Thursday, 18 September 2014

Prejudice - it's time to stop crisis managing the symptoms.

After hearing of the appalling episode of "Holby City" aired by the BBC this week I watched, speechless earlier as they rubbished and ridiculed a disease which  - call it what you like - has had a massive impact on my family's health and life. EGID is no walk in the park, it's not about intolerances, or fads, or imaginary ailments. It's a very real and extremely debilitating condition. Neither is it knew, but in the constant modern quest for clear classification it is persistently reevaluated and renamed.

It causes inflammation of the gastrointestinal tract, failure to thrive, pain, phenomenal abdominal distension, reflux, choking, throat impaction, diarrhoea, constipation and chronic impaction and autonomic issues to name but a few of the symptoms we have dealt with over the years.
Ignorance is never an excuse for prejudice.

Not really a walk in the park, is it? And that's just a random selection of the first pictures I came across. Believe me, it's not fun, not superficial and not all in anyone's mind.

Programmes like this are about as helpful as people posting "cure-all" panaceas. Recently I came across a gem which I had obviously been missing out on for years. Apparently Cinnamon and Honey is is apparently a tried and tested wonder cure for most health issues?  I kid you not. Recently I discovered several misguided individuals suggesting via Facebook that this amazing combination would cure virtually all known ailments. Goodness! And we've endured years worth of symptoms we could have kissed goodbye to in an instant. I mean, it makes you wonder why doctors go to medical school for seven years - doesn't it?

As my friend described on her Blog "Seven Years to Diagnosis" this episode of Holby City was insulting not only to those individuals fighting this comparatively rare disease and all its ramifications, but anyone dealing with a disease which has yet to become mainstream and fully accepted.

But what bothers me most is that this is not merely stupidity born of ignorance but an example of an endemic problem in society, possibly a trait in the human psyche we will never eradicate - to be suspicious and critical of the unfamiliar, to condemn that which we don't understand. At a time when we bend over backwards to accommodate known difference and apply criteria of positive discrimination we fall short of tackling the root cause of inequality in society. Fear of the unknown.

It's all very well to retrospectively tackle racial inequality, sexual inequality or educational inequality, but what of criteria we fear, misunderstand and shy away from addressing? Prejudice against the disabled, the chronically sick and the mentally ill is still as mainstream and accepted today as it was a decade or two ago. Ok, maybe we've gone some way to address this within our comfort zone - disabled veterans, cancer sufferers and elderly alzheimer sufferers - and that IS progress, but what about those with Bipolar, Depression, Eating Disorders, ME, and Food Allergies? Or Anxiety, ADHD, Autism, Skin disorders, Epilepsy, and Cerebral Palsy? It might be unacceptable to use terms like "Retard" or "Wally" but that hardly stops prejudice in its tracks.

We are indeed anthropologically programmed to mistrust that which is new and unfamiliar. Without knowledge and understanding how can we ascertain whether we are at risk ourselves? After all, self-preservation and herd instinct are pretty ingrained in human instinct. I remember first hearing of Eosinophilic Disease myself when my second child was young and apparently suffering "merely" with reflux. I vividly remember how profoundly grateful I felt that it was not something we would have to deal with. How wrong can you be. And when doctors and health professionals themselves are struggling to understand and classify a relatively new disease (in terms of acknowledgement, not symptoms) it's not surprising this social ignorance breeds prejudice.

But although sufferers of chronic illness might be on the periphery of mainstream medical understanding - yet to be chronicled in journals and textbooks as well-understood and accepted - they deserve respect and understanding too. It's time we challenged the root causes of prejudice, just as we would a new disease. Crisis-managing symptoms is only ever a short term sticking-plaster, whether you are referring to disease, or trends in society.

Ignorance is never an excuse for prejudice. And neither is Fear.

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Thursday, 4 September 2014

The lift that never worked

The day I arrived the lift wasn’t working. 
Original Image courtesy
of maya picture
It seemed that everyone else used it successfully 
But the buttons failed to work for me. 
Alone I searched for the stairs. 

The promise of belonging had lured me in, 
The entry code earned after a considerable struggle. 
Totally uncertain of myself yet thrilled and excited I entered alone 
Certain this was where I wanted and needed to be. 

Each flight of steep stairs tantalised me with hope 
Of the moment I would join others and relinquish the invisible bubble around me. 
How I ached to leave behind the loneliness 
And discover my place in the jigsaw of life. 

I climbed and climbed 
Pausing for breath and the time to analyse each difficult step. 
The pain of isolation seemed to lessen with each floor I reached. 
Others called “Hello” as they passed me – and smiled! 

At last it seemed I was making real progress 
My longed for destination approaching, 
The opportunity to relax amongst others – 
To “Be” without thinking, analysing, worrying. 

And thus I arrived – or so I thought 
At the floor where I had yearned to be, with the Everyone I wanted to join 
Only to discover nothing had changed. 
The door was locked and I remained outside, alone.

I wrote this when I was 16. 
I always loved school but found "fitting in" quite a challenge, always on the periphery of every social circle - or so it seemed. That metaphorical lift never actually worked for me, there was no easy route into acceptance.

And right now I know a couple of students currently feeling this way. 
As the new school year starts everyone is jostling for permission, finding their feet in new surroundings often with unfamiliar people. (Meanwhile the familiar ones might seem less familiar after the long break than perhaps they should!)

School is perhaps the toughest social environment you are ever likely to find yourself in. It's not optional, and most schools operate a largely "one size fits all" approach to their students. And you rely almost solely on your parents to ensure you end up in the right place. And that's the key in my opinion - finding the right place for YOU.  Because later on you have choices, as you shed the strait-jacket of public exam timetables and move into the more fluid world of college or work (hopefully) armed with a better understanding of who you are.  Not until adulthood can you can seize control of your life with the essential tools to make sound decisions.

As a parent I'm often asked why I have three children at one school, and the fourth at another. And until recently I thought I knew the answer. But in actual fact, the real reason is far simpler than any  academic, social or medical reason I might have previously conjured up. It's not because of what that one child is or isn't, and it isn't a second choice. Choosing a school is such a fundamentally, crucially important decision. It should never be reactive - selecting a second, third or even fourth "best" because x y and z were not possible.  It's about making a proactive choice for that individual- focussing on who they are, their talents, personality and potential. And I honestly believe that is the same for all children irrespective of how "good" or "bad" a school might be. Because one size never fits all.

But even when you are indeed in the right place for you, those initial weeks can often seem particularly traumatic, with parents chewing their nails to the quick in a state of anxiety comparable to our offspring! Do we do our children a disservice focusing so strongly on the "Transition" process, making moving up such a big deal? In our efforts to prepare and calm them, do we in fact whip kids up into a frenzy of change-acknowledgement and preparation? I think perhaps we do. In an aspiration-driven superlative-seeking frenzy parents arm themselves with the latest stats, information and opinion, learn their rights and options and strive to secure the "best" place they can for their child, be it in the Private or State sector. But do we sometimes choose schools based on parental need more than that of our child?

Sometimes I wonder if we lose sight of what we should be focussing on, as however good that school is, what really matters is whether it fits your child. Because if their metaphorical lift isn't working when they get there, it's not a good place to be.

Monday, 1 September 2014

Ashya King - Protection or Prejudice?

Gill from "Sometimes it's Peaceful" wrote an excellent post about Parental Rights and Education here and I urge you to read it, particularly if you are still under the illusion that there is no Big Brother, he is not watching you and your family home is your castle.... 

As parents we came alarmingly close to losing key parental rights under the last government - and no one batted an eyelid. The last Government brought in "Every Child Matters", Children's Centres and the biggest amount of Red Tape ever seen. The drive to see Education, and even Childcare as a Science is still to be dropped by the current government, despite many critics pointing out the obvious for several years. 

We are losing the ability to trust our human instinct and intuition at an alarming rate in this country, as mothers, carers and professionals have to justify and quantify their every action.

So before another government seeks to further erode parental rights parents it's worth pointing out that English parents actually have fewer Statutory Rights in Family Courts than criminals in the Crown Courts. But of course, we needn't worry about that as we are not child abusers, right? WRONG. The impact of losing parental rights will be felt rippling throughout society, at every level and every turn.

The media thrives on appalling events such as the death of Victoria Climbie, Baby P and now the story of Ashya King and seeks to (bizarrely) work with the public bodies they usually challenge to hand them a Fait Accompli - a "Perfect Storm", a public whipped up in a frenzy of misunderstanding layered on ignorance which then willingly hands over individual and family rights for their "protection", and the protection of their own children.
But what on earth makes parents, voters and the public suddenly regain this exalted view of politicians, public officials and institutions? Where does the usual healthy dose of scepticism vanish to? Are we so naive that when it comes to our children we believe everything we are told?

Friday, 29 August 2014

I'm a Survivor!!

As the long summer holidays draw to a close - are you relieved? Sad? Or a little of both?

There is a little-voiced secret amongst Mum's around this time of year.... they are at least a little relieved that August is drawing to a close.
If asked, most will admit to being sad the long summer break is nearly over, but few will ALSO admit that with that sadness comes a liberal dose of relief. A very liberal dose.

Working Mum's often find it traumatic juggling school holidays whether in full time or part time work, and full time mums - despite loving their children dearly find many successive weeks all together draining both emotionally, physically and financially!

Each year I look forward to a couple of months with less racing around, spending a little more time just "being" and less time "doing". Relaxing and enjoying time with those I love. But it never quite works out like that!

Firstly my fabulous four don't actually enjoy each other's company very much.... they would far rather exist as separate children and claim they would probably rather have been only children! All are delightful on their own but I find I take on the role of UN Peace Negotiator for the entire duration of the summer as we vainly struggle to find activities that four very different children can all enjoy.

Except it's unpaid work and continues well after the witching hour rush hour. And without perks or lunch - or even the chance to grab a quiet coffee!

Second, and perhaps more importantly, they all prefer being in school with the routines and activity, to being at home! (Yes, really!!)

As I wrote on one of my other Blogs recently (for children) Summer Holidays are an anachronistic anomaly. Our children are not required to pick hops, thresh the wheat or help with stubble clearing. No, they are far more likely to be found in front of a games console, maybe a piano, or with a vast box of loom bands than helping out with even the most meal chores at home.

The long summer break was never intended as a prolonged time of doing nothing for kids, it was built in to the school year to avoid the considerable absenteeism that would otherwise occur as parents needed their children as additional labour, and meant that families were more supportive of the compulsory schooling Gladstone and his government were seeking to enforce.

Doing "nothing" isn't good for anybody, and the continued week after week pressure to find "something" to do is exhausting and expensive. There is a limit to the number of free activities available, and the length of time to be filled necessitates a large variety. But more importantly, my children miss the social side of school, the mental activity and the routine. My daughter has been asking "how long is left?" since the beginning of August!

For those of you with those mythical easy going, chilled out children who enjoy nothing more than relaxing with family I suppress my envy am thrilled for you and hope you have enjoyed a perfect summer break. But next week cannot come soon enough for us!

Having had one son at home since April on Study Leave then long post-exam leave it seems the normality of the school routine is but a whimsical dream from yesteryear - a reality I look forward to reliving soon. And when the start of term routine (finally) rolls around, I most certainly WILL be singing "I'm  a Survivor" very loudly after drop off, but the people most chuffed to be back will be these:-

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Friday, 22 August 2014

Should older siblings help out?

I recently read an interesting post by Jayne Crammond about her very valid concerns that she didn't want to make her daughter feel somehow responsible for her new sibling. Superficially I couldn't agree more - whilst many children are indeed Carers for siblings or older family members it is far from ideal, robs many of their childhood and eradicates that fundamental freedom from responsibility which is essential to experiencing childhood to the full.

But I would argue that responsibility is two-fold. Whilst yes, the parent is at all times responsible for his or her child, there is no reason why an older sibling should not help. Their level of responsibility is no less valid and can bring huge benefits. The older sibling gains a feeling of importance, a boost to their sense of self worth and a valuable enforcement of the links which bind them to their family.

In a society where the focus is too much on the self, too much on individual rights and needs it is essential that children are taught they have a role within the wider world, and that role exists on several levels. The early stages in social connectivity start at home, within the family. Helping Mummy carry out simple chores can be fun, helping the child feel involved and valued. My toddlers helped fetch simple items, put their bowl in the dishwasher, pick up their toys etc. This has also had the added benefit of teaching basic life skills, and an awareness of all that is involved in day to day living. At no time did I make any of them feel the outcome of such tasks had a bigger purpose, of that this simple type of responsible helping had any connection to Responsibility for the outcome. (capital "R")

As children grow up they need to learn - want to learn - that they can influence their surroundings. Not by asking for new toys, TV programmes and sweets, but by being actively involved within their family and later, in the wider world. This is enforced at school - even in Reception children are given simple tasks and praised for their efforts. The child who feels they have no means to increase their self esteem by participating in helping others seeks to boost it in other ways, valuing objects and gain instead of interaction with others.

And it works both ways- the grandparent who gives of their time, involves their grandchild and values their presence will gain far, far more from that relationship than the one who seeks to maintain a strong relationship by focussing on the child's needs. Teaching children - however young - that we all have needs is vital. None of us exist in isolation and most human beings are happier interacting with others. It saddens me that too many children are put on pedestals, showered with gifts and wanting for nothing. They exist on the edge of their families, or above them, not an integral part of a solid unit.

It is really only recently that the very idea that siblings might have a choice in helping has existed. Historically older siblings have always helped out and derived a huge amount of pleasure, satisfaction and pride in doing so. Maybe the fear of siblings feeling weighed down by too much responsibility has pushed us in the opposite direction in a knee jerk response. But responsibility is not a dirty word! What matters is that it is always preceded by the word "appropriate".  There is a reason there is no minimum age for children to babysit. A parent is always Responsible, but children can still learn responsibility.

If you partition a family into several individuals with unique needs rather than a group they easily lose interest, concern and sometimes even respect for other siblings/family members. Helping out is the glue which holds a family unit together, I think any kind of family support should be instinctive, encouraged and expected. There is far too much consideration of individual rights these days.

For us however with at least one member on the Autism Spectrum this is profoundly difficulty. Autism has sometimes been termed "Selfism", in that Autistic individuals find empathising with others acutely difficult. But high functioning individuals can and do learn to be a cog in a bigger machine, it just takes time and effort. We struggle hugely with this, and all too often fragment into a group of individuals rather than a family unit. But it is something we focus on whenever possible.

And that's where that word "appropriate" comes in. No one shirks responsibility, and helping out improves family connectivity and overall happiness.

 photo letkidsbekidslogobadge_zps424b7d61.jpg

Sunday, 17 August 2014

End of an Era

Last Thursday I lost one of my dearest friends. Words cannot describe how lost and desolate I feel, without my furry companion of nearly eighteen years.

He preceded all my children and my husband, the only member of the family to have lived with me in  all five of my homes. He was my friend, the most loyal cat in the world. 

In fact, in many ways he was more of a dog, with a personality far too big for his not-so-small (once) 7kg frame! He had been ill for a while - and eighteen is a great age for a cat. But knowing it was coming hasn't made it any easier. I have so many memories to treasure, and wanted to record them here to return to in future. 

Thursday, 14 August 2014

Missing the point?

I've read many wonderful tributes to Robin Williams this week - a true acting legend and comic genius. (There is a short biography here.) Films such as "Dead Poets Society" and "Good Will Hunting" had a profound impact on my adolescent world view, and his role as the Genie in Aladdin was one of a kind. A hugely talented man - yes, but the international outpouring of grief appears to be ignoring the elephant in the room.

Image courtesy of Tom Curtis /
Which is particularly pertinent since August 12th (this week) was World Elephant Day!

Mourning this loss of greatness is vital, Williams gave more to the Hollywood film industry and those who loved him than most actors of his time. It is said that his severe depression led him to commit suicide, and I am pleased to see a drive on social media to raise awareness of depression as the very real illness it is, and to highlight the appalling impact it has on the lives of sufferers and their families.

There are many people who still believe that you can "think yourself" out of depression. That it's a life choice. Those people would most likely have supported medieval practices of blood-letting to cure all ills and rebalance the body's "humours" or the belief that women were impure after childbirth and needed to be shut away until they could be "churched". Such views of metal illness are as outdated as this and there is simply no excuse for them to persist.
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