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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 ❣️

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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

.

There’s a hole in my??….tummy,….???Dear Mummy…..

*Cute dog photobombing buckets is not the focus of this piece but who doesn’t love a dog right?

It has been feeding tube awareness week this week and as it draws to a close, it seems fitting to share a post I started back in November last year but never got around to finishing!!

Day to day life, the old ‘time-versus-needs-musts’ conundrum – sometimes I think back on that maths formula: time versus speed = distance… or some such thing – (see Dad my education wasn’t entirely wasted!) – got in the way of me actually finishing the post so it has sat in my drafts folder unpublished & unloved-(ish)

It doesn’t normally take me that long to write a post I hasten to add (although sometimes it feels like it 🙄) & when I started it, the angle I was coming from was slightly different to how this is *hopefully* going to turn out.

Anyway, to get to the nitty gritty, I have TWO tube fed children. When I look at that written down in black and white, it feels odd to reflect on, but the day to day reality of it doesn’t phase us a bit.

Don’t get me wrong – if you had told me 10 years ago when the dietician first brought up the subject of tube-feeding the Minx because her weight had dropped so far that she wasn’t even on the growth chart centiles any more, never mind a curve, that I would ever reach the stage of it being our ‘normal’ I would have laughed in your face (whilst possibly having to restrain myself from punching you!)

But with familiarity doesn’t always come contempt, more happily it also brings acceptance and if I could share one pearl of wisdom with parents the world over, especially those first timers agonising and/or struggling over bottle versus breast, when it comes down to it, FED really is best.

I’d love to claim that last pithy line as my own but I’d be lying. It’s a slogan that has been widely promoted by campaigners for both breastfeeding and bottle feeding and latterly to include ALL forms of nutrition which can only be a good thing. ❣️

It is a common myth that those who are tube fed do not or cannot eat anything orally at all. However both my children enjoy food but for a variety of reasons do not receive adequate calorie intake and/or fluids via mouth alone. During the day they will eat in the usual fashion and then overnight they are fed via their feeding tubes.

Minx also receives all fluid and medications via her tube during the day so tube feeding really is a life-line for us.

Before I continue with the original blog post I’d intended to publish, I should point out that generally, day to day management of tube feeding is surprisingly easy. It is only because my kiddos are greedy and think I have nothing better to do than run around after them both, having palpitations and ageing myself in the process that there is so much “excitement” in our lives!

Tube feeding boils down to making sure we have the correct equipment and feeds in stock at home and liaising with supply companies for home delivery on a monthly basis.

I’ve *slightly* glossed over the basic fact that obviously to be tube fed in the first place you need some kind of temporary or permanent feeding device in situ but I’m hoping that this can be taken as read. 😊

You need feed, water, syringes, and an extension set to connect between feed and the person receiving the feed.

How the feed is ultimately delivered depends on whether you are doing a bolus feed: an empty 60ml syringe connected to an extension set, then attached to the ‘tubie’ & milk poured into the syringe, slowly dripped in via gravity.

OR

Via a feeding pump on which you set the total amount of feed & then the hourly rate in millilitres that you want delivered. Press your start function and off you go.

In either method you finish the feed by flushing the extension set with a small amount of water, delivered via another syringe, to ensure you don’t block your feeding device.

There are numerous different types of feed, all carefully formulated to ensure optimum nutritional benefits and whilst not tailor made to the individual (unlike TPN which you can learn more about here ) they are designed to meet multiple dietary needs and calorific requirements. A specialist dietician works with you and your child to prescribe and then monitor their feeding progress.

A growing number of caregivers are championing blended diet which means that ‘real food’ – a meal- is carefully blended to a smooth consistency and gently syringed into the tubee: https://www.bda.uk.com/resource/the-use-of-blended-diet-with-enteral-feeding-tubes.html

I haven’t thus far been brave enough to try and have to confess that given the running around like a loon that seems to entail looking after my family and other animals it’s just another thing to add to the mania. It’s not quite as simple as liquidising a Maccie D’s whatever you are cooking and adding liquid to thin so for us, using the feeds already made up to deliver nutritional support is currently best for my children.

Anyway, back to where the original blog post was going….

When I think about action packed, fast-paced and dynamic adventure, I’m thinking more along the lines of the latest James Bond film rather than the humdrum but relentlessness of my usual every day life.

I quite like all things mundane if truth be known and as I spend so much time hustling my tribe and juggling the complexities of multiple needs and the day to day, I will happily settle for a nice cuppa and a choccie biccie (apricot danish!) curled up on the sofa with the dogs and a bit of tv social media.

I’m definitely NOT in favour of multiple phone calls from various schools or panicking that as I’m rushing towards one hospital or meeting at short notice, I’m at least one hour in the wrong direction for something else.

So one particular Monday – and as the Boomtown Rats sung so perfectly ‘I don’t like Monday’s!’ – well certainly not that particular Monday anyway – my mundane plans for the week were, to put it quaintly, challenged.

Having been a tad poorly the preceding week and exceedingly (more) busy in the last month or so, I could put it off no longer: I was faced with the leaning tower of paperwork – assorted admin sh*ttery – I had regretfully decided it needed attention to get it back in balance and prevent danger to life should it inadvertently topple over and land on canine, feline or human.

I don’t know about you but there are many, many things I would rather do than admin. I’ve often procrastinated for so long and found other ‘vitally’ important jobs that MUST be attended to ahead of the dreaded paperwork (root canal treatment, counting how many 100’s and 1000’s there are in the cake decorating tub, measuring each blade of grass in the garden and such like…) that if I had but settled into a routine of knuckling down to the task in hand, I could have had it licked in a jiffy.

However, it had reached a point that I had concerns that the pile fell off the table onto the floor, it was likely to result in a crater that a meteorite would have been proud to have caused; or knowing my luck, would have “taken out” some well intentioned visitor/healthcare professional. “Where there’s blame there’s a claim!”

As it is, I’ve become an ‘expert’ at the initial sorting stage and convinced myself that I’m really not THAT behind on my filing capabilities (should that be culpabilities?! 🤔…. mea culpa) by flicking through the ruddy stuff and then just transferring it into assorted piles around the kitchen. I like to tell myself that in this manner I am speeding up the eventual filing process by accumulating it in batches of relevance. This means that whilst I’ve certainly reduced the height of the pile, in reality I’ve just created a further 17 smaller bundles of 💩 instead.

Every single time I give in (out of necessity) and resolutely tackle this curmudgeonly task, I vow not to leave it so long next time and just do it as I go along which would save me sooooo much time and aggro in the first place; yet even as I pat myself metaphorically on the back once the task is complete and I have given myself a stern talking too, I know I’m only fooling myself and it will all pile up again until with much wailing, gnashing of teeth and such like, the whole process will begin again. Sigh.

Even I couldn’t have come up with what happened next as my ‘get out of paperwork free pass’ on the great monopoly board we call life.

My mobile rang.

Not in itself unusual. I generally field a fair number of calls each day: pharmacies, medical supply companies, occasional chat with friend & my personal favourite: “you’ve been in a car accident that wasn’t your fault” variety.

There are only a few numbers/names that strike a note of trepidation when they pop up: GOSH, no caller id (technically not a name or number but usually a medical bod or of that nature) and Minx’s school.

Because Minx’s school are awesome they normally preface a conversation with “everything’s fine” before whoever is calling elaborates on the purpose of the call. But this time, the slightly harassed, borderline panicked tone of the receptionist keyed me into the fact that all might not be tickety boo.

“Are you around, nearby at all? Not to worry you but err….there’s been an accident and er…., well…. Minx’s feeding device has been inadvertently yanked out of her stomach….and there’s bleeding….and stuff……..!!”

Ahem….do you mean the tube that was placed in theatre in July???? The one that was really tricky to do and which should have been all over & done in the blink of an eye but after she had been down for more than an hour, I knew something had gone wrong or caused problems? The one that meant they had to scope her in the end to pass because they couldn’t get the other device out??? I barely heard the yup that followed,

Pesky monarch feeding tube…. no longer in Minx’s tummy….,

Having assured the harassed receptionist I would be at school in lickety split fashion, I sped around the medical cupboards and the supplies in the garage whirling dervish style, heart pounding, feet of fury that would have impressed an Irish dancing fan.

Although there is on a ‘normal’ day only 5 minutes between our house and school, the perpetual road works that seem to have taken place along the road we live on pretty much since we bought the house 4 years ago, were in fine form. And of course red. As were the pedestrian crossing lights 500 yards from our house, then the lights on the railway bridge and the final pedestrian crossing right outside school. My language would have made a navvy blush…. & I’m pretty sure the driver of the JCB by the roadworks could lip-read…. 😳

Having made it onto school premises armed with enough medical supplies to open a mobile field hospital, I was ushered quickly to the medical room.

Lying on the floor looking very tiny & very forlorn was my gorgeous girly. A quick glance took in the pale but blotchy-red face, teary eyes, ENORMOUS white dressing secured to her midriff (think doorstop loaf of bread sized or at the very least maxi maternity sanitary pad!) GULP & then Minx’s best friend, also looking terrified and a bit blotchy as well as Minx’s 1:1 support doing her level best to seem calm,unruffled and reassuring but slightly wild of eye (think of a swan: serene on the outside, furiously kicking underneath)All eyes levelled on me & a rapid fire of voices trying to impart salient information with some urgency ensued.

Various words trickled through my conscience, none of them polite. False bravado firmly in situ, I braced myself to remove the make-shift dressing and hoped there wouldn’t be gore and intestines abounding.

I was slightly taken aback therefore to find only the teeny tiniest bit of 🩸 but nothing gushing, no horror-scenesque show and a rather sad looking little dimple where the feeding device should have been. For those on the squeamish side, rest assured, you can’t see into someone’s innards if the device has come out!

I managed to hold back the “is that it?! response and set about getting my supplies ready to replace her device. The important thing is to get something, almost anything into the empty tract ASAP.

The human body is so remarkable that it wants to heal itself and this process begins very quickly (20 mins is a bandied about phrase) so you have a short window of opportunity to keep the ‘hole’ open and replace the device used for feeding.

Prior to the new style device Minx had had inserted during theatre, I routinely replaced her mini ‘button’ at home myself every 4 to 6 months or so. It had now been over a year since I had done this and I was a little intrepid. It isn’t difficult per se, rather a bit fiddly and unwieldy as it’s made from malleable plastic and requires a surprising amount of physical pressure to secure the device properly into the intestinal tract.

I can’t speak from personal experience but from what I have gleaned, it shouldn’t hurt but can be uncomfortable – all medical professionals state that it doesn’t hurt but since in the majority of cases they don’t have personal experience either…..: anyway every button change we have ever done has been met by tears, anger, fear and a general NO response. My fellow tubie parents will likely tell you much the same.

So Minx was already a little traumatised from the previous device having been yanked out and nervous about the tract having started to close (she knows that worst case scenario this means another trip back to theatre) and fearful of me putting the new one. Smiling in a manner that suggested I had everything in control but with a heartbeat I felt sure all in the room could hear, I picked up the replacement button, sent up a heartfelt prayer and ‘popped’ the new one straight back into the hole with much more confidence than I was really feeling!

In first time! Boom! I couldn’t even do a happy dance or fist bump to celebrate as I had to maintain my air of poise and equilibrium (not often those 2 words are used in connection with me!) I quickly filled the little balloon that holds the device securely in place with water from another syringe, checked all was secure and that was pretty much that!

Relieved smiles and cuddles abounded and as it was nearly the end of the school day, it was agreed Minx could come home. I smugly tidied away my bits and bobs and had to play it down as all in a days work to the 1:1 (I had to at least seem I knew what I was doing right?!) when my phone rang again…. no caller ID…..

“Mrs DNTW’s? It’s the school nurse here from…….. Nothing to panic about but G-man’s been involved in an incident and there’s a problem with his feeding button, could you get here as soon as possible please….”

Resisting the urge to yell FML loudly, I hot-footed it out of the building, Minx droning in my ear about hadn’t she been brave and good and didn’t she deserve a lovely treat of some sort???

Anyway, I managed to sort G out as well, then arrived home hoping it was time for a gin or three but resolute to the fact that the paperwork hasn’t been sorted, the dinner wouldn’t cook itself and the next days medications still needed doing….

So there you have it. Tube feeding is awesome and easy and nothing to worry about…. it’s just the company I keep and the circus I’m (allegedly) ring master of that means there’s never a dull moment…… 😊🤣

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

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

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

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

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

I’ve been thinking…..”

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

In the blink of an eye(roll)…

It’s arrived. I always knew this day would come but I don’t think I expected it to be so soon. 😫 Or so sudden.

It probably wasn’t – that sudden – but it feels smack you-round-the-face-excruciatingly-so-upon me. Sigh.

I thought I had years to go, many more eye-rolls to bear (how exactly can one, fairly diminutive 10 year old convey such soul-churning disdain in a mere upward flick of one perfect eye brow and simultaneous roll of said eye-balls?!) but in the way of the cliche, time has sped up & my ‘littlest’ is not so…. well ‘littlest’ I guess. However petite she may be in stature, make no bones, this girl is growing up. F.A.S.T.

Of course as parents that’s what we want. ❣️ Of course it should be the natural progression of life and indeed, I am starkly reminded to be humbled and grateful in contrast to far too many of those we have known along the way whose children will forever remain but 4 or 5 or X amount of years young.

I’m full to the brim of love that Minx is following in the trajectory of ‘tween’ girls the world over, especially given the at times mixed prognosis of her youngest years and some of the curve-balls she has thrown at us latterly. I think really she just wants to keep us on our toes, never a dull moment and all that. But at times: whoosh, a sucker punch to the gut.

I digress. What has ‘come’ that I alluded to at the beginning of my rambling?

ATTITUDE!

In spades. Big time.

I shouldn’t really be surprised I suppose. She comes from a long line of family members who know how to speak for themselves, fight their corner & generally not take ‘no’ as a complete sentence. (No finger-pointing please!)

Secretly a (very) teeny tiny part of me is enjoying this new territory, the minefield to navigate of what she will wear, what is sartorially appropriate (or not, depending on which one of us you are speaking to!) the determination to do it (or not) her way. But by Lordy, it is tiring at times! And the girl can argue….

Minx embracing “Break The Rules Day” at school recently

Gone is the elfin child so pretty in a plethora of pink & purple, ribbons and sequins , frothy trappings of Monsoon, Accessorize et al. Replaced by a love of glitter but of the sparkly eye-make up variety – the contents of MAC shop, Urban Decay make up or a bath-bomb (or 5) Her clothing choices now consist of darker hues, bigger and baggier, less ‘girly’ more quirky and sassy.

When she said she wanted to ‘go to the theatre in tattoos’ this wasn’t quite what I had in mind….

In place of the (long past) nursery rhymes, Disney tunes and Nickelodeon, a fascination with Billie Eilish, weird-pranking You-tube families, LD shadow Lady and Roblox (parental controls on) has emerged. She spends hours watching make up demonstrations or bizarre things you can make out of recycling crisp packets, how to make tiny working copies of day to day stationary – one inch perfect replica glue stick anyone?! 🤔

In a rehash of my Dad asking me what on earth I could possibly need to speak to my school friends so urgently about given I’d only been out of school for an hour and off the school bus for 10 minutes max when I rushed in from school to pick up the phone, Minx /bounds (*slightly* too strong a word . usually knackered after school but you get the picture) straight to her bedroom, door firmly shut before she giggles away to her friends via face-time or school group chat. The peels of laughter, the loud shushing and use of code-words (and shouting) if someone inadvertently enters her room without knocking (I’m looking at you here Big Brother G!) as well as the general disarray of her bedroom (despite my best efforts) all serve as reminders that my affectionately known little Millie Minx is maturing.

I’ll admit to slight trepidation, a bit of panic. I’m not ready for my little girl not to want me or need me. I’m not ready to stop kissing the top of her head & inhaling that fresh-from-a-bath-scent before she goes to bed (or the sweet-not yet-sweaty-smell when she wakes of a morning) I like still reading bed time stories, the books I loved as a child.

Since Minx is the youngest of our children and there are most definitely NO plans to have any more, I’m unsure whether my reluctance (fears?) stems from that letting go of the ‘baby’ stage or whether it’s down to the medical issues and difficulties she has faced (& will continue to) in the years to date; somewhere between the 2, I suspect.

But importantly, most importantly, she is ready. Wanting to strike out on her own, arguing it’s fine to go out in just a t-shirt & cropped leggings despite it being single figure temps outside (Mum: I’m sorry I remember us having those arguments when I was her age! 😫) her Dad asking incredulously if we had actually paid good money for the jeans with the rips in and why we couldn’t just slash some of her other things with an artfully wielded pair of scissors.

I’m reminded of that beautifully written, perfectly summed up quote from Nanny McPhee but I think it’s rather more for my own benefit now than hers:

#Parenting Advice 101#

And without going over all Darwinian/survival of the fittest, over the years I’ve been privileged to be a mum (& I’ll be honest, there are many many moments it hasn’t felt like such a privilege!) I’ve come to the conclusion that the very best you can hope for if you have done a reasonable job of parenting is that your child(ren) will have confidence enough – ideally in leaps & bounds – in their own abilities to strike out on their own; that they will seek to carve their own way, flee the nest to live their best lives and all that jazz. That the mistakes they will inevitably make are small enough to learn from but not big enough to endanger/hurt or ruin life (theirs or another’s) and that is more than enough **

Offspring however, if you are ever reading this: a visit to your old mum & dad in their dotage, the occasional cup of tea and a desire to spend some time in our company that doesn’t involve gifting you data/food/money/combinations thereof , wouldn’t go amiss….

*Either that or you’ve fu#*ed it up so badly, they have fled for the hills at the first opportunity. Cold comfort. You’re welcome. 😉

Child…..abuse… /of power?

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

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

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

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

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

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

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

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

It is no comfort (at the moment) that our barrister says this is the best outcome we could have hoped for; that by instructing the Judge that there is no case, she allowed the application to be withdrawn. He explained the fact they did not withdraw prior to today meant they had to save face and thus we still had to appear in front of the Judge for her to formally dismiss the proceedings …. apparently….but it doesn’t feel like we’ve been cleared. Had our chance to challenge why they brought such an erroneous case.

I think I’ve been too hooked on tv court dramas with all the vim and vigour (vinegar as far as my feelings go!) and the fire and brimstone revealing that #justice# has been done.

I suppose we wanted retribution but it’s not in the redress of this particular court to address the, for want of a better word, ‘suffering’ we have experienced. Of course there will be some legal bod out there who would happily pursue a case on our behalf (💷💷💷 kerching) but that will cost us funds we don’t have and for what purpose? Will it bring about closure? Will it heal our grievances? I guess we will never know. And I worry there will be always be those people who assume the “no smoke without fire” philosophy thus believing we are indeed at least partially at fault.

Those of you who have followed my blog/know us personally, will be aware that we have 4 children. All with extra needs and/or health conditions.

For the last 3 years we have been in dispute with our local authority about the most appropriate way of meeting the needs of our high-functioning autistic son.

It was agreed after multiple interventions by varying services, trialing ever more desperate adaptations to “fix” things in mainstream schooling and yet on-going repetitive, risk-taking behaviours, that our autistic son needed an education health care plan (EHCP) and specialist educational placement.

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

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

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

Let me be clear, this is not an attempt in any way to curry admiration or pity on my part. It is just a fact.

Most children thrive with a routine – the reassurance of predictable, timely, boring regularity. It is generally recognised this is even more preferable for autistic individuals.

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

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

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

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

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

I’ll spare you all the intricacies (if you want to know more, I’ve covered this in other blogs) but on grounds of costs being incompatible with public expenditure we were refused a placement for our son at an autism specific residential school which on a Monday-Friday basis.

By this point, both ourselves and our son were desperate. And exhausted and demoralised.

We needed a complete turn about from the impossibly, destructive situation we seemed perpetually quagmired in and we engaged legal representation in order to proceed to an educational tribunal.

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

The fall out on our other children was immense and still impacts them in a variety of ways. Mr DNTW’s too.

With him having to hold down a job and be soul parent, he called in favours left, right and centre to see to the care needs and day-to-day cover for our children. We could not afford for him to take unpaid leave.

Indeed my psychologist refused to allow me to leave hospital until social care had provided a medium to long term plan to accommodate our son.

Whilst it nearly broke our hearts to proceed as outlined, we hoped that by way of the courts we would eventually secure an appropriate residential school placement which would negate the need for a foster placement.

Even during those darkest of days the response from social services was how soon can we return your son home? They simply weren’t interested in the wider needs of us all and in working

I will never forget reading an article that described how parents of children with autism show similar levels of stress to that experienced by combat soldiers. I wish I could recall it to link to!

We had anticipated time apart would paradoxically strengthen the bonds between us (absence makes the heart grow fonder and all that) by giving us the time and space to mentally recharge our batteries as it were. Whilst he is loved unconditionally, autism is a complex disability to navigate and parent without some ‘down’time,

So we dared to ask for help from our local authority under the guise of children’s social care. We admitted we couldn’t do it on our own.

Instead of being lauded for our honesty, recognised that we were doing the best job we possibly could under difficult circumstances, we were left for an unreasonable length of time floundering and having to negotiate an appeals system to try and secure our son a residential school placement.

with us

3am Eternal….

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

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

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

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

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

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

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

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

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