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Today the case against my husband and I was withdrawn by the Local Authority and whilst we are relieved in the extreme, there’s a pervading emptiness, an anti-climactic ‘that’s that then’ feeling.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

The sky’s the limit…

I make no apologies but I am going to be *that mother* – you know the one that clogs up FB (& therefore anyone else who reads her posts, unless you have set me to silent or similar!) with proud, perfect first born posts & rambles to anyone who will listen how talented/amazing/Einstein’s veritable protege etc her child(ren) is/are.

Bare with me on this one though ‘cos I really do think I deserve (well not really me as such but I’ll get on to that bit in a minute!) to have at least 5 minutes of proud glory hunting on H’s behalf.

There are so many reasons I can wax lyrical about H’s virtues: the love and support he gives to all his siblings, (and us of course) the practical care he has voluntarily been trained in to provide for Minx so he can give medications via her gastrostomy, set up her pump feeds (and now G’s too) and aid and assist with various other aspects of personal care; his verve for life, his 100% commitment to anything he puts his mind too, his enthusiasm to embrace every day no matter what it throws at him, volunteering for the local Young Carers; you get the picture: I could go on ad nauseum.

However, the last 2 weeks give me even more reason than normal to shout from the rooftops: H started his private pilots flight training on Monday 23rd July 2018.

On Thursday 26th July 2018 he did his very first air-flight – SOLO!!! Given that he’s only ever had a trial lesson aged 13 prior to this, I think that’s pretty bloody impressive!!! So shout it from the roof tops I will 😊

Just call me Maverick! No first day nerves – Well H didn’t but I did!

From a very early age, H demonstrated a love for all things plane related.

Not necessarily surprising given his Dad’s job (airline pilot for those who may not know) and watching him hero-worship his Daddy flying his little die-cast planes through the sky at death-defying angles, accompanied by lots of engine nnnnnneeeeewwwwaaaahhh type noises (apologies for very poor sound description!) was very sweet.

By aged 3 he could identify most aircraft in the sky or at an airport with spectacular accuracy and had a vast collection of little plastic aircraft models on display stands from various different fleets. Very fragile, a nightmare to dust around and definitely not compatible with younger siblings clumsy hands!

He could fly the simulator on our home computer and his idea of a top day out was sitting in Jersey Aero Club watching planes coming in and out of the Island for hours at a time.

Stealing Daddy’s safety tabard for doing aircraft walk round!
Captain Beaton & First Officer La-La at the helm

Since the age of 4, he’s talked about being a pilot. Initially we responded with a laugh; how many of us said things when we were pint-sized about future occupations and how many of us actually do those particular jobs? As far as I can tell the world isn’t overrun with spacemen, nurses, ice-cream taste testers et al (Incidentally Mr DNTW’s wanted to be a dustbin lorry driver or the night porter on a sleeper train!) Over the years however, H’s convictions only grew stronger and 3 or 4 years ago, recognising that he was serious, we began scrabbling down the back of the sofa for the purported thousands that Brits are supposed to have scattered in loose change (I suspect this is collectively as I only found about 2p, a chewed piece of gum no doubt stashed by one of the offspring for safe-keeping 🤮 and a partially eaten nerf bullet)

The sofa search having proved fruitless, I went to investigate the mystical money tree that lives at the bottom of the garden. Alas, there’s a straggly looking bush and a peeling- paint-bit of fence but nowt else.

We started looking at flight schools more closely and after I had scraped my jaw off the floor cognisant of the fact that it’s very unlikely we have a spare £100,000 + just waiting to be spent, H and hubby had more serious discussions and investigations as to how H could realise his end goal of becoming an airline pilot.

The plan is for H to train just like his Dad did: get a job in the real world to pay for exams, flight training, hour building etc over the next 2-3 years. It’s not the easiest route but it’s a considerable saving on dedicated flight schools and his sense of achievement ultimately will be enormous.

H has also been extremely fortunate that due to the generosity of grandparents he’s able to do a ‘crash course’ (definitely not a good choice of words but can’t think of a better one!) and do his private licence over a month this summer. He’s taken 8 of the 9 ground school exams, passing a number with 100%.

Given that between revising for a-level exams he read through the 9 tomes of aviation law, navigation, radios, meteorology etc for ‘fun’ and relaxation, he’s already showing dedication and determination beyond his tender years. (NB, have made a note to talk to him about his understanding of the word fun!)

Already in the face of adversity, H has had to overcome some hard times. Last September when undergoing his very important application for a Class 1 Aviation medical, he very unexpectedly hit a huge brick wall: despite being merely 17, seemingly fit as the proverbial butcher’s dog – he cycles regularly, goes walking for fun(!) and hikes in the Dales, tests showed an issue with his heart.

Initially he believed it was an error on the machines part (youthful exuberance) but further investigations revealed a progressive heart condition. He was devastated as were we.

No amount of consoling that at least this had been detected early could reassure him. For H, it potentially meant the end of his dreams in pursuing a career in aviation

As a mother, all I could think was how, why and what happens now?? Your heart is a *fairly* important bit of kit….

The cardiologist we consulted was excellent and there followed a round of extensive medical testing to find out how serious things were (are). Sleepless nights for me at least whilst we waited for results.

The good news is that whilst the condition is progressive in nature, he should have years ahead of him, symptom free.

He will be regularly monitored and scanned and eventually medication will control the symptoms. Based on present medical knowledge he will at some point need surgical intervention but we are talking far in the future and with medical knowledge, procedures and equipment evolving at lightning speeds, who can say what the future will bring.

Nonetheless, H was rejected for a Class 1 medical and caveats issued alongside this meant he couldn’t even pursue a private pilots licence. H has always been a positive person but this knocked the stuffing out of him.

After taking time to let the news sink in, we decided not to take this as a fait acclompi. H and Mr DNTW’s consorted with aviation medical and legal experts.

I’ll spare you the ins & outs but it became apparent that if this hadn’t been H’s initial medical licence application, he could have been issued a licence with restrictions (no flying with anyone over 65 or a fellow pilot with medical restrictions) so effectively, the refusal to issue his licence was penalising him for something that hadn’t happened and was/is unlikely to be an issue for many years to come!

As ‘luck’ would have it, another would be pilot had been declined his medical for a different condition for issues that are unlikely to be problematic potentially ever. He was in the process of pursuing his case at the court of human rights.

The Civil Aviation authority agreed to concede before it got to that level and thus opened the floodgates for others in similar situations. H was advised to appeal the decision and after a nail-biting few months he was issued a licence with restrictions.

He is under no illusions that this does complicate matters a little but if air travel and the airline industry continues to expand as predicted, there will be a shortage of airline pilots in the years ahead. (Brexit of course is an unknown, unquantifiable potential source of concern – & not just to the Government! 😏)

So H has made the decision to pursue a flying career and if all goes as it should will have achieved his private pilots licence in the next 2 weeks!! Eek.

As I type, H is preparing for his last exam, another day of navigational flight planning and cross country flying. He’s earned his first set of ‘stripes’ – epaulettes – and is proving that he’s a force to be reckoned with!

First ‘stripes’ … a while to go yet before the airline version First Officer, then Captain someday?

I have no doubts that H will achieve his goals professionally and personally in the years to come because of his hard work, determination & drive to always do his best. Now if only that could also be applied to ironing his uniform…..❣️

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!

Just your ‘every day-average’ superhero…..?

FRIDAY 27TH APRIL 2018 – What might this date mean to you?

I guess to answer that will depend whether you are reading this before the 27th (assuming I actually manage to publish it ahead of schedule, ahem!) on the day itself or after.

It might be just a normal (whatever that is) day for you. It might be barely memorable or scored across your heart and seared burning in to your mind for a host of reasons: a birth date, a due date, a loss date. Exams? Pass or fail. Post arriving:  exciting news, terrifying news, bad news or good? A day to remember or a day to forget.

I can’t predict the future (oh how I wish I could, lottery numbers anyone?!) but with more than a degree of certainty I can tell you what the day will mean to me and mine:

SUPERHEROES – Undiagnosed Children’s Day  (UCD)

A day of celebration in conjunction with SWAN UKon the impact that being undiagnosed has on a child and why this makes them superheroes! Recognition of all their varied, unique abilities and quirks to put it in a more kindly fashion.

This year is the fifth (yes 5th! I’ve been banging on every year on or around this date!) annual nationwide awareness day and the aim of the day is to raise awareness of undiagnosed genetic conditions and to raise funds for SWAN UK: http://www.undiagnosed.org.uk/news-events/news/undiagnosed-children-s-day-friday-27-april-2018/

As I type this I am aware that I have created (more) mayhem than usual. Not really a surprise. I am quite good at that. Perhaps that could be MY Superhero talent/new name – Mistress of Mayhem 🤔-  I quite fancy the idea of a costume with MM on it somewhere…hmmnnn.

Don’t worry I promise not to don lycra  (the world really isn’t ready for that) or wear my pants outside my trousers any time soon  – although I am currently VERY sleep deprived since Minx’s feed pump fed the bed and I was woken at 3am by wails of despair. Full bed change, including  mattress protector and duvet plus scrub down of sticky child = all good fun and increases likelihood I may forget myself  and inadvertently dress the wrong-way-round!! Please take pity on me if you see me in the street pants on the outside loud and proud!

nGWx43IRT2SwUzqq33G2rgWhen bad feeding pumps happen to good people…….Bedroom floor… chaos……everything sticky and wet….teddies and cushions everywhere.

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Minx improvising with fleecy onesie, obligatory unicorn slippers naturally and not to be out done, on trend mermaid blanket. A pretty ‘heroic’ effort I think….

Anyway, back to the reason for my latest chaos: G-Man and Minx’s primary school have very kindly agreed to support the SUPERHERO theme for Undiagnosed Children’s Day. Any child that wants to can wear some form of superhero attire for a small donation with all proceeds going to SWAN UK. How great is that?

We have been incredibly fortunate that the children’s school has from day one supported both the children and ourselves on a practical and emotional front and we are eternally grateful for this.

So when I wrote to school about SUPERHERO DAY and they kindly shared  it with the school newsletter in suppport of UNDIAGNOSED CHILDREN’s DAY, perhaps I didn’t explain it as best I could and now various parents are (rightly) a bit peeved that there’s yet another dressing up day which they have to scrabble around to find costumes for and potentially plead with their offspring to dress up in. It was never my intention for anyone to have to go and buy (or make) anything specially and I certainly wouldn’t want anyone to be out-of-pocket, other than if they wish to make a financial contribution towards SWAN UK.

Fortunately, not only are the school supportive, so are the parents and having opened up on Facebook that I am the loon behind this Friday’s shenanigans and the reasons why, the responses have been overwhelmingly positive. For any parents (and/or staff) reading this: Thank you 🙂

Moving  forward, I best confess that when I started this blog post (and as is often the case when the mood takes me to write) I didn’t have a formed idea of what I wanted to say……

I don’t want to come across all preachy, nor woe is us in terms of the day-to-day practicalities we deal with but I can’t give enough weight to the importance of knowing we are not alone in being undiagnosed and how isolating and scary it can be without appropriate support.  Somehow all of that needs to be wrapped up neatly and tied in with SUPERHEROES too, otherwise there’s not much point in sharing this post!

In order to find a place to start, I spent some times searching for inspiration  playing on Facebook and found myself googling heroes and superheroes. Surprisingly there are an inordinate amount of songs and song lyrics referencing heroes – I found a site listing 50 pretty well-known artists –  songs from days of yore to the 2017 offering from The  Chain Smokers and Coldplay: “Something Just Like this”  Actually, I generally liked many of the listed tuuuuuunnnneeeess as in the main they were pretty darn  fab –  who could fail to love David Bowies 1977 Heroes? (seriously if you don’t love it, what’s wrong with you?? 😉)

A lot of info on the good old web naturally refers to the superheroes we find in comic books, cartoons and on the big screen. It’s fair to say Marvel, Disney et al have a VERY loyal, hardcore fan base spanning a wide variety of genres.

‘Comic Cons’ –  comic book conventions –  have become a world-wide established phenomenon not just with children but grown adults too, religiously adopting the costumes of their favourite superheroes and priding themselves on knowing every character nuance and remaining in character at ALL times – as a teenager I was fortunate enough to go to New Orleans. My parents had booked on spec into an upmarket hotel chain that was surprisingly reasonable.  We found out the likely reason why it was less $$$ than expected: coming down to breakfast the next morning I think we were the only hotel guests not part of the MASSIVE star-trek convention that was being hosted there. Most disconcerting to be in the lift with various characters, aliens and such like all decked out to the nines, mainly speaking Klingon……

What eventually dawned on me (and probably you by now Dear Reader) is that I have been making  a hash of things, fretting about the details and getting bogged down in spurious things that have no relevance. I realised I actually didn’t need to research or learn 100 amazing but useless facts about superheroes because I am already in touch with so many real-life heroes –  and definitely super ones at that – in everyday life!

How could I forget our SUPERHERO children – and by ‘our’ I mean my own undiagnosed children as well as the SWAN UK collective (massive or posse work just fine!)  SWAN children and for that matter their siblings, are all heroes because they deal with so much and miss out on many ‘normal’ parts of being children on a day-to-day basis. How too could I neglect to mention the heroic parents who hold it all together? And it goes without saying the numerous medical personnel too.

In the 6 years I have been a member of SWAN UK, I have learned that SWANS come in all shapes and all sizes, all ages and stages;  Our children’s needs are all uniquely different – cognitive, physical, medical or combination thereof; yet I have never come across a stronger, more supportive and cohesive network.

People whom I have only met in the virtual world or followed on social media but with whom I have established firm friendships; those who rise up against inequality, injustice,  campaigning for basic rights and dignity,  disability access and inclusion. Forging ahead to give hope to others coming after, inspiration and positivity to celebrate the small and seemingly insignificant milestones.   The stoic reliance on coffee, chocolate and cake and ability to laugh at the grimmest and most revolting happenstance. A lot of discussions involving poo and lack of sleep. We celebrate and commiserate, sometimes all in the same conversation.

And the darker side: I have seen battles courageously fought, courageously lost. I have seen too many tragedies. Losing even one child is one too many. It is against the natural order for a parent to bury a child.

It would be wrong of me to dwell on sadness when UCD is a day to celebrate but neither can I sweep it under the proverbial rug. It is something that has touched all parents/carers of complex children in one way or another.  Be that grieving for the child you thought you would have but recognising their reality, their future, your hopes and dreams for them will be of a different kind or in that most final and catastrophic of situations: death.

In truth I could not do the latter ‘justice’ for want of a better word. Whilst I can be sympathetic to such grief I cannot truly be empathic to such devastating loss or speak from the heart in the ways of those who have been through it personally. For this I feel both gratitude and guilt.

However, since I’m here to highlight and celebrate all things superhero, I can speak passionately and proudly about my own children and the issues that they take in their stride, year on year, day in and day out.  I also speak with respect and recognition of all the parents and children detailed above  – they are all superheroes in every sense of the word.

In my own children’s case, their benchmark of ‘normal’ is normal only to them and of course children like them. Pain – they experience for a variety of reasons and continue to go through on a regular basis. They have been prodded, poked and jabbed with needles for bloods, anaesthetics, genetics, electrical muscle testing, surgeries. The lists go on and the appointment letters stack up. They have been and continue to be tube fed via naso-gastric tubes or gastrostomy tubes in stomachs. Multiple medications at varied intervals throughout the day. Physiotherapy, supportive footwear, splints, mobility aids and such like are part and parcel of our household.

Daily there are postings in our SWAN UK community  group about children on oxygen, ventilated, with seizures or undergoing complex and at times pioneering medical treatment. Of children learning a new skill with the help of technology, vital equipment and achieving all that they can.

It is sobering to reflect that in my own children’s 11 years and 9 years respectively, they have been examined by more GP’s, pediatricians, surgeons, consultants, therapists of various ilks, than I can count. I have forgotten how many anaesthetics each has had, although I know Minx numbers into double figures. There are likely more surgeries ahead based on recent discussions.

The professionals and teams involved in managing care compile a lengthy list. G-Man and Minx have each undergone tests involving noxious liquids and substances, radiation, been forced to lie still or assume a specific position for lengthy periods of time. And their experiences of being scared, uncomfortable, of invasive and complicated procedures would put many an adult to shame. As the years go on, they are less phased by it and more focused on maximum parental extortion – the more scary/painful/lengthy = £££ for bravery rewards. I say this only slightly tongue in cheek, wishing that it didn’t have to be that way but grateful for their resilience.

In the past when well-meaning folk have commented on how brave the children are, I have perhaps done them more than a little disservice. Minx is used to it I have stated matter of factly. She knows no different. It’s been that way since she was merely weeks old and now trips to Great Ormond Street are seen as an opportunity to have a girls day out around appointments or take in a show – her words, not mine. Bittersweet.

G-Man too.  Although his issues have become more complicated as years have gone on, he is increasingly less fearful of requests for blood, all too familiar with the boredom of over-booked hospital clinics and lengthy waiting times. He knows how to work the gadgets on the hospital beds and which cord not to pull in the bathroom unless you want a flurry of medics crashing into the room and invading your privacy.

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Erm….is it supposed to be that far off the ground?! (Older sibling familiarising himself with the controls….well he does want to be a pilot after all!)

 It has been said that you should never try to meet your heroes, lest they be found to have feet of clay.

I know I don’t have to worry about any heroes I meet in the real world being fallible because the ones that really mean the most (to me) are already the biggest part of my life and have already far exceeded all my expectations and achieved so much in all the ways that matter most.

So on Friday 27th April 2018, whilst my children don their favourite superhero attire like numerous other children around the country, I will be extra specially proud of them knowing that their real superhero suits will be hidden underneath!

If you would like to learn more about SWAN UK and the ways you can support SUPERHEROES, please click on these links: https://www.undiagnosed.org.uk/support-information/  https://www.undiagnosedchildrensday.co.uk

To donate: https://www.undiagnosed.org.uk/donate/

 

 

 

 

 

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.