporarily….

*in case like Mum you fancy trying the recipe it’s this one: https://www.itv.com/thismorning/food/conchiglioni-pasta-bake-gino-dacampo-recip

Mum made the largest quantity using the vegetarian option and also used up some smoked salmon & sauce in some of the other shells. Note if you are serving strict veggies or those with dietary restrictions eg Kosher/Halal, you will need to substitute the pecorino or find a vegetarian version.

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.