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.
- 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.
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…. 😊
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:
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.
Hello my hooomannn’s!
Mum, its been over 6 weeks now so I thought it was time I brought you a ‘pup’-date from over the rainbow bridge.
I know you have been so sad about my passing. I have watched you feeling down, seen you wracked with guilt, doubts and worries, especially over the last few days of our time together.
I wish you wouldn’t dwell so much on those sad times nor second guess the decisions you made before I had to leave you. It wasn’t your fault, you couldn’t know I was poorly and we dogs love to please so much, I hid it well, I always tried to keep my best brave snout on for you, no matter what.
Even when I wasn’t feeling my best in those last few days, I did enjoy our walks. Honest. Well I suppose if I’m strictly honest, I enjoyed you and the rest of my hoomann families company… and not forgetting the sausages you brought me when we went to the cafe by the river; especially the sausages!
I thought you might want to know a little about where I’ve been, what I’ve seen and what I’ve been up to.
Well first things first, I don’t hurt anymore and I don’t feel tired! In fact I feel like a puppy again. Boundless energy, everything is so exciting and needs exploring! And the smells – wow – I don’t even know where to begin in describing those!! It’s like every amazing, delicious, fantastic thing you could ever wish for: cheese, carrots, steak, sausages, newly moan grass, crispy leaves, Fox poo and all my hooman family smells rolled in together!! Yum! Absolute paw-fection.
There are so many other animals here to play with and lots have similar stories to mine!
Here no one here is scared or lonely, no one is hurting; no one feels tired or has any cares. No one is old or unwanted. In fact, most importantly all any of us know is love and happiness.
Our bellies never feel empty yet there is always room for more. I only have to think about a nice, sizzling sausage or bit of crunchy carrot and suddenly I can taste it!
There are balls and plenty of squishy toys everywhere and even if I chew the flip-flops no one minds and I don’t get a bellyache! That’s a definite plus.
Did you know Mum, some of the other souls here previously lived with bad hoomans who only caused them pain and fear? The ‘tails’ they tell me are horrible. Fortunately they are now but distant memories and those of us who want to, can watch over our loved ones whenever we choose.
I look in on you all often and it’s been lovely to see you this last week with the new addition to the family: little Milo. What a cracking young pup he is!
I know you think that I might feel betrayed – too quickly replaced – but Mum, he was my gift to you all! I knew you needed him. I opened your hearts you see.
When you were first thinking about a dog and you got me, after so many years of ‘Pawcrastinating’ I knew I needed to guide you in the ways of all things canine. Although you had researched a lot and borrowed other people’s dogs, it’s a bit like what you told your hoooman friends about having children: until you have your own, you just aren’t prepared, no matter how many books you read or how many pooches you ‘pup-sit.’ But like you also said, it brings you far more laughter, fun and happiness… albeit with a fair amount of 💩💩 thrown in!! 😆
So I went as easy on you, my Martin Dad and your other less furry children – my bros and sis – as I could; although I do know that when I had to leave, it almost broke you 😢
We won’t dwell on that though. Because I want you to know I’m happy and that means you have to be too.
My gift to you all was empowerment and knowledge that our family NEEDED another dog, to give a happy home, needed a dog to keep up your usual level of functionally dysfunctional chaos! So now you know.
I see already that young master Milo has been well indoctrinated in the ways of mischief. Hiding your dad’s slippers was very clever. But a stroke of genius to divide and conquer: 1 in the crate and 1 secreted away in his bed! Clever pup. The force is strong in this one.
I see he shares my love of blueberries, carrots & the odd crumble of cheese. Positively discriminatory on the cucumber I note but you can’t have everything… and anyway he seems partial to celery … which frankly I agree with Martin- Dad on: it tastes of welly boots… and not in a good way!
He’s starting to master the cava-tilt head pose and cottoned on to staring up at you beseechingly whilst you prepare food at the kitchen island. Smart move… took me much longer to suss that one out.
So Mum, when you think about me now, please know that I’m well looked after. Please reflect on the fabulous times we shared, the wind in my fur and running free through the nearby park. Know that I’m watching over you all and if you catch a glimpse out the corner of your eye of me, you didn’t imagine it; I’m just checking in on you all.
It’s almost 2018. You can leave the last year where it belongs: in the past. Look to the future. Teach Milo well – I think he could master some of my old tricks quite soon… oh and mum, go easy on dressing him up in the jumpers…. yes yes, it’s all very cute and I guess quite needed whilst it’s a tad on the chilly side… but a dog does need some dignity you know!
So from my furry little heart to you and yours, I wish you peace, happiness and good memories. Embrace it Mum! ❣️🌈😍🌈
This is a post I didn’t think I’d write for many years to come. One I shouldn’t even be thinking of composing. It’s not right. It’s not fair but here it is.
I am also acutely aware that this ramble may be perceived as very self-indulgent. Far too many of my good friends have lost their children. I would not dream for one moment of comparing my grief to theirs. But nonetheless the sudden and very unexpected loss of our much loved dog burns white hot and I am hollowed out with sadness. For all intents and purposes, our pup was a fully paid up 7th member of the family. Well technically 8th I guess if you count the cat. (We do love her too!)
If you have read any of my past blogs, you will know some of the difficulties and battles our family has faced over the last few years.
Whilst it’s not a competition, no top-trumps fest, the day to day demands of medically complex children, the amazing quirks but also relentlessness of autism, endless appointments, clinics, surgeries, battles for and with various agencies and services takes its toll. You Buddy (or Sir Budston of Burnarrrr as we sometimes referred to you!) my wonderful little dog, helped alleviate some of those burdens.
Please don’t misunderstand me. I recognise there are many people, probably some of them reading this, who would give everything they have and then some to be facing those same fights and difficulties I mentioned, having lost their precious loved ones far too prematurely; but oh my boy, I thought we had so many long and happy years ahead; wondrous walks to stroll/pad through, delightful or disgusting (depending on your perspective) smells to sniff and cuddles on the sofa to sneak in at any and every opportunity.
Buddy, much admired by all who met you, faithful four legged companion. How can we only have celebrated your birthday a month ago? How can it be that we never even made it to a whole year of you being in our lives, in our home?
You were my birthday present almost one year ago. We had talked about having a dog for over 5 years before taking the plunge. A bit like having a child, it was never quite the right time to introduce a dog to our chaotic lives.
Enlarging the family, moving house, redundancies, working abroad, relocating and leaving the island of my birth and the only home our children had ever known followed by house rentals before finally having a settled(ish) house of our own.
Quite out of the blue and having been a steadfast, most resistant party, I’ll never forget the day my hubby, Martin, turned to me and asked if I wanted a puppy for my birthday!
Minx was about to go into theatre for surgery number whatever and was giggling woozily from the pre-op medication. I recall being so taken aback I asked him if he had actually downed the pre-med instead! I was ecstatic and not about to give him time to change his mind.
Although it had been a long time coming, I knew exactly what kind of dog would suit our family, our crazy-hectic-bonkers lives and had done quite a bit of research in the hope that one day… maybe…just maybe… we would be lucky enough to have a pooch of our own.
We saw your picture first and a flurry of emails were exchanged before THE BIG DAY: your homecoming; my 40 something birthday. The moment I picked you up, cuddled you to me and laughed at the thought of putting you in the enormous crate in the back of the car, you filled our hearts so entirely. The void you leave behind is a chasm of epic proportions. I don’t know how or if ever it can be filled.
It doesn’t seem possible that I’m writing about your passing over the rainbow bridge when we should be looking forward to so many more years of mischief and mayhem. More days fretting about what you might have managed to scarf down if one of us wasn’t quick enough to stop you – I lost count the amount of Lego I scooped up just in time; how many bits of this and that I retrieved from your doggy jaws. Your quivering nose whiffling along always seeking out, questing and foraging. You could smell a dropped blueberry from a 100 paces and hear the rustling of the treats bag in the kitchen no matter where you were in the house or garden; a pretty useful tactic when you were being cheeky and not wanting to come to us when called!
You brought so much happiness. Joy, laughter, giggles and fun. And so much poop too! Martin tells me he cleaned up 12 doggy bags worth yesterday. Considering I last did it on Saturday morning and yesterday was only Wednesday, that’s quite an achievement. Especially since you were nil by mouth from Monday night on. And you were at the vets all day Tuesday….
We joked it didn’t feel right to get rid of all the 💩; perhaps we should create some poo-based monstrosity altar dedicated to you? Your legendary pooping out an entire, intact nerf bullet still makes me smile now. (NB definitely not to be encouraged responsible readers/dog owners – the children learnt the hard way that I meant what I said if they left things like Lego/nerf bullets lying around = bin)
A lot of expectation on such stumpy little legs. Not just the 6 people in your immediate family cuddling you, loving, and petting you. So many people that had the pleasure to meet you – our favourite coffee shop by the river and all the employees therein, our lovely groomer and her dog Poppy, friends and family and the seemingly never ending stream of delivery people with medical supplies or equipment, Amazon deliveries and so forth. Always an action packed day in this wonky-old household and you always ready to greet them with a deep woof, occasional bark and a wave of your magnificent plume of a tail. We often remarked your tail was bigger than you! It looked like it should sit in pride of place on a hat worn by one of the 3 Muskateers. And now I have a small piece of it saved in a memory box to remember you by. It smells still of the grooming, pamper session you had just last Friday. I’m glad it is of that and not the clinical smells of the veterinary practice, their kindness not withstanding. Your grooming sessions over the year cost more than my haircuts!
You were my secret keeper extraordinaire. Too many nights I muttered oaths into the top of your sweetly curling fur when dealing with the latest co*k-up from various services, be they special needs, medical bods or utility companies. So many times I poured out my heart and soul to you, you listening attentively with your head on one side, adopting the classic cava tilt that all other cavachon owners will recognise in its uniqueness. When I was saddest you snuggled that bit closer. When I was happy you were delighted that there were extra treats and cuddles and when it was all just a bit too much, you expected nothing but ensured your presence was always felt.
We joked often that you were not so much a dog – more part goat, part sloth. Your dislike of vigorous, brisk walks was the cause of much frivolity and it was remarked upon more than once that you were the perfect companion for a fair-weather not terribly exercise motivated owner such as myself. Too many times at the site of your harness and lead you would feign sleep or rush back to your bed refusing to come out, especially if it was cold. and dark. and raining. and there was a ‘Y’ in the day…..
Of course now I know my darling boy, you weren’t just faking it; you weren’t trying to make me feel better about the dislike of walking in the 4-seasons-in-1-day climate of Yorkshire. You were tired. Your little body was constantly battling a build up of toxins that in the end would be your downfall.
I try to take comfort from the fact that you are no longer suffering. That we could afford you the peace and dignity that is so often missing when our human loved ones are terminally ill. It makes a small dint in my grief.
At the moment there is too much sadness in this household. Too many reminders everywhere we look: your water bowl empty, toy box neat and tidy, not strewn all over the kitchen. Your place on the sofa vacant. I think even Tilly the Cat in her own feline way misses you; after all she can no longer take a swift munch out of your breakfast or dinner when she thinks none of us are looking.
Members on a wonderful Facebook web site I belong to for cavachon lovers have provided me with enormous support. An out pouring of love, empathy and sympathy. A stunning bouquet of flowers was delivered from them to me today. It made me cry again. But the tears were underscored by gratitude too. After all as Alfred Lord Tennyson said it best: “Tis better to have loved and lost than never to have loved at all.”Buddy 04/10/2016 – 14/11/2017 🌈❣️
I’m a bit less ranty today but no less passionate so let’s get this done and written before I lose my impetus… never mind the will to live.
I like to think I’m currently channeling my inner Taylor Swift and her pals in the Bad Blood music video:
(*above image may be subject to copy-right)
But in reality I should be so lucky. I’ve spent far too much of the day with my youngest son on a hospital ward, wallowing, sat on my butt, scrolling social media and eating chocolate. Less Swift, more sloth; I can feel the helplessness wanting to swallow me up; shut me down again.
(sorry sloths everywhere who are probably outraged at the comparison)
I’ve been extremely touched how many people have commented/got in touch or shared my previous post. Thank you.
I wish what I had written didn’t resonate with so many but I am also grateful for the support and the sense of solidarity.
I recognise the issues facing my family are far from unique. Judging by support groups I belong to, friends, social media and so forth, this utterly deplorable battle for services to provide and protect those most in need, those who don’t have a voice of their own, those with the least ability and energy to fight are being waged up and down the county.
Whilst the difficulties faced may be slightly different, they all share a common denominator: the vulnerable, those in crisis, those society should be protecting and empowering.
Forgive my Whitney Houston moment but our children ARE the future and if we don’t invest in them and secure the best possible pathway, what hope is there for society moving forward?
I also know the elderly, infirm, mentally unwell and so on deserve their cause being championed in the same way.
I recognise on a deeper level my attitude is simplistic and that something policy-wise, fiscally, has to give or change dramatically going forward.
How do we achieve this? I don’t know; I never professed to have the answers as to what this should look like in terms of the bigger picture.
All I do know is a seismic shift is necessary, society is screaming out for it. How we approach this, how we can achieve it is for somebody/ies far more qualified than I. (Otherwise I probably should be standing for government….🤔)
The demands of a large, aging population who are living longer, the epidemic of obesity, drugs/alcohol/cigarettes, the advances in medical science meaning those who once would have met their maker because of cancers, heart disease, prematurity of birth and the terrifying increase in the so far unstoppable dementia are well documented. There can be no escaping the fact that expectations and demands for provision will increase year on year.
All the while the funding for front line services is being reduced or in some cases done away with all together. Departments asked to find millions in cost savings, balance the books and yet still pull it out of the bag, somehow.
Morale is at an all time low as evidenced by the mass exodus of Doctors, nurses, emergency services and so forth.
I’m not naive. I know the country is on its knees financially and floundering in uncertain times: Brexit, the future of the NHS and government but the refusal to engage, instead throwing up wall after wall, challenge after challenge means there’s less money in the pot to provide even the most basic of services.
Is it just me and people like me that can see the irony in money being spent on disputing and denying care instead of the care itself?
We are informed of cuts to services/benefits/ grants every time we switch on the tv, open a news paper. The effects of austerity on all aspects of social care, health and education (and of course the ripple effect on our police force, armed forces and such like) have been hiding in plain sight for many, many years
Why is it that the major political parties seem far more invested in scoring points at each other’s expense and plotting a coup to oust their leaders than implementing change and securing services for the greater good?
I want to believe the bean counters genuinely care, that there is an appetite for change but they have become so blinded in covering their backs, their departments and their funds, (actually the tax payers funds) they have forgotten their original purpose. The other alternative: that they enjoy the power trip, playing god and causing abject misery has to be some dystopian fantasy…. doesn’t it?…
I do know that continuing with this ostrich style approach, riding rough-shod over those of us trying to cope day in, day out and strangling us in a bureaucratic nightmare, (presumably in the hope that parents/Carers will give up) ISN’T helping.
If as much effort and emphasis was put into providing and fulfilling services, identifying and enabling children, parents and the wider family before they reached crisis point a great deal more would be achieved.
I can’t help thinking that in fact the overall financial outlay would ultimately be a lot less, nevermind the impact and fallout on the family which ultimately add to the spiralling costs.
How much do local authorities spend on retaining expensive legal council, defending cases and when challenged by parents on the attack, concede a case with moments to spare? The costs in such situations are not merely financial.
Whilst I cannot go into the ins and outs of our case in detail at the moment (until we receive the decision of the SEND tribunal I don’t want to prejudice any outcome) I can relate some of the damage and the wider implications the delays have caused us so far:
- Inability for autistic child to access mainstream education since March 2016 resulting in high levels of anxiety, depression leading to self harm and suicidal idealisations necessitating multiple in patient/out-patient hospital stays
- Provision of interim specialised education package with 1:1 staff ratio/on occasion 2:1 to provide up to 2 hours study per day (where possible round child’s anxiety)
- Child unable to access GCSE subjects/make option choices
- Involvement of multiple agencies on numerous occasions – police, accident & emergency, CAMHS, children’s social care, Young Carers, autism out reach, fostering team and foster carers
- Local authority (LA) assessment and review officers to prepare EHCP, take information to specialist information panel on multiple occasions, liaise between relevant parties, issue consultation paperwork to potential schools
- Assessment of child by educational psychologist for local authority
- School transport (single occupant) with escort to ensure autistic child safely taken to and from school
- Maternal mental health crisis triggered, medical intervention required, inpatient psychiatric care for 3 months, multiple medications and therapies
- Community care package to support maternal mental health, crisis team management, out of hours services
- Care package from disabled children’s team to provide direct payments in support of care for medically complex child thus enabling sole breadwinner to continue to work
- Emotional support to other children in the family necessitating pastoral support, teachers from 2 separate schools reporting back on children’s well-being and attending looked after children’s (LAC) team meetings, approximately every 6 weeks
- All children in family requiring support and intervention by CAMHS to address trauma and ongoing psychological fall-out
- Family engaging professional legal team and independent educational psychologist to prepare case for tribunal
- LA engaging in-house legal advice and support
- LA acquiring professional legal counsel to present at tribunal
- Convening of independent tribunal and panel member(s) in official court to hear evidence from family and LA surrounding case
How much does all of this add up to? This is not an exhaustive list and no doubt there are things I have unintentionally missed/forgotten but I think it is a fair representation. It’s pretty depressing reading isn’t it?
Has what I’ve detailed shocked you? We are just one family in a cast of thousands, dare I even say millions.
Unless you or a loved one need to avail yourself of services, you assume it happens to others; not to people like us.
We are now the others.