There’s a worm at the bottom of???…:🐛🌹

I’m sitting on a train heading to ‘that there London’ (AGAIN!)* and I’m feeling rather queasy…. in fact it’s entirely possible I may lose my breakfast…. and it’s absolutely nothing to do with the hot chocolate with enormous whipped cream topping…. mainly consumed by Minx anyway. True story.

I’m not travel sick and NO, before any one asks, I’m definitely NOT pregnant! So what’s the reason behind the dodgy tum?

A phone call I’ve just taken from one of our lovely children’s community nurses (CCN’s).

Before I continue, I want to make it clear I can’t fault our fabulous community team in anyway. They are truly awesome & go above and beyond to support and assist, buoy me up & go into bat for us when necessary. But today….. after the obligatory hello’s and chatting, 3 very ominous little words came out of the CCN’s mouth:

I’ve been thinking…..”

There are many, many ways these oh so innocent musings could be interpreted; For example, Mr DNTW’s will tell you that hearing me utter them strikes fear, dismay and unease, swiftly followed by him sighing and asking “what do you need me to do and how much is it going to cost?!” I am after all rather partial to a bit of DIY and a Pinterest protégée. 😊

Sometimes the brilliant ideas I have are a little bit far-fetched and carried away. Sometimes it might be said I’ve been a tad over-enthusiastic about both our capabilities and availability of resources but generally speaking, they turn out alright & even the ever-doubtful Mr D usually stands back surprised and pleased with the ultimate effect. Who knew I would so successfully convince him that ‘lagoon splash’ paint would look strikingly effective on the garden fence; so much so he is insistent that we do the new panels in the same shade? Anyway I digress.

So back to the vomit-y inducing words of the CCN this morning. Alas, she was not debating with me the intricacies of distressing furniture versus sponging it, nor musing the right colour of blinds for the bathroom window (things currently being mulled over by yours truly… 1st world problems and all that) No.

Apparently her week’s break away from work, exploring the delights of Scotland had induced a light bulb moment in regard to G Man’s frankly grim surgical site which still hasn’t healed post op from June. Further more, recent swabs (I’ll spare you the ins and outs) have shown G-Man has a really nasty staph infection in the site itself.

Staphylococcus bacteria live harmlessly on our skin most of the time but if they get in to cuts or bites, it can potentially lead to very serious, systemic infections.

It’s not something you want to under estimate; a seemingly healthy individual can deteriorate rapidly and the threshold for hospital based treatment and admittance to prevent sepsis is low.

He’s already been on a strong course of antibiotics but it’s not really showing much of an improvement and I strongly suspect that given we have just finished a course, after a few days off, we will be right back to square one.

We are already mindful that any raise in temperature, the smallest signs of being unwell or the operation site looking worse, means rapid access to our local children’s ward for proactive management. Frankly brilliant though our local hospital is, I’d rather stay away, thank you.

So I too was eager of ear to hear the CCN’s revelations, albeit I did remind her that time off from work is *supposed* to be a break and flattered as I am that my urchins were on her mind, she really needs to get out more!

Whilst ‘distressing’ the furniture might currently be occupying my mind, it’s fair to say that the words she uttered after the ubiquitous ‘I’ve been thinking’ were very distressing to yours truly: ‘what did I think about larvae therapy?’ 🤢

My first thought was that I tried very hard NOT to think very much about larvae at all really. I tittered on nervously on my very crowded train & asked hopefully if I had misunderstood her words and she actually meant ‘lava’ therapy or even ‘lather’ (better yet, lager therapy?!😉) but it was an empty, clutching at straws kind of a query.

I suppose it’s logical really. I remember in history covering this ‘delightful’ subject when we explored medicine through the ages. Even Casualty (the TV program not local A&E!) devoted part of an episode fairly recently to the magical, restorative properties of maggots thriving on poorly healing wounds. Gip. 🤮

And there’s no doubt that some of the more far-fetched/rumoured old wives tails do have their foundings in facts, even if the science side wasn’t necessarily quite understood back in the days of old.

In the more (allegedly) evolved and enlightened world we live in now, with the widespread and ever-growing concerns about antibiotic resistance and in combination with our fears of pollution, climate change & such like, it makes perfect sense to consider a more holistic, natural approach. I just wish it didn’t have to involve my family…

My stomach churned uneasily as she continued to extole the virtues of our mealy-mouthed little fiends friends. I squeaked a bit, giggled nervously & blew my cheeks out a lot. By this point, even though I was trying to be discreet, it seemed half the train carriage were eager to learn more about the source of my discomfort and I don’t think I was imaging the gimlet eyes of those around me boring in & edging closer as I listened, equal parts intrigued and revolted.

As the CCN warbled on, she attempted to persuade me that they are in fact the insect equivalent of being on the Debrett’s honours role. Allegedly their pedigree from back in the day boasts something to do with the making of Princess Diane’s wedding dress (I’m not ashamed to admit I did google trying to find the somewhat tenuous connection but I think that was a family of the Silk-worm variety) no less. Clearly my non- committal “uh-huh” demonstrated my ongoing ennui with the subject matter.

The CCN remained undaunted and in a bid to reassure me she wouldn’t be rocking up at the house with an old ice -cream tub full of wrigglies that she had collected from around the neighbourhood, she continued to outline that IF (& I have to stress, it really feels quite a bit IF…. I know, I know, I need to put my big girl pants on 🙄) we went down the larvae debridement route (posh hey?!) the larvae would be teeny, tiny little things encased in a perforated tea-bag like structure that she would apply to the skin…..for a week….. 😬. If this was supposed to make it more palatable, I can’t say it worked…. certainly don’t want to get one of these mixed up with the Earl-Grey & PG tips of a morning….would definitely count as a rude awakening!!

So I have been left with the task of doing some further research and seeing what I think before we proceed further. Ultimately I know I should be very grateful for anything that *hopefully* prevents the need for surgical management and I know that it’s quite an expensive ‘last hurrah’ so I guess it’s a case of Hobson’s choice really isn’t it?

All together now, I await your rousing chorus of “there’s a worm at the bottom of the garden and it’s name is Wiggly Woo, please!

* As usual it’s taken me a while to finish this post, rudely interrupted by hospital appointments as I was, so it’s now afternoon….& I’m still feeling icky!!

3am Eternal….

It’s 3am (actually it’s not as I write this, it’s more like 8pm but the thoughts that led to this blog post pinged into my head at 3am & hoping to eventually get some semblance of sleep, I declined to let the brain-fart creative juices run riot)

3am. In the days of my ‘yoof” it meant something quite different to where I find myself now: 3am might have been when I rolled through the door, perhaps *slightly* tipsy; 3am giggling chats with my school or uni besties; where we had face-packs & chocolate (& revolting White Lightning Or MD20/20 in the latter years) and shushed each other in overtly loud whispers.

3am Eternal, that absolute belter of a tune by The KLF with their ancients of Mu Mu! Now I have an ear-worm & find myself mentally humming. These days if I had the budget, I’d rather like to be more in tune with the Mui Mui (fashion darling!) but that’s another story…

3am now: when the rest of the world is sleeping. When all is quiet. When you feel alone, scared and any problem(s) you have feel insurmountable, all consuming and impossible to solve.

Ironically, I’m far from alone. I’m on a children’s hospital ward where 3am doesn’t mean all is quiet and settled. It’s an alternative, less pleasant version of a city that never sleeps.

Whilst the nursing staff go about their business calmly and efficiently, even if (when) the dreaded crash bell sounds or alarms from machines and monitors peal and squark; the heart-tugging cries of babies and children in pain or scared There is both an urgency and yet serenity of those on duty in these darkest hours.

We have a 3am visitor. A surgical resident called up to our ward because Minx isn’t behaving. Anatomically speaking.

  • 3am is when my imagination goes into over-drive. I’m over come with the ifs, the buts, the maybe’s; the pointless worries and the unhelpful questions that come unbidden when you’re a parent, and especially the parent of a medically, physically, cognitively or combination thereof child/ren.
  • In reality of course I know I’m far from alone. Wherever it’s 3am, there will be a multitude of man-kind engulfed by their own demons, be they parents or not. Those worrying over relationships, financial matters, jobs, mental health issues, where their next meal is coming from. I’m sure Dear Reader, you can add a plethora of reasons I haven’t listed.
  • I can add guilt to my annoying bed-fellows who hover sadistically at the 3am party. For however many of the worries my brain attempts to rattle through, I know I’m one of the ‘lucky’ ones.
  • I’m reassured by the surgical resident’s breeziness, by Minx’s visceral reaction to his proposal if matters don’t sort themselves out; even groggy from the after effects of surgery and the powerful pain medications pulsing through her, she is not one for rolling over and playing easy. She is not in favour of his plan and whilst a part of me knows that ultimately we may have to adopt the cruel to be kind approach, it is heartening to see she is strong enough, with it enough, to protest and rail against it.
  • So whilst I may wonder at 3am how I will ever juggle all the varying needs of my children, if I remembered to order medications, feed, equipment & supplies; did I send that email, reply to that message, make that all important phone call, at the very least I am fortunate to have those worries; the luxury for want of a better word to fuss and fumble, curse and sigh about all the never-ending chores.
  • I would take that in a heart-beat over the emptiness, the silence, the agony of losing a child. There are friends, far too many dear friends, who deal with that hollowed out grief. Who lie awake at 3am with the eternal knowledge that never again will they hold, sooth, cuddle or fuss over their cherished child. Who would give everything they had and then some to be in my shoes, (slippers) right now.

    So when I’m feeling overwhelmed and exhausted with it all, I will remember that in reality, I am one of the fortunate ones & banish those unhelpful spectres back where they belong. Dawn will come one way or another and the 3am fears will recede. We will fight on another day. ❣️

    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

    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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    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.

    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…. 😊

    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.