A work in…. progress??

I’ve been truly over-whelmed and grateful for all the messages, emails, texts, visits and all round offers of support in the last few weeks. 

If ever I needed a kick in the backside and a reminder why I am actually privileged beyond all doubt, the last 9 weeks have galvanised that thought process entirely.

In the most utterly dark, dismal and scary places I’ve inhabited over the last few months (both literally and figueratively) there have been sharply crystallised rays of light, a beacon if you want lighting the way and guiding me in the darkness. Cliched? Maybe. True? Certainly, at least for me.

It is well documented that the very worst of times can bring out the very best of people (I refuse entirely to dwell on the paradox that you may also see the utter waste of inhumanity and degradation) and from those that have stepped in at short notice to ferry the kids about, entertain them, help hubby in anyway possible, iron, wash, cook, clean, shop; family, friends, acquaintances newly made (rapidly turning into firm friendships)and friends of old both in the wider world and closer to home in Yorkshire, I am humbled and grateful.

There is so much I want to say about our “bigger picture,” what led me to the depths but for legal reasons I can’t. I’m sorry if that sounds a bit obtuse (I hate those annoying fb posts where people say something really leading, enough to pique your interest and then leave you dangling  – probably because I’m nosy!!) but at this point in time, I do not wish to jeopardise our issues going forward (again, note the optimism; I cannot entertain the thought that things could crumble and leave us wading and wallowing in the ūüí©again….) Hopefully in due course I will be able to elaborate further and end with “and they all lived happy ever after” type scenario.

For now, and because frankly I’ve been a bit rubbish in the last few weeks at replying to people, I thought I’d try and sum things up a little – I guess this is the blog equivalent of either the (depending on your perspective!!) loved or loathed round-robin Christmas letter.

I think I mentioned a few blog posts ago that I was struggling to answer how I was feeling. I wanted to say what people wanted to hear. I know that with the best of intentions those closest wanted to hear “I’m fine” and see a steely grin of grit and determination. In truth, I was more of a soggy mess and I haven’t dared wear mascara in a very long time (way before my admittance) as even waterproof would have given in to the torrents of tears. 

Fast forward to present day, I am testing out a proper reply to the question of “how are you?” During some points of some days I could honestly answer that question with “I’m fine, good even!” And I wouldn’t be lying. Other days, other moments it would be a more honest answer of “not so good” and you may end up with a wet shoulder if you proffer it for me to cry on.

I haven’t started ‘proper’ therapy in here as my team believe that the best place for that is once I’m home. So for now, I guess the best answer is I’m a work in progress. But an evolving one, striving to move forward and embrace myself imposed motto: if the glass is half empty, there’s always more room for wine! 

Of course I’ve barely had a drop since I started on this road! Obviously you can’t on the ward but even on the occasions I’ve been out for meals or gone home for a night or two, I’ve only had a small glass, mindful that alcohol is both a depressant and doesn’t go well with hard core medication. (NB – I’ve checked with staff and I can have a little glass if I want!!)

I’ve not had huge epiphanies whilst I’ve been an in-mate but I have had moments of clarity and realisation. I’ve absorbed some of the comments from the psych team; turned & twisted them, then embraced them even though they do not always sit comfortably with me. Prickly truths and all that.

I’ve been shocked at times how devious my thought process has become in the months that I hit my all time low. Moments where I feel almost as if I’m an observer of myself. Distanced and looking on at the crazy woman who pontificates how she could sneak tablets and other items to harm myself back into the  hospital, avoiding the inevitable bag searches (FYI, I haven’t, mainly because I’m more worried about other patients who may be even more fragile than I and the potential dangers I could put them in if they went through my stuff) when I return to the ward. Then appalled as my mouth seems to disconnect from my brain and share these thoughts with the psych team. The brain is screaming “shut your mouth!!!!”at full volume whilst the gob goes spouting on and I tell them the numerous and awful ways I could do various things. For obvious reasons I won’t elaborate on those. I’m told however by the team that the fact I’ve been honest with them is a good sign so I’ll hold on that as a win. Lisa 1…. depression/anxiety,/deviousness well if not exactly a 0, at least not wholly defining me.

I know I have a long way to go. I’m not naive enough to think that once I go home everything will be magically sorted and I can bounce back, go straight into full on mode as I had been doing for so many years. I am a realist. And I’m aware that being back at home will bring the stresses and strains of the real world and I may have blips. But that’s ok. With appropriate support, therapy and remembering not to run before I can walk (I’ve never been a running fan anyway unless it involved shoe sales or last orders) I’ve begun to accept that I can regroup, rebuild and restablish myself. 

I know inevitably there will be days I can’t listen to the salient, sage advice – be that by necessity of stuff HAVING to be done (& there is a definite difference in what HAS to be done and what I would LIKE to accomplish in an ideal world) for with a medically complex child and one with autism there are always needs that are imperative and have to be addressed. But I also will acknowledge that if I don’t unload the dishwasher there and then, it’s unlikely to be a deal breaker, the world will not stop turning and the biggest issue I might face as a result is no clean tea spoons (where do they all go? Along with Tupperware lids and single socks that I know went into the machine in pairs!) 

I’m a do-er by nature. It doesn’t sit easy with me to kick back, leave things to others (control issues? ūü§Ē) and not organise, create, or be involved.

Guilt even now is a constant companion. Guilt knowing that Martin is (awesomely) juggling a stressful job, home, kids etc; guilt that those around me are having to pick up the slack; guilt that my loved ones are worried about me, my frame of mind and whether I can cope; guilt when Minx cries after a lovely weekend spent together but I have to return to the hospital. Guilt that I can’t read bed time stories or provide in person encouragement to our son doing A-levels. Enormous, crushing, at times all encompassing, over powering guilt that I can’t wave a wand and enable our autistic child to access not just what he deserves but needs in order to meet his potential.  Even guilt that the poor dog is on his own for large parts of the day if no one is able to be at home with him.

However, guilt is not my friend and it is self destructive. So instead I choose to remember that I have made it out and about, home at times,  walked the dog, (even if it’s been late in the day) cuddled my children, kissed tears, sore knees and sent messages, spoken words of support and suggestions of help and for now that is enough. 

I am after all a work in progress …. 

“There are known knowns”…

There are known knowns; there are things we know we know. We also know there are known unknowns; that is to say we know there are some things we do not know. But there are also unknown unknowns ‚Äď the ones we don’t know we don’t know. ” 

Credit: Secretary of Defence Feb 2002 – Donald Rumsfeld 

Why the above quip which I’ve shortened to meet my own needs? Well as a very different Donald (to the tangoed-recently US elected one) said it so well…. I’ll explain further down…. hopefully I’ve peaked your intrigue and you will keep reading! 

Friday 28th April 2017 is a day to celebrate for Undiagnosed Children in association with SWAN UK who fall under the umbrella group of the Genetic Alliance.

Not only is this a fabulous day to celebrate all things unknown, rare, unique and downright puzzling, (with our children, not all the wonders of the world!!)  it’s a day to raise awareness amongst friends, family, professionals in any area of the medical field and wider still. 

Most importantly: our big ambition this year – to raise awareness, provide support and a place to feel at home for all those parents/Carers who are bringing up a child without a medical diagnosis. 

To quote directly from SWAN UK:

Our Big Ambition is that all families who have a child affected by a syndrome without a name get the support they need, when they need it. We want it recognised that being ‚Äėundiagnosed‚Äô is not always a temporary stage; the genetic cause of some conditions may never be known. We want every child and young adult with a syndrome without a name to receive high-quality coordinated care and support both in hospital and at home.

Surprisingly and sadly, there are still families out there who aren’t aware of the invaluable work and support that SWAN UK can offer them. 

In some cases, SWAN UK has literally thrown out a lifeline to desparately tired, lonely, scared and isolated people who feel they have nowhere else to turn. And of note, SWAN UK is the only support group in the UK dedicated to families raising children without a diagnosis – we can offer 24 hour support (give or take) since whilst all our SWAN children have varying difficulties and concerns, a large majority seem to share the view that sleep is the work of the devil so you can often find a parent on line offering or asking for support or just catching up on info they haven’t had time to digest during the day!  

Of course, raising funds to support the emmense work load of SWAN UK is also really important but I’ll get on to that in a bit.

Those of you who have followed my blog for a while will probably be able to quote back many of the statistics I’m about to blurt out; & yes I may have banged on about this one way or another every year for the past few in connection with celebrating Undiagnosed Day (and often times between) but you dear reader, even if you are personally unaffected will likely know a family with an undiagnosed child or will come across one (or more!) in the future. 

Just maybe you can be the one to offer someone out there light in the darkness and point them in the right direction to access the crucial support and signposting they need and deserve, particularly in the early days of their journey be that before birth when pre-natal scans pick up on possible genetic issues, those early days post birth when it becomes obvious that something is not quite right with their much longed for, hugely anticipated tiny baby or as in other cases when a seemingly typically developing child begins to fall behind their peers or shows regressive behaviour.  

From personal experience I know how tumultuous those feelings can be; how overwhelming. Just like the (approximately) 6000 children born in the U.K. each year, our daughter has a Syndrome Without A Name. 

My little Minx (not so little now, a whole 8 years old!) was born almost at term and despite a complicated pregnancy, seemed utterly perfect to us in every way. She passed her paediatric discharge – if awards were given, hers would have been gold (proudly boasting mother) but she really was the cherry on top of our cake. 

A little girl after our amazing 3 boys (not one of which we would have changed at all; we were never “trying” for a girl and personally, unless there is a very good genetic reason for sex selection, it’s a step too far for me) but it was so exciting to experience, even from the very first day, the differences of having a bundle of the female persuasion – nappy changing = no peeing in the eye moments as my dear boys got me so many times over the years for a start… although cleaning poop out the girly bits was…. daunting…. I’ll stop there rather than make anyone think too vividly. 

Our first few weeks in amongst the haze of feeding, washing, attempting to sleep when the baby slept – (i.e. never) and generally fight our way through the sea of all things pink that friends & family far and wide sent to us (yes I know it’s a stereotype and girls, for that matter boys, can wear any colour but did you really think with Minx being the first great/gran/daughter after 3 boys she wasn’t going to be in dresses and frills and shades of pale pink, lilac and basically looking like an explosion in a pink workshop?!) 

However, as a 4th time Mum I had a serious case of “the niggles” even in the very early days of the Minx having been brought home….she cried virtually constantly (but not like a collicy baby, I’d had 2 of those) she started feeding well but would then cough, choke, delatch and occasionally snort milk out of her nose (very different to her greedy brothers who had trouble latching initially but would soon settle into rhythmical suckling until they had refuelled) and she held her head/neck/arms so awkwardly.

I’ll spare you the VERY long story that brought me to this part of our journey as best I can (if you would like to, you can read some of my earlier blog posts and discover more about our journey to date).

Suffice to say mother’s intuition is a powerful thing and over the years we have collected a myriad of teams, specialists, equipment and partial labels to encapture Minx’s difficulties but like that dastardly elusive last piece of the jigsaw puzzle, we don’t have the complete picture. In fact as it stands at the moment we don’t even have the picture on the box – frustrating & like working in the dark. 

I can give you some examples of her varying issues:

  1. Upper limb arthrogryposis
  2. Lower limb hypermobility
  3. Blood sugar instability
  4. Possible growth issues
  5. Gastro esophogeal reflux disease
  6. Dysmotility of the entire gut/colon/bowel
  7. Low heart rate when sleeping
  8. Pain (in the gut & bowel
  9. Chronic constipation requiring stoma use to manage
  10. Congenital myopathy
  11. Neurogenic issues
  12. Severe feeding difficulties necessitating gastrostomy feeding tube to give specialised milk during the day & overnight
  13. Swallowing difficulties
  14. Muscle weakness and fatigue
  15. Food allergies….

Have I forgotten anything? More than likely! We see that many specialists and consultants in 3 different hospitals and use multiple pieces of medical equipment, aides, pharmaceuticals and so on; sometimes it’s hard to keep track!

Minx has a wheelchair, a stair lift and  bath lift for when she’s too tired/unable to get in/up/out or mobilise for herself. And who could forget the amazing self-cleaning toilet with padded seat and washer/dryer function, complete with arm rests, feet support and a medical pillow for comfort whilst “performing”. Honestly, it truly is a marvel to behold… and I’m told in Japan, it’s particularly de rigeur to own a similar commode, albeit not usually for medical purposes.

So back to Donald Rumsfeld’s now infamous quote, which yes, I’ll admit I have chopped up a bit to suit my own purposes, there are lots of things we know about the Minx but there are equally lots of things that we know we don’t know. The unknown unknowns if you will.

So many of her issues fit neatly together and others frustratingly don’t. As has been much muttered by her neuromuscular consult (complete with wringing of hands) “but we just don’t SEE this presentation of neurogenic and myopathic symptoms and difficulties”

Except of course you do, because Minx presents with them. So it’s back to the drawing board, tearing up the medical text books and much head scratching – although these days it’s a bit more technical than that and there are some fantastic genetic studies that we have been invited to take part in. Largely, down to information provided by SWAN UK, I knew which ones might help us get some answers and who to approach to see if we could get on to them too. If you want, you can learn more here: https://www.ddduk.org 

Also: the 100,000 genome project https://www.genomicsengland.co.uk/the-100000-genomes-project/

Minx has been tested over the years for various myasthenia genes, myopathies and so on but the above 2 studies give us our best shot of learning what Minx’s overall condition is. 

To some extent, it’s unlikely that having a formal diagnosis will change much in terms of treating Amelia and her difficulties. Unless it’s something that a very specific medication or therapy can improve, then it’s extremely unlikely that what she has is curable – in our life time and maybe even hers. But it does give hope for the future, for gene therapy, for others following our pathway and for siblings to make informed choices in deciding whether they want to know if they are carriers or affected by the particular genetic fault. It offers hope, choices, plans and preparation. Maybe far off for now but gaining ground every day. 

It should be noted that our family wouldn’t change a thing about our feisty little Minx (except maybe her stealing my MAC lip gloss & suede boots) Whilst we all wish she didn’t have pain, surgeries, physical weakness and so on, some of those exact difficulties have helped shape the amazing, bright, sparky and self assured young lady she is becoming, not to mention the dab hand she is becoming on using technology to help her in every day life – I-pads, tablets, lap tops and PC’s are increasingly being utilised to assist her at school and in daily life. 

Maybe my point about not changing her sounds odd? Most assuredly, I wish she and many of her SWAN UK comrades didn’t have to go through the dark, trying, and in too many cases, tragic outcomes I have witnessed over the years. 

There is something fundamentally, inherently wrong about a parent out living their child. It is not the natural order or design of this world and is beyond cruel to far too many of my contemporaries, friends, people I have formed and shared extra special bonds with over the years. Some I have only ever had the pleasure of meeting virtually through our SWAN UK on line community, others at the plethora of events that SWAN UK hold every year to give a glow to our special needs kids, their oft neglected siblings and exhausted but exultant parents who meet for regular coffees or stay and play type events. https://m.facebook.com/SWANchildrenUK/ 

Please do go and have a look at our website for more info about the group and what we can offer https://www.undiagnosed.org.uk/about-us/

So what can you personally do you may wander? Well, you could share this blog post on various forms of social media, change your profile picture like I have done to raise awareness of SWAN UK and Undiagnosed Children’s Day – I’m happy for my profile picture to be shared but please check with other people before sharing their stories or pics. Get tweeting far and wide – celebs, politicians, the rich and famous to raise awareness (and maybe even ask them ever so cheekily for some cold hard cash!) 

Get Undiagnosed Day trending (I’ll pretend I vaguely understand all these terms in connection with social media) because I know that one is important on twitter but I’m not too hot on all things tech. To those of you who are, I salute you – help this Luddite out and get sharing far and wide.

As well as raising awareness, WE WANT YOUR MONEY!! 

For more info, ways to donate etc go to the SWAN UK page or public face book page. You can donate via text/post/online or even fund raise for us directly! 

If you would like to make a one off donation you can also do this via Just Giving or Virgin Money Giving or text SWAN11 plus the amount (up to £10) to 70070

Online Donations You can donate through our page on Virgin Giving or Just Giving. If you are a UK tax payer don’t forget to tick ‘Gift Aid’ as this scheme allows us to claim tax back on your donation, making every ¬£1 you donate worth ¬£1.25.

Little heroes can fulfill big dreams and ambitions with your support! 

Thank you ūüėė

What a fu**in* liberty…..

I am cross!!img_1256

My nearest and dearest (and not so nearest/dearest!) will attest to the fact that this is not a good state to find me in.

I have been chatting to my friend Mrs Jones. Like most parents, she is lion-hearted when it comes to her children and their needs; her own.. not so much…. but cross her children or deny them their rights and be prepared to unleash a hell-beast…or at the very least a woman not to be taken lightly.

So what is my current vexation? Honestly, it’s more of a case where to start right now…. I could witter on about Brexit or The Donald; I could bemoan the ever-increasing fuel prices, electricity hike and the weather (how terribly British) but right now, it’s a little more ego-centric.

In the words of Catherine Tate’s Nan character (link below just in case you need a quick reference point)  https://en.wikipedia.org/wiki/Joannie_Taylor “What a fu**in* liberty!!!!” I’m also quite partial to her teenager Lauren Cooper’s “ain’t even bovvered” except right now I am. Very.

Mrs J has been trying to sort out school for her son James since main stream education has been such a spectacular fail, in spite of the school doing their utmost to support him and his parents.

James has been out of full-time education since April last year. He’s a bright boy: capable, intelligent, insightful (as far as teenage boys, especially high functioning autistic ones go)  but the intensity of secondary school, the 2000 odd students, the constant moving from class to class for different lessons, the noise of bells ringing, corridor chatter and the hustle and bustle of every day life in a large building are too much, too over-whelming for his sensory processing. The added influx of teenage hormones and puberty have made a difficult transition from primary school to secondary impossible.

James is currently year 9 but in order to reduce his stress levels, anxiety and depression and thereby the impact on his home life, he has only been doing core subjects of English, Maths and Science since last year; and to be honest, even getting him to attend those lessons is more miss than hit. Essentially his current school are baby-sitting him to ensure he maintains some form of eduction in the very loosest of terms.

Of course Mrs Jones is beside herself with worry; What will happen to James in the future? Will he be able to sit GCSE’S and if so, since he has missed so much schooling, how will he catch up to achieve passable results? Will he be able to continue to some form of higher education or vocational course? Whilst Mrs J is under no illusions that exam results are not the be all and end all in life, they do open doors for her son’s future.

Potential college courses, employers etc will need some kind of yard stick to measure against when James seeks independence later in life. For his own self-worth, self-esteem and satisfaction James will need to reach some kind of bench mark, especially with his contemporaries seeking careers, opportunities and  embracing whatever life throws at them. James will need to prove his capabilities.

Although his 13-year-old self is quite happy to spend the majority of his time on the X-Box and achieving “Flawless” on Destiny (neither Mrs J or I are quite sure what the means but we know it makes James inordinately happy!!) James will need to exist in a society that is dictated by finances or the lack thereof. Frankly with the current economic state of the UK and its benefits system, who knows whether there will be anything available to support those in need? Not to mention, James should be a valued, contributing member of the work force; he is more than capable, at least academically, of achieving but his needs must be met in a very specific educational environment.

James now has an EHCP – Education and Health Care Plan – https://www.gov.uk/children-with-special-educational-needs/extra-SEN-help but frustratingly, in an already lengthy and drawn out process, Mrs J has reached a stale-mate with the local authority.

Back in September 2016, after assessing information from James’s existing school, James himself, his parents, CAMHs, Family support Team, Social Care and lord knows who else, a dedicated panel called APP (I can’t recall what the initials stand for) met to consider all the relevant details surrounding James education and what best meets his needs.

It was agreed that James needs to be educated in a specialist provision, preferably one that specialises in high functioning autism and social, emotional and behavioral needs. Both Social Care and CAMHs stated that a facility offering a residential setting would be in the best interests of James and his family to provide all parties with some form of consistency, routine and  respite.

Whilst neither Mr or Mrs J had specifically entertained the idea of a residential placement, nor was it something they had ever wanted for any of their children (despite growing up with a lust and insatiable appetite for Enid Blyton’s Malory Towers and St Clare’s tales, boarding school and the likes there of was something of anathema to Mrs J in reality) James struggles with the disruption that comes as part of having a medically complex sibling and no immediate family as a support network in times of difficulty or crisis.  Therefore a residential setting would provide consistency and routine, particularly at an already stressful times for James and his wider family.

The local education authority (LEA) advised Mrs J to look at schools of their choice, having agreed that there was nothing within county that could meet James’s needs. Whilst in theory this sounds fantastic, an open invitation to consider whatever was out there, it was actually quite difficult to know where to start. If you type “autism specialist schools in the UK” into google (other search engines are available!) you get more than 895,000 results.

Whilst you can narrow your search criteria discounting schools that focus on traditional autism rather than the more recently labelled “high functioning” (an expression I hate passionately since it does such a disservice to ANYONE on the autistic spectrum for a myriad of reasons) it is still akin to throwing a dart at a map of the UK and hoping it lands somewhere favourable.

Panel did suggest 3 schools to view and paperwork was duly submitted to these establishments by the LEA but very quickly 2 out of the 3 came back to advise they could not meet need.

For obvious reasons, the LEA, CAMHS etc are not allowed to “recommend” schools, although they can give suggestions of where to look and duly did so. Mrs J also consulted the oracle that is Facebook on various autism support sites, special needs etc. After all, real-life experiences of other parents is invaluable.

SENDIASS   (http://www.sendiassleicester.org.uk/what-sendiass) suggested a web-site that offers a sort of “Pick ‘n’ Mix” (far less exciting than the sweetie stands in the fondly remembered Woolworths but I digress) option to schooling – type in your child’s needs/issues/support required and up pops a list of potential schools that *may*be suitable. Even so, this illicted over 200 establishments all over the country and with the constraints of time, family life, cost of getting there and physical distance, it was quite impossible to visit all on the list.

The Jones family decided to narrow down the search criteria to schools within a 2 hour distance and based on recommendations from people/parents who had actually utilised the facilities to make the task more manageable. They also discussed them with the assessment officer appointed by county.

After having previously had their fingers burned by a school they had submitted an application to detailing their sons needs, warts and all and upon visiting the Headmaster who had initially welcomed James warmly, promised he could help him achieve his potential and meet his needs, then when the LEA submitted formal paperwork being told  no, the Jones’s decided they would only visit schools after paperwork had been sent by the LEA  if they felt able to offer a placement, (subject to meeting James in person of course).

Needless to say, this entire process took considerable time but eventually various professionals indicated that subject to dotting the i’s and crossing the t’s, James would be in placement before Christmas 2016!! However, best laid plans and all that…schools have 15 statutory days to respond to requests and as it happened, all replies exceeded the given time scale.

This period of time coincided with James’s sister having surgery in London and her recovery was delayed by infection and some additional complications so Mrs J spent considerable time away from the family and then trying to get things back on track when they returned home.

By this point, Christmas was fast approaching and once replies had been received from the various schools, it was decided to schedule visits for the first week of January 2017. Things were looking up!

Several visits later, the Jones’s had found 2 possible schools, one of which they felt particularly would be in their son’s best interests and both schools had capacity. The Headmaster of the preferred option came to the house together with an educational psychologist to speak to James and review his needs and offered him a place unconditionally.

James was taken to view both establishments and watching him relax, feel excitement, understanding and a desire to partake was all the affirmation his parents needed to know they had found the appropriate placements. The fact that the LEA had also named these establishments as possibilities felt like a sign and so the Jones’s were sure they were on the home stretch and there was a frisson of excitement and hope that James would be in placement before February half term.

Having previously been told that their case would be taken to an interim panel due to the length of time events had been ongoing, the LEA assessment officer came back to advise that her manager had declined to pursue this with the higher tier and they would have to wait until the February meeting (APP meet once a month) for their case to be considered.

A small set back but not unexpected (everything is about cost saving don’t you know!) the family waited on tenterhooks for the outcome of panel on Monday 6th  February …..they waited…and waited….and waited. The assessment officer was great at trying to update even sending the family an e-mail just before she finished work for the day to let them know they had not been forgotten but she had heard nothing back.

Recognising that their son is not the only child with complex needs and that panel would have had many cases aside from their own to consider,  the Jones’s remained quietly confident that Tuesday would bring them much-anticipated news. It did; but not the kind that had them doing a fist bump.

In spite of over-whelming support and evidence from the numerous services involved, James’s own opinions,  in spite of pursuing some of the school options that panel had suggested, in spite of Mrs J having written a lengthy explanation as to why they had elected for one specific school as their first choice, incredibly, panel deferred their decision and asked that the family go back and look at 3 further schools not previously suggested!!! Furthermore, 2 of these schools have already been approached by the family and advised verbally they were unable to provide the kind of support James requires.

Mrs Jones veritably turned the air blue on hearing this news. It was indeed a good job all the kids were in school or their vocabulary may well have been “enhanced” – although it’s highly doubtful the teachers would have given the children star of the week for learning new and exciting terminology.

The family haven’t been given the courtesy of an explanation as to why their case has been deferred but it doesn’t take a genius to surmise it’s likely related to the costs of the schools involved – they would have been aware of indicative costings when first suggesting 2 of them back in October.

Whilst it is entirely correct and diligent that each authority can justify their expenditure, at what point in the scenario does this go beyond farcical??? What is to prevent panel from deferring the decision-making process again once these schools have been consulted? and potentially ad infinitum thereafter? It’s not so much that the goal posts have been moved, it’s more that the pitch itself has been demolished, bull dozed and the goal posts used to hang out washing.

It must be recognised that merely undertaking the EHCP process is costly to all parties involved  – educational psychologists, paediatricians, local authority, any and all parties involved with the family need to contribute,  visit the existing school, child and parents. Hours and hours of professionals time.

Whilst parents themselves do not financially contribute, (although indirectly in the form of taxes I suppose!!) the time factor alone is considerable and for working parents may necessitate them taking leave to attend meetings, file paperwork in appropriate time frames – multiple forms/questionnaires, do schools visits etc) and therefore it is in everyone’s interests to expedite the process.

First and foremost however, the needs of the young person missing out on their education must also be taken into account and on behalf of Mrs J I am vexed that panel are failing James. They are failing in their duty of care not only in respect of his educational needs but also his health and well-being and that of the wider family too.

It is fair to say this family are fragile; poised on the edge of exhaustion, stress and the relentless nature of 2 of their children having significant medical, mental health and emotional needs.

Ultimately, if James isn’t supported to achieve the very best of his potential, both academically and personally then the longer term costs to society in terms of benefits,  mental health, NHS care generally, possible criminality to fund his lifestyle or because he is unable to control his moods, assaults someone in anger etc  (an integral part of James’s education will support him in identifying his triggers and find ways to self-regulate and employ diversion tactics) then I fear the longer term costs could be far more substantial and not necessarily just financially…. ūüė¶

 Edvard Munch – The Scream

Shoulda, woulda, coulda…..

I’m not often given to introspection or too much dwelling on the past; after all, it rarely helps in changing anything going forward and dredges up old emotions and difficulties that you can’t fix. Indeed, as my Father is so fond of saying “If your Aunty had bo**ocks, she would be your Uncle! ¬†(so couth, you can tell where I get my social graces from can’t you?!)

Don’t get me wrong, I’m rather partial to the fond memories of yester- year and have (very!) rose tinted views of those halcyon days of early child rearing. ¬†In fact, I must be more than fond, some would say questionably insane and definitely have done more than reflecting on memories since I ended up with 4 of the now not so little blighters but generally speaking, I am much more about the present and the future. Of course there are lessons we can learn from our past. History tells us that often enough right? (although judging by the current state of world affairs, I’m not so sure what we learned but this isn’t a political piece so I will move swiftly on.)

So, why the title of this blog? Well, I’ll get to that properly in a minute but first let me explain that, 29th April 2016 sees the annual celebration of Undiagnosed Children’s Day – an event that is hugely important to families like mine because it gives us the opportunity to come together, support each other and know that we have something unique to celebrate – our uniqueness is flipping awesome!!

In a world defined by labels, ¬†especially where special needs, medical issues/conditions are concerned, in a myriad of coloured badges, ribbons, stickers, plastic bracelets, just giving pages etc etc, we too have a specific day to raise awareness, feel the love and hopefully share some of the important info we have all learned over the years, which might, just might, prevent another parent or carer feeling alone and isolated; a space truly ¬†dedicated to those who don’t have a diagnosis.

Back in January a group of SWAN UK ¬†(SWAN UK: Home)¬†¬†bloggers got together to focus on this years Undiagnosed Awareness Day and some of the key points that we as parent- carers would like to get across to the world at large about why it’s so important to spread the word and ensure that all those in need of support find their way to us. Aside from a weekend of laughter, giggles, and perhaps more than the occasional glug of pinot grigio (strictly post workshop you understand!) there were many, many issues that came to light.

In spite of it being the year 2016 and the huge advances in medical science and technology, ¬†we know that approximately 6000 children are born EVERY YEAR without a name for the medical issues and difficulties that they face. One in 25 children is born with a genetic condition and based on current data, 50% of children undergoing genetic testing through the NHS won’t get a diagnosis! ¬†Scary reading isn’t it?¬†Even more¬†scary being a part of that statistic but regular readers of my blogDefinitely Not The Walton’s…. | The Life & Crimes of a …will know that we have 2 children with what is felt to be an undiagnosed genetic condition.

Our youngest children are 9 and 7 respectively but our journey on the undiagnosed path only began shortly after the birth of our youngest child and it leads me¬†back succinctly to the title of this piece. Over the years, and most particularly in the early days of learning that we had a physically and medically complicated child, there are so many things that would have been helpful to know; so many things that I wish someone had taken the time to explain to me, not least of which that actually answers wouldn’t be forthcoming just like that and that 7 years into our journey of riddles, we would not necessarily be any closer to unravelling the mystery. That at times, the plot would actually thicken!

The Minx in particular is a conundrum most contraire (entirely reflected in her personality too!) Her response to specific investigations to define whether her overall condition is ¬†muscle related or nerve related (albeit with some interaction from both) have repeatedly come back as inconclusive. Frustratingly, more than one of her consultants has admitted that clinically they don’t see children in the pattern she presents with – technically the results produced don’t happen or are more clear cut – not in the Minx’s case naturally!

Normally such investigations define whether the problem is nerve OR muscle based but in Minx’s case, neither can be ruled in or out since aspects from each are prevalent and not in a helpful, lets pin this down kind of a way.

7 years of looking at specific genes for myasthenia, nearly 3 years being on the DDD study ¬†Deciphering Developmental Disorders (DDD) project …¬†and almost 6 months under the¬†Genomics England | 100,000 Genomes Project¬†we are still waiting for that elusive diagnosis and who knows if we will ever get one.

Perhaps more importantly, will we get one that means anything? Despite the rapid advances in genetics, many parents are still only receiving a bunch of numbers and letters, detailing duplications/mutations or missing links and these being ¬†so rare in themselves, tell them nothing about what to hope for in their child’s future or how/if any future children they may go on to have will be affected. Whilst we have definitely closed the door (what do you mean after the horse has bolted?!) on that particular matter, I still couldn’t answer when my 16 year old asked if any future children he may have will be affected.

So if I could go back to the me of old, at the start of this phase in her life, mother of a newborn, beautiful baby girl, I would reassure her that actually, even 7 years after being on this undiagnosed journey, she would still have her marbles ¬†(as much as any 30 year old ¬†+10+1 mother of 4 can have anyway) that she would hold it together most of the time (see earlier comment in brackets!) ¬†and that nothing she did/didn’t do was to blame, not even that rogue glass of wine or piece of brie that crept in somewhere along the line during the early days of unknown pregnancy.

I would give that woman a hug and tell her she would find a way through those early days of painful physiotherapy, 3 times a day doing stretches, 3 times a week at the child development centre with a distressed toddler screeching his accompanying woes to the cacophony of crying. I would show her that the all physiotherapy would produce a strongly independent child who can hold a pen, draw, colour and write beautifully in joined up hand writing no less.

I would tell her to ignore the off the cuff remark from some ‘helpful’ consultant ¬†about the possibility of her child never walking – after all if they can’t tell me what’s ‘wrong’ with my daughter, how can they tell me what’s right? A far too simplistic view of course but you get the gist.

I would let her see those days of feeding difficulties that resulted in 6 different meals being prepared in the desperate hope that she would eat something, ANYTHING (even a cheesy wotsit) would result in a self assured little girl who despite not managing much in volume from oral consumption, would have a palette far superior to her typical kids who would happily survive on a diet of pasta and pizza. Present the Minx with a plate of smoked salmon, coleslaw, olives, Bruschetta, salad, you name it really, she would tuck in with gusto. At the very least if she is having an off day and food is a total no-no, that her feeding tube, specialist milk and pump will sustain her.

Perhaps most importantly I would show her that she would draw on reserves of strength that she never knew she had. That she would stand up to Doctors and consultants and nurses who thought they knew better but woe betide you confront or ignore a mother preparing to support her child in times of medical need. You may have the letters after your name, the fancy certificates, diplomas and steady surgical hand but I, I have my child’s utmost well-being, heart and soul to think of and in that, other than my child herself, I rule supreme. I really hope in reading this that it comes across as intended, not as some arrogant, bigwig, thinking I know more than the medical teams, but that I understand my daughter and her needs better than anyone else. My future self would probably also tell me right now to stop justifying what I mean ūüôā

One of the other essentially vital things I would have done differently in those early days of isolation and fear, worry and struggling to find a place where we would fit in, would be to have directed that me to SWAN UK.  http://undiagnosed.org.uk/undiagnosed-childrens-day-2016

Instead of 4 years gadding about in the no-man’s land of the undiagnosed, I could have been part of a fantastic, amazing, inspirational support group of parents who would have scooped me up, drawn me in and given me a place to belong. That me would have relished the feeling of being ‘home’ in spite of the unknown, knowing someone would be there to answer my random worries in the middle of the night when swans like to cause mischief and fight sleep (no cleaning the cat litter box out did NOT cause Minx and G-Man’s issues!)

So now, this me, wants to help other parents, wrap them in the warm blanket of understanding and support and light the way to SWAN UK. You, Dear Reader, can help to. How? Please donate whatever you can to SWAN UK’s:¬†Just Giving page¬†or ¬†Virgin Money Giving page.

You can see our fabulous SWAN UK Lauren Roberts achieve a child hood ambition by taking a dunk in a bath of beans: http://www.justgiving.com/BeanGate

You can learn more about SWAN UK and the marvellous work they do: What does SWAN / being undiagnosed mean? | SWAN UK

Oh and you can also share my blog piece and visit my FB page:¬†Definitely Not The Waltons – Facebookhttp://www.facebook.com ‚Äļ Other

Thank you ūüôā

 

 

 

Blinging it…….

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The weekend just gone was a fab one!

I was invited by SWAN UK to attend a blogging workshop to discuss techniques, skill sets, twitter and the issues of being a parent of an undiagnosed child in general, especially bearing in mind that April 29th 2016 will be this years Undiagnosed Children’s Awareness Day.

Us parent bloggers are hoping to bring forth some pretty darn spectacular pieces to raise greater awareness as well as much needed funding. You can check out more about the work of SWAN UK and read some of the many amazing blogs from fellow parents on the SWAN UK Facebook page:

SWAN UK (Syndromes Without A Name)’s Page – Facebook

Being invited to meet and liaise with a pretty fab bunch of women, booked into a hotel  for 2 nights no less, no kids, no medications or feeds to prepare  was definitely a win win situation for me. RESULT!!

To his ongoing credit and ever accruing brownie points, hubby truly stepped up to the plate and agreed to drive me down to Birmingham where the event was taking place, tagging along all 4 of our children, their various accoutrements plus his drill so that he could carry out some minor DIY issues for his Mum who lives nearby.

Although the preparations beforehand required some kind of military style organisational skills and when we finally left the house, it looked like we were going for 2 weeks not 2 nights, we made it out the door on Friday night running only 20 minutes later than our planned departure which by Beaton Family standards meant we were actually on time.

Traffic was in our favour and the amount of FB notifications pinging out in the car suggested I wasn’t the only excited SWAN mama. To be fair, I think some of us were giddy with the thought of having uninterrupted sleep in a hotel room, although since most of us stayed up chatting and quaffing the odd glass of wine (or 3) into the small hours, the sleep factor meant little in the end. As another Mum put it so eloquently: we are SWAN parents, who needs sleep?!

Prior to the meet up, there had been plenty of discussions about the important factors of the weekend: what to wear, how many pairs of shoes to pack, whether we were going “OUT OUT” after the workshop and who would be having a fake tan in advance. ūüėČ ¬†Mindful of course of the importance of the event itself, we also reminded each other to bring lap tops, tablets and so on so that we could actually turn our attention to the reasons for the weekend.

I have to confess that although I love my tribe dearly, knowing that they were in the more than capable hands of my hubby and my mother in law, I didn’t have any qualms about leaving them (although of course I did miss them….a bit) but for one of the Mummy’s concerned, it was the first time she had ever left her swan in 5 years and that is no mean feat. She also left him for not one but 2 nights – a pretty fantastic effort for a first timer.

I’d like to think that she went home rejuvenated and wanting to do it all again but as she had the dubious “pleasure” of being my room mate and we spent waaaaaayyyy too much time chatting, I’m pretty sure if she goes to any other weekends, she will want a room all to herself!

Friday night saw a handful of us get together as the majority of the team were arriving the next day. It was good to put faces to names – or faces to blogs – many of us have never met in the “real” world (there are over 1000 members in the SWAN UK group, obviously not all of them blog) and although I have met a number of SWAN UK parents in the past on days out, coffee mornings and such like, many of the group have become firm friends but only on a “virtual” basis.

In my experience, SWAN UK is a very unique and special organisation. Bearing in mind that none of our children have a diagnosis, or they may only be newly diagnosed/ obtain a diagnosis that is so rare very little is known about it; in some case they only get a series of random letters and deletions which no doubt make sense to the medical bods but tell us very little about out children’s future prognosis. Our children’s needs and issues can vary dramatically ¬†-those who are profoundly medically complex/fragile, those who are physically disabled or cognitively delayed, there is the most wonderful sense of inclusion, belonging, a glue that holds us together if you will. There is always a friendly voice, a wealth of information and experience and a real feeling of community so every time I am lucky enough to meet more SWAN UK parents, I really do enjoy the connections we have.

Saturday morning dawned far too early after too much chatting but fortified by a stonking breakfast (waffles yum!) we attempted to find the conference venue. Having negotiated the delights of Birmingham city centre which is presently in the middle of a huge rejuvenation project and thus thoroughly confused the sat nav, we eventually made it to the conference venue and sat down to an unlimited supply of coffees and pastries. If it wasn’t for the fact that our team leader was a bit of a whip cracker and determined that we would knuckle down and stick to her well thought out and planned agenda for the day, we might have thought we were just out for a jolly.

However, ice breaker games played, we quickly settled to the tasks in hand and brain stormed like mad. Whilst it has to be said that I am still a total technophobe and probably a liability (turns out “plug ins” on blogs has nothing to do with hair straighteners, who knew?!) I learned some very valuable and useful info which I hope will assist me in blogging henceforth. I can’t pretend I truly understand widgets and linkies and all the other terminology that was bandied about but I do know some pretty good places to do more research and a lovely, very experienced fellow blogger has offered to take me under her wing and tweak mine as necessary…an offer she may live to regret when she realises quite how kack-handed I really am with tech!

I also got to develop my understanding of Twitter a bit better and whilst I don’t think you will find me a tweeting regular, I can see the benefits of such instantaneous connections with a wide audience. So far my main “achievements” (and once again I use this in the loosest of terms) have been to notify Virgin Trains that our carriage had been plunged into blackness on the way home from a London trip and to organise impromptu special assistance for the MIL when all other lines of coms had failed. ¬†Nonetheless, I am determined to keep going and use it to follow others, link to my blog, raise awareness of undiagnosed children etc etc.

It was a pretty full on day and we finished at 6pm with the only decision to be made thereafter as to how “Out out” we wanted to be by the end of the night. Our SWAN UK co-ordinator dispatched us with thanks and a clear message that we were no longer her responsibility with more than a sigh of relief.

We had a meal booked in a well known Pizza establishment…handily located right next to the choppy waters of the Birmingham canal with no railing or fencing surrounding it whatsoever. Tottering along in my “out-out” high heeled shoes (the Minx has already ear-marked them for future use!) and not at this point having had even a sip of wine, it was a pretty sober inspiring thought that I did not want to end up having an impromptu swim post meal….Nonetheless, I did “force” myself to have the odd glass, just to be sociable!

11;30pm quickly crept up and the sensible ones amongst us (i.e. not me!) decided to go back to the hotel, leaving the rest of us to continue our frivolities in a bar where the volume of the music threatened to make my ear drums bleed.

I must admit it was quite a relief to leave in the end and brave the chilly walk back, enjoying what can only be described as the spectacle of Birmingham “yoof” out to party on a Saturday night. I know I am officially old now as not only was the music far too loud but on more than one occasion I found myself goggling at the skimpy attire and scantily clad folk, muttering that they would catch their death of cold and thankful for my full length parka coat, skinny jeans and jumper…although the sparkly shoes still made me feel vaguely rebellious ūüôā

Looking forward to posting more and using my new found knowledge to bling things up in the future, I bid you adieu for now. If you would like to, I now have an FB page you can follow: Definitely Not The Waltons

*Erm, aware last 3 blogs have had shoes in the piccies…..maybe I can get a shoe sponsorship deal?!

 

 

 

 

 

 

 

 

D-Day….Red shoes Part 2…

image.jpegYesterday was D-Day – The Day I spoke at the Rare Diseases UK AGM in front of various learned bods and alliances of support groups etc.

I have had so many wonderful messages, e-mails and texts asking how it went and am truly overwhelmed by the support; it means a lot. Since everyone was still awake by the end of my speech and no one threw anything at me (mind you as my dear Father pointed out, have you seen the price of fruit these days?!) I am counting this one as a win.

Yes, it was nerve wracking and I had sweaty palms (bet you are glad I shared that aren’t you?!) but the main feeling ¬†I came away with was empowerment. So often as a parent we are at the whim of the medical teams and therapists; so often we wait passively for tests, results, follow up consultations and such like that the lack of having control, feeling disempowered, becomes our norm. More disconcertingly, you don’t even realise that’s what you have become used to, until something – ¬†in my case the opportunity to take part in the discussions at the AGM – ¬†makes you feel alive again. I can only describe it as akin to feeling numb to everything most of the time – maybe because we parents have so much invested in our children and the lack of diagnosis over time saps your energy; we become a faded, more jaded and insipid part of ourselves? I can’t say.

What I do know is that having people listen to our experiences as a family, acknowledge the battles we fight and most importantly recognising that things need to change for all families and patients involved with complex care needs was so very important. Not just for me but for the wider community as a whole.

It was most interesting to hear from Larissa Kerecuk, the Rare Disease lead from Birmingham Children’s Hospital and the plans that have been put in place to improve services, including a whole new building block being dedicated to paediatrics department specialising in rare diseases. Inspiring and definitely the way forward! Whilst I certainly wouldn’t wish a rare disease on any one, particularly a child, patients and families utilising their facilities when the project eventually comes to fruition can be assured that they will be treated in a fantastic facility, thought through in minute detail and concern. This can only be a good thing and I will follow their plans with great interest.

To listen to Jo Goode’s experience of having a very rare condition (dermatomyositis) and the battles she has faced (and still faces) over the years to get her diagnosis, even now to access appropriate treatments was both insightful and familiar in spite of the differences in her needs and those of our daughter. In fact, there was much nodding of heads all round the ¬†room from those who have obviously fought similar battles and could relate in ways that only a patient or carer can.

Although I thought when I first stepped up to the podium that I might regurgitate my spinach and egg muffin over the first few rows, ¬†I came away uplifted and empowered (& probably not just because I’d had a night in a sumptuous hotel room away from a beeping feed pump and the clamouring of my children, although I am sure that helped!) ¬†I really felt that I had contributed something useful and that those involved were striving for the best possible outcome for all affected by rare diseases in one way or another.

Whilst it was lovely to get home and see the family,  the irony of returning to my small folk who completely ignore everything I do, say and suggest after such lofty heights of the morning was not lost on me.

So, would I do it again? Hell yes! Watch out SWAN UK and Rare Diseases UK, you may have just created a monster!!

 

 

 

The Rules…..

It’s funny how sometimes an idea for a new post comes upon you…this one came to me as I was cleaning up after one of my littlies had been sick.(thank you reflux) and therefore I am sure Dear Reader, you are just dying to read on aren’t you?!

So THE RULES…..Hubby and I have a very old fashioned, what used to be termed traditional marriage, especially now that he is the sole bread winner (to be fair, with me, 4 kids and 2 cats, he’s more like the crumbs winner than the whole actual loaf but I digress) since I gave up a “proper” job 2 years ago to be the main carer for our children.

Any feminists might want to stop reading further since I am sure I will be inundated with outraged responses that I am setting women’s lib back 50 years at least. However, personally, I think the whole women’s lib thing might just have shot us well and truly in the foot and not just because I actually do like wearing high-heels and don’t consider them some enslaving device of patriarchal oppression. ¬†Woman these days are expected to want it all, have it all and be it all but at the expense of what?

Having been both a working Mum and a “non working” one, I don’t pretend to have the answer as to what is best for anyone else but in our family, it was glaringly obvious that something had to give and it was going to be my sanity if I carried on working in regular employment and juggling hubbies shifts, child care, medical situations and the like, especially when he went to work away and I was left being Mum and Dad as it were.

Some woman manage it all with aplomb; I am more than slightly envious of those sleekly put together, glossy haired, designer-handbag toting women who waft calm, serenity and Jo Malone and seem to have both their immaculate, perfectly behaved small folk and board room big wigs eating out of their hands. They also somehow manage to sit on the PTA, have organic, paraben free ¬†nic-nacs ¬†everywhere and do a Nigella in their ¬†kitchen. (Actually, I have often wondered if those women are not some visiting alien/stepford wife experiment, judging by the amount of amazing yet frazzled women I meet in the “real” world). ¬† I doff my hat to you, ¬†however, I can’t and I’m not too proud to admit when I’m beaten.

Maybe it’s the sheer number of kids we have or the fact that 3 out of the 4 have extra needs; maybe it’s having a hubby who works shifts and for which weekends off are rarer than rocking horse poo. All I know is that whilst the extra money I earned was very welcome, it ultimately was a case of boom or bust in more ways than one and with only a slight reservation I handed my notice in to concentrate on events on the home front.

Of course, being a stay at home mother, does have it’s own drawbacks, not least of all and like many of those “wonderful” FB meme’s proclaim, you are at the whim of a small army of crazy folk, all of your own making! Added to that they share 50% go my gene pool so I am often battling mini versions of me…..(hubby has my full respect)

I do have days where I miss the comraderie of working with other grown ups but my last job was working from home anyway so it’s been quite some time since I got to partake in office gossip and bicker over whose turn it was to put the coffee on…it’s not quite the same having the argument with yourself and the office Christmas party was very dull ūüėÄ

Since taking on the mantle of full time motherhood/carer, we have fallen into largely traditional roles: he takes the bins out and mows the lawn, checks the tire pressures and that sort of thing and I am responsible for  keeping the home fires burning and all that entails.

I am very lucky (and happy) to have a throughly modern man who does help round the house and with the childcare especially but frankly it’s a bit rubbish to expect him to go out and earn a living and then come home to do the shopping, cooking, cleaning, washing and ironing as well…..(isn’t it???)

Anyway, back to the focus of this post: RULES. ¬†Being a virtuoso parent of some 15 1/2 years I have dealt with my fair share of dirt, snot, pee, poop and blood and I am generally a hardened veteran on these fronts. However, there is a point I well and truly draw the line at and it was established very early on in to the days of parenthood: VOMIT (I’m getting to the point of the post soon I promise).

Give me a small child saying “here Mummy!” and thrusting a revolting, crusty bogey in my hand, I barely bat an eyelid; wee that’s flooded every where but the toilet bowl – well I have 3 boys (4 if you count the hubby), I can whisk out a wipe quicker than you can say Cillit Bang. But PUKE…nope, not ever, not even slightly. I am vomit phobic; in fact, this is actually a pucker phenomenon and goes by the time of emetophobia. I’ll be honest, even talking (writing) about it gets to me.

Pre children, I really wondered how I would cope with this aspect of child-rearing and it did make me question whether I was cut out for motherhood at all. (There have since been many others aspects that have me questioning that but it’s a bit too late 4 children on ūüėČ ) I however reasoned that vomiting kiddos was not an every day occurrence and was prepared to take the plunge.

I didn’t of course factor in refluxing children (3 out of my 4 little treasures have had major reflux issues and didn’t grow out of it until an advanced age in the case of the oldest and the little 2 still suffer regularly despite meds, surgery etc) who could do an impressive performance that would rival something from The Omen and cover walls a spectacular 8 feet or so from me, even managing to hit the ceiling on various occasions. Baby vomit from milk was manageable but only just. Add in food and it’s a whole different kettle of fish.

Hubby can still regale you with the tale of when we were away with our  firstborn. He had been suffering from  a truly horrible ear/throat infection and having been off his food for a while, managed to consume most of a jar of food in Boots, Brent Cross and then techni-colour yawned prolifically all over the baby change facilities.

When I started making that harrumphing noise, eyes streaming and ashen in the face, I was despatched unceremoniously into the shop to find clean clothes and purchase enough baby wipes to reach the moon and back. Apparently he was not prepared to clean up me too. Very unreasonable I thought.

So early on in our parenting roles, it was established and agreed that Martin would be responsible for clearing up vom-related incidences. In hind-sight and if I had my time again, I would have had it written in as an actual clause to the marriage vows and every employment contract he ever signed. Actually not a bad plan going forward….

Since the vomiting incident that inspired this blog post transpired at 5:30am one Saturday morning and hubby was of course at work, I ¬†was most put out. Being roused from slumber to the less than welcome tones of “I AM FINISHED” (bottom wiping) is bad enough but vomit is a whole new level of no no.

Would it have been unreasonable to ring his company and ask them to send him home to clean up? I really don’t think so….although I accept that could be difficult when he’s at 30,000 feet (pilot by profession). Nonetheless, I think there’s many a mother who would agree with me that it’s not too much to ask that he¬†delay his flight to some¬†frivolous¬†¬†European destination so that I don’t have to clear up under these circumstances…right??? (Don’t all shout at once)

Upon proffering a glass of water, cuddles and reassurance to the G man responsible for the “deposit” in his bedroom, ¬†it briefly (not that briefly) occurred to me to just shut the door on it and leave it, especially as G sleeps in a cabin bed and had produced his offering all down the side of it, on to a pile of lego and clothing as well as the sheets and carpet.

My befuddled, sleep fogged brain tried to calculate how long it was until hubby’s return but maths has never been my strong suit even under the best circumstances and so I gave up even trying to guess and resigned myself to a date with the rubber gloves, dettol, bucket and kitchen towel.

One amazing tip I have discovered is that Vicks Vapour rub smeared prolifically under one’s nose is nothing less than a god-send when having to tackle this hideous task. I think I was inspired to try it by an episode of Silent Witness or similar when they had a “floater” ¬†– dead body that has been in water for some time ¬†– to autopsy (FYI, floater means something entirely different in this house). Whilst it doesn’t stop my own stomach trying to add to the mess, I can usually manage to dry retch my way through the clean up. Try it next time you are faced with such a situation…or leave it to your other half….definitely my preferred option.

So, when hubby returned later that day and the children pounced on him as he walked in the door for apps, X Box codes and the like, he found me unamused and grumpy waving a hastily scribbled appendix to be added to the marriage vows, entitled THE RULES:

THOU SHALT NOT GO TO WORK/PLAY/CYCLE/ AND LEAVE THOU’S WIFE TO CLEAN UP THY CHILDREN’S VOMIT UNDER ANY CIRCUMSTANCES….EVER…EVEN IF THAT MEANS DELAYING YOUR WORKING DAY/PLAY TIME.

Funnily enough I can’t seem to get him to sign it……ah well, off to google “an idiot’s guide to legal contracts” and see if I can find a loop hole…..

Until next time…oh and Happy New Year 2016…may it consist of all things ¬†lovely….and no vomit…