Once Upon a Time….

IMG_0186Let me tell you a story. Are you sitting comfortable? Then I’ll begin…

Once upon a time there was a (relatively) normal family. Let’s call them the Jones’s, although I don’t think may people will be aiming to “keep up with the Jones’s”  once they have read this. In fact perhaps, it’s more a nightmare, horror type story rather than a settle-you-off-to-sleep bed time type of thing?

So the Jones’s live in a lovely but ordinary house in an ordinary part of the world and are distinctly unremarkable. Perhaps they break slightly away from the norm in that instead of the requisite 2.4 children per family, they have 4 (these days I hear that 3 is the new 2.4 anyway).

Not only do they have 4 children of varying ages but they in fact have 3 with special needs. In spite of some trials and tribulations along the way and more than a few bumps in the road over recent years, the Jones family are a happy bunch, very grateful for what they have and definitely appreciative of all the best things in life. They closely adhere to my own motto: the glass is half full – therefore more room for wine!

Nonetheless, at times things have been a bit sticky and the Jones family have often wondered whether they accidentally broke a lot of mirrors, spilt salt or walked under too many ladders for the gods of luck and chance to ignore. Perhaps they had poked the evil eye with a very sharp stick?!

When you have one child with a medical/phsyical or cognitive difficulties it can be tricky for the whole family. Add in 3, top that with children who don’t fit nicely into a tick box, one size fits all diagnosis, it becomes like doing a rubix cube – & Mrs Jones would freely admit that the only way she ever successfully completed one of those was by peeling the stickers off and rearranging them to fit the colour order…

However, the Jones’s have an extra dirty little secret;  it shouldn’t be such a stigma but it still is, even in this day and age:  one of their children has a significant mental health issue triggered by his diagnosis of autism spectrum disorder (ASD)  – aspergers with sensory processing disorder.

Since Christmas last year, the Jones have witnessed a steady decline in their son’s mental health. He has become increasingly unhappy, rebellious, not eating or sleeping well, absenting from class, leaving home, even jumping off the first floor roof in the middle of the night and self harming frequently. The Jones’s have had to call the police on more than one occasion to enlist their help in finding their son and getting him safely home.

The Jones’s suspect that the combination of puberty, hormones and aspergers plus main stream secondary school education is over-whelming for their son. School, to their credit, have been on board and supportive, despite what must be a very frustrating and difficult time for them too, especially considering the sheer volume of pupils in the school. The Jones boy –  we’ll call him James – has a cracking sense of humour when on top form but can be exhausting in the extreme, demanding of time, attention and support, and exhibit behaviour not dissimilar to that of a tantrum-ing toddler, only with a much more inventive vocabulary!!

One of the problems with a main stream school is that unless the teachers themselves decide to read up in their “free” time on subjects like autism, they will have had the very bare minimum input and training for special needs children. In spite of the huge rise in cases of autism being diagnosed, trainee teachers are given a mere glance at the SEN world and may encounter their first autistic child when he/she presents in the classroom as disruptive, disobedient, likely  in their mind set, a right little sh*t, a product of questionable parenting. You might want to take a look at the vey interesting article: http://www.autism.org.uk/get-involved/media-centre/news/2016-03-21-teacher-training.aspx

Anyone who has dealt with a high functioning autistic adult or child will be familiar with the rigidity of mind set and literal thinking that encapsulates ASD. Over the years Mrs J has been on the brunt of many a sharply retorted, brusk response that wasn’t quite in keeping with her expectations. She has learned not to use phrases such as “Would you like to help me unload the dishwasher/tidy your room etc?” She will be met with a re-sounding “NO!!”

To neuro-typical persons, (as those with aspergers or aspies like to call us) this response is cheeky, rude and impudent in the extreme;  que explosion from Mrs J, meltdown from James and all hell breaking loose Chez Jones. In the world of ASD however, Mrs J has merely worded the question wrongly and it’s taken quite a long time for her and the rest of the family to adjust their ways and rethink what they are ultimately trying to achieve.

If Mrs J was to turn to her son and phrase her request in a far less excruciatingly polite British fashion “Please can you help me unload the dishwasher,” she might have been met with a grumble or two but ultimately, James’s reply would generally have been far more acquiescent. You see, those with ASD hear the word “LIKE” in the request and assume it literally and therefore that they have an option in the matter. When you are cognisant of how important your phrasing is, you will realise those with ASD are merely being honest in telling you, no they would NOT LIKE to do the aforementioned chores.

It is perhaps something James’s maths teacher could have done well to remember. James came home from school only recently telling his parents he no longer needed to attend maths classes and what great news this was! Suspecting that somewhere along the lines, things might have been lost in translation, Mr and Mrs Jones quizzed him further.

It turns out that James’s maths teacher had told him, he didn’t care whether or not James attended his lesson since it was ultimately wasting his own time and the teacher would teach the rest of the class come what may. Not quite the you don’t need to come any more that James interpreted.

Similarly,  the cookery teacher having told James to bring in ingredients to make a sandwich that he would eat. Since James doesn’t eat sandwiches in any shape or form, he was not to be persuaded that he needed to take in balanced portions of protein, carbs, etc etc. In his view, he didn’t need to take in anything and it didn’t apply to him. Mrs Jones tried to reason with him and explain what the teacher had really meant but James had clearly heard the teachers instruction and was not to be dissuaded. James’s sense of injustice at the detention that followed was magnitude and I can’t say I blame him really.

Of course it goes without saying that meeting one person with autism doesn’t mean you have met them all; very far from it but there are key, recognised difficulties that cause a variety of difficulties for those with such a diagnosis.  Although those of us who are neurotypical can struggle to understand and see things from the point of view of someone on the spectrum, imagine how much more difficult it must be to live in a world that favours the neurotypical? Since ASD is a social communication disorder, body language, facial expressions, tones of voice, nuances and social niceties are things that often go over the heads of those individuals with aspergers and the like.

Additionally, sensory issues are extremely common for those on the spectrum. Noise, colours, lights, the environment, textures, tastes and smells can all be much more vivid or paradoxically dimmed necessitating those experiencing difficulties to crave further or seek to repress the influx and assaults on their sense.

James needs high and intense stimulation in most areas. He has always liked to push himself to extremes. Many a time the rest of the Jones family have looked on in horror as James scuttles up the nearest tree, climbing to the highest, most unstable branch, calling triumphantly from the top.

The faster, higher more exhilarating the roller coaster, the more James wants to ride it. Which likely explains why in younger years Mrs Jones found herself riding, unaccompanied, the most vomit inducing rides known to man. James having queued only to be disappointed and turned away from the ride due to his lack of height would beg and plead a reluctant parent to go on his behalf and feed back on the ride experience. Mr Jones would sensibly plead a bad back and leave Mrs J to take one for the team as it were….

In the winter James likes to sleep with PJ’s, a onesie, fluffy slipper socks, woolly hat and cocooned in  the highest tog duvet that can be found. Squished in like a sausage roll, surrounded by teddies and all things fluffy is his happy place. Little changes in the summer and it’s rare to see James without his trade mark hoody, firmly pulled over his head. Shorts are greeted with a look of disgust even if the fickle British summer busts the 30 degrees C mark (that’s 86 F my US friends.)

Noise is a problem. On his terms, James loves his music loud and pulsating. The Jones house reverberates with Back In Black and similar on a regular basis but James cannot tolerate his younger siblings playing or crying. Noises like the water heater springing to life, the background hum of a restaurant or kitchens in the distance, seem physically painful to him.

As for food. Mrs Jones will roll her eyes at you and clutch her hands to her head woebegone. It is a well known fact that children can be notoriously fussy but it is well documented that those with ASD find food particularly challenging. It presents numerous sensory issues – from texture, shape, size and smell. James can’t sit at a table with cheese, his food can’t touch any other item on a plate, his toast – plain, no topping, cannot be cut in half with a knife that has so much as touched anything else and the thing that was his most favourite thing EVER, that Mrs J bulk bought in a fit of jubilation will be consigned to the back of the cupboard only days later with rallying shrieks of disgust and a hearty “I HAVE NEVER EATEN THAT SO WHY DID YOU BUY IT!!!!” tirade. Unless of course it’s tomato ketchup, in which case, only the most expensive brand that will do, splodged liberally over everything and anything….it may be that Mrs Jones has found that a certain supermarket rhyming with ‘piddle’ do a brand that is just as good and as long as she decants  it in to the pricier named brand bottle without anyone seeing, nobody knows, but that would be telling.

So where does this leave the Jones family right now? Well they remain on quite a learning curve since their son was only formally diagnosed 3 years ago despite frequent presentations from the age of 4 to the Gp, Health visitor and eventually a CAMHS (Children and adolescent mental health) referral  requesting help, detailing their son’s extreme behaviours, anger, aggression, rigidity of thinking. It took from the age of 4 to almost 11 to get the diagnosis despite what in hindsight appear to be a glaringly obvious, one could say neon sign pointing to ASD.

Whilst the Jones’s would agree that labelling a child unnecessarily is never a good thing, it left them wondering in the wilderness feeling like terrible parents for far too many years. It dented their confidence and self belief and did unquestionable damage to their other children who were both witness and victim of their siblings extreme behaviours.

And yet, even now, with a diagnosis on board, the Jones family find themselves once again in a time of crisis. Where James’s self harm and suicidal tendencies, his violence, aggression and extreme mood swings are wreaking their chaos on the family as a whole. It’s devastating to see their child experience this; to watch him helpless in the grip of the disorder that causes such extreme anxiety and stress. He is convinced that he is fat, ugly, worthless and useless; that he has no redeeming qualities and is stupid, unteachable, unreachable.

He is none of these things but cannot see other. He cannot find a way through. In his darker moments, he really does want to end it all and terrifyingly in the moment is unable to see any other way out. His parents want to simultaneously hug him so tight they will never let go and yet shake him to wake up and fight. They also feel guilt that they sometimes intensely dislike the havoc that is being wreaked on them, their other children, their home. It was bad enough when unidentified numbers only meant calls from hospitals or consultants, now  seeing  No Caller ID flash up on their mobiles often heralds a phone call from school detailing that James has gone awol, insulted a teacher or got into a fight.

The Jones’s were forced to admit their son to hospital recently following a profound escalation in his risky behaviours and concerns that they were unable to keep him or their other children safe. Multiple agencies are involved in trying to support the Jones family and CAMHS wanted to help, they really did. But the family had presented at 10am on a Thursday night to A&E and CAMHS work 9-5 Monday to Friday.

At the mercy of numerous professionals the Jones prepare to keep fighting the good fight. Surely with a diagnosis on board, accessing support will be so much easier than dealing with their other conundrum children who remain undiagnosed? And there’s the rub – government funding and cut backs to mental health services in the UK are well known and so the whole process is just as daunting, just as lacking in cohesion and perhaps even just as time consuming from a co-ordinated care approach?

Mental health services for children and young people in England were cut by £35million last year, whilst mental health beds have been reduced by 8 per cent since 2010. (Source: The Independent, January 2016)

34 out of 51 (Two-thirds) of local authorities in England have reduced their CAMHS budget since 2010. One council reported to YoungMinds a drop of 41% in their CAMHS budget from 2010. 

YoungMinds are the UK’s leading charity committed to improving the emotional wellbeing and mental health of children and young people. They campaign, research and influence policy and practice as well as providing expert knowledge to professionals, parents and young people. For more info:  http://www.youngminds.org.uk/about/what_we_do

So where are the Jones family now? Despite James stating quite clearly that he fully intended to try and take his life again, that he could see no reason for living, Mrs James was told that the paediatric ward was not the right place for him, that there were no inpatient beds unless to quote “he was dying of an eating disorder or in the hold of a psychotic episode”.

School have been crying out for more advice, more planning, more assistance going forward. They too have to examine the purse strings, magic up funds and resources to keep James safe and in statutory education until the lengthy process of an Education & Health Care plan, which there are no guarantee James will qualify for, have been decided.

The Children’s Prevention Team want to help but they need more information from CAMHS who need more information from school who need more information from CAMHS who need input from Children’s Services and Social Services. And then there’s the paperwork. This family in time of dire need and desperate help: well they can’t get that till the paperworks done so round and round it goes. It would almost be funny if it wasn’t so serious. Will the Jones family story end with “and they all lived happily ever after?” I really don’t know….

 

 

 

 

Escape! 

I’m on a train down to London. By myself! Sans enfant!!! I’m practically fizzing with excitement (which likely explains why despite quite a busy train, nobody has ventured to sit next to me! 😊) 

Those of you who have to commute regularly are probably perplexed by my merriment, & wondering if I am a little ‘touched’ as the saying quaintly goes. Well perhaps I am but not by grubby little fingers, no one bugging me for the window seat or because he/she is taking up too much space/breathing too loud or heaven forbid LOOKING at them. Added bonus, I haven’t had to share my Kit-Kat with anyone & my coffee is still hot. Result!

This dear reader is actual TIME OFF… & I get to converse with grown ups later in the day too! I’m giddy with it I tell you! (I’ll apologise now, especially to all the English teachers for my prolific use of exclamation marks)

So, what did I do to deserve this parole? This time off for good behaviour? Well there is the *slightly* minor matter of speaking to MP’s later this afternoon at an all party parliamentary group (basically a meeting that is not political party specific, affects the wider community & therefore theoretically is something all MP’s regardless of their political party or leanings should be interested in since it is likely to affect all their constituents.) I did email my local MP last week & tweeted him at 3:46 this morning. Funnily enough he didn’t tweet me back… Can’t think why. Although I haven’t heard back in response to my email either, I’m hoping he will take the time to attend & gain some understanding of why I feel so passionately about raising the profile of SWAN UK – a support group for parents/Carers of undiagnosed medically, physically and/or cognitively complex children.

So although I don’t know exactly what I’m going to say (after all I’m not sure what I might be asked!) I do know it’s a subject that I can speak with first hand experience thereof. The feelings of isolation, worry, fear;  the struggles of co-ordinating care between multi-disciplinary teams, departments & hospitals; the impact having an undiagnosed child/ren on the wider family both financially, emotionally, mentally & physically and so on & so forth.

To be honest since I was asked if I would be willing to attend, I’ve been more preoccupied with a wardrobe crisis. After all, I live, sleep, eat & breath the undiagnosed bit every day but it’s not everyday I get to play with the grown ups in the wider community is it? Since I still hadn’t settled on an outfit de jour until 10:20 this morning, I have been fretting slightly. Serious, efficient, business like are not particularly words that fit my current couture. 

My last paid employment was carried out from home & frankly clients had no idea if I was in my PJ’s,ball gown or even in the ‘altogether’ so my daily wardrobe is much more based around comfy, practical & what can be sponge cleaned with a baby wipe… My clothing predicament has also been challenged by the good old fashioned British weather; renowned for its ability to encompass an entire gamut of metreological conditions in the space  of a day; especially when factoring the travelling from ‘oop north” to “daaan saff” factor… Not to mention the dilemma of whether I travel in my posh attire or change on arrival (creases being a factor either way). Decisions decisions 😬

I did suggest to hubby that the tax-payer should foot the bill for a new outfit for this opportunity. He looked somewhat perplexed & asked how I expected to float that one past HMRC, even with receipts. Witheringly I pointed out that since HE was A tax payer, I had in fact meant him. From his snort of derision and eye rolling, I took it as meaning a new frock was a no no. Sigh. 

Still, I’m sure you will be pleased to know that as in previous posts, I had already decided on my shoes quite some time ago. Not red ones this time but pink. 

So I’m now going to use my remaining  train time to read on my kindle uninterrupted by small folk squabbling & enjoy the rest of my biccie!

Until the next time….. Wish me luck!! 😳

Beans, Beans the musical fruit!

Ah yes Beans. I’ve ‘bean’ meaning to post a little more about this for a while but that thing called every day life seems to have gotten in the way recently and between hospital appointments, ironing, food shops, medical supply requirements (arguing discussions  with pharmacists) and my eldest turning 16 (how?!) I  have ‘bean’ more than a little distracted (I promise I’ll stop with the awful puns in a bit but let let me milk it a little longer – I spend far too much time in a house dominated by the male species where any conversations that involves even the remote possibility of ‘popping off’, wind, botty-burps or farting depending on the age bracket the smut-team fall into is de rigeur and of course beans and there veritable delights promote such delicious wind related humour so I may as well join in; I long ago gave up fighting the system!!)

Anyway, yesterday saw the start of Undiagnosed Children’s Day events kicking off in my home town of Knaresborough for the Yorkshire Massssiiiiiiivvvveeee. Us Yorkshire lot, are known throughout the SWAN UK community for our love of events and celebrating. Hard. I hate to brag but it’s true, we know how to party ‘oop north!” IMG_0112

Last year we had a fun packed adventure day in Flamingo Land which was enjoyed by many families. This year however, we wanted to promote a hugely inclusive,  family based event and also give our SWAN UK coordinator, the opportunity to fulfil a childhood ambition – sitting in a bath of baked beans!!

Frankly, why she ever dared share this little nugget of information on a Facebook post within our SWAN UK support group, I think many of us are still wondering – and I am pretty sure after yesterday’s shenanigans, she has made a mental note NEVER EVER to join in any of the light-hearted banter that often trickles through the more serious and support related queries that SWAN UK members post every day!

Last summer, group members were discussing ways we could raise much needed funds for SWAN UK, to support our ever growing members, to sign post more people, more promptly to the group and to continue putting smiles on faces by sending balloons to children in hospital, funding outings, coffee mornings, raise professional awareness and such like. This was especially important bearing in mind that our big lottery grant was coming to an end. In fact, its timely posting with UNDIAGNOSED AWARENESS DAY http://undiagnosed.org.uk/undiagnosed-childrens-day-2016-get-involved-online being on us imminently (29th April 2016)  to let you know that the grant just ended this April.

Ideas were bandied about left, right and centre and having reminisced about some of the mad-cap idea of the past that the ‘elf n safety police’ would have nightmares about people doing today, our co-ordinator lamented the fact that her Mum had never allowed her to sit in a bath of baked beans to raise money for charity. Personally speaking, I think her Mum was on to something there but never one to look a gift horse in the mouth, I can’t remember exactly who suggested it but the idea gathered momentum (hurtled really) and soon our would be bather found herself agreeing to take a dip, providing we could raise a significant amount of funds for SWAN UK.  Supermodels of the late 80’s/90’s famously said they didn’t get out of bed for less than £10,000, well our very own Lauren was prepared to dunk for a more moderate sum and we aimed to reach a target of £4,000 or thereabouts. Aim high, reach for the stars!

Of course these things don’t just happen overnight. There was the not so small matter of organisation, location, the bath itself and Lauren’s own commitments (she doesn’t seem to need sleep or maybe it’s not factored into her job description?) Anyway, I can speak from personal experience when I tell you that the woman is a one women power house who travels the length and breadth of the country on a mission to spread the word of SWAN UK far and wide, especially since our project to recruit SWAN UK parent reps  http://undiagnosed.org.uk/parentrepresentatives (coming soon to a town near YOU!) has really taken off and she personally oversees training, administration, queries and hand holding for initial presentations to the wider public, plus the myriad of other jobs that fall under her professional capacity.

It was on one her visits to myself in Yorkshire when we went to a meeting with a local organisation (https://www.henshaws.org.uk) to discuss how we could raise our profile and mutually assist one another that the idea of holding our very own Undiagnosed Children’s Day at their fabulous centre arose. Even more fittingly and I’m still not quite sure how this conversation evolved but it matters not, it turned out that Henshaws just happened to have a disused bath lying around which was perfect for our requirements.

Little did Lauren imagine on that cold, dank and foggy morning that a mere 4 months later, she would be sat in a bath of congealing orange sludge which could probably be smelled for miles around. To her eternal credit, she stuck it out for a solid 30 minutes whilst people (mainly small children but a hefty dose of evilly cackling adults too) poured yet more beans over her, paying extra for the privilege. Not only did Lauren undertake this herculean task (having chatted it over with her, it would seem this was worse in her eyes than her skydive a few year previously!!) but one of our younger SWANS was brave enough to jump in with her which was very entertaining too. We were able to live stream footage of the frivolity into the group and I have no doubt that in the week of Undiagnosed Celebrations that are due to follow, there will be plenty of opportunity for the wider public to view. In the meantime, I’ll add this little gem below:

IMG_0523

You will note she was even in SWAN UK colours in the old-fashioned bathing style suit that her Mum made especially for her! I bet her Mum was having the last laugh really!!

If you would like to donate and help us continue our fund raising mission, you can do so by clicking: http://www.justgiving.com/BeanGate When I last checked we had raised an incredible £2376 but any more donations, big or small, are gratefully received!

Suffice to say it was a day of fun and laughter. Whilst personally for me, the bean bath was the absolute highlight, there was plenty more great stuff to partake in.  We had a local organisation turn up with all sorts of weird and wonderful animals that could be petted/stroked/taken for walks (seeing an iguana in a fetching purple coat on a lead being paraded on the lawn, well more of a sun bathe really was entertaining!) There was a face painter, music, craft/modelling workshop, lawn games, some very lovely ladies doing make up demonstrations and hand massage and a general opportunity for parents, SWANs and just as importantly siblings to get together, chat and form strong bonds of friendship. My own children are already asking when their newly made friends can come and visit us again.

On a personal level I felt like a whirling dervish much of the day and didn’t get the opportunity to talk to everyone I would liked to have done but I hope that all those who attended felt part of something wonderful. After all SWAN UK gives those of us without a label, without a diagnosis or a recognised condition, a place to call home!

With hugely grateful thanks to everyone who supported and helped in anyway possible both on the day itself and the run up there too. Please keep sharing, donating and signposting.

#undiagnosedbutnotinvisble#

 

 

 

 

 

 

 

 

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🙂

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 › Other

Thank you🙂

 

 

 

The Wrestler, juggler & the plate spinner…

 

Kapow image 2Well I bet that title has you wondering? Have I taken up circus skills? Zip wires at dawn?Spandex leotards a plenty? For everyone’s sakes, let me please reassure you this is very far from the case. Not so much a vision in lycra, more a disturbing, nightmarish-never going to sleep – again kind of a scenario that would be! However, I think it is a pretty good sum up of my every day life and probably applies to the majority of parents and particularly those of us who inhabit the special needs world.

Lately nonetheless, I have reached a bit of a cross-roads,  a crisis of confidence as it were. I’m not sure why but I think it’s because I feel a bit….well…useless. Lacking in purpose? Maybe that my life is a little too self indulgent? Meh. I can’t really explain it properly but I think the combination of not having a ‘proper’ job and having children who are growing up (far too fast!) and no longer need me in the way they did when they were very little has probably played a part.

Don’t get me wrong I feel very privileged to be a stay at home mother, even now all my children are in mainstream school and as a steady stream of brown appointment envelopes thump on to the mat, I am cognisant of the fact that I am not a good employment prospect. But there are times when I have felt a yearning to do more, be more and make a difference.

A few people I have met recently have said to me “So what do you do?”I have no doubt they are being perfectly polite. It is after all an entirely reasonable question to ask someone you don’t know and are trying to build a rapport with.  But when we have exchanged the finer details and the ages of our children, now with them not being ‘little,’ some how being a stay at home Mum seems a bit 1950’s housewife.

I am sure it says more about my own insecurities than anything they may say in reply but I can’t help feeling judged and inconsequential. After all, it’s definitely not good form to launch into the fact that you have 3 kids with extra needs and all that that entails on a first meeting, so my life, at least to them, probably seems idyllic and twee in the extreme.

When all is going swimmingly in my world (well as swimmingly as it ever does with 4 children😉 ) I realise that I am incredibly blessed and lucky. I have a loving, supportive husband who as the soul breadwinner is happy for me to be on the home front. (I suspect that is mainly so that I keep him in cake!) He is both a fantastic father and hubby and pulls his weight with the house-hold chores. We probably spend more time together than the average couple – shift work means that we even get some quality time (ugh, overused phrase but it really is apt) without the children, although weekends together are as rare as hens teeth.

When I am tempted to think I could add a bit more crazy to the mix – such as getting a ‘pucker’ job, a dog, (kids –  keep hoping!)  and adding more hours, more charities, to voluntary work, I often find that life likes to send me a leetle, teeny-tiny kick in the pants that it’s not always a bed of roses…. and that roses themselves come with very prickly thorns.

All it takes for me to remember that this is carefully built house of cards can not just wobble on its foundations but come crashing down is for one of my little gremlins, darlings to throw a bit of a hissy into the works. Be that a medically complicated issue or when our off-spring with social and communication issues relating to his aspergers and sensory processing difficulties has a moment (understatement).

Misunderstandings between teachers, peers, us parents and his siblings can derail our son, blind-side us and the fall out leave us reeling for weeks on end. He is an amazing young man but lately the combination of autism together  with puberty, hormones and the chaos of life in general means that things have not been plain sailing. Having also just had a phone call from school detailing today’s antics and the fact he’s gone missing yet again, gives me the exact kick in the pants I need to know I am right where I am supposed to be in my life right now and I just need to suck it up buttercup….<Slurps Pinot Grigio to combat nerves>

Where does the wrestling come in you might ask, going back to the title of the piece? Well I am exiting this pity party for one right now and am going to over-share – just what everyone needs on a chilly Thursday right??

So, having decided that when people ask me what I do these days, suggesting that I am the one who makes the “here’s one I made earlier” option on Saturday Kitchen, Bake Off or Blue Peter gets doesn’t cut the mustard and often gets met with a look that says they will be ringing for the men in white coats very soon, I am now going to say I am a wrestler  extra-ordinare….and I am not lying.

This little gemstone did in fact come into my mind when I was attempting to wriggle myself into what I believe is affectionately known as a support garment. Look, after 4 kids and a chocolate biscuit habit that keeps McVitie’s stockholders happy, a woman needs all the help she can get right? So I purchased a body suit.

Yes, yes I know I should STEP AWAY from the fattening, naughty things and BEHAVE but frankly nothing short of manacling me and gaffer taping this mouth is going to keep me away from all things Cadbury, Pringles and the like. FYI, if any food companies want to sponsor me after reading my blog posts (knew there had to be reason brand names were coming to me thick and fast) I am open to bribes offers.

So recently, I saw an offer from a company. In the context of this post (& until I get offered a discount/deal for their advertising) let’s call them ‘Poupon.’ ‘Poupon’ were doing a deal on the sort of lift em/shift em truss all in one piece that engineers would be proud  to utilise in forming a suspension bridge and I was sure that this would give me the svelte curves of my dreams….or at least make it look less like a sausage stuffed into my dress.

What I hadn’t factored into the equation however is that getting such a garment on one’s body requires the contortionist skills that made Houdini look like an amateur and the gymnastic abilities of Olga Corbett all rolled into one.

Having tried initially to pull the garment over my head and wrestle my arms in, at one point, I was completely blind. Both I and it was well and truly stuck, not budging at all. There I was in the bathroom, stark naked except for the flesh coloured item of torture half way over head, arms wiggling like a loon. It would not move up, nor would it move down…and then came the ominous sound of stitching ripping.

After a few moments of panic, some heavy breathing and a possible shoulder dislocation I managed to get the wretched thing back over my head. Panting, in a sticky heap on the floor, I contemplated the fact that I must have lost a good half a stone with all the moves I had just been pulling. It also vaguely crossed my mind that the shower I had just had prior to my endeavours was a waste of time.

Not one who gives in easily, I decided to work this situation from the feet up; this had to be an easier option. Wrong. Very wrong. Getting the monstrosity up the thighs and above the waist was just as arduous a task as before. More worrying stitch tearing noises but I persevered and managed to wriggle into it  …and then somehow had to get my arms into position too. By the time I had struck moves that would have made Darcey Bussell weep (probably not in a good way) and got the infernal thing into some sort of alignment, I realised I now had a mono-boob positioned somewhere near my chin.

At this point I could have wept but made do with muttering profanities quietly since small ears were in the vicinity. Mindful that enhancing their vocabulary with words that rhymed with ‘banker’ and erm….’rollocks?’ probably wouldn’t endear me to their teachers or other parents, I thought I had got away without attracting the attention of my off-spring

Minx however, had clearly heard some sort of commotion and came to investigate. “Mummy, why are you all red and why do you look like you are wearing a bandage? Oh and where has your other boobie gone?” Clearly the look  I was going for…..not…

Having battled for so long, I was determined  I was not giving in and with a few more tweaks and shuffles, managed to appropriate the quasi- straight jacket into the correct location. Truth be told, I wondered by know if I really needed the garment at all. After all, if I had lost a good half a stone with my initial endeavours, I must now be down an even stone and leaner than a supermodel? (Tongue firmly in cheek).

I shuffled over to the mirror. Little known fact – support suits make you waddle like a duck…and it was a painful waddle at that. I can’t say I gasped with amazement at my newly hourglass shape but was sure that under the dress it would make all the difference.

And then it dawned on me, what if I needed the toilet???? There was no way I could be doing this routine more than twice a day (I figured that taking it off later that night would require similar exhibitionism). Fortunately, a quick glance (which was accompanied by a strangled gasp, apparently body suits like  these re-arrange your internal organs) revealed a hook and eye device in the nether regions. Result!

So after I slid the dress on, popped on some slap and stood in front of the mirror, did a vision of loveliness gaze back at me? Erm not really…and I still looked vaguely sausage shaped but time was pressing and I had places to be so that was that.

I hadn’t factored that getting in the car would cause more re-alignment of my innards and painful cramping, breathing perhaps being optional but we made our way to our Saturday morning Synagogue service and I was DETERMINED to stick out this torture.

Once the service was over, I was chatting to friends in the community when I felt an ominous twanging in the nether regions. Not only was this a very bad thing to happen whatever the circumstances but a place of worship is definitely not a good environment for such mayhem. The timing was made even worse as I was busy passing round platters of sandwiches, cue lurching awkwardly forwards and nearly up- ending plates and food on the floor!  Proving again my circus skills, I managed an inelegant tumble but plates remained aloft and food in place. A lucky escape.

Managing to excuse myself, I realised that the body suit was now flapping  open as evidenced by the breeze and if it wasn’t for my tights, there could have been an alfresco situation going on. Suitably mortified as well as horrified, I made a rapid exit promising a plague of epic proportions on the makers of all lycra based support wear and probably cancelling out all my good deeds of the morning thus far.

Driving home as fast as I could (still within the speed limit in case the boys and girls in blue are reading) I dashed/cum waddled my way back into the bathroom to remove the offending item and consign it straight to the depths of laundry hell. I’d like to say it was easier to take off than on but I would be lying. Suffice to say that a) I am not insane, b? not that desperate to be thin and c) it requires all kinds of special washing instructions so it will probably lay in the murky corners of the basket, never to be warn again but glinting up at me grimly from the dark recess.

Moral of the story? Probably that I should eat less biscuits and definitely give up on artifices to whittle the waist but at least I gained a whole new career out of it all….right?! In fact, I’m just off to think about my wrestling name right now…..

 

 

 

 

 

I am *that* Mum…..*

Tomorrow is one of those school days that strikes fear in my heart every time it rolls round…and I’m sure it seems to be more often than once a year: World Book Day!

Don’t get me wrong, we LOVE books and reading in this household and the little 2 still love a bedtime story of an evening but, and it’s a very big BUT:  I hate, hate, hate the palaver of agreeing a costume with fussy off spring, (think negotiations that would have the UN weeping, weeping I tell you into their FairTrade, organic, earth friendly, GM free, soy free, dairy free, skinny, decaf foamed top latte)  sorting out said costume without spending a small fortune, or worst still having to make something Blue Peter style, all with the aid of some sticky backed plastic, a wire coat hanger and an old cocoa tin…and naturally finding of course that when the day itself strikes, obstreperous child has decided they no longer want to wear whatever it was that we eventually agreed on.

Minx has STILL not forgiven me for sending her in dressed as her favourite character when I mis-read the school news letter 18 months ago. Dressed as Hello Kitty, face painted to the nines (I was quite proud actually), I was just relieved to get her out the door, vaguely on time. Turns out she was supposed to be her favourite Roald Dahl character….she mutters mutinously about this on a regular basis; I fully expect to wake up one day and find a horses head or similar in my bed such is her displeasure and looooong memory; the mafia would be proud..and in my defence, I wasn’t the only parent who got it wrong – there was many an Elsa, Anna,  Jedi, Ninja etc.

I always have the best intentions. It’s not as if I haven’t known that World Book Day (WBD as it shall be known from here on – is it more than just co-incidence that WMD – weapons of mass destruction share similar initials?!) was rearing it’s ugly head. The supermarkets are full of natty dressing up costumes, my e-mail in-box is crammed with would be Amazon/Argos et al suggestions and Mumsnet is positively brimming with wholesomely good ideas of things I can make in my “spare” time. I can’t help thinking that’s for those smugly talented ex art school mums who can make a haute couture gown out of an old bed sheet rather than some fingers and thumbs wanna be who likes to get a bit trigger happy with a glue gun and some sequins when the children aren’t looking – can’t possibly get that stuff out in front of them, just imagine the mess. Shudders.

Then there are the even more earth-motherly brigade who will proudly post in a flourish  of FB collage pics the offering they have created lovingly TOGETHER with their offspring. A step-by step guide to how they put together The Very Hungry Caterpillar costume that instantly transforms not just from the caterpillar to pupae stage but onwards to full butterfly glory complete with working proboscis at the mere flick of a press stud and then self deridingly say “Oh well I let DD/DS (darling daughter/son for those not in the “know”) do ALL their own work really, I just helped with the dangerous bits…..sheesh….

So as I mentioned, it’s the day before WBD and number 3 son, whose in an almighty cob-on with me anyway hasn’t agreed the costume. We had agreed Harry Potter (easy enough) then Horrid Henry (now too baby-ish apparently) and finally Jack from David Walliam’s  Grandpa’s Great Escape. In theory, I should grab that character with open arms -jeans and a t-shirt, it’s a no brainer. But in reality, I will look like one of *those* mum’s that has forgotten or worse still, can’t be bothered to make any effort.

My tearful pleadings (slight over-exaggeration, more vague grumbles) that perhaps he could go as Grandpa himself complete with blazer, face painted moustache and war medals have fallen on deaf ears. So here I sit procrastinating, wondering if I can make a paper-mache SpitFire that could somehow attach to G Man’s body via elastic or similar so he at least looks as if I have vaguely tried?! Will it dry in time, where IS that glue gun…..Even the netters costume guide of The BFG looks easier than a fully scaled Spitfire but he won’t be persuaded. Sigh.

Minx on the other hand is going as Ariel from the Little Mermaid. She is merely demanding hair dye of the orange hue and an intricately woven plait that will need at least  a You-Tube demonstration and preferably a quick crash course with Charles Worthington to produce. Since we luckily have a mermaid costume to hand (doesn’t everyone?!) and even one that fits her Build-A-Bear she is relatively easy to please. Of course trying to persuade her that she will NEED (have) to wear leggings and a long sleeve top under said costume, since it’s March and snowing, is proving more of a challenge….I can’t possibly be *that* Mum that sends her child in inappropriate school wear again can I?!

Well if you don’t hear from me for a while via FB/blogging, I have either had an incident with a rogue stapler, poster paint and empty washing up bottle or my children have once again disowned me and actually done away with me for good since I am just too embarrassing for words……  🙂IMG_0047IMG_5248