Thursday, 28 November 2013
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
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.
Wednesday, 13 November 2013
I have this mate C. Whenever we get together, ridiculous things happen- I’ve come to expect it as a universal law of physics. If you put us into a formula we’d look something like this: L+C=chaos squared + tears of laughter. She is the only other person I know whose children are genuinely as crazy as mine, and who isn’t afraid to embrace the madness.
C came to visit in the summer with her two lovely girlies. Her girls and my girls get on like a house on fire and we were treated to a spectacular array of theatrical talent throughout the morning, mostly based around a very original version of the Harlem Shake. One which I add, I had to pull from all public social network forums since my eight year old decided rubbing her bare chested nipples while gyrating her hips wearing pants on her head constituted a decent dance move. Even worse, when C asked where she learned such groovy moves her response pointed straight at me. “That’s how mummy dances.” For the record, I don’t think I gyrate quite as ferociously as she did, and the occasions I have she would definitely NOT have been there to witness it.
Onwards and upwards; our picnic under the apple tree proved to be more than civilised, except when it came to eating the chocolate cake D had so lovingly crafted that morning in honour of our guests. The effort did not equal the payout. As she presented us with her dry cocoa brick we exchanged glances while struggling to hold it down like some insane rival cream cracker challenge. You know the one- how many cream crackers can you eat in one minute? Sounds easy, but is very difficult my friends. This was the chocolate version. Which made it in no way any less disgusting. The other kids didn’t seem to mind though and three cups of tea later we were almost back to normality.
C lives in a London suburb so the beach (unless you count the small lake near her house) doesn’t feature frequently on her agenda. As such, whenever she visits we try and get down to the seaside to build sandcastles, paddle in the sea, eat sandy ice-creams and engage in other jolly British escapades. One small problem- C had forgotten her swimming costume. Ever the helpful friend I offered her one of mine. I did warn her it was an M and S special- one of those suck-you-in-and-make-you-look-three-stone-lighter jobbies; that and it was also a size 16. Offering your size 10-12 friend a size 16 swimsuit with no explanation would have seemed rude, so I did re-iterate on a number of occasions before loanage that it was indeed a very tiny size 16. C looked at me with disdain before disappearing into the bathroom to assume the aforementioned attire. A few grunts later and she emerged, agreeing wholeheartedly that this was actually a stealth size 10 costume which had obviously evaded the tight quality control procedure before leaving the shop. She did however point out one advantage- she definitely wouldn’t be peeing in my swimsuit in the sea because there was no way on earth anything was escaping the squeeze of that suit.
Leaving the boys at home we bundled children into the fun bus and drove down to Durley where a thoroughly British time was had by all. Waves were jumped, ice cream was dropped, tears were shed, and incredibly no small children were drowned. As we settled down on the sand to eat our chips the phone rang. I picked up to a distressed and slightly drowsy sounding S; apparently he’d sliced his finger pretty much off, needed to go to A and E and wasn’t sure whether he’d be able to look after B safely for the next ten minutes in case he blacked out (seemingly a regular feature of S-trauma).
Chips, children and a good proportion of the beach packed in the car, we sped off 999 style to come to the aid of Broken Husband. On arrival home we were greeted by our doctor friend who was at the house in case of faintage and who offered to take S to the hospital. Brilliant.
Thankfully the kids had been fed at the beach, so that was one less thing to think about, but a chaotic scramble ensued as everyone entered the house and evidently became desperate for the loo all at the same time. Myself included. C hopped around trying to hold it in while I verified the specific nature of the kids’ toilet needs. As soon as C knew they all needed to drop the boys off rather than spend a penny she shamelessly queue jumped and barged in the bathroom first, leaving several small people clenching uncomfortably outside. She’s learned firsthand that my kids take an insanely long time in the bathroom, and she just wasn’t prepared to wait it out. I took her lead and rushed outside- four kids later and my bladder is not what it used to be- expertly squatting under the apple tree while trying my hardest not to pee on my trousers. Guys, you do not know how easy you have it with your instant access mini hosepipe attachments. I think there is something called a She-Wee for ladies, although I’m not convinced. Anyway, I digress…. C made appropriate apologies to O on discovery she was in fact telling the truth when she reported ‘Mummy is weeing under the apple tree,’ and shortly after that all hell broke loose.
“The toilet won’t flush mum,” came the shout from the bathroom. I rushed in to see the mother of all messes sat right there in the toilet bowl- you’d be surprised how much poo four relatively small children can produce. They’d seemingly tag teamed with no interim courtesy flushing, resulting in a foul smelling blockage. If at first you don’t succeed, try again right? Wrong. If the toilet won’t flush, DO NOT under any circumstances attempt a second flush. The result? A rising sense of panic accompanied the rising poo soup in the toilet. ‘C!’ I shouted through to the kitchen, ‘We have a definite SHITuation.’ Dutifully C came running and immediately took firm control of the foul-smelling farce. Eyes glinting she yelled for a coat hangar, but I was too busy with my retching hysteria to comply. She took matters into her own hands and ran upstairs, rooting through wardrobes until she appeared triumphantly back in the bathroom waving her weapon. Her deft fingers worked quickly to transform the hangar into something resembling those hook-a-duck tools you get at school fairs. Except this was hook a turd. ‘You flush, I’ll poke,’ came the instruction, and we both cried with nervous laughter as we watched the brown sludge reach the tide mark of the bowl and time slowed down as we contemplated a breach. Thankfully though, C’s plan worked, and apart from the one stray floater still whirling around the pan, the crap crisis was narrowly averted.
S returned home shortly after with his finger properly stitched, and we settled down with a well deserved Chinese (which definitely did no favours for C’s size-16-swimsuit complex). But it tasted great. Everything except the sticky brown crispy beef that is……
Wednesday, 6 November 2013
First up, apologies for the length of time that’s passed since my last post. The summer was crazy, my youngest has since started school and we’ve tackled one small family crisis after another for the last few months- as you do. Business as usual then.
Excuses aside, I’d like to put a disclaimer out right here. This topic is something close to my heart, and is in no way meant to insult or guilt trip you lovely people; but rather inform and educate from the perspective of those of us living in the parallel universe of disability. The biggest hurdle we face as parents of special kids is an ignorance and lack of education on behalf of the world. These barriers infiltrate our everyday; irksome diversion signs on this long haul journey to destination unknown. Take a walk in my shoes for a while….
Five things you should never say to a special needs parent….. (and a few things you should)
1. God only gives special kids to special people, and God never gives us more than we can handle.
Top of my list are these two gems- more often than not they come together, like the bread and butter of awkward conversation. Whilst I understand the inherent need and heart behind offering kind sentiments intent on comfort and explanation this is, quite frankly, bulls**t. Let me explain. Cleaning poo off every exposed surface in your house. Stopping your child from making himself sick when distressed. Advocating for your child 24:7. Permanent sleep deprivation. Wishing every day to hear one precious word fall from his lips. These are a few of the ingredients for Recipe Real Deal. I know of many families for whom the strain of raising a disabled child has been precisely too much to bear- marriages have melted in the heat; children removed from their homes for the safety and sanity of all concerned. Thinking further afield are you telling me the child in sub-saharan Africa who dies of malnutrition, or the Eastern European teenager trafficked into the sex industry were not ‘given’ more than they could handle? People everywhere find themselves dealing with situations no human being should ever have to bear. Shit happens, let’s just call it out. Our journey is rough, and it definitely IS more than we can handle. We are not superhuman or better than you; just because we have special kids doesn’t make us special. We’re wading through this muddy swamp the best we know how, and when you row past on your kayak of good sentiment, it hurts.
2. I couldn’t do it.
My problem with this little phrase is the embedded assumption that where you couldn’t, I could. The reality is this- we really can’t. We really can’t, but we absolutely have to. There are days I want to run away and start again, days where the daily grind crushes me to powder. But the fallout if I choose out is too dire to think about. Could doesn’t come into it- if you had to, you would.
3. It’s probably just a phase- he’ll grow out of it.
Oh. Dear. Lord. This one has me sitting on my hands so as not to publicly facepalm and embarrass my fellow conversee. As humans, difference seems to sit uncomfortably and we automatically try and bridge any gaps with a jolly fix it comment. Firstly, no he will not grow out of it. B has a rare chromosome disorder, for those of you who skipped biology in high school this means his disability is in every cell of his body. Hardwired, if you will; however much Miracle-Gro I feed him won’t change that fact. Other disabilities are similar. Take autism, for example. Copious research has shown autistic brains to be routed differently from the start. Special needs parents are in a constant state of grappling with reality, and reminding us so harshly of what is NOT true for our children does nothing but delay this process. We’re dealing with the differences- please join us in that too.
4. My mother’s brother’s cousin’s neighbour’s dog owner’s child had special needs. I know exactly what you’re dealing with.
Er. Never, ever say this. Period. Some of the more sensitive among you will have your jaws on the floor right now, but in actuality this is a phrase many of us have heard before (interchange the people as necessary!) However much you THINK you know about our lives, you know very little. Whatever your ‘experience’ level, unless you too are on this journey you’ll only ever have sideline viewing, and that’s OK. You know the facts we are comfortable sharing, the prettily-packaged-digestible–to-the-general-public-bits. We’re already so very isolated on this road, the last thing we want is to be labelled the ‘needy obsessive one’ in the few social circles we do manage to turn in. It takes a lot for us to share, and so we filter. You know when you watch a 3D film and you’ve forgotten your glasses? We have the specs.
5. It could be worse
This little throat punch is especially troublesome- to be told things could be worse means that we have already made ourselves vulnerable by letting you in on some struggle or another. (But you’re right, my foot up your rear may worsen things for you today) Seriously though, as soon as you say this to me, a mental note gets scribbled as I shift your name from the safe list to the guarded list in my head. We all need a bigger safe list, but for special parents that network of true friends is literally our lifeblood. Of course tomorrow could be worse, but that doesn’t invalidate my trials of today.
When I asked my network of special needs parents the cumbersome clangers people had dropped in conversation regarding their kiddies, they came up with the following. Big shout out guys, thanks! Hold onto your hats, these are all genuine quotes from no doubt well meaning people, along with some varying responses.
Can I touch him?
Gracious response: He needs hugs just like any other kid.
Ungracious response: Oh no, definitely not, he’ll break.
What’s wrong with him?
Gracious response: launch into educational chat about child’s condition.
Ungracious response: What’s wrong with you?
She doesn’t look any different to me.
GR: Not all children with a disability look different.
UR: You don’t look ignorant, but here we are.
She’ll eventually catch up/walk/talk/potty train etc.
GR: I’d really love that.
UR: Brilliant, an all-in-one therapist. Could you tell me where I can train for that?
Why doesn’t he talk?
GR: His brain is wired up differently.
UR: In all honesty, with comments like that, I’m wondering why you do.
But he’s so cute and adorable.
GR: I agree.
UR: His smile is magical, especially at 4am with poo all over his face.
Like I said at the start, this isn’t meant to shame or guilt trip you. Please don’t be worried to chat to us- having special kids has made us more thick skinned than you could know (and also developed a somewhat warped sense of humour!) But it would defeat the purpose of this post to leave you with a sour taste in your mouth; I want to leave you with a few truths and some practical ammo, a disability 101 of sorts. Here comes the sugar…
We are lonely. I always appreciate when someone takes time out of their busy-ness to connect with me. So often our lives get so sucked up in caring, advocating and fighting for our kids we have little time or energy left for anything else. If I haven’t been in touch for a while, apologies, you are an important part of my life and I need your input. A text, an email, a phonecall or even a letter go a long way to making life less lonely.
We’re copers. We cope because we have to, not because we choose to. Our alternative to coping doesn’t bear thinking about, but please don’t presume we’re coping well. A lot of the time we may present a surface calm, but underneath we’re frantically scrabbling to tread water. Ask how we’re doing and be prepared for an honest answer; be genuinely interested in our chaotic life; ask how you can help. Knowing people are listening is worth more than you can know.
We get forgotten. So often our family gets forgotten because the assumption is it’s too difficult for us to join in mainstream activities. People are also worried that it will be too tricky to accommodate our needs as a family, so often (through no ill intent) they don’t even try. We’re constantly thinking outside the box and being three steps ahead so we can function as normally as possible- after all we have three regular edition children in this dolly mix. All it takes is a conversation about how we can work it and chances are we can probably join in some way or another. Consider this the knot in your hanky.
Having a special child defines our family. This is not our preference, this is just the way our shit got dealt. Let us talk about it without fear of being labelled obsessive or needy. Offer to help. Be authentically interested in the progress of our kids without trying to whitewash the chaos. Love them with us for the unique and incredible people they are. Don’t offer us advice. Take time to connect and hear us- I mean really hear us. Be patient when our fighting spirit occasionally overspills to you.
But lastly, remember this. We love you, we need you, and you can be the difference between Concorde or Titanic. Titanic simply can’t be an option.