Friday, 11 April 2014

The Squeakiest Wheel

So I know you’re probably sick of my rantings about the injustices of raising a special child, and I can imagine some of you thinking that it really can’t be as bad as I make out, that surely in the year 2014 we’d have some near decent provision for special kids in our community. You’d think right?

I recently took all four kids to the Oceanarium in Bournemouth. It’s currently school holidays, which, incidentally, makes me want to throw a flailing tantrum and bail on life for two weeks; something I resist strongly until my husband walks through the door at the end of the day. I hope he knows how lucky he is to have me ;) The Oceanarium is one of a handful of places I can take all four kids by myself; small enough to let the girls free range while I shadow B, with enough entertainment for a good hour or so. That plus the journey there and back, usually on the peasant wagon due to S needing the car for work, means we can kill about half a day. Genius.

At the moment B has a penchant for smacking people. We have to give people an extra wide berth while pushing him in the buggy due to his insane Go-Go-Gadget-Arm ability; he’ll reach out and touch (hit) everything as we pass by. Honestly, I think it’s another stage of development- have you ever seen a mum trying to shop with a toddler in tow? Don’t touch! Put that back. Stop fiddling. Don’t poke a hole in the chicken packet. The bubble wrap is very cool but not for popping. I know they look like balls but we don’t launch apples across the shop. That milk is too heavy for you to- oh, let’s move along, quickly. No, the toilet rolls are not soft play. You catch my drift…Now it’s kinda cute when a very small person waddles up to you and grabs your bag or your skirt; you smile and gush, the parent apologises, and the oblivious child toddles on their merry way. When that toddler masquerades as a six and a half year old boy people’s patience and tolerance seems to rapidly dissipate. It does have it’s funny side for those lovely people who choose to laugh though; I had a good bit of banter with a guy who mistakenly thought he’d got lucky with a PDA from his wife but actually experienced a B special- direct hit, point blank butt range. No such luck Mr Middle Age, work harder on the wooing perhaps.

B has no sense of personal space either, which I have found to be a big problem when out and about. Inebriated dyspraxic zombie just about sums it up nicely. And the thing is, I’m not sure quite what to do about it. Only ever venture out in the dead of night when no one is awake? Keep him restrained in his buggy the whole time? Answers on a postcard please. The nastiest reaction I’ve had was from a lady he barged into while running over to his favourite fish tank in the oceanarium. She looked at him like he was something on her shoe, scooped her child into her bosom and shot me a scathing stare. Ouch. I normally have some quick-witted response up my sleeve for such situations but I was so wounded by this woman that words utterly failed me.

So, even in one of the few places accessible to us as a family, I still have to contend with people’s judgmental ignorance and opinionated conclusions on my ability as a parent and on my children’s behaviour, and their brazen gawping when B’s conduct splurges outside of their nice neat normality prejudices. Whatever the hell normal is. Answers on a postcard please…

I still, wherever I am, have a major issue when it comes to changing him. I need to find the girls to let them know I’m nipping down to the loo, I have to go and collect the change bag from the buggy, and then I have to negotiate a slow and stubborn, or fast and furious (it all depends on the day, or the weather, or some other unfathomable reason as to which) B down to the baby change. Therein lies the fundamental problem. B is not a baby, and yet the only facilities for changing are baby ones. The bizarre presumption that all disabled over-2s are toilet trained is a poignant reminder that the remnants of a society where disability was shunned and hidden are actually much more prevalent than we imagine.

No doubt the Daily Mail would instantly run an incensed press story if McDonalds suddenly decided to demolish their toilet facilities in favour of more seating. There’s actually a lot of law on the provision of toilets in commercial public use buildings, and the only disability regulation I could find included in the swathes of legality was the requirement that places make ‘reasonable provision.’ Reasonable is not a word that should be used when writing regulation and law; it’s highly subjective and wide open to interpretation. The real-term result? Shit provision for disabled people, in turn leading to increased stress for carers, in turn leading to less disabled people accessing mainstream activities, in turn leading to an inaccurate perception of the proportion of disabled people in our communities. And as we all know, out of sight so often means out of mind. People who are out of mind don’t get a look in when the funding is dished out by the local authority. Potholes and press coverage though, now that’s a different matter.

It’s still as true today in 2014 as it ever was, that gem of a phrase; the squeakiest wheel gets oiled first. The problem with that is we get fed up of squeaking. Squeaking takes energy. We are knackered, too knackered to shout. And we do feel like a bloody broken record, as though people will get pissed off by our persistent whining. Unfortunately it seems like we need to press on in our quest. 2014 does not in any way offer equal opportunities for lovely people like my boy, and until that happens our community needs to keep squeaking. Oil the wheel baby, oil our wheel.

Wednesday, 26 February 2014

Be The Voice

I watched something on Facebook today that made my blood boil. And before you ask, no, it wasn’t the latest fake Justin Bieber marketing scam or the pop-up ads presuming that because I am female and not a size zero I clearly have suicidal tendencies induced by lack of self esteem. Although those do come a close second. It was this: A hideous example of everything that’s wrong with provision for additional needs children in mainstream school; in actuality, a hideous example of how NOT to teach, in my opinion. A child of eleven, stuck in a classroom chair and left for at least ten minutes is bad enough. For a significant and responsible adult in charge to then film the incident takes it to a whole other level. Add in that this child also has autism and I genuinely wonder what the world is coming to. If any one of my children (‘normal’ or otherwise) was ever treated in that way I would have serious self restraint issues in not marching straight in and making my point with my fists and multiple profanities. Well, c’mon, you can take the girl out of the chavvy life, but you can never totally take the chav out of the girl ;)

The event itself is enough to shock and worry most parents and carers out there regarding the safety of children in school, but what astounded me the most was the lackadaisical response of the parents at the school where this occurred. If you watch the report you can see a father defending the actions of the teacher, and then later a mother claiming something along the lines of things perhaps being taken out of context. Tell me please; in what exact context is it OK for a child to be trapped, filmed, and asked if he wants to be tasered in front of an entire classroom full of peers? Am I missing something? Shift this to an adult based workplace context and I’m pretty sure someone would have a lawsuit on their hands; I mean this is America after all. The seemingly widespread apathy and even support for the teacher suggests an underlying remnant of culture we have worked so hard to erase; something ready to rear its ugly head at any given moment. Prejudice and discrimination to those who we perceive to be weaker than we are.

A very good friend rightly pointed out that we don’t know the bigger picture relating to this student and the situation, and I’d like to make it very clear right now my intention to speak out for the welfare of the child, and others like him, rather than waste my time vilifying the teacher involved. As a parent of a non-verbal child reports like this jump right out and punch me in between the eyes, a harsh reality check of the absolute and total vulnerability my boy is subject to every day when he leaves my side. Truth be told, it scares me to death sometimes. If I dwell too long on it horror scenarios tend to play out in my overly `active imagination; but I’d be living in fantasy land to think that my child is completely safe given he has no means of communicating to me what has happened during his day in my absence. All parents know that worrying comes with the territory, from the kids’ friendship choices to how many peas you’ve managed to coerce them into eating at dinner; from is-this-rash-a-deathly-meningitis-rash to have-they-permanently-tattooed-themselves-with-that-random-lone-Sharpie. You know something? I’d love to stress about those things for B. Because having cause to worry about those things would displace my current worries; the ones where I wonder exactly where that huge bruise has appeared from, or if anyone has treated him roughly that day, or why he has come home distressed, pinching, scratching and biting everyone in his path, or why he is screaming so much at situations he could normally handle. As such I must have the utmost confidence in the people I choose to care for my precious boy, which is why reports like this strike cold hard fear into my normally warm and fuzzy heart. The parents of the boy in this video were understandably upset at his treatment, and yet other reactions were apathetic. Maybe the boy is a known troublemaker at the school. Maybe the teacher is an excellent role model in all other areas of education and life. Maybe parents don’t want their school district attracting ‘that sort of attention,’ and so play down their reactions. In my opinion, none of these reasons hold weight in the tolerance and acceptance of such actions by a professional in a role of authority towards a child, let alone a child with a diagnosis of autism.

I need to know there are people in this world who will be B’s voice. As special needs parents our community so desperately need for regular people to advocate and raise awareness of potential harmful behaviour that could negatively affect our children. We are tired of people judging us, we’re tired of the lack of empathy and understanding; we’re tired of fighting for everything. Turning a blind eye or looking the other way when things like this happen is so dangerous for our kids. We need you. Like a desert needs rain, we need you. Please help create a safe world for our kids to play and grow in, more than tolerance; acceptance and advocacy for the most vulnerable among us. That way, we all win.

“There can be no keener revelation of a society’s soul than the way in which it treats its children.”

“A nation should not be judged on how it treats it’s highest citizens, but rather how it treats it’s lowest.” Nelson Mandela

Monday, 20 January 2014

Ash Monday

So today it’s been exactly one year since Mum had to go. 12 months. 52 weeks. 365 days. 8760 hours. 525600 minutes. Not one of those days has passed by without my thoughts turning to Mum, gravitating towards her like plants stretching for the sun. I used to worry about waking up one day having forgotten her face or the sound of her voice, until I realised an important truth. Part of her will never be gone; she’s embedded in me and H to the core of our beings. Her genetics, her passions, her personality, a technicolor inheritance of humanness imprinted on our hearts.

She was a beautiful soul who left an enduring footprint on this earth. The people whose lives she touched were varied and many; remembered for her smile, her love, her helpful heart, her incredible creativity, her passion for those others found too difficult and her crazy sense of humour. Her fifty four year journey here took her through wintry wastelands and sparkling summers alike, but the constant determination to carry on walking regardless is what inspires me the most. There were times she skipped freely, and times where it literally took every ounce of her being to drag her feet in line with her heart, but she made the choice to keep on keeping on. I’m eternally thankful to her for leaving me that gift, for showing me that whatever shit life hands me, I can choose to keep walking. I want to journey well. Not fast, but well. I want my footprints to count and leave a trail for those that follow. I don’t want to arrive at my destination without having changed my journey for the better.

Today we scattered mum’s ashes. It was another one of those surreal out of body experiences which left me feeling like I am definitely not a proper grown up yet. I got the giggles when we rocked up to the funeral director’s to pick mum up and they handed us a green plastic milk bottle container. True story. In fairness, it was in a very classy matching green gift bag, but my preconception of a ceramic pot with one of those space age metal discs with holes on top was blown completely out of the water.  Apparently you have to pay for the privilege of a sturdy ash-holder.

Armed with the ashes, we picked a peaceful spot by the river near where we grew up. It seemed a perfect place; sometimes mum took us down in the springtime after school to watch the new cygnets splashing about in the sunshine. A lovely place with some lovely memories. Thankfully it wasn’t all that windy today so no local fishermen were subjected to a face-ful of Lozza interrupting the tranquillity and putting them off their game. Maintaining a sense of occasion we recited a poem (for those of you not familiar check out my other blog- Don’t Grieve For Me) that I’d written this time last year, and we respectfully poured mum into the fast-flowing river waters. (At this point I’d like to plead ignorance to any officials reading this if we’ve inadvertently breached some sort of health and safety law. We honestly didn’t know. Really. Please don’t arrest us.) The flow of the water served as a pertinent reminder of the freedom mum now has. No more slogging out the journey, just a beautiful release.

Apparently us Brits have an average 77 years on this earth. 924 months. 4018 weeks. 28123 days. 674968 hours. But the reality is, nobody knows when their time is up. Each and every hour is a precious opportunity to leave your mark, good or bad. Mum left a legacy of love. What will you and I leave behind when our life-clock stops?

Dance like nobody’s watching.
Love like you’ll never be hurt.
Sing like there’s nobody listening.
Live like it’s heaven on earth.

Carpe Diem friends. Carpe Diem.

Thursday, 28 November 2013

November Cheer

November Cheer

So it’s nearing the end of November and we’ve been corporately bombarded with Christmas for almost a month already. Shops are decorated, celebrations are in full swing and general Christmas paraphernalia abounds everywhere. Unlike our American friends, we don’t have the hurdle of Thanksgiving to jump before we can legitimately reason that Christmas is upon us, and as such decide the season needs to last a full two months to really make it count. We must at least feel like we’re getting value for money given the amount we merrily wave off every December.

Don’t get me wrong, I’m no scrooge and can generally turn any event into an excuse for an all-out party, but as a parent I resent that Santa materialises from the North Pole (or Lapland, or wherever he actually lives) a full six weeks before December 25th. Is his heating broken? Has he employed an army of machines to replace his politically incorrect elfish helpers and finish two months ahead of time? Or maybe he’s just fed up of Christmas, getting some twisted satisfaction from watching parents wearily endure the run up to the big day through gritted teeth and semi-patient smiles. The poor guy’s an immortal mythical figurehead. If he’s had to do it for the past two thousand years then why shouldn’t we suffer for a couple of months? Mrs Santa’s Christmas cake sucks too, so I’ve heard, but given the nature of his ever-afterness he’s had the wisdom to keep quiet on that front. Crappy cake consumption beats an infinity placating a grumpy wife hands down. Wise man. Oh hang on, sorry, that would be the nativity.

Call me old-fashioned, but the idea of my kids writing a list of things they want to receive on the big day hugely bothers me. The fact that they then send it to a far away fat man who never seems to change his clothes is beside the point; my issue lies in breeding a Christmas culture of inward focused expectation and greed in our next generation. In what other context is it acceptable for children to make a list of demands with the presumption they will receive everything on said list. I’ve witnessed far too many ugly scenarios involving meltdowns induced by the wrong present; or stressed parents in supermarkets panicking because the 156th item on their child's list is sold out.  

In short, I would love my kids to understand that Christmas is as much about giving as getting.  

Before you start pelting me with rotten clementines and calling me a humbug I’ll just clarify: creating that magical spirit of Christmas is right up there on my parenting priorities. Decorating the tree together (however long we spend it STILL ends up looking like we’ve tipped it upside down and dipped it in a random array of garish glittery tat). That wide eyed moment of wonder on Christmas morning when the kids realise Santa has visited- especially surprising given the countless fake North Pole phonecalls threatening transfer to the naughty list, the tangible magic in the air on Christmas eve as the waiting reaches it’s tantalising climax, and the delights of the chocolate coin breakfasting. All incredible childhood memories I want my kids to treasure up and remember with fondness in the more difficult times of life.

But also up there on my parenting priorities is raising children who derive genuine pleasure from seeing the fruit of their thoughtfulness and effort with others; whose smiles are sparked by the smiles of friends and who enjoy the giving part of Christmas just as much, if not more, than the receiving.  After all, isn’t that what the true spirit of Christmas is all about? Cosy family togetherness, hope in the darker season, and a radiant sense of wonder and joy that miraculously dissipates  (albeit for one month only) our typical cantankerous Britishness.

So Santa, while I appreciate your yuletide efforts and behaviour bribery opportunities, I would ask this- don’t sell out to the corporate masses and let them twist your traditional spirit into another commercial selling opportunity. We parents are shamefully sheep-like when it comes to peer pressure; that coupled with the doe-eyed pleas of our little darlings weakens our resolve to stand up for the true spirit of Christmas. Could you help us out a little by keeping away from our shops and off our TV screens until at least December? That’s the one and only wish on my list. Thank you.

Until that happens, here’s a little motto I keep in mind when buying presents at Christmas. It’s guaranteed to make your gifts more thoughtful and your kids less spoilt, and will probably have a great impact on those January blues as you realise your wallet’s looking fairly healthy come New Year. Oh and teachers will LOVE you for the last part. J

Something you want.
Something you need.
Something to wear.
Something to read.

Happy Yuletide prepping guys.

Tuesday, 19 November 2013

Once Upon a Time

This is a pretty deep post, hugely personal but also something I think the world needs to hear about more. In essence it speaks of abuse, and how that abuse does not affect only the victim, but spreads like a ripple effect into the lives of all those surrounding her. This is in tribute to my mum, a beautiful soul who was abused in the most horrific way imaginable. Please read if you are able, and please please, if you think for one second a child you know may be experiencing abuse, speak up. You may be the voice they just don’t have.

Once Upon a Time

Once upon a time there lived a beautiful Princess Child. She lived in the Land of Love; a place full of springtime joy and colourful summer. Birds sang, their magical music adding depth to the already saturated kingdom. Princess Childs’ hair shone like the moonlit night, her eyes were small sparkling oceans and her face radiated warmth and sunshine. Like all the other children, Princess Child was special and unique; her golden heart made her precious like no other and she had big exciting dreams of her future in Wide Wide World.  Family was her safe place; her home was her comforting castle and she loved her brother and sisters with all her soul.

One day, when Princess Child was still very small, a terrible storm hit. Brooding and black, the storm whipped up fierce electricity- words sparked and anger flew, plunging her safe sanctuary into dangerous darkness. Princess Child and her brother and sisters felt scared as fearful fingers enveloped them. When the storm finally lifted the castle stood in wreckaged ruins and their father was gone. Princess Child’s world had been broken, and through her child’s eyes she saw only a bleak grey landscape where there was once such vibrancy and life. Wide Wide World looked so very different, but she still had her dreams, holding tight to them like bright stars of hope in the dark night. Her mother struggled to look after Princess Child and her siblings; her heart had been stolen by the storm, taken with her father and replaced with stone. Harsh words rained down alongside blows of frustration and even the umbrella of her dream-world couldn’t stop some of those words sticking to Princess Child; ugly labels on her soul. Worthless. Stupid. You-Should-Never-Have-Been-Born. A faded reflection now stared back at her from the mirror, a whisper of the beautiful joy that once was. In reality, Princess Child was as lovely as she had ever been, but the mirror of self distorted her image through a cracked lens of despair.

One day, Princess Child escaped her ruined castle and met another little girl. Sparkle Girl lived in a corner of the kingdom that had escaped the furious storm, and her lighthouse glowed so brightly Princess Child almost forgot the darkness. Sparkle Girl scattered goodness and warmth wherever she went, and soon the two children were inseparable; their friendship a welcome anchor in Princess Child’s turbulent life.

The infants grew, their time together like pocketfuls of sunshine, until they found themselves to be awkward In-Betweeners. Embracing the next step on their journey in Wide Wide World they were no longer children, but not quite grown yet either. This was the exciting time when dreams glimpsed reality, when Princess Child could dare to imagine an adventure outside her dark tempestuous childhood. But alas, this was never to be.

Monster Man had watched Princess Child for some time now, his eyes hungry and his belly craving fire. He was captivated by her innocent beauty, those sapphire blue eyes and milky white skin drove him to the brink of desire like the animal he was. He had to have her. She filled his thoughts, consuming his mind with twisted longing, as he set about meticulously planning his attack with cat-like precision. And then he waited. Waited for his moment to pounce.

Princess Child was fourteen when Monster Man first broke her.  Callous, cruel, depraved acts which robbed her of the small amount of dignity and worth she had left. Cowering in fear she summoned her dreams as he methodically shattered every last piece of her spirit. But the things he did drained her vivid dreams to a drab faded grey. Things too awful to speak of, Monster Man stole her heart and embedded himself in its place. The shame was overwhelming, the suffocating weight all but crushing Princess Child. Somewhere deep inside herself she found steely determination; a strength she never knew she had. And she carried on, not because she could, but because she had to. She needed to survive.

The contentment lasted for a while but faded fast, leaving Monster Man more empty and dangerous than before. Each encounter acted as a drug, fuelling his addiction and leaving him desperately aching for more. Deeper and deeper into the dark he fell, until nothing else mattered, nothing else but having Princess Child. He didn’t care about the pain he caused; in fact the pain thrilled him. His warped normality became her living hell right up until the day she disappeared and slipped from his grasp forever.

Princess Child saw Monster Man everywhere. Lurking in the shadows he waited to strike, each time taking another piece of her, her heart slowly drowning in the dark. Summoning every drop of strength left she tried to shout, but her muted screams for help fell on deaf ears. Finally she ran, leaving her past and pressing forward to her future.

With every step she took Princess Child buried another memory in a frantic attempt to wipe her childhood clean. It seemed to be working and in time she met the love of her life, the man who brought the long forgotten sparkle back into her world. Prince Charming was the most beautiful thing Princess Child had ever seen; with shining eyes he wrapped his blanket of promises around her and she finally felt safe. The whole town flocked to the fairytale wedding and celebrated the union of the Prince and Princess.

A few years passed and the couple welcomed two gorgeous baby girls into their lives. Red was a cheeky, outspoken little thing, while her sister Goldilocks wooed even strangers with her adoring smile. The Prince and Princess worked hard to build a home for them. Not an expensive castle, but an asylum from the world- a place they could call their own. Happiness reigned. Happiness reigned the same way calm reigns before a storm.

At first his visits were so fleeting and brief Princess Child wondered whether she’d imagined them; fragmented remnants of yesterday that confused and muddled her. Monster Man was back, fighting his way to the surface of her mind, and with each visit the memories crystallised into painful shards, wounding her all over again. He inhabited her dreams, bringing with him a blackness; a quicksand of despair which sucked her deeper and deeper. The more she fought it, the more trapped she became; reality slipped from her grasp as she scrabbled frantically against Monster Man and his new reign of terror. She tried everything to remove him from her head but his power held fast. Prince Charming tried his hardest to help, but his weakness won, leaving Red and Goldilocks alone as they battled their mother’s demons. They grew up fast, learning to look after Princess Child, now a husk of her former self. Years passed and Princess Child still could not escape the grip of her tormentor; there were times she hurt herself and times she tried to leave this world altogether; the release of death sweetly tempting in the chaos of her mind. Monster Man had branded his kiss of doom onto her soul, and no matter how hard she fought, her strength still bowed under the weight of his abuse. Despite this, she loved Red and Goldilocks with all her heart. They were the candle in her gloom, the one ray of sunshine in her weathered existence. The smiles she shared with them were precious gems and Red and Goldilocks stored them up in their tiny treasure chests.

And then one day, Princess Child earned her freedom. After fifty-four years of breath she was granted her last, and the deicious release of death rendered Monster Man powerless once and for all. Red and Goldilocks watched as their mother grew her wings, finally free to dance. The tears they shed were only for themselves, their sadness tinged with bright thoughts of hope for Princess Child. They vowed to stand guard against Monster Man, knowing how easily he reared his ugly head to cause heartache and grief. It would stop here. The shadows of yesterday would not shape the landscape of today.

The cycle will be broken.