(Wo)Man’s best friend ❣️

This is a post I didn’t think I’d write for many years to come. One I shouldn’t even be thinking of composing. It’s not right. It’s not fair but here it is.

I am also acutely aware that this ramble may be perceived as very self-indulgent. Far too many of my good friends have lost their children. I would not dream for one moment of comparing my grief to theirs. But nonetheless the sudden and very unexpected loss of our much loved dog burns white hot and I am hollowed out with sadness. For all intents and purposes, our pup was a fully paid up 7th member of the family. Well technically 8th I guess if you count the cat. (We do love her too!)

If you have read any of my past blogs, you will know some of the difficulties and battles our family has faced over the last few years.

Whilst it’s not a competition, no top-trumps fest, the day to day demands of medically complex children, the amazing quirks but also relentlessness of autism, endless appointments, clinics, surgeries, battles for and with various agencies and services takes its toll. You Buddy (or Sir Budston of Burnarrrr as we sometimes referred to you!) my wonderful little dog, helped alleviate some of those burdens.

Please don’t misunderstand me. I recognise there are many people, probably some of them reading this, who would give everything they have and then some to be facing those same fights and difficulties I mentioned, having lost their precious loved ones far too prematurely; but oh my boy, I thought we had so many long and happy years ahead; wondrous walks to stroll/pad through, delightful or disgusting (depending on your perspective) smells to sniff and cuddles on the sofa to sneak in at any and every opportunity.

Buddy, much admired by all who met you, faithful four legged companion. How can we only have celebrated your birthday a month ago? How can it be that we never even made it to a whole year of you being in our lives, in our home?

You were my birthday present almost one year ago. We had talked about having a dog for over 5 years before taking the plunge. A bit like having a child, it was never quite the right time to introduce a dog to our chaotic lives.

Enlarging the family, moving house, redundancies, working abroad, relocating and leaving the island of my birth and the only home our children had ever known followed by house rentals before finally having a settled(ish) house of our own.

Quite out of the blue and having been a steadfast, most resistant party, I’ll never forget the day my hubby, Martin, turned to me and asked if I wanted a puppy for my birthday!

Minx was about to go into theatre for surgery number whatever and was giggling woozily from the pre-op medication. I recall being so taken aback I asked him if he had actually downed the pre-med instead! I was ecstatic and not about to give him time to change his mind.

Although it had been a long time coming, I knew exactly what kind of dog would suit our family, our crazy-hectic-bonkers lives and had done quite a bit of research in the hope that one day… maybe…just maybe… we would be lucky enough to have a pooch of our own.

We saw your picture first and a flurry of emails were exchanged before THE BIG DAY: your homecoming; my 40 something birthday. The moment I picked you up, cuddled you to me and laughed at the thought of putting you in the enormous crate in the back of the car, you filled our hearts so entirely. The void you leave behind is a chasm of epic proportions. I don’t know how or if ever it can be filled.

It doesn’t seem possible that I’m writing about your passing over the rainbow bridge when we should be looking forward to so many more years of mischief and mayhem. More days fretting about what you might have managed to scarf down if one of us wasn’t quick enough to stop you – I lost count the amount of Lego I scooped up just in time; how many bits of this and that I retrieved from your doggy jaws. Your quivering nose whiffling along always seeking out, questing and foraging. You could smell a dropped blueberry from a 100 paces and hear the rustling of the treats bag in the kitchen no matter where you were in the house or garden; a pretty useful tactic when you were being cheeky and not wanting to come to us when called!

You brought so much happiness. Joy, laughter, giggles and fun. And so much poop too! Martin tells me he cleaned up 12 doggy bags worth yesterday. Considering I last did it on Saturday morning and yesterday was only Wednesday, that’s quite an achievement. Especially since you were nil by mouth from Monday night on. And you were at the vets all day Tuesday….

We joked it didn’t feel right to get rid of all the 💩; perhaps we should create some poo-based monstrosity altar dedicated to you? Your legendary pooping out an entire, intact nerf bullet still makes me smile now. (NB definitely not to be encouraged responsible readers/dog owners – the children learnt the hard way that I meant what I said if they left things like Lego/nerf bullets lying around = bin)

A lot of expectation on such stumpy little legs. Not just the 6 people in your immediate family cuddling you, loving, and petting you. So many people that had the pleasure to meet you – our favourite coffee shop by the river and all the employees therein, our lovely groomer and her dog Poppy, friends and family and the seemingly never ending stream of delivery people with medical supplies or equipment, Amazon deliveries and so forth. Always an action packed day in this wonky-old household and you always ready to greet them with a deep woof, occasional bark and a wave of your magnificent plume of a tail. We often remarked your tail was bigger than you! It looked like it should sit in pride of place on a hat worn by one of the 3 Muskateers. And now I have a small piece of it saved in a memory box to remember you by. It smells still of the grooming, pamper session you had just last Friday. I’m glad it is of that and not the clinical smells of the veterinary practice, their kindness not withstanding. Your grooming sessions over the year cost more than my haircuts!

You were my secret keeper extraordinaire. Too many nights I muttered oaths into the top of your sweetly curling fur when dealing with the latest co*k-up from various services, be they special needs, medical bods or utility companies. So many times I poured out my heart and soul to you, you listening attentively with your head on one side, adopting the classic cava tilt that all other cavachon owners will recognise in its uniqueness. When I was saddest you snuggled that bit closer. When I was happy you were delighted that there were extra treats and cuddles and when it was all just a bit too much, you expected nothing but ensured your presence was always felt.

We joked often that you were not so much a dog – more part goat, part sloth. Your dislike of vigorous, brisk walks was the cause of much frivolity and it was remarked upon more than once that you were the perfect companion for a fair-weather not terribly exercise motivated owner such as myself. Too many times at the site of your harness and lead you would feign sleep or rush back to your bed refusing to come out, especially if it was cold. and dark. and raining. and there was a ‘Y’ in the day…..

Of course now I know my darling boy, you weren’t just faking it; you weren’t trying to make me feel better about the dislike of walking in the 4-seasons-in-1-day climate of Yorkshire. You were tired. Your little body was constantly battling a build up of toxins that in the end would be your downfall.

I try to take comfort from the fact that you are no longer suffering. That we could afford you the peace and dignity that is so often missing when our human loved ones are terminally ill. It makes a small dint in my grief.

At the moment there is too much sadness in this household. Too many reminders everywhere we look: your water bowl empty, toy box neat and tidy, not strewn all over the kitchen. Your place on the sofa vacant. I think even Tilly the Cat in her own feline way misses you; after all she can no longer take a swift munch out of your breakfast or dinner when she thinks none of us are looking.

Members on a wonderful Facebook web site I belong to for cavachon lovers have provided me with enormous support. An out pouring of love, empathy and sympathy. A stunning bouquet of flowers was delivered from them to me today. It made me cry again. But the tears were underscored by gratitude too. After all as Alfred Lord Tennyson said it best: “Tis better to have loved and lost than never to have loved at all.”Buddy 04/10/2016 – 14/11/2017 🌈❣️

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How do you sleep at night… part 2 😡😡

I’m a bit less ranty today but no less passionate so let’s get this done and written before I lose my impetus… never mind the will to live. 

I like to think I’m currently  channeling my inner Taylor Swift and her pals in the Bad Blood music video: 

(*above image may be subject to copy-right) 

But in reality I should be so lucky. I’ve spent far too much of the day with my youngest son on a hospital ward, wallowing, sat on my butt, scrolling social media and eating chocolate. Less Swift, more sloth;  I can feel the helplessness wanting to swallow me up; shut me down again. 

(sorry sloths everywhere who are probably outraged at the comparison) 

I’ve been extremely touched how many people have commented/got in touch or shared my previous post. Thank you. 

I wish what I had written didn’t resonate with so many but I am also grateful for the support and the sense of solidarity. 

I recognise the issues facing my family are far from unique. Judging by support groups I belong to, friends, social media and so forth, this utterly deplorable battle for services to provide and protect those most in need, those who don’t have a voice of their own, those with the least ability and energy to fight are being waged up and down the county. 

Whilst the difficulties faced may be slightly different, they all share a common denominator: the vulnerable, those in crisis, those society should be protecting and empowering. 

Forgive my Whitney Houston moment but our children ARE the future and if we don’t invest in them and secure the best possible pathway, what hope is there for society moving forward? 

I also know the elderly, infirm, mentally unwell and so on deserve their cause being championed in the same way. 

I recognise on a deeper level my attitude is simplistic and that something policy-wise, fiscally, has to give or change dramatically going forward. 

How do we achieve this? I don’t know; I never professed to have the answers as to what this should look like in terms of the bigger picture. 

All I do know is a seismic shift is necessary, society is screaming out for it. How we approach this, how we can achieve it is for somebody/ies far more qualified than I. (Otherwise I probably should be standing for government….🤔) 

The demands of a large, aging population who are living longer, the epidemic of obesity, drugs/alcohol/cigarettes, the advances in medical science meaning those who once would have met their maker because of cancers, heart disease, prematurity of birth and the terrifying increase in the so far unstoppable dementia are well documented. There can be no escaping the fact that expectations and demands for provision will increase year on year. 

All the while the funding for front line services is being reduced or in some cases done away with all together. Departments asked to find millions in cost savings, balance the books and yet still pull it out of the bag, somehow. 

Morale is at an all time low as evidenced by the mass exodus of Doctors, nurses, emergency services and so forth. 

I’m not naive. I know the country is on its knees financially and floundering in uncertain times: Brexit, the future of the NHS and government but the refusal to engage, instead throwing up wall after wall, challenge after challenge means there’s less money in the pot to provide even the most basic of services. 

Is it just me and people like me that can see the irony in money being spent on disputing and denying care instead of the care itself? 

We are informed of cuts to services/benefits/ grants every time we switch on the tv, open a news paper.  The effects of austerity on all aspects of social care, health and education (and of course the ripple effect on our police force, armed forces and such like) have been hiding in plain sight for many, many years

Why is it that the major political parties seem far more invested in scoring points at each other’s expense and plotting a coup to oust their leaders than implementing change and securing services for the greater good? 

I want to believe the bean counters genuinely care, that there is an appetite for change but they have become so blinded in covering their backs, their departments and their funds, (actually the tax payers funds) they have forgotten their original purpose. The other alternative: that they enjoy the power trip, playing god and causing abject misery has to be some dystopian fantasy…. doesn’t it?…

I do know that continuing with this ostrich style approach, riding rough-shod over those of us trying to cope day in, day out and strangling us in a bureaucratic nightmare, (presumably in the hope that parents/Carers will give up) ISN’T helping. 

If as much effort and emphasis was put into providing and fulfilling services, identifying and enabling children, parents and the wider family before they reached crisis point a great deal more would be achieved. 

I can’t help thinking that in fact the overall financial outlay would ultimately be a lot less, nevermind the impact and fallout on the family which ultimately add to the spiralling costs. 

How much do local authorities spend on retaining expensive legal council, defending cases and when challenged by parents on the attack, concede a case with moments to spare? The costs in such situations are not merely financial.

Whilst I cannot go into the ins and outs of our case in detail at the moment (until we receive the decision of the SEND tribunal I don’t want to prejudice any outcome) I can relate some of the damage and the wider implications the delays have caused us so far: 

  • Inability for autistic child to access mainstream education since March 2016 resulting in high levels of anxiety, depression leading to self harm and suicidal idealisations necessitating multiple in patient/out-patient hospital stays
  • Provision of interim specialised education package with 1:1 staff ratio/on occasion 2:1 to provide up to 2 hours study per day (where possible round child’s anxiety) 
  • Child unable to access GCSE subjects/make option choices
  • Involvement of multiple agencies on numerous occasions – police, accident & emergency, CAMHS, children’s social care, Young Carers, autism out reach, fostering team and foster carers
  • Local authority (LA) assessment and review officers to prepare EHCP, take information to specialist information panel on multiple occasions, liaise between relevant parties, issue consultation paperwork to potential schools 
  • Assessment of child by educational psychologist for local authority 
  • School transport (single occupant) with escort to ensure autistic child safely taken to and from school
  • Maternal mental health crisis triggered, medical intervention required,  inpatient psychiatric care for 3 months, multiple medications and therapies
  • Community care package to support maternal mental health, crisis team management, out of hours services 
  • Care package from disabled children’s team to provide direct payments in support of care for medically complex child thus enabling sole breadwinner to continue to work 
  • Emotional support to other children in the family necessitating pastoral support, teachers from 2 separate schools reporting back on children’s well-being and attending looked after children’s (LAC) team  meetings, approximately every 6 weeks
  • All children in family requiring support and intervention by CAMHS  to address trauma and ongoing psychological fall-out
  • Family engaging professional legal team and independent educational psychologist to prepare case for tribunal
  • LA engaging in-house legal advice and support
  • LA acquiring professional legal counsel to present at tribunal
  • Convening of independent tribunal and panel member(s) in official court to hear evidence from family and LA surrounding case 

How much does all of this add up to? This is not an exhaustive list and no doubt  there are things I have unintentionally missed/forgotten but I think it is a fair representation. It’s pretty depressing reading isn’t it?  

Has what I’ve detailed shocked you? We are just one family in a cast of thousands, dare I even say millions. 

Unless you or a loved one need to avail yourself of services, you assume it happens to others; not to people like us. 

We are now the others. 

How do you sleep at night?… part 1…

Heads up, a warning: I am enraged. White hot, scalding anger that is making me vitriolic and bitter. 

I know it’s doing me no good and I should channel some inner zen but there’s no yin in my yang and frankly I need something else to focus on; some kind of drive to power forward instead of zoning out passively. Time to create a stink. 

I don’t as a rule swear very much. Mainly because I have spent and continue to spend a great deal of time round small folk, be they my own or other people’s and the fact that mummy has a potty mouth is not the kind of accolade I want to be renowned for.  It doesn’t mean I don’t think in creative Anglo-Saxon oaths but I try to restrain myself from actually launching into a tirade that would make a sailor blush. 

Over the years, it’s been quite amusing to find substitute words for the things that have nearly slipped out & turn them into something socially acceptable before the offspring absorbed it as their latest word du jour. 

Try to teach them please/thank you/hello/goodbye in polite company, you would think I was attempting to teach them the full works of William Shakespeare… in Flemish. Yet one *almost* expletive of a wangdoodling, cowbunkerling f-bomb amd such like and they have absorbed it by osmosis. 🙄

Tonight however. I make an exception. I am angry. So fucking angry. The fact that fucking just autocorrected to ducking as I typed it, has incensed me further still. 😡😡

I feel sweary. I feel ranty and shouty and full of words my Dad would get cross with me for using (even though he taught me most of them) I’m even tempted to use the ‘c’ one (& I don’t meant Christmas) – sharp intake of breath.

But I can’t have a good shout, unleash a stream of invective because yet again we are in-patient on Hotel NHS and there are a lot of very small people around whose parents would quite understandably be distinctly unimpressed.

So I’ll do my ranting, raving and effing and jeffing here on my blog; after all I did start my musings some years back in an effort to make sense of it all. Life that is. It’s been cathartic to brain fart away.  Download and dump the crap (d’ya see what I did there?!) 

Half the time I start a blog post with some vague notion of what I want to write about but no idea what will spout forth. I usually feel better by the end. I’d love to be all coy and twee and say I don’t care if people read it or not but actually that would be a lie. I do care. I suppose I need some validation. 

Tonight however I REALLY need you to read it, share it, spread the word. Because I’m sick of the powers that be getting away with it. Letting down vulnerable children. Leaving families in crisis, drowning in despair and fracturing already fraught and taut relationships. 

3 weeks ago today we took our local authority (LA) to a special educational needs tribunal in an effort to secure an appropriate, residential school placement for our high-functioning autistic son.

This was a culmination of 18 months of fighting and battling and relentlessly dealing with the stalling, the hoop jumping bureaucratic, bean-counting process. 

Our 14 year old who should have chosen his GCSE options last school year and commenced this September term on the pathway forward to achieve his future potential has been entirely let down and cast aside by THE SYSTEM.

Would it shock and surprise you to learn he’s received less than 2 hours education per day since March 2016? I know it does me. 

I also know if we personally elected he only attend school for this woefully inadequate amount of time, over such a long period, we would have been threatened with fines and imprisonment by the education department. But this situation is not of our making so apparently that makes it legal, ok, just tickety-boo and we can all smile sweetly, nod and wave because they are trying THEIR BEST. Except they are not. 

The powers that be are far more concerned with covering their departments backside, zealously guarding their pot of funds so they don’t actually have to put it towards what’s in the best interests of the child. 

 I hasten to add this is NOT the fault of his current school who have done everything and then some to support him and us as a family in providing him with a suitable education whilst time ticks on relentlessly. But they don’t have the resources or specialist autism knowledge to support the style of learning and can’t provide the low-sensory low-stimulating environment he needs to facilitate his learning.

Even so his mainstream school have strived to do all they can; he has 1:1, sometimes even 2:1 sessions in an area well away from the hustle and bustle of the main school. They have come up with creative and thoughtful ways to stimulate him;  to forge a kinesthetic approach that captures his imagination where they can. But it’s not working. 

On that at least the LA are in agreement on. But that’s pretty much where it ends. 

I knew I should have smelled a stinking, great dirty rat when the  placement panel convened in October last year and agreed that our son did indeed require a specialised educational establishment. 

Not for us the refusal to assess for an education health care plan (EHCP), not for us the refusal to grant such a plan and not for us the dispute over main stream or specialist placement. So I should have known. It had all come to us far too easily.

Having had the benefit and heartbreak of reading other parents accounts of the lengths they have had to go to even just to get their  LA to agree to assess, I knew we had been extremely, for want of a better word, ‘lucky’ 

But really that’s where our luck ran out. It’s much harder than you think to find appropriate, specialist education. There are a myriad of schools out there meeting complex and varied needs but how do you narrow it down?

In actuality your LA are supposed to help you with this too. They paid lip service to it so I ended up resorting to google and a pick and mix approach, narrowed down by area of expertise and geographical location. 

I’ll spare you the laborious ins and outs of the very lengthy and exhausting process. Suffice to say, after panel sat in January 2017, they decided they didn’t have enough information on our case to make a decision. Sigh.

In February 2017, although all the information from the 3 schools we had received provisional offers of placement from (we had approached more than 12 by this point who couldn’t meet our son’s needs) the panel asked to consult with yet another 3 schools. Of course if they had read the case notes properly they would have seen that 2 out of the 3 had already been approached by us and felt unable to offer a place. The remaining school was full and wasn’t suitable for reasons I’m not at liberty to go into. It would be an understatement to say I was fuming.

The assessment and review officer (ARO) acting for the LA tried her best and wanted to expedite matters instead of making us wait till the March sitting. She was new and fed duff information from people higher up the food chain who left her carrying the can after dangling false promises.

The people with THE POWER don’t like taking your phone calls. They are it seems unable to respond to email, even when you have their direct email address. Their phones must also be unable to make out going calls as they never call back and mysteriously all voicemails go awol. Or something. 

Apparently they can reply to your local MP if he/she gets in touch after you have involved them and made them aware of your dissatisfaction  but only with vague promises that matters are in hand and will be dealt with. A word to the wise: don’t hold your breath. 

So March 2017: to our dismay,  panel named a wholly inappropriate day-placement school some hour or so away from our home which they expected our son to travel to and fro on a twice daily basis.  

Having previously viewed this particular school, I had submitted a lengthy explanation highlighting why the establishment, the cohort of students, the academic remit (or lack thereof) and lack of opportunity to promote our son’s social/emotional development in a holistic over-arching approach to his education were not just incompatible but potentially very damaging and in the worst case scenario likely to exacerbate his anxiety, self harm tendencies, suicidal idealisations and more extreme behavioural difficulties. These concerns were also backed up by his psychiatrist and psychologist from CAMHS (child adolescent mental health) in 2 separate letters. 

It will hardly comes as a surprise that the school the LA had selected was the cheapest option. 

I was swiftly reminded that the LA only have a duty to provide an education for my child and if they can prove that is enough, it doesn’t matter what we know to be in his best interest, what has already proved dividends in students with a similar make up, what’s in the best interest of society over the long term in aiding him to achieve his potential, thus ensuring he contributes economically, socially and attains independence; to negate relying on the state for benefits, or support services. The school we have found and the costs associated with it are ‘incompatible with the public purse’ and therefore they can refuse to provide it. 

They accepted the school we had found is superior in every way; they accepted it could meet need and that  like on like it would (based on past performance of students very like our son) offer him the best opportunity and chance of success going forward. Indeed The Judge at tribunal was very clear on all these points.

Yet the LA refused to concede. They have played dirty; suggested we have stalled the case by refusing to ask for an earlier tribunal date – although fully aware that the independent educational psychologist we had asked for input from couldn’t assess until the end of June. Paradoxically, once the extremely enlightening report had been shared with the LA and we suggested moving up court proceedings, they couldn’t accede to our request. 

Although the statutory dates for submission of evidence were clearly set out in writing and which both parties agree to abide by, the LA suddenly found a pressing need for their own educational psychologist to assess our son, although they hadn’t deemed it necessary since the previous visit a year ago. Funnily enough they then asked for the revised report be admitted into late evidence.  

Surprisingly they also suddenly discovered a letter that had been ‘misplaced’ from our son’s psychiatrist (and which we had never been party to even though we have always been copied into all other correspondence to date) which were counter to 2 previous letters she had written supporting the need for a residential specialist school and expressing her grave concerns to him being placed in an environment such as that outlined in the LA’s chosen school. How very curious indeed that all this information had only just come to light…..

To be continued…. 

Blinging it…….

IMG_5101

 

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. 😉  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 🙂

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!!

 

 

 

Put on your red shoes…….

stock-photo-7693735-red-dancing-shoes

Since I am writing this in the week that David Bowie died 😦 it seems more than a little appropriate that I get to use these iconic words in a blog post (thank you Let’s Dance)…  Ironic also that I had already planned the title of this piece before news of Mr Bowie’s untimely passing broke.

Next week I have been invited to speak at the AGM for Rare Diseases in London at The Royal College of Paediatrics and Child Health in the context of being a parent of an undiagnosed children.  Gulp.

To say I am more than a bit nervous is like saying that water is a bit wet……I really hope I can do justice to the community of parents/carers and children that compromise the medically/physically/cognitively complex, be they diagnosed or undiagnosed.  To get our message across about the lives we lead and the many roles we have. It’s no biggie right?  I’ll just imagine all the audience in their undies or something whilst I stand up and spout words of blah wisdom.

Having been invited to speak at the AGM not long before Christmas, I convinced myself I had plenty of time to write something EPIC but with Christmas hols, small people and large people around (not a size reference, honest, we had family staying) over the festive season, time got away from me and there were other more pressing matters to attend to (that wine wouldn’t drink itself you know).

I promised myself once the children had gone back to school I would settle to the task but hadn’t then banked on having “writers block”.  I don’t really consider myself a writer per se (sounds far too grandiose) but I knew with an event like this, I couldn’t really just stand up and wing it without something concrete to go on, even if that was only notes.

By the early part of this week, I had got as far as “Good Morning” and then found myself distracted by e-mails, Facebook, adverts, the sun light on the wall, what to wear – you know, anything basically other than committing pen to paper or in this case, key stroke to page.

It occurred to me having been given a fairly open brief and a speech timescale of 10 to 15 minutes that I had absolutely no idea what that looked like on paper. So that gave me another few minutes to play on google in the name of “research” and I discovered that somewhere in the region of 2500 words should cut it. Of course that threw me another dilemma: how fast do I read/speak???

Not being well versed in the art of public speaking but having been involved with theatrics in a previous life (theatrics?? you never would have guessed that would you?!) I know that it’s imperative to speak clearly and relatively s-l-o-w-l-y to get your point across and ensure your audience has understood and is engaged with you. So my usual style of 90miles a minute conversation (I even leave MYSELF out of breath) at times, wouldn’t cut it.

Nonetheless, all the vagueries of word counts, words per minute and such like were not getting me any closer to getting anything worthwhile written down. So then I decided that as I needed to use some family photos to frame my discussion around, that would be a good way of knowing what I wanted to convey and therefore a good place to continue my research.

It hit me as I explored the files on the lap top just how many gazillion or so photos and videos we have taken over the years. Far from helping however, this just distracted me still further. For the most part, it was a lovely stroll down memory lane but punctuated with pinpricks of poignancy. It also highlighted our abundant lack of organisation since photos of kids were mixed in with cats, cars, sunsets and mobile downloads but nothing in the latter years was organised so that I could find anything I actually needed or relevant to the job in hand!

So after several hours on the laptop, I had accomplished nothing more than alternating between whimsical nostalgia, smiles and a few blurry eyed moments (must have been the dust) but not anything worthwhile to bring to the event. Hmmmnn…

I was fairly sure that although the subject matter was essentially down to me, waffling on about the benefits of chocolate being an anti-oxidant (honest, it’s on the internet so it MUST be true!)  was not entirely the content that The Rare Diseases Org had in mind when they wondered if I would speak of my experiences.

But back to where to start, how to begin and how to convey such a very important message about dealing with the complexities surrounding family life and to give a snap shot of  all us families in a similar situation? The more I thought, the less I knew where to begin. How do you explain the hopes, dreams, worries, fears? How do you bring out the highs, the lows, the triumphs and tribulations and yet not make yourself or your family an object of pity or woe is me?

And then I took a breath and realised I cannot speak for everyone. I cannot pretend that I have the same experiences, difficulties or successes as others.  I can however speak as honestly as possible about our day to day lives in the hope that it might give a small snapshot, an insight and an overview and that gave me my voice, my focus for the piece.

I hope that in some small way it might humanise the process, certainly to the medical professionals who while however compassionate they may be, for the sake of their sanity and jobs, can really only think about us as long as we are in their consulting rooms or wards, operating theatres and such like. They cannot contemplate that before we arrive in their domain, we may have organised a plethora of tasks that make a popstars rider look like easy pickings. Other children that we have farmed out to willing family and friends so that we can attend their appointments, PE kits that we have painstakingly washed and ironed for 3 days hence with sticky notes on so they go to school on the correct day because we will be in-patients for a week or so. The lists of who eats what foods on what days and suggested alternatives in the event that child a, b or c throws a wobbly and proclaims they DON’T EAT THAT…EVER… The last minute spray of perfume on a kleenex so that the child having a teary moment because you are leaving AGAIN can be comforted by your smell.

So trying to communicate that angle of my life seemed like a very good place to start and funnily enough once I had begun, the words just flowed. Whether they are “good” enough,  powerful enough, emotive enough, I have no idea, but they are honest, they are my day to day and certainly reflect a lot of the experiences that other special needs parents have highlighted to me so they will have to do.

I’m still trying to wade my way through photo’s to add in and also finding some copy right free visual images to jazz it up a bit in the background but my biggest conundrum now is definitely what to wear 😉 (that’s very tongue in cheek for the avoidance of doubt!) What I do know for sure is that I have a pair of kick-ass red shoes that always make me feel fab, no matter what I am doing. So aside from whatever else I end up wearing, let’s put on those red shoes and whilst I definitely don’t think I’ll be dancing or doing a jig, it’s always up there if I get “speaker’s block”….jazz hands anyone?

 

 

 

 

 

 

 

Here comes the girls……

I feel like shouting this from the roof tops and for those of you who are my FB friends you will already know but here goes anyway:

I HAD A WEEKEND AWAY…ON MY OWN (well with friends) WITHOUT CHILDREN

and in this case, the use of shouty capitals near the top of the page is a good thing, I promise!!

The weekend just passed feels like it was an age in coming since it was first mentioned and then planned back in May of this year. The PTA mum’s involved with the Knaresborough Bed Race kindly invited me to join them in their annual jaunt away, despite at the time not knowing me all that well. I think even they might have been surprised that I jumped so readily at the invite and whether they were just being polite (or took pity on me!) I accepted with relish and eagerly counted down the months, then weeks and finally the days before our jollies. Too late to withdraw the offer now ladies!

You see, us special needs (SEN) Mum’s don’t get out a lot but when we do, we REALLY like to let our hair down (*erm more on that later)  and enjoy ourselves. Of course meticulous planning has to go in to all the arrangements in making nights out or heavens above, overnight breaks even possible; those of you walking unexpectedly into our kitchens could be forgiven for thinking a full style military coup was in progress if you dared to review the strategically placed boards, contact lists and risk/reward strategies for every single eventuality from Doomsday to playdate and some in between. It’s not always easy to pull these breaks off so short of asteroid/meteor disasters, we have pretty much planned every single eventuality and possibility that could play out during our much-needed planned time out.

Of course first rule of SEN parenting is DO NOT MENTION in front of complex needs child or for that matter any other of your children what your intentions are. Nothing is more likely to ensure a hospital dash or mini crisis of some sort than letting the small people know you have plans that don’t involve them.

I know of numerous other parents like myself who have resorted to mysterious rune patterns on specific dates in the calendar. You find yourself talking in code, gesticulating or using any form of pidgin French/Spanish/German etc that your children do not understand when discussing arrangements with the necessary parties involved. I laugh and sympathise regularly when reading posts and updates from SEN parents talking about “the thing” “the you know what,” or “the unmentionable” in their bid to hide details of any important plans from their offspring who seem to feel compelled to throw a spanner into the works if privy to events.

I think I have been looking forward to this weekend away in particular for so long because the last few months have been very busy with lots of appointments and plenty more to come on the calendar; especially appointments at Great Ormond Street which are both costly to get too and a bit of a head trip in dealing with emotionally and logistically.

Despite the Minx’s best endeavours to convince everyone in school that she is a whirling dervish of energy and make me feel a right lemon pushing her wheelchair laden with only bags and coats as she hangs upside down off the climbing frame, the reality behind closed doors, can at times, be quite different.

Minx’s daily pain levels have increased again and are becoming more problematic despite the significant medication she is taking to control this. Recent tests have indicated that there may be far more issues with her stomach/bowel and even other areas of involvement than we initially thought.

I’m not being deliberately vague but really until we have had some further meetings with her consultants and her tests have been fully analysed, there is no point putting the cart before the horse and panicking unnecessarily. As and when we have more info, I will blog about it but this is not the time and place and anyway, this post is supposed to be upbeat so let’s get back on track.

So this weekend just gone saw me heading to Carlisle. Being of the female persuasion, the train fares were booked months ago, the hotel meticulously organised, restaurant etc etc. Our fabulous organiser, Sharon, had catered to everyone’s tastes and budgets and had us saving into a kitty every week so the total cost of the trip once we descended on Carlisle had been more than catered for. (Unlike the hubby’s version of the men’s trip a month back which was a hilarious ramble of FB messages still not quite planned out on the day of departure!) Sharon had even made us up little goody bags with chewing gum, lottery ticket, condom (like every girl/guide scout knows, it pays to be prepared and it’s amazing what multiple uses a latex balloon has other than its original “purpose”) and paracetamol for the morning after.

Now it has to be said that over the years I have earned a reputation as the FB lush – my wall is regularly plastered in pics from friends tagging me in anything to do with Prosecco, wine, booze etc. I think after my performance this weekend, the Knaresborough PTA mum’s might disagree that I have earned this title….It wasn’t so much that they gave me a run for my money, more that they managed a marathon whilst my efforts were a token sprint.

Initially we were all very well-behaved and the journey from Knaresborough to Leeds was very respectable. However, I pity anyone who decided to sit in our train carriage for the journey from Leeds to Carlisle to be honest. Not because we were rude or swearing but we definitely weren’t that quiet and the veritable feast of foods that we had accumulated between us made those unlucky enough not to be in our party drool and gibber at the site of. There were cheeses and dips, crisps, scones with jam and cream and of course Prosecco. Lots of Prosecco……I think we had taken a bottle each, plus a few more..and pretty much every one of those was consumed on the way up. Even the Northern Rail staff were impressed with our Smorgasbord and suggested we could have made a pretty penny on selling bits and bobs up and down the train. (Thanks to the lovely Northern Rail staff who were great and even attempted to put on a quiz for us. Never really sure if our guard was Trevor or Tony – he answered to both!)

By the time we reached Carlisle some 2 hours later, I had made my first fatal mistake. Although definitely not “drunk” I certainly wasn’t sober as a judge. As I have matured in years, (probably not in attitude) my ability to handle alcohol has largely diminished. I blame it on the children (why not?!) and I generally reach a stage where the next drink will either make me sick or fall asleep. So as we got off the train and headed straight to the nearest pub – stumbling approx 150 metres from the station – all I wanted to do was have a little nana nap. Of course my fellow mums were outraged by this and quickly set up ordering the next rounds. I propped myself up on a corner and failed epicly at downing my wine and soda but was enjoying myself hugely. It has to be said not having small people demanding my attention at regular intervals and being Lisa the person was having a very positive effect on my well-bent, much as I wouldn’t change my role as Mum but it was great to have a break from the norm.

We checked into our hotel and arranged to meet in the bar after we had changed, before heading out to dinner. Prior to the trip, much debate over e-mail had taken place about dress codes for the evenings adventures.  I in particular wanted to know if we were going “out” or “OUT OUT” – any women will understand that there is a fundamental and clear distinction between the two necessitating very different dress codes.

In the end, I think it would have been more appropriate to have gone with the scuba suit as suggested by one of our party since Carlisle was subjected to horrendous rain and wind and was generally pretty chilly. Tottering along in open toed high heels (I’m a shorty, what can I say, even my slippers would have high heels if I could find some!) skinny jeans and sparkly top plus shawl was probably not my best plan and I’m really glad I opted for the curly look instead of bothering with hair straighteners.

Not a one of us had actually thought to check out the location of the restaurant on a google maps before we left so we blindly headed off though the driving rain and eventually stumbled in to the lovely Italian restaurant. Plenty of us resorted to using the hand dryers in the ladies loos to thaw out and dry off before sitting down to dinner.

The menu was fabulous. However by this point, I had completely lost my appetite; not great when yet more booze was on the table and I desperately needed something to soak it up. I attempted copious glasses of water and nibbled at my delicious food but really didn’t do it justice. Being that I also had a wall next to me, whilst the numerous conversation round the table were hilarious (& raucous!) I could quite happily have had a little nod of if it wasn’t for the diligence of my fellow mum’s in prodding me awake.

Post restaurant I was feeling a little green around the gills whilst the majority of our party were only warming up for the night’s festivities. My shame was lessened when one of the other Mum’s (who shall remain nameless, protection of the innocent and all that – us lighter-weights need to stand together 😀 ) announced that she had had enough and wanted to go back to the hotel, to bed NOW and promptly started on her way to do just that.  Fortunately she was also one of my room mates which was even better.

I seized on the opportunity and started back with her. I don’t think the group realised we had snuck off for a good few minutes but by the ringing of my mobile a few minutes later and the outraged squawking on the other end when I answered, I was aware that my lack of presence had been detected. Oops. Busted.

Nonetheless, the girls were fab and let myself and she who shall not be named (not Voldemort obviously) away to blissful slumber. Somewhat ridiculously considering I had the night off, no need even to get up in the middle of the night to see to beeping feed pumps or unwell children or being woken by the dulcet tones of “I am finished!!” (toilet related) – in the small hours, I found myself in bed by……10:15pm – yup – well and truly rubbish! So when I mentioned further above that us SEN mum’s really like to let our hair down, I’m not sure I can entirely claim that I am very rock and roll after all! Nonetheless I had enjoyed my night and the appeal of my comfy bed and snuggly duvet was strong.

Chugging down plenty of water, I enjoyed lovely sleep until I was roused rather forcefully at 2:20am by some of our crew returning from their escapades. There was much giggling and bouncing on beds, pulling of feet and threats to drag us down to the hotel bar which fortunately had closed until 4 am; although some of the girls were intending to do a “through-er”  – carry on drinking in their rooms and then hit the bar when it re-opened –  sense (or passing out) prevailed and we all met in a well-known pub chain for a slap up brekkie the next morning. I still can’t work out whether it was impressive or vaguely terrifying to see some of the hardened amongst us knocking back Sol’s (beer) at 11am!!

And so our fantastic trip to Carlisle was drawing to a close. Not before however we had raided the local M&S for necessary supplies on the train back. Perhaps one of my favourite quotes from the weekend was uttered in the food hall: “I don’t mean to be funny and I’m not an alcoholic, but I don’t think we have enough booze here to get us back!!” Brilliant.

So once again laden with gorgeous deli foods and Cava a plenty (I think we might have used up the UK supply of Prosecco) we found ourselves homeward bound. The trip home wasn’t to be without it’s adventures though as we found ourselves stuck in Skipton due to torrential flooding which had blocked the line.

Whilst this ensured much hilarity and most people weren’t too bothered when we made it back, I was mindful that my hubby was at work and my respite finished at 6pm so as ever the girls rallied round. Hubbies and partners were mobilised to rescue us and return us safely home (or even to carry on drinking in the local bars in some cases) and we found ourselves back in Knaresborough, a bit cold, a bit soggy but having had a fantastic time.

I’m so grateful to my fellow Mum’s for including me on this adventure and if I agree to put in some heavy duty training on the staying out late party front, I am hoping to get another invite next year…..

Thanks ladies ❤

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