Thursday, 5 February 2015

The Gloves are Off

With the General Election coming up I find our recent experiences with the NHS even more relevant.

In the past year we have lost our long standing psychiatrist, our ADHD nurse, our dietician, our physio and experienced ever worsening care. 

Despite having a child with complex needs on ADHD medication with a Team Around the Child system in process only the physio got replaced - and by someone who neither knows our family or cares two hoots. Obviously she knows better in five minutes than professionals who have worked with my kids for 5+ years though, which is just as well as few kids with a socio-communication disorder can bypass the years (yes, years) needed to build up a relationship to share their feelings and concerns. (And of course it cuts to the chase and saves oodles of time which would be wasted discussing the case with a parent who is obviously clueless having lived in a bubble for years not caring night and day for their kids.)

Roulette Wheel by Hakan Dahlstrom

It's also true that sadly many dieticians are less clued up than parents when it comes to feeding children with food allergies. Unless you win the game of Russian Roulette and get someone who "gets" it, or you are deemed worthy of tertiary level support you are probably better off saving the NHS some money and muddling through. After all, nutritional bloods are only a rough guide, aren't they? Definitely best ignored, it's a can of worms you really don't want to open.

Clinic letters rarely get sent to the right country, let alone the right hospital - and the jackpot of the letters actually reaching the right consultant is just pie in the sky....  In their defence whilst typing clinic letters in a distant room in India, the Australian hospital equivalent did come top of the list when Googled, so it was a pretty good hunch to send them there. Which is probably why our GP Practice thought it would be more accurate to take a wild stab in the dark and make up the details for our Summary Care Records. Inspired. The GP's secretaries do actually speak good English, but you do need a clinic letter to work from when writing notes, a "hedge your bets now" approach is not much wide of the mark because when the clinic letters DO arrive they are woefully inadequate at best or utterly incorrect at worst (medication errors, dosage errors, diagnosis errors, treatment errors) so that reading them is probably a waste of time.

Then there was the time when H's records in London were merged with another child with the same name. Who also lives in the same town. This other child was in fact a day younger, but of course it was so more likely that this was an error, and it was the same child. With a really common name. 

Of course it was. 
But it was just as well we didn't travel to London for the various admissions that were booked in my son's name, as we would have wasted the train fares. And my time. 

We've seen secretaries to key consultants change faster than Mr Ben in a hurry (sorry, 70's kids' TV joke) and almost none of them have English as a first language. I suspect they are paid a pitiful amount with no incentive to stay - certainly the food there is not a reason to stick around. The local consultants have more luck retaining their secretaries, I think they have discovered some secret survival strategy - which mostly involves not answering the phone.

Our local hospital has got money saving down to a fine art. One department doesn't issue review appointments, their policy is to wait and see if the patient remembers and calls! Mind you they probably halve their waiting lists this way and should win some award from the government. The children's department adds a few months to the requested time each time a review is sent out, then a couple of months later it's bumped onwards a few more. And physiotherapy have a budget-cutting policy to be proud of, automatically discharging any child not seen within a year. (Which is even more cunning when no review is sent out during that time, and when you call to request one you need to go Back to Basics and start again. With the four month wait to be seen.) No wonder their A and E is first class,  so much money saved from elsewhere! The only flaw in this policy is that with no out of hours care, no Walk In, and over stretched GPs A and E is just about the only port of call. So it needs to be good.....

Those without diagnoses, with a blurred collection of symptoms and partial answers are those who slip through the net at times like this. We've devalued and under-resourced our NHS in the name of good housekeeping. Permitted too many from outside the UK to access it for free, turned it on its head and shaken it up to see what falls out and left those who have least contact with the chronically sick to run it and hold the purse strings. 

But this isn't about politics. Or about funding. 

It's about people. 
About the elderly, about children - MY children, and about you and me. Not wearing short-sighted goggles and thinking tomorrow will never come.

And it's about responsibility, and respect. About caring and CARE. 

Because right now we are stockpiling enough time-bombs for the future to blow the NHS wide apart. Let's hope the people with responsibility remember to retain our respect and show some care.

The gloves are off. 
I just don't know whether I'm sitting in the dark holding a cup of tea in despair or gearing up for a fight. 

"Boxing Gloves" by Julia Manzerova

Friday, 30 January 2015

Seven Stages of Parenting a Child with Additional Needs

They say there are "Seven Ages of Man" and also "Seven Stages of Grief". There are also seven stages of parenting those with additional needs! This week has seen much thought and consideration for change here at Thompson HQ, we've taken stock and realised how far we have come, what we have learned - and just how far there is to go. Life with any child is a series of stages, but when complex needs are thrown into the parenting mix life takes unexpected turns. As with grief, it can really help to focus and accept these different stages, and I believe doctors and health professionals should take note too.

Parents of children with medical or other additional needs do indeed go through a grieving process, but that only becomes clear further down the line. Many are told of the wonderful poem by Emily Perl Kingsley, "Welcome to Holland", and indeed the poem does offer real comfort to many as they journey through the "Holland" that is their reality, rather than Italy where everyone else seems to be.

Parents of Special Needs kids frequently do feel "different", isolated, set apart, lost, sad and confused. It's not an easy problem to fix either - because no one has actually done anything wrong, but the best intentions in the world cannot always bridge the gap between where we find ourselves.... and where we intended to (and assumed we would) be.

Over the years I have run, moderated and supervised support forums for parents and noted how everyone does indeed seem to move through these discrete stages.

Stage One - Ignorance
You don't really understand what is going on so it doesn't really matter what the professionals tell you... Just will someone PLEASE sort your child out so you can go home and forget about the whole unpleasant experience??

Stage Two - Learning
OK. It wasn't quite as simple as that. Neither is it going to magically go away..... better start clueing yourself up because knowledge is power, right? We can DO this!! Many parents join support forums at this point, utterly convinced there are easy answers readily available.

Stage Three - Hope
Understanding is coming - you are the new expert on not only your child, but their problem is also currently your special subject. There is so much more awareness and understanding these days, this is only a short term issue and you will be back at work/running/socialising/SLEEPING any day soon. Right? The professionals are doing all they can and answers will come soon - and a complete fix is definitely possible. You constantly chase for hospital tests and appointments - you will take any cancellation - desperate to move on because there IS a cure or fix to all this. Many parents switch between multiple consultants, believing it's only a matter of time before they find the Holy Grail - a diagnosis and cure. Better times ahead.

Stage Four - Anger 
You know way more than any professional thinks or would acknowledge and get very angry if they hold back even the tiniest piece of information, or worse still know less than you. Because sadly that happens frequently, health professionals have specialist areas which might not cover your child's difficulties.
At this stage you also know your child inside and out and will correct anyone that implies otherwise. Mama Tiger has nothing on you,  watch out anyone who tries to change the wording of YOUR child's Statement when you aren't looking, no "is entitled to" will do! You've been in the system long enough now to know only too well the shortfalls, cracks and difficulties. After this long tunnel vision kicks in (or is that chronic sleep deprivation?!) and the eyes are on the prize. Your child WILL get the support they need.

Stage Five - Depression
Why me?

All your hopes, dreams... you love your child unconditionally but sometimes.... sometimes it's just TOO hard. TOO much. And when a friend has a perfect baby and only visits hospital once in a blue moon.... well that just isn't fair. This is such a hard phase, and can seem interminable. Sometimes only antidepressants can move you on, if Stage Four did not elicit sufficient support this can be a long, hard road. Friends are crucial, but so hard to retain on this journey of a lifetime. Many couples separate at this point, only the strong move on to -

Stage Six - Denial
Because it's actually not so bad. Really. You are trying a med wean and it's going to work. Moving on fro the feeding tube, growing out of the ADHD. Definitely. Things are definitely getting better and anyway, you are DONE focusing on medical issues all. the. time. And those appointments - every six months is QUITE enough thank you. You stop chasing, stop calling, stop asking. You know there are no answers, but it's ok, because you are all ok. Really. It's do-able.

Stage Seven - Acceptance
By this Stage you know more than you ever wanted about our child's condition, services and support (or lack of) that is available, and accept that your are in this for the long haul. You never were bound for Italy. It's not "ok", but it's reality. Your reality.  - Mind you if anyone else tells you that God only sends difficulties to those strong enough to cope with them you *might* just have to say something, Or slap them.

The hope of Stage Three - that utterly exhausting carrot-on-a-stick always just out of reach which ran you ragged is gone. You are tired - but not depressed. Realistic not pessimistic.  The notion that there is a magic wand out there almost laughable.

In actual fact, Stage Seven is really just as much "flying by the seat of your pants" as Stage 1 in many ways, only you have the Wonder Woman suit and a manual this time around....

Wednesday, 21 January 2015

RTFM - or not! With "Same Difference" Link Up

My brother and his partner have just given birth to a gorgeous baby girl - their first child, and I was reminded how simple life was with one little one. That is if you discount the hours screaming, refluxing, washing etc which was pretty much 24/7 with all four of mine, but it's definitely easier riding the reflux roller coaster the first time around, with only one to juggle!

In the lottery of life I pulled four straws all labelled "reflux", "gut allergies", "hypermobility", "ASD" and "ADHD", (and more, but the straws kind of ran out of room at that point... ) four straws - children - with many talents, gifts, personalities which enrich my life hugely on a daily basis.

Except first thing in the morning.

Mornings, are without a doubt, the most testing time known to parents. The knowledge that you are solely responsible for getting your brood to school with all they need, looking immaculate respectable  and clean is a tough call. Add in the necessary physiotherapy exercises, medications, normal teenage reluctance and exquisite ADHD/ASD-type screaming that only H can do and it's a potential recipe for disaster. But over the years, we have perfected survived and achieved this miracle on an almost daily basis. Which is actually quite impressive.

Friday, 9 January 2015

Nous sommes Charlie. But nous sommes so much more.

My first post of the year was going to be something along the lines of "Most Insane New Year's Resolutions Ever", for which I intended to offer my best contender of 2015.

In a moment of inspired positive thinking insane lack of forethought I decided to give up coffee and wine for January, and thereafter significantly reduce my coffee intake. I'm not sure what induced me to consider such a crazy notion or how I imagined I would function without the former - or recover without at least occasional doses of the latter, but suffice to say I lasted a week!

I also considered recording aspirations and intentions for the year ahead, but frankly life has never adhered to any carefully made plans and flying by the seat of my metaphorical pants whilst ricocheting off the usual (and unusual) obstacles life chooses to throw at me is, apparently, the only way to live. (Small wonder I never managed to ditch the coffee, in the absence of a crystal ball and personal Doppelgänger rocket fuel coffee is a survival prerequisite.)

It's been a hectic start to the New Year, my parents managed to both catch 'flu despite having the annual vaccine, and it hit them hard. Along with our usual health issues, school social issues and my rapidly reducing tolerance levels for such a high level of daily "excitement" it's small wonder I crashed spectacularly today. There is only so much adrenalin the body can take, today mine threw its toys out of the proverbial pram and dictated that I spend several hours sat on the sofa only moving my rm to drink tea, and perhaps my fingers to type in a kind of quasi-recovery. Blogging is without doubt the best sort of therapy there is.

I've read many articles today, several about the depressing events in France. One of the reasons I blog is because I do believe we all have a right to an opinion, and whilst tact and diplomacy is central to responsible debate there is never, ever an excuse for violence in disagreement. The massacre in the offices of the magazine Charlie Hebdo is indefensible, no matter what your religious beliefs are. The pen is, in the long term, far more powerful than the gun. (By pen I include typed words, and the power of social media.) The #JeSuisCharlie hashtag has spread across the whole world via social media platforms and millions unite to condemn the recent horrific events.

It is an important, valuable and human response to tragedy and extremism, but also evidence of something more - that whilst the articles written and cartoons drawn in responsive solidarity to these events demonstrate how the human race still values intelligent communication there is a parallel modern trend to over-simplify and reduce complex issues to a strap line, a buzz word or a slogan.

Once upon a time the tabloids held sway on such dumbing down of information, but it's ubiquitous now. No news article is complete without a basic infogram to explain "difficult" concepts to viewers, once complex science programmes sport patient, over-smiley presenters who patronisingly barely scratch the surface of the topic they present. Programmes look to their excessively large travel budgets to pull in viewers with as much excitement as possible. Worse still information for children is reduced to "bitesize" snippets of utterly unsatisfying, bland information. Quite honestly it's as insultingly bland and lacking in (intellectual) nutrition as a children's menu in family pub restaurant!

And I'm increasingly concerned that our children are offered less and less substantial information. We frequently hear how children are reading and writing less, becoming more reliant on Social Media by the day. Yet according to Helen Skelton, writing for Parentdish it is academics who are putting children off reading. That is rubbish. It is the modern trend towards a superficial, bland and insultingly unsatisfying way in which children are spoken too and interacted with - online, via television and through too many "fast food for kids" type books. Coupled with overly-full schedules there simply isn't the time, or information to really get "stuck in"to a topic anymore.

When was the last time you watched CBBC? Seventy-five per cent of its programmes are utter drivel, relying on the basic assumption that anyone under the age of fourteen has no interest in, or capability of understanding anything beyond vapid discussion of "Celebs", music or fashion. Yet children have a habit of rising to expectations. They are born curious, expecting no limits to their learning. Learning is eagerly anticipated and expected - but we are increasingly closing the door on intelligent discussion and reasoning and lowering the ceiling on their potential understanding.

This "dumbing down" of information and reduced expectation of understanding is everywhere. We teach to exams offering a finite body of knowledge as a means to an end. In our busy, hectic lives we rely on soundbites to inform ourselves of world events and make knee jerk assumptions based on precious little information. This is not only limiting our involvement, understanding and experience of life but is potentially dangerous, as evidenced by the inflammatory comments all over social media over the past couple of days. We condemn the terrorists who commit such atrocities but they too are probably responding to an over-simplification of their own world view. And in response, we distil events into a couple of hashtags on social media.  Yet tolerance requires education, and education requires the opportunity to learn.

It's time to stop selling ourselves short intellectually. Look beyond the headline, stray from the herd and inform, analyse, reflect and think critically. Don't jump on the latest hashtag bandwagon unless you are willing to delve deeper and investigate the underlying realities. #JeSuisCharlie is an excellent example of how we swallow the soundbite yet fail to think critically beyond it. Horror at such appalling events shouldn't require support for, or identification with what in actual fact were pretty racist and (to many) offensive cartoons. Too many confuse it with a license to insult.

Without knowledge and understanding, freedom of speech is worth little. A new generation is growing up believing that high speed, reactive social interaction is not only appropriate but the only way to interact. Yet tit deprives us of critical response and makes conflict more likely.

Nous sommes Charlie. But nous sommes so much more.

Tuesday, 16 December 2014

Rockin' Robin

This is not a paid post, I wasn't even asked to write about our forthcoming holiday at Potter's Leisure Resort. But sometimes, a spontaneous "Thank you, please keep doing what you do best!"  is needed. Just because.

I love Robins, we have a few tame ones here and they are really friendly. Too friendly in fact as our black panther cat managed to catch my husband's favourite last winter, much to his dismay! Robins do indeed "rock", they are wonderful birds but this post is more about the paper kind of "robin", that frequently enclosed in Christmas cards!

Photo courtesy of Jacob Spinks on Flickr Creative Commons 

We have received (and sent) fewer and fewer Christmas cards in recent years. Those I most enjoy receiving contain the "round robin" updates frequently sent to fill us in on last year's events. The modern version comes complete with colour photos, even the odd url to add detail. Those we receive are usually a lovely read,  I am always pleasantly surprised! Whilst I have been guilty of sending them myself in the past with everything pretty much online now I suspect friends see more than enough of my family the rest of the year, so I abstain. Anyway, to send one you need to write cards, and those left for me by the time the children have selected the best are barely worth sending!

Cartoon from Some eCards

The "round robin" reminds me of my childhood, of 1970s Christmases with appropriately sized Stockings, a meal that didn't break the bank and visits from neighbours to make the day special. We would spend Christmas Eve and Boxing Day with family friends, running riot with their children. I have memories of frenzied cheeseball fights and Twiglet fencing matches. Whilst they tasted pretty rank, there is little play value in Waitrose mini crostinis and filo tartlets.

But is it a good idea to hear all the high points from someone else's family I ask myself? Sometimes ignorance is indeed bliss.

A close friend from Cambridge days always sends fantastic letters, full of their activities over the year. Though one once made me wonder whether I had once again found evidence for some kind of parallel existence.....

OMG? Where did they order their kids from? 

I have to admit the thought of camping makes me laugh hysterically...... the twins would have been up at 5am yelling and running around the campsite and H would be at full throttle until his meds kicked in.... and no-one would be able to eat the same thing! My lot seem incapable of amusing themselves without fighting for approximately half an hour right now. A shared cottage holiday would be interesting too, I suspect we'd probably end up with the place to ourselves after 24 hours!

Jealous, moi?!!!!

But we've now got holidays sussed.

A couple of years back we had a booking error with a holiday, and needed a last minute alternative. We ended up at Potter's Leisure Resort, with no idea what our short break would be like. That booking error was in fact THE most wonderful thing that has happened to us in many years.

Firstly, Potter's caters for my kids. For real. Nowhere else will provide three three-course meals every day with little notice for children on complex exclusion diets. And it's absolutely not an issue. Their staff are incredible, knowing the names of every child within a couple of hours (or maybe that's just mine because they are so loud??!) and there is non-stop all-inclusive entertainment for all ages.

So I'm not writing a Round Robin this year, and I've sent precious few cards. But this year we are once again off to Potter's for a mini break and I just can't wait.

But although there's no "Round Robin" from me, here's a real "Rockin' Robin Chicken"instead. A Christmas photo from last year,which always makes me smile! They say pictures speak a thousand words and this one certainly does, telling not one but several year's worth of news and progress in a single shot.

Happy Christmas!

Tuesday, 2 December 2014

It's all gone Pear Shaped

This over 40 lark is pretty cool, most of the time. But occasionally age sneaks up and catches you unawares, rocking the thirty-something boat you had been comfortably sailing in and dragging you back to reality. It can be quite a shock.

Of course, age, or "ageing" can be a beautiful thing. And whilst there is certainly a tipping point (I would deny embracing each birthday with the enthusiasm my children do) I have relished aspects of time's inevitable progress. Occasionally it even seems I get "one over" on the years - slipping back into my pre-twin pregnancy jeans a week after delivery was certainly impressive - but what matters most to me, and indeed to most women, is feeling in control. Surprises I can do without.

No longer shopping in GAP sale because your parenting style is less "Toddler Taming up close and personal" and more "stroppy tweens from a distance" is certainly liberating. But that in effect is taking back control a little, identifying with your own needs. So when there is a lack of reciprocal cooperation from the body you have (for the most part) completely ignored for most of the past twenty years it seems reasonable that it should just have been placed "on hold" until you had time to get back to it...... I never thought for a minute it might have started to change - at least a little.  After all , I'm IN it, I would have noticed, right?

Wrong. Gravity has struck back and appears to have taken the first round.

What is particularly infuriating, is that this hasn't crept up on me in a slow, inevitable process over a couple of years. Neither have I gained weight. It is simply a case of Middle-Aged Spread. Or more precisely.... Middle-Aged Spreading Out.

Photo courtesy of Kiran Foster via Flickr Creative Commons

I'm not that vain, I almost never weigh myself and barely cast a glance in any available mirror. I don't have time - or the remotest inclination. But I do expect the "me" that looks back when I DO choose to focus beyond the varifocals at my reflection to be somewhat familiar.

Is that totally unreasonable?

So yesterday I was brought up short (literally) as I saw myself in our full length landing mirror, actually pausing long enough to register the image reflected. At 5'9" I'm a pretty lanky sort of girl, the GAP "Long and Lean" variety when it comes to jeans. But yesterday for a fleeting moment I thought someone had swapped our mirror for a fairground one as I appeared shorter and, well... with a rear end more J-Lo than previously. More "pear" than usual you might say..... more "Curvy" than "Long and Lean" at any rate.

A quick weight check reassured me that I really hadn't been scoffing chocolate biscuits whilst sleep walking, so I am forced to face the inevitable. That it's time to start telling people tall and skinny is SO last year and I'm embracing my inner Pear. Booty is Bootiful.

Now I just need to book into that Latin dance class......

Wednesday, 26 November 2014

5 Common Misconceptions about Christmas

Seriously? Christmas? Already?

Those who know me know I have very mixed feelings about Christmas. I was supremely fortunate to have enjoyed many cosy traditional Christmases as a child and dislike the overtly consumer focussed festivities of today. (Whatever possessed John Lewis to blast Carols in their store yesterday clearly wasn't Christmas Spirit, since it's not even December!) Constantly torn between wanting a "perfect Christmas" and resenting the fact that it's yet another set of tasks and responsibilities I usually spend December flitting between states of anxiety and excitement.....

So what would my advice be for a successful Christmas?
  • Know your limits - and your limitations!
  • Start early  
  • Keep everything low key ... and 
  • Acknowledge the common misconceptions that invariably lead to disappointment! 
Failing all that wear a paper bag for the whole of December and pretend its not happening.

5 Common Misconceptions about Christmas

1) It's Merry

This really depends on how well stocked the drinks cupboard is. The true Spirit of Christmas might not be found there but by 1am on Christmas morning - when your little overexcited insomniacs are *finally* asleep - sipping Santa's brandy hardly cuts it.

I find underestimating the distress involved in actually making it to the Big Day is my biggest failing. I peak too early - the Christmas Spirit hits about mid December, but the unbelievable sense of relief when I know everything is done leaves little room for merriment. I'm exhausted, utterly burnt out and stumble incoherently through Christmas Day with or without alcohol!

2) Giving is better than Receiving

Tough one this. I do wholeheartedly agree, since I derive huge pleasure from planning, wrapping and giving gifts at Christmas. But context is essential. I'm not worried whether I receive any wrapped gifts, our family don't really give to adults but receiving a "day off", an invitation to dinner where someone else cooks or an unexpected bottle of Prosecco would win hands down. Every time.

3) It's precious Family Time

This one really makes me smile. In many ways I guess it is, and we've had our chocolate box Christmas moments in our time. But it's only "precious" if "family" is in small doses, carefully spaced and with strictly moderated interaction. And that's the immediate resident family. Adding anyone beyond that needs meticulous consideration as too much exposure to the usual fighting and squabbling that is commonplace here is likely to leave lasting damage. Don't get me wrong, my family love each other dearly - but from a distance, through closed doors and as long as they are not coerced into a long, drawn out meal around the same table.

4) It's the Thought that Counts

I think this one depends hugely on just how well conceived that "thought" was. A last minute "It'll do!" spark at 4.30pm on Christmas Eve is unlikely to count for much at all, but anyone giving serious consideration and bravely going one step beyond socks for him, smellies for her and something from Poundland for the kids (you know who you are!) scores highly in my eyes. Most of us have far too much and want for little, having someone take the time to choose something as a gift is genuinely giving so much more. First World problem it might be, but it's easier to solve than you might think. Give a night's babysitting for a busy family, a hot meal for an elderly neighbour or a week of dog walks to a working couple. For me it's TIME that counts. Thinking counts when it involves consideration of others.

5) It's White

Seriously? WHEN was the last time you had snow at Christmas? Unless you live in Northern Scotland, not many UK readers will have had a "White Christmas" in the past twenty years, the last one I remember was 1993. I mean, who associated the Festive Season with the fluffy wet cold stuff that usually falls in January or February? Or March. Or even April - but not December, or at least not for Christmas. 2010 was snowy, and cold - but all melted on 24th December just in time for Christmas.

I guess the only thing in Christmas's favour is that it's marginally better than New Year. But just don't get me started on that one..... Humbug anyone?

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