Friday, 26 September 2014

5 Popular Myths About Special Needs

Over the years I have really shied away from calling myself a "Special Needs Parent". After all, are not ALL children special in one way or another? But the biggest, most glaring reason for this attachment avoidance is the inner knowledge that there is actually no such thing.

There, I said it. It's out there..... the heresy that I live by exposed publicly.

But bear with me a moment, because there is a fundamental reason for finding allying myself with one particular group so unbearable. There is actually no such thing as a "Special Needs Parent". There IS however, such a thing as a parent of a child with special, or additional needs.

Confused? You're not the only one!

When I started blogging I quickly became aware of a whole group of bloggers who termed themselves "Special Needs Bloggers". This post is NOT a go at any of them, or even the group. It is however a personal justification of my utter inability to join that group, and a public challenge to the popular misconception that such a group actually exists beyond the nomenclature.

So what ARE "Special Needs Bloggers"?

In a nutshell, Bloggers who do an amazing job of raising the profile of their children's non-mainstream needs, focussing on the differences but also the wonderful contribution ALL children make to our society. Like the truly amazing  Hayley Goleniowska, who blogs at Downs Side Up recently writing for the Huffington Post on how wrong Richard Dawkins' opinions are on Downs Syndome and other disabilities.

Sounds pretty cool, doesn't it? So why on EARTH would I have a problem with this?!

Because... there is no such thing as a parent-type for those with special needs children. There are many, many types of children with additional needs and their diagnosis, symptoms and differences should never define them. Because parents the world over parent their children with little thought for labels, and identifying with a group as diverse as this is suffocatingly overwhelming as it is as disparate and inapplicable.

So we come to Myth number 1. 

1) All "special needs" children are essentially the same and provision can be broadly similar with no special training required.

Every child is different. Every child has different needs. Some of those needs might be medical, and some might be due to a learning disability, but there is no amorphous group you can join, you child will NOT fit the mould. Sorry.

All children are different even if they have the same diagnosis. I have two children on the Autism Spectrum. Well - currently one with the official diagnosis (been there got the T shirt) and one with a probable jumping-though-the-hoops as-yet-to-be-confirmed potential diagnosis. And I can tell you they are totally, utterly different. Chalk and Cheese. So providing for their needs at school won't be a one-size-fits-all ASD support package.

Whilst many rail against the closure of specialist Special Needs Schools, in many ways it was a fantastic step in a truly progressive direction. It recognised that there was no such cohort as "special needs children" and enforced the concept of "Every Child Matters" within the mainstream environment. It's not perfect, but it shows fundamental respect for individuality amongst children with additional needs.

2) A diagnosis will give you a passport for the future. A membership to a particular group with a common set of symptoms, difficulties, strengths and challenges.

You really thought that? Really? Because that would be oh-so-neat. Groups of parents who have similar children with similar or identical diagnoses are truly valuable. They offer support, advice and knowledge. But it's all subjective, and parents need to hang on to that. YOUR child is unique, and you must not allow any prewritten set of rules about the condition your child has define your parenting.

3) God only gives you what you can cope with. So Mums of children with complex needs must be due a sainthood.

Whilst there is (bizarrely!) a photo of me on the twins' school website on a school trip with a halo over my head, it was in fact a frisbee. I am as grounded as the next person, and certainly given to the odd sin every now and then. (She says with a glass of wine in hand!) Seriously though, I DO cope, but it's NOT easy. And I fall apart frequently. With style. Mums with children with special needs do not fit a phenotype, we all cope differently, some run, some are in denial, some find a home-based hobby to obsess about - some blog. But we don't fit a genre and are very, very different. And as for God.... don't get me started, but suffice to say I don't believe Job had any more choice than your average sleep deprived Mum of a child with a chronic health condition, and neither would have jumped at the chance to live that way. We do what we have to, what we can, and collapse in an exhausted heap at the end of the day.

4) You can always tell when a child has additional needs, or it's an excuse for poor parenting.

I shouldn't have to list this one - but you'd be surprised. With programmes like Holby City airing ignorance about hidden conditions it's no wonder Joe Public has such a hard time of it. Sadly, you can't. If you could, we would hardly need hospitals and X ray vision would replace most common place testing and children would be issued with a futures projection at birth. Groups like SWAN (Syndromes Without a Name) would cease to exist as everyone would SEE what was wrong. Don't let anyone convince you all disabilities are visible. They are not. And your assumption to the contrary brings acute pain and isolation to those on the receiving end. Every. Single. Time.

5)  Parenting a child(ren) with special needs is always tinged with sadness. 

Actually, this is utter rubbish. If you haven't read my Blog before, I urge you to do so. We as a family are certifiably nuts, living on the edge of normal much of the time with a warped sense of humour to see us through the worst times. My kids ROCK, and sadness is usually only present in my most melancholy moments when I'm deprived of sleep in the small hours.  No. Actually that's resentment.
Life is what you make of it - I consider myself hugely fortunate to have four children who excel at many things, and make me laugh on a daily basis. Usually for a good reason too...

6) Yeah. There is a 6. And no, it's not in the title.

Because however much I would like to differentiate myself and my family from any wider group I can't. The Special Needs community are a wonderful, diverse group of individuals with very different needs. But exist they do. With the likes of Richard Dawkins and UKIP seeking to persuade us that disability is an option the power of the Special Needs Community is truly significant. And this is precisely because it has no defining membership criteria. There is no written law, or future prediction which precludes YOUR potential membership from this community - and this is precisely why WE matter. We are all human, we all have needs and not everyone can be a round peg in a round hole. I hope you and your family can conform to the society in which we live, fit in and belong. But for the day that you might not.... remember.

We are PARENTS. Not SPECIAL Parents. Just Parents. Not different, not special, but parents of children who don't always fit the mould. Children who break free, children who reach for the stars in a different way. 

Amazing children.

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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 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.

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?

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