A line in the sand….

Have you ever felt like running away? Just dropping everything, grabbing your car keys/travel pass/comfy walking shoes & heading off into the sunset?

I know I have – more so now than I ever did as a child & I’m pretty certain that I would be way more successful at it these days too – given that I am allowed to cross a road by myself* & go further than the bottom of the drive way & have a credit card to boot!

That not withstanding, the actual getting out of the house process within a 5 minute window – without leaving behind bags, keys, medical supplies – would be nothing short of a miracle in itself!

*of course actually having 5 mins peace to be BY MYSELF to enact the running away plan might be a hindering factor…. but if I’m sneaking off alone, I suppose I wouldn’t need half as much baggage (or snacks) as the usual shenanigans dictate when going out en famille? 🤔

Equally however, if I’m running away, I’m NOT leaving my shoe collection behind…. Minx has already called dibs & I wouldn’t put it past her to gather up the lot the second my back is turned & claim finders keepers so maybe this adult running away plan is more difficult than I thought to pull off.

I’m joking I think;

I (on the whole) love my life & know that I’m one of the lucky ones: supportive family & friends, a husband I adore & I’m fairly confident he feels the same (after 26 years together, 23 married – medal or martyr?! 🤣) 4 amazing, incredible, infuriating, fabulous, (some times fatuous) children, 2 daft dogs & a long suffering cat.

In fact as a mere observer, I live a charmed life. I don’t ‘work.’ I live in a beautiful house (the bank own more of it than we do but even so!) We have good food, plenty of it & nice clothes. We have reliable cars, althoughI’m pretty sure just typing these words means I’ve doomed that to 💩

I *may* have a reputation for chugging Prosecco/gin etc like lemonade & coveting shoes (kind of deserved) & handbags that on occasion I’m spoiled enough to receive. So I recognise that I am indeed more fortunate than so many, way ahead of the game.

But appearances can be deceptive as we all know; and whilst I don’t dispute all the lovely, material things I have (& have gratitude for) and I do wholeheartedly recognise that having the love of a good man and others in my life, equally I wouldn’t wish some of the practicalities or heartaches that living in a family with medically/physically complex children & a young person on the autistic spectrum, brings.

The constant stream of appointments, the letters addressed to the parent or Carer of… the endless meetings (or zooms/equivalent thereof during this time of ‘covidageddon’) the never-ending stock taking and ordering of medications & equipment and feeding supplies; the physio regimes & preparation of drugs that Walter White himselfwould be impressed by.

I don’t want to gnash my teeth in frustration trying to rewrite not one but 2 Education Health & Care plans (EHCP) that are so loosely written you could drive a London bus through the holes.

I don’t want to justify why my young people need the support that I’ve painstakingly outlined and have to listen to a teacher, SENCO (special educational needs coordinator) or bod employed by the local authority to tell me there’s no more money in the system; I’m being too demanding, expecting too much. You’re damned right, where my kids are concerned, never mind Tiger King, I’m Tiger Mum.

Then there’s the FEAR

Hyped even more in these “Covid times”

The worries that niggles away every day of parenting complex kids where there’s no benchmark for normal.

Wondering whether we wait out the latest blip at home or if it’s time to “bother” the professionals in hospitals – and that’s another worry – am I that over-reacting parent? Will the Dr’s/nurses label me as “GAD” (generalised anxiety disorder) or think me foolish? More scary still – FII??? (Fabricated induced illness – a real worry amongst the undiagnosed community as this term seems to be bandied around more readily) Have I jumped the gun too soon by rushing in or worse still, left it too late and I should have trusted my instincts in the first place. It’s completely exhausting, overwhelming at times.

Then there’s the bloody beeping feed pumps or sleepless nights because your child is in pain and you are powerless to take it away.

Watching the clock until the next dose of medications can be administered and the hope that then they can settle into some kind of exhausted sleep before the day begins again and you pick yourself and them up, hustle them into uniform, a wheelchair, reassurance that they can make it through the day ahead. A bright (but forced) “you’ll be fiiiiine once you’re with your friends!”

The drudgery of ‘normal’ parenting: washing, shopping, cooking, cleaning, ironing and the times when I really don’t want to debate exactly what I said, when I said it and who I said it too; take note kids: DO as I Say NOT DO as I Do!!

I don’t want to referee another fight, don’t want to help with homework or home school or any permeations thereof. I don’t want to share the raspberry & chocolate mini magnums or the Maom sweeties I’ve secretely stashed.

I am selfish. I want to lie in bed late & get lost in a great book, drink too much coffee (maybe too many 🍹) not answer to anyone but myself, definitely not the phone. I want to watch crap TV, not get dressed if I don’t feel like it.

I want to eat junk food (sometimes) and not factor in how many portions of fruit & veg I’ve crammed into the offspring to try & prevent ricketts, scurvy or whatever else might crop up to (metaphorically) bite them and therefore me, in the arse.

I don’t always want to be the grown up, the responsible one. And yes, dare I say it, I want something of my own identity back too.

I know that above all else I love my children & other half fiercely and ferociously. I do not want (or deserve) praise or recognition for getting on with the hand that life has dealt us but sometimes, just sometimes, I want space to breathe and just be.

Where is the girl that loved singing, acting, dancing, Smash Hits & Just 17? The one who knew all the Top 40 bands & could name the song from the opening notes? The one who was going to marry George Michael (ok in hindsight that was never going to work itself out for a variety of reasons 🤣🤣) or one of the NKOTB’s? (equally as unlikely!)

Who was that woman who had ambition, studied, took exams, embarked on a (surprising!) career in finance, a 5 year plan?

Oh dear…. maybe it’s better not to look back too closely at old pics!!

Somewhere along the way of the adulting process, the parenting, school runs for the last 16 years, last minute magicking up of ingredients for a forgotten domestic science lesson, PTA bake sales, the medicalising & therapies, in amongst all the battles with services, social care and such like, I’ve lost who I was, who I am.

Sometimes I see a tantalising whisp of her on a day when she’s donned a posh frock, a fleeting glimpse at the edge of the mirror when applying her lippie or when she sings along loudly whilst Miley Cyrus* blasts out on the radio, loud and punchy.

*for the avoidance of offending Miley and her legions of fans, I’m definitely not claiming I’m anything like her in any way but dang that girl has amazing pipes (no lewd comments please!) & I’m loving her latest stuff, especially the Stevie Nicks Edge of Seventeen sample on Midnight Sky! Midnight Sky Miley Cyrus

Sometimes when I try to remember what it felt like to be just ME, not someone’s mum, wife, chief cook & bottle washer, it feels like a game of Guess Who, trying to pick her out in a line up of vaguely familiar faces and accessories.

👩🏻‍🏫🧒🏻👩🏻↗️🔙❓⁉️🔜👁‍🗨 ↖️👧🏻👩🏻‍🦱👩🏻‍🔧

Or maybe it’s more like those Usborne books? The series of “Thats not my…” insert unicorn/penguin/car? “That’s not my Mum – her eye bags aren’t big enough! That’s not my Mum – she hasn’t got any wrinkles on her forehead…” I don’t think this book would be one of their greatest sellers to be honest…

And it makes me feel terribly guilty to acknowledge all this; after all, as one of my young people is fond of pointing out, it’s not their fault, they didn’t ask to be born & if I can’t cope, I shouldn’t have had so many children…. ouch…point taken.

Recently I had what I like to think of as a “factory reset opportunity” & I snuck away with Mr DNTW’s as my partner in crime, or rather partners, 2 of them being of the 4 legged variety.

It was a glorious day, one that emphasises how very beautiful North Yorkshire is. Mr DNTW’s & I jumped in the car after loading up the pooches, headed up the A1 and went to the seaside *“sans enfants

*Before anyone calls Social Services, the younger 2 weren’t left home alone with a box of matches, baked beans and tin opener. We are lucky to have some very experienced and fully trained carers to call on for respite

I felt a split second of guilt knowing that the kids would have loved to come too…. but it evaporated quickly with the sun glinting off the road surface, the fields that rolled away behind us and the knowledge that we were getting ever closer to the water.

Admittedly the North Sea doesn’t have quite the same pull as say, the Med but having lived all my life (prior to the last 6 years) on an island surrounded by water, (yes I know the UK is an island but it is not the same as the Channel Islands!) the sea is the one thing I miss hugely and always feel drawn too.

Sunny skies…. oh I do like to be beside the seaside….

So when we arrived in beautiful Saltburn-by-the-Sea, eventually managed to find a place to park and then the restaurant that made both of us go “oooohhh” (those of you old enough to remember the Bisto twins advert peering in the window, it was very reminiscent of that!) had a free (socially distanced!) table AND would accept the dogs, well it felt like serendipity, the stars were aligned and the gods were smiling on us!

I won’t bore you with the inanities of our lunch (delicious! Worth every penny) but the fact that we didn’t have to pick a restaurant based on how good it’s Wi-fi was (or wasn’t!) whether there was something on the menu that everyone in the family could eat or how we could seat so and so next to so & so but not next to them was an added and unexpected treat.

We hadn’t even really set out to find somewhere to lunch. We just stumbled across the restaurant as we began our walk. Having been so careful for so long about maintaining shielding, not socialising, not going out unnecessarily and so forth, I think we both felt a frisson of excitement, liberation I suppose.

Outside in the sunshine

We laughed, we chatted over numerous different topics, reminisced and remembered why we love being together so much in the first place.

We had 3 courses AND coffee without anyone moaning they were bored or too hot/cold/wanted to go home. We people watched and admired the decor inside (we were outside on the balcony because of the dogs) The toilet facilities had me in raptures and starting a new Pinterest decor board! (Octopus tentacle door handles are surprisingly pricey it turns out! 🤣)

The dogs too were happy under the table, loving being with their hooommmaannnss; occasionally small noses would snuffle up by our knees & 2 pairs of beseeching eyes would watch EVERY.SINGLE,BITE.OF.FOOD we took. They were content with the occasional bit of ciabatta surreptitiously smuggled under the bench and watched the seagulls with their beady eyes.

Beautiful Saltburn-by-the-Sea

Later with our bellies pleasantly full but not sleep inducingly so, we set off down the pier to walk off our lunch and let the pooches have free roam along the beach. There’s a stretch closest to the ice-cream shops, toilets & arcade that’s designated dog free or dogs on leads & not on the beach itself but just a little further on, miles of course golden-red sand that was perfect for them to run free, in & out the water, chase each other; investigate the tantalising seaweed, flotsam & jetsom of sea life that the incoming tide was depositing randomly along the shore line. Judging by the amount of sniffing and enthusiastic tail wagging, the short, happy sounding barks, they too were #livingtheirbestlives.

Actual footage of yours truly in the sea…. the NORTH-BLOODY-FREEZING-SEA!!

All in all we walked for around 2 hours. My ambition to keep walking until we drew level with the wind turbines further up the coast was perhaps a tad ambitious (apparently 10 miles or so further up the coast!!) and so mindful of the fact that we did indeed need to return home that same day, we about turned and made our way back to the car, happy, tired, a bit sandy but refreshed and exhilarated.

That day stands out to me. It made me feel like me again. It gave me a glimpse into the future of what times might be like when Mr DNTW’s reaches retirement age (a good while yet!….and not budgeted enough for!) and the knowledge that we will (hopefully) be able to be more spontaneous, jump in the car, drive up the coast, do something on a whim from time to time.

And it reminds me too that we are the lucky ones: too many parent-carers out there terrified that their children won’t make it and if they do, because their care needs are so profound, so complex, so costly, what the hell happens to them when their own parents are no longer around or no longer able to provide the care they need? A tale for another time…..

6 Go Crazy On A Socially Distanced Adventure…*

* a very dreadful homage to all things Enid Blyton to hopefully offer some light-relief in these challenging times….

The 6 DNTW’s have been holed up together under one roof for less than 72 hours and the wholesome, ruddy-cheeked (feckless) children are clearly feeling the strain. As are their parents.

After a mere 2 & 1/2 days of home schooling, Mr DNTW’s could be heard enquiring at what age teachers are legally allowed to retire and Mrs DNTW’s is contemplating ingesting the hand sanitiser that her very lovely, witty and glamorous (also childless therefore explaining the non-haggard visage and aforementioned glamour!) friend sent her in the post because she has read they contain alcohol.

In a time of national emergency surely it is obvious that both should be drunk not rubbed on one’s hands?! (In the interests of health and safety please don’t!)

Mrs DNTW’s knows she should be very grateful that she has thoughtful and lovely friends who think of sending her such precious things like alcohol flavoured hand-gel in these desperate times but right now she is wondering if she can drink the contents as they do in fact contain actual, REAL alcohol. She also feels it desperately unfair that Mr DNTW’s has refuted her suggestion of sacrifice that she consumes hard liquor and remains 70% proof at all times because apparently an alcohol content above 66% is necessary to effectively kill off bacteria and she is trying to protect herself from the dreaded “C” word so in turn she can nurture her family.

Unusually given the vocabulary of child number 2, it is not that ‘c’ word that she is worrying about for the time being, nor is it the BIG C but it is definitely a very unpleasant C which shall not be mentioned herewith 🦠

It is likely that Mr DNTW’s is not thinking of the health and well-being of his wife in pouring scorn on her proposal but is rather more concerned he will be asked to aid in the SPAG (spelling punctuation and grammar for those not in the know) work that has been set as part of the home-schooling curriculum by actual teachers who are laughing delightedly and rubbing their hands with glee hand-gel at those contemptuous parents who spout such nonsense as:

“huh! 6 weeks off in the summer! They should know what hard work is really like!”

In her defence, Mrs DNTW’s would very much like it to be known that she has never been one of those smug and belittling folk. In fact she thinks that anyone who has voluntarily and willingly decided, (not to mention paid out horrifyingly large sums of money for the privilege of doing so) to nurture and cherish young mind’s – other people’s children (Sartre’s quote “Hell is….?!”) – should probably be sectioned canonised.

Mrs DNTW’s has tried to instill a respect for authority, foster a love of learning and an oasis of peace and tranquility in the classroom that was once her dining room.

In truth she wasn’t very successful imparting these qualities to her older children in the past so it is unsurprising that the younger ones reject her request to answer the register, greet her politely with “Good morning Mrs Definitely Not The Walton’s” and yell “Oi Karen and BOOMER” at her periodically. Mrs DNTW’s wonders whether telling her precious off-spring that they will enjoy working in 45 minute blocks with 15 minute movement and snack breaks might have been a tad ambitious and perhaps it should have been the other way around.

After Mrs DNTW’s has spent 20 minutes surreptitiously consulting her phone for an explanation of fronted adverbials, preposition and sub-clauses, she wonders whether she ever learned anything at school all those years ago.

She and child number 4 finally crack on with the questions relating to the Harry Potter themed English work and she has been designated scribe because Minx’s hands are tired, despite the fact she has only held the pen doodling. Mrs DNTW’s is dismayed to find that they are only on question 4 and they have already spent an hour arguing over whether Hermione would have had an easier time at school if she had learned early on about the beneficial properties of argan oil and serum for frizz-prone hair.

Child 3 has left the room and embarked on his designated movement break, disparagingly retorting that it is his right to leave after 45 minutes whether he has finished his French set piece or not.

His movement break seems to have incorporated a trip back to the bedroom on to his X-box and when subsequently summoned to return, his dulcet bellows of “I just need 5 more minutes to finish this match” ricochet off the walls from the 3rd floor all the way down.

This prompts Child 2 who is “self-studying” in his room to angrily fling open the bedroom door, music blaring from the dark, fetid cave-like dwelling to announce he cannot possibly get anything done with such inconsiderate shouting around him and he needs to assume a horizontal position on his bed, encased in a furry dressing gown until at least an hour of order and tranquility has been restored. Fortunately Mrs DNTW’s is wise enough not to engage in that battle and beats a hasty retreat.

Child Number 1 who actually left school several years ago and under usual circumstances would be at work, is also now confined to barracks until further notice. He chooses this time to grace us all with his presence and wonders down to the kitchen, bleary eyed, whereupon he opens the fridge door and gazes in forlornly until the beepy noise kicks in. With much dramatic sighing on his part, there is opening of multiple cupboard doors, also the freezer and trips back and forth to the garage for essential supplies. Mrs DNTW’s informs him that “no we don’t happen to have any lovely part-baked rolls, fluffy pancakes, nor lashings of beer, ginger or otherwise” to meet his brunch criteria.

Children 3 and 4 return to the dining room class-room and survey the bits of paper, pencil sharpernings and crumbly bits of broken rubber that seem to be peppered about the place despite Mrs DNTW’s not having witnessed any usage of items that would give rise to these annoyances. Mrs DNTW’s sighs and wonders weather by some form of stealth osmosis her dining room is absorbing waste matter from the many dormant class rooms scattered over the UK, indeed the rest of the world as the “C” word holds us all in captivity. In fact come to think of it, she notices that the room seems to be giving off an aroma most usually associated with the lingering scent of school dinners, pine disinfectant, sports lockers, lynx and farting. She makes a mental note to add Febreeze to her online shopping order which is scheduled in the earliest available slot, 9 week ahead.

Perhaps Child 1 is responsible for the odours as whatever he is doing in the adjacent kitchen (the door between is firmly closed) requires a lot of banging of saucepans, running of taps and occasional expletives.

This reminds Mrs DNTW’s that she has not time-tabled any musical activities for her sweet darlings and after briefly contemplating hunting down the old recorders and music books, she gives her head a wobble and reminds herself why she hid them in the first place. She decides that an afternoon of listening to Billie Eilish over and over again with a running commentary from the Minx detailing the video montage and seven gazillion You-Tube quips will serve this purpose perfectly. Child 3 can make do with revising his spotify play list.

After what seems an age but in reality is only another 45 minutes, the children are getting fractious and Mrs DNTW’s is feeling mutinous as she made the rooky mistake of opening the door to let the scrabbling dogs into the class-room – (what fun my darlings, we can do a live biology/veterinary course!) and caught the scene of utter carnage and devastation that was once her kitchen but is now a scourge of dirty cups, burnt bits on the hob, crumbs everywhere and judging by the greasy paw prints on various surfaces, Child 1 has left the butter out which the bl**dy cat has taken advantage of.

Dismissing the class, she briefly contemplates hauling Child 1 back downstairs and bludgeoning him with a rolling pin until the sanctity of her once pristine kitchen is restored but decides actually that some TIME OUT from her children and some vigorous scrubbing might be good for her blood pressure and rising feelings of wanting to puncture things (including people) with sharp objects.

Verily as she has cleaned down the last surface and re-stacked the dishwasher so that it contains more than one awkwardly loaded frying pan, 27,000 cups and glasses (so the off-spring had indeed previously been hoarding them in their bedrooms after all!!) and single spoon, her little urchins meander their way back into view and piteous cries of “we are starving/going to faint with hunger and die of thirst” reach a crescendo.

Equilibrium restored, Mrs DNTW’s tells her children she is just putting the finishing touches to home-made chicken noodle soup which WILL BE DELICIOUS and nutritious.

The steely glint in her eye almost but not quite convinces the heckling mob not to argue with her on this matter. Protestations are stared down (Paddington would have been impressed at the hardness of stare) and Child 1 dishes out Tiger Bread with lashings of dairy free spread that should have fed the family for a week and been usable to rustle up a couple of cakes (for the home economic lessons naturally!) but apparently merely only feeds a man-child in the last month of his teens. This causes such a cacophony of noise and uproar that Mr DNTW’s appears from the garden looking concerned, holding something that looks suspiciously like it should have belonged in the clean laundry cupboard and possibly masqueraded as Mrs DNTW’s favourite face muslin.

At this point of reappearance, Mrs DNTW’s suddenly realises that Mr DNTW’s has been suspiciously absent for his part of the educational responsibilities of the morning and her voice reaches that steely tone when you are not quite sure if she is spitting a bit whilst talking (Mr DNTW’s is standing the requisite 2 metre distance to comply with BoJo’s social distancing policy so can’t be certain) Mr DNTW’s acts afronted and tells her he has been cleaning up the garden doing vitally important repairs and necessities that form MEN’s WORK and in fact she should be responding with gratitude and affection. Oh and could she possibly wash his trousers because he had forgotten when he embarked on the pressure washing etc that he was still in his favourite ones and not his old man’s saggy bum, paint-stained jeans. Even the children realise this was a mistake of epic proportions given her current frame of mind.

Lunch is served, after hands have been scrubbed red raw for the umpteenth time, in something of an orderly fashion. Perhaps the jewels of her eyes are cognisant that Mum is not to be trifled with for now. There is the merry clinking of spoons in bowls and Mum tries not to think too hard about her lovingly purchased-month-by-month flatware, in terms of economic-chippings-to bowl- basis for it is not really the children’s fault, she supposes, that she seems to have raised a gaggle of baboons. Clearly it is their Father’s.

The lively chatter around the table turns to afternoon activities. Mum thinks that it will be delightful and heart-warming to get out for a family walk, thus sticking to the new government rules of one daily activity in the open air, en famille and exercising the pooches all in one fell-swoop!

Mum is proud of her genius and plans to allow electronics to be used for the purpose of identifying flora and fauna in the fresh, sun-light filled air, thereby covering science AND exercise in one. Whilst mentally patting herself on the back, she cajoles the children to find suitable foot-wear and coats. The children are stunned that Mum has agreed that electronics can be taken on the trip and haven’t yet figured out that Mum has no intention of letting them listen to music with gratuitous swear-words and You-Tube clips of Yoda from Star Wars giving advice on sticks, bushes of love and Sea Gulls Stop It Now! (If you have a moment look up Bad Lip Reading quips like the gem below;it’s worth a giggle in these troublesome times)

Child 4 notes that it is sunny and despite living in Northern England and there having been a hard frost on the ground when they awoke in the morning, appears in Daisy Duke style shorts, flip flops and a crop top. Mum manages not to swear and instructs child to return to bedroom and re don the sensible leggings she had on earlier. They compromise on the crop top under a wooly jumper and weekend trainers.

Child 2 appears in joggers, 7 layers of tops, winter coat with a furry lined hood and furry boot style slippers. Mum asks him to take at least 2 layers off and put on sensible foot wear.

Child 3 is nowhere to be found and when roared for, appears from the back of the car where he has been patiently sitting, wobbly of lip and wild of eye given the baying mob that are his family yelling in such unbecoming tones. Meanwhile the neighbours are wondering if contacting the police on 101 for an ASBO constitutes a genuine emergency in the grand scheme of things, especially given the “C” word crisis.

Child 1, in spite of being the oldest, is rushing around the house, whipping the dogs into a frenzy of excitement by hurling various toys at speed and excitedly yelling for them to retrieve. The dogs are delighted that FINALLY they are being given the attention they deserve and that everyone else seems to be joining in with the shenanigans, given the through traffic that is going on with various children traipsing up and down the stairs. The cat merely narrows her eyes witheringly and hopes they will all leave very soon so she can regurgitate the grass she has eaten on the parents bed. She is feeling a tad queasy since ingesting the butter.

Mr DNTW’s is BUSY doing things that involve removing all the shopping bags from the car, re-configuring seats to get the wheelchair, dog-crate and all children ensconced within. Not for the first time he reflects that he could have had a rather nice sports car for far less aggro & probably money too. He reminds himself that he is #truly blessed# & living his #bestlife though.

Everyone is now settled in the car. Although there were fisticuffs over the calling of shotgun, Mrs DNTW’s resisted clipping child number 2 round the side of the head (what would the neighbours think?!) and fought her corner so he resorts to sitting in the back, flicking his siblings randomly to annoy them and plotting 17 different ways to disembowel his mother.

Mr DNTW’s goes to start the car. However in a bid to be more ‘eco aware’ the family have recently purchased a hybrid vehicle which is still plugged into the outdoor charge point so is going nowhere. Frankly perhaps their green credentials might have been more impressive if they had resisted the urge to procreate all together but as Mrs DNTW’s is fond of saying “that ship has long since sailed!”

Sighing with effort and exhaustion from his earlier MEN’s work and the ear-splitting levels of bickering about who is breathing whose air, who has more leg room and other such scintillating snippets of conversation, MR DNTW’s climbs out of the car & disengages the charger. Having returned, clicked the seat-belt & started the engine, Mr DNTW’s is alarmed by the frantic arm waving exhibited by his good-lady wife (she is now on her mobile phone) and wonders whether she is demonstrating one of the latest on-trend dance crazes or having a fit of the vapours, when he realises she is indicating that he has left the hatch open on the side of the car where the charger had been connected. With bad grace he exits the car again to close the hatch.

Sarcastically asking the tribe if we can go now, Mr DNTW’s realises he has left the dog poo bags in the kitchen drawer so bad-temperdly goes back into the house to retrieve. When he returns, the car smells of farts which all are blaming on the poor dogs whilst Child Number 2 sniggers.

The engine is once again switched on and the family car begins creeping down the drive. Mum has now finished her phone call and asks if anyone brought the dog lead. There is an awkward silence. Mr DNTW’s is muttering viciously & attempts to re-enter the house, having forgotten the house alarm has been set. He finally emerges complete with lead, muzzle, dog-treats, gaffer tape, rope, Stanley knife and vaguely serial killer-esque grimace.

The DNTW’s collective make it onto the road and drive to the very beautiful, natural park for their uplifting outing and commune with nature. By the time they arrive, one of the dogs has been car-sick and 2 of the children are no longer speaking. At least this means it is relatively serene…. for the time being.

The dogs are let loose from the lead & promptly spot a RIVER. This is indeed a most excellent adventure and before Mrs DNTW’s has time to enquire whether anyone remembered to pack a towel, the dogs are happily wading in the shallows, ignoring the human’s instructions and proving that the doggy obedience training classes they attended really were a waste of time. Mum is reminded that there is NO SUCH thing as a BAD DOG only a BAD OWNER. She also reminds herself that since she failed dismally to train the children, it is hardly surprising that the dogs are feral and witless too.

Not THE river but a fab great big puddle anyway!

After 5 minutes of walking, child number 2 moans that he has had too much fresh air, he is hungry, he is thirsty, he is tired and he doesn’t understand why he had to leave all his bl**dy gadgets in the car, especially as all of nature is just 💩.

Child number 1 is as excitable as the throughly bedraggled and soaking dogs and has been reminded by his father that if he too enters the river, he will have to walk home. In his underpants.

Child 3 steps in something unpleasant. So does Child 4. There is much wailing; not just by Mum. The wheelchair wheels are also covered. Dad begins to wonder if nature is taking the proverbial. The dogs, now muddy as well as wet, debate rolling in the thing that their humans seem to be covered in. It might be fox 💩 which is definitely a favourite.

Child 2 asks whether he can buy a drink at the shops. And an ice-cream. Mum tuts and reminds him they are “socially distancing” and will not be frequenting the shops, especially as this does not constitute essential supplies. She retreats when he withers her with laser-eyes.

Child 2 asks if they have at least bought a picnic with jam sandwiches and slabs of cake, plus fizzy pop since this is what all good books detail as “essential” picnic food stuffs. He is unamused when Mum explains that the daily exercise allowance rules expressly forbids such tomfoolery in the time’s of the “C” apocalypse 🦠

The walk continues, punctuated by Mum’s squeals of delight that she has spotted a white flower, a yellow one & a big, twiggy-blossom-covered bush. Unfortunately, despite balancing on one leg, leaning precariously at an angle and dancing widdershins round a fallen log, she has no internet coverage and is therefore unable to identify any of the pretty flora.

It is fast becoming apparent that the children are merely a hares-breath from shoving one another & possibly their parents as well, into the river. The lovely walk turns into a break-neck speed hike back to the car in an effort to get the whole farcical adventure over as quickly as possible.

All breath a sigh of relief when the car is in sight, apart from Mr DNTW’s who realises that transporting this motley crew home, will render the previous days car-valeting that he spent many hours performing and perfecting, null and void. Ah well, when he gets home, as Mrs DNTW’s has had a lovely afternoon off, she can resume educating their precious darlings whilst he gets out his stellar assortment of cleaning products and cloths, especially the very nice, soft one he found in the clean laundry pile …..

The Rare Conundrum…..

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

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

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

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

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

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

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

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

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

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

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

Furry friends

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

There was no autism diagnosed before 1830……

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

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

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

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

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

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

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

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

Thank you SWAN UK for balloons!

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

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

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

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

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

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

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

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

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

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

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

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

Planes (no trains) & automobiles…..*

*also a boat(s) but that doesn’t scan as well!

** & yes I know it’s a film title..

Bonjour mes amours!

It is the end of the 6 weeks school summer holidays (in England) and we have been lucky enough to spend 2 gloriously hot weeks in Southern France, followed by a mammoth drive to Paris, a dabble in EuroDisney and now as I sit and type, we wait expectantly to board the boat back to Blighty…. for an onwards drive back ‘oop north.’

It has been epic; in all senses of the word. I don’t know if the ‘cool’ kids still use the word epic to describe an amazing time or not but it definitely falls under that.

Equally however, as per the Oxford English Dictionary classifications, our hols could be defined as a ‘heroic/grand saga’ requiring much ‘bravery’ and a ‘long and arduous journey;’ yeah definitely all of that…

It would be fair to say that when I first mentioned our 3000 mile (return) travel plans to various medical personnel involved with our enfants horribles , there was some *slightly* nervous tittering. And it wasn’t just me doing it. 😆

Apparently taking all 4 of your offspring aged between 10-19 on such a journey borders on insanity/madness. Especially if they also happen to have some issues….

And I won’t lie, it hasn’t all been champagne (not much of that actually!) and roses.

When Mr DNTW’s informed me he had booked for us to go away way back in March, Minx and I were cooped up in GOSH, awaiting the ‘big plan.’

It seems an age ago now but at the time, we were all in need of some cheering up as it had rapidly become apparent during that stay that we were in for the long haul; that the carefully laid plans thus far had been stomped on, ripped up and had gone awry. The more cynical of us *may* have argued that the plans had never been properly drawn up in the first place but that’s a whole other story…..

So when Mr D made his triumphant announcement about the booked holiday I was rather more concerned by where he had found the magic money tree to pay for said holiday (still looking 😉) or whether he had sold my collection of shoes & handbags on e-bay to pay for it!

Through the lengthy weeks of hospital time, hospital stays and subsequent limbo, having the holiday to focus on became a shining beacon of hope and something to really look forward to.

Despite Minx and G-Man’s combined efforts to throw (surgical) spanners in the works, their procedures came and went. Healings were (are) complicated and I had to stock up on the mobile equivalent of a field hospital which brought its own issues in terms of getting everything delivered in time and space in the car

No room at the inn…the grey trunks are all medical supplies…& there’s a roof box full as well!

I didn’t even really flinch (too) much at the astronomical quotes we got for travel insurance – ranging from cheapest at £1300 to £2600!!! Actually I did; I really did…. until I cried when the most reasonable company called me back after I had phoned to give them more info (like many I suspect our family don’t fit neatly into black and white questions: is …….a wheelchair user? Well yes but not all the of the time? Apparently that’s like being ‘slightly pregnant’ where insurance companies are concerned – you either are or aren’t, no middle ground) and declared that based on the additional details I had provided, Minx was in fact uninsurable!! 🙈 I hadn’t even mentioned the words “undiagnosed” – a veritable death knell where insurance is concerned!

Eventually after much research and consulting of the oracle – ie suggestions from wise friends, we went with our bank (who already provide us with an annual standard cover automatically) and just disclosed the ins and outs of our weirds and wonderful for a slightly less eye-watering cost that covers us world wide… bargain really!

The logistics of accommodating the varying needs of a large, dysfunctional family and ensuring everyone’s needs, sleeping arrangements, well-being, not to mention enjoyment, fun, food and safety could all be achieved (& without the budget of Croesus in the process) were significant but you know #nicerproblems# to have and all that.

Given our ASD’s son’s needs for a safe place to escape when overloaded and also just generally being a teenager, (🤢) we wanted to ensure he had his own room and a space for down time. So the right, affordable accommodation was paramount.

Eldest son H is now working and we weren’t sure if he would still want to come with the ‘rents on holibobs.

Turns out however that in-spite of us lowly oldies cramping his style, an expenses paid trip to sunnier climes, very much met with his approval! Funny that….

Given H works in the travel industry on contract, getting time off/shifts swapped to accommodate a break was like something out of the Krypton Factor and so he couldn’t join us for the entire trip.

I’ve already done my proud mama-bear boasting moment on my personal FB but just in case you missed it and also, well ‘just because’ here’s a little mini pic😊

He thought he could *probably* come in the car with us. He couldn’t…..whether he wanted to or not… I flatly renounced any such suggestions. We genuinely didn’t have the seat space or rather luggage space. The car being a 7 seater was neither here nor there.

In actual fact, I can’t help feeling that he rather got the best end of the deal: no long & ardous 2 full days of driving (& boat) journey to contend with, no smelly cooped up car with fractious siblings (& even more fractured parents); merely a solo 2 hour flight in blissful air con before arriving, unflustered in Nice. Nice in Nice and all that…. 🌝🌞

I’ll spare you the ennui of a day by day, blow by blow account of the DNTW’s vacation extraordinaire (almost as enthralling as looking at other people’s holidays snaps right?! 😉) but suffice to say it wouldn’t have been an “us” holiday without hospital trips… yes that’s right. Trips plural.

Surprisingly, the child I thought most likely to test-drive the French medical system and give my school-girl French a run for its money, behaved herself.

However, I was more than slightly out of my comfort zone when having to liaise with the French emergency and medical services for 2 of the rest of the gang.

It transpires my ’comprehensive’ French knowledge of menus, food stuffs in general, encore du vin (more wine!) and where is the toilet/library phrases memorised from school weren’t terribly helpful or useful. In fact I think the alleged (possibly apocryphal) Hungarian phrase “my postillion has been struck by lightning” (in French) would have been more helpful than what I do know of the French medical terminology.

Nonetheless, I attempted my best “Franglais” and despite murdering the language of lurve, (I never really thought I would fervently wish I had studied French tenses in greater detail but turns out I was wrong) some Gallic shrugging, frantic gesticulating and resorting to google translate as well as stick drawings, I made myself (sort of) understood; enough anyway that the right areas of my children’s’ anatomies/difficulties were attended too on both occasions. I think I probably gave the medics a bit of a giggle at my expense too…. intended to ask if I could sit but actually suggested I was a plate… I blame too much sun, shock & being very tired for that one and anyway, ‘assayez’ and ‘assiete’ are quite similar 🤔

Fortunately it transpires that the words for ‘jejunostomy’ and ‘autism’ in French are essentially much the same, although they sound decidedly more exotic and sexy en francaise. Pathological demand avoidance and sensory processing disorder don’t however seem to translate…. 🤷🏻‍♀️

In any event the care we received from our European brethren was par excellence, albeit if I hadn’t already appreciated our marvellous FREE at the point of use #NHS# as much as I do, I definitely would have done by the time we proceeded to the billing department.

Much like the UK, the French medical system do have a duty of care to provide emergency care irrespective of your ability to pay but they are VERY quick to demand your passport & health document details and even if you possess an EHIC ( https://www.nhs.uk/using-the-nhs/healthcare-abroad/apply-for-a-free-ehic-european-health-insurance-card/) you may find you are presented with a bill immediately.

It does however have to be said that for the care we received – ambulance trip by 3 emergency personnel, urgent care access, paediatric emergency Doctor consult, 4 xrays, resulting antibiotics, wound care and dressings – the resulting €92 bill was very reasonable… and perhaps something that given the dire status of our health system and the amount of “health tourism” that seems prevalent in our country, something that needs further consideration in good ole Blighty.

We didn’t get presented with a bill for our “Second day out with the emergency services” away day when we checked out; maybe it was my presence of mind to thrust the EHIC document straight at them BEFORE actual treatment took place or maybe due to the comprehensive nature of tests that were required, they took pity and felt presenting me with an eye-watering invoice might also necessitate an ECG of my own but I am told we will receive it in the post….. I won’t hold my breath for obvious reasons!!

One bizarre observation I will venture: when sitting in French Doctor/hospital waiting rooms, it transpires it is necessary to greet all those who walk in and out with a chirpy “Bonjour” or smiley “Au revoir!” How mad is that?! They don’t do the politely British thing of ignoring each other at all costs, eyes down-cast, studying the floor and hoping no one in your immediate vicinity is Ebola carrying when they cough & splutter into a hankies. Non! There is a lot of eye contact and even some bisous (kissing) when they (presumably) know each other. Another good reason to have nothing to do with trains in this post – if they greet each other like this at the Doctors, I can’t even imagine what they get up to on locomotives – definitely not the British way!

Thankfully, the vast majority of our holiday was a break away from all things medical (aside from the standard doling out of pills, lotions, potions & generalised care the kids necessitate day to day) and whilst I wouldn’t necessarily go as far as to say it was relaxing, it has been great to enjoy time together, sun, sea, days out, pool days, ice-creams, the odd Kir-Royale 🍸 (or 3) here and there and a last hurrah with the younger 2 at DisneyLand Paris.


Pre Thunder Mountain…. there weren’t quite such good spirits after 🤣

So now we are returning home, no doubt back to an enormous pile of bills (maybe the French hospital one will have beaten us home?!) laundry and lord knows what state the house will be in as the older 2 have been home without us over the last few days…. But we have suntans and smiles and precious memories and that makes it all worthwhile

.

Comfort food or food to comfort?

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

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Who cares for the carers?

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

A picture paints a 1000 words?

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

When is an EHCP not an EHCP?

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

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

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

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

 

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

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

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

So there you have it!

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

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

EDUCATION  AndHEALTH  AndCARE

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

Okay then. Got it?

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Somewhere over the rainbow… 🌈🌈❣️

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! ❣️🌈😍🌈

(Wo)Man’s best friend ❣️

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 🌈❣️