Rockin' Robin

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

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

Photo courtesy of Jacob Spinks on Flickr Creative Commons 

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

Cartoon from Some eCards

It's all gone Pear Shaped

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

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

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

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

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

Photo courtesy of Kiran Foster via Flickr Creative Commons

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

Is that totally unreasonable?

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

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

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

5 Common Misconceptions about Christmas

Seriously? Christmas? Already?

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

So what would my advice be for a successful Christmas?

• Know your limits - and your limitations!
• Start early  
• Keep everything low key ... and 
• Acknowledge the common misconceptions that invariably lead to disappointment! 

Failing all that wear a paper bag for the whole of December and pretend its not happening.

5 Common Misconceptions about Christmas

1) It's Merry

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

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

2) Giving is better than Receiving

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


3) It's precious Family Time

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


4) It's the Thought that Counts

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


5) It's White

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

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

Respite, Recovery, Recuperation.... and RAIN!

At home, this weekend was mostly this.....

Endless rain, flooding and a really narked guinea pig who had set his heart on a nice dry day with his patch of grass. Not one to defer to adult suggestion, and with an opinion worthy of a restrained cat he goes out in most weather - rain being his least favourite.

This weekend we had the wonderful opportunity to escape to a beautiful, brand new log cabin in Dunwich. And getting away from it all was *just* what we needed.

It's been a rough Autumn, far too much going on and no sign of the calm after the proverbial storm, so we seized the opportunity and prayed the rain would stop!

It didn't.

But this -

-was definitely better than sitting at home watching the patio flood yet again!

We managed to fit a huge amount in to our weekend away and returned feeling we had actually "had" a weekend.  You know, that feeling where you suspended reality and did something else, something almost forbidden, taking your eye off the ball to have fun. Sometimes, you just have to stick two fingers up at the ToDo lists, the ironing basket, the cooking.... and run.

It's no easy task getting away with our lot. One doesn't sleep before midnight, one wakes before six every.single.morning and any one of the above could wake during the night. There are a million reasons why staying home is usually easier/preferable/safe and I am the worst culprit (being the key facilitator in all adventures) for deciding it's all too much and we should just batten down the hatches and stay put. 

But that would be to miss out on all the memory making opportunities, the family experiences you can reminisce over in future years -not to mention the joke fodder for the months to come. We've certainly collected a few memories this weekend!

One of our highlights, from yesterday's visit to RSPB Minsmere, has to be our sighting of a Bittern - very rare, and yet so close! Apologies for the poor photograph, sadly I only possess an iPhone camera these days. if you are local, and are yet to visit the reserve is a real treat.

H had us in stitches in one of the hides on the reserve. Whilst admiring a twitcher's £5K 600mm lens he asked him if it's for taking Selfies! That boy's sense of humour is going to get him into trouble one of these days.... But we have all got the bird-watching and photography "bug" and will definitely be back.

So aside from the obvious fact that pretending we don't have a real drainage problem in our back garden, and that we might be starting cold weather rice trials soon in our very own paddy fields, there is the salient fact that sometimes "getting away from it all" is actually all you need to do to feel a million times better. So I would certainly add another "R" to that list - REFUELLED.

A letter to myself ten years hence.

Ever wished you could charter a Time Machine and have a little word with your younger self? You know, maybe warn them that that many candles burning all at once in a biscuit tin on the carpet in your student room was *bound* to end in tears?

No, me neither. It would spoil all the fun.

I mean, knowing the outcome to all those impulsive, frivolous, immature totally EPIC student activities would take the shine off your youth, wouldn't it? Certainly the scarily few frivolous and immature fun activities I enjoyed as a student stood me in good stead. It was the one time in my life I felt "free", whatever that means.

Going back a little earlier..... maybe. A good dose of common sense and "focus on what matters" might have helped during those fragile teenage years, but let's face it, I did pretty well at school and was never going to win any popularity awards.

But how about ten years hence? What pearls of wisdom would a fifty year old me impart to her younger self? I could cheat and ask my other half, having already hit the big 5-0 he claims to have most of - or at least the essential - answers in life. Perhaps not the ability to act on them but knowledge is power, right?

I suspect my letter from the future would go something like this....

Dear Kate,

Calm down.

Yes, the free-from quiche languishing on your kitchen work top with the surface licked off by an over-enthusiastic cat with delusions of her own importance might indeed seem like the end of the world.... but - really? I mean, what ELSE would happen to it? It's not as if the kids are going to EAT it, is it?

There is at least a 90% chance of it ending up in the bin having been prodded and pushed around on the twins' plates as they bemoan the fact that tea isn't more exciting, whereas you just made your furry friend's day. You ROCK. No cat ever had it so good! And let's face it, there is a greater chance of years of consistent affection from the cat than any of the kids - and cats don't answer back!

And whilst we're at it - the cooking. It has to stop. There are umpteen off the shelf alternatives to make your life easier.... the kids are not even the teensiest bit grateful for the ridiculous amount of time and energy you invest in their future health. Short of gorging themselves on Haribo no amount of cheap fillers and additives in the supermarket "free from" food aisle is going to cause too much damage - at least in relation to the bigger problems they are likely to face. Face it, the world has *had* it, and trying to save it one houmous pot at a time is likely to have as much impact as posting pictures of cats on Instagram. At least people like cats.

And on the subject of making your life easier, you need to step back a little. Surprisingly, few people are held back in life by the lack of a second language anymore. Ever heard of Google Translate? Cut yourself some slack, improve the Health and Safety of your son's teachers and let the languages go. Let him drop French and his overall behaviour in school might move back into the yellow.
Green? That might take more of an Act of God. But yellow is a start, yes?

As for all the health cr*p you have going on, I hate to say it, but it isn't going anywhere. You are wasting your time having a nervous breakdown fretting over the various debilitating symptoms so I will let you in to a secret.

There are no answers. Still. Ten years on, no one has a clue. 

Surprised? You shouldn't be. The NHS was going belly-up back in 2014, things are considerably worse now. The light at the end of the tunnel has been well and truly turned off due to budget cuts, but no one's dead yet - and although there is serious room for improvement it could be worse.

Possibly.

My advice? Get across the Pond and get some serious genetic input whilst your husband has a job and his eyesight.

Oh... and that social life you keep hankering after? It will happen. If only because you are trekking round the country helping with the grandchildren. With allergies.

Touché.

Oh BOY. Seventeen Years.

HOW is that even possible??

Yeah I know, that sounds so old. And yes I do remember listening to my Mum when I was younger saying something similar and thinking-

"Yeah, all older people say that, everyone knows time doesn't *really* go that fast!"

But believe me it does.

Seventeen years ago tomorrow I made my way to The Rosie Maternity Hospital in Cambridge for the biggest, most life changing moment in my twenty four years. It was a pretty horrendous twenty four hours, but worth every minute. No really. On November 9th 1997 I became a mother, a Mummy, and took on the best job in the world.

I got lucky too. Seriously lucky. Apart from that first night (which he spent screaming his head off) my eldest is the most easy going, laid back child. No baptism by fire for me - and I blame him totally for the fact that I went on to have three more children as my first experience of motherhood with him was such a straitforward one.

Almost.

Ten Top Tips for your Husband when he's left in Charge.

Now before anyone thinks I'm off on a "Jolly", this is more "essential maintenance" in the form of a hospital trip, with child in tow. My annual weekend escape is usually booked for August, and despite halving the number of (furry) dependents in the household since my last trip, the human ones are still remarkably needy and intensely dislike being abandoned for too long.

My husband is fab, always quick to encourage me out but perhaps less committed to taking on the daunting mantle of motherhood once I've left the house. I therefore leave detailed notes, meals labelled in the fridge, emergency supplies for the ever-hungry teenager and warn all schools business might not be "as usual" for the next couple of days. But together with the written notes are the unspoken "top tips" he knows he is wise to follow.....

1. Do make a note of the number of children you have. It's always advisable to count them in and count them out each time, you never know where one might be hiding. That goes for the furry "children" too ....

2. No you can't get a curry. I haven't spent the past week in the kitchen cooking, freezing and labelling meals safe for everyone to eat (food allergies) for you to now opt out and order in. Temping thought it may be.

3. No the biscuits probably aren't for you. But to be honest I would get them whilst you can. With a teenager in the house they are not likely to still be there in the morning anyway.

4. Your daughter is usually right. As mum-in-training her advice is best sought if you lose the master sheet of instructions. If she doesn't know, she will know whom to ask (Granny) and successfully navigate most disasters. #proudmum

5. Whilst H is not always right, it's best not to let him know that. Unless you have an hour all night to get lectured listen, I find "yes" is usually the best answer. Unless he's asking for a Wifi extension when I find I'm quite hard of hearing.

6."Winging it" is rarely an option. If your daughter doesn't report you, remember women have extra-sensory powers and usually know what happened anyway. Forensics have nothing on us. And yes I will know if you skip after school swimming lessons... Bribery doesn't work either - they will happily smile and take your sweets/money/extra computer time and tell on you anyway. #thatslife

7. School dinners are not £5 a day no matter what they say. Five pounds is the dinner cost plus a stupidity tax levied by children seeking to take advantage of a parent unfamiliar with day to day living costs.

8. There is no Charity Day scheduled for this week either. See above (number 7)

9. Statistically someone will have homework. With four children in school, someone, somewhere will need to be doing something for school. No matter what they tell you. And no, Minecraft doesn't count as homework.

10. DON'T leave the Big Clean-Up until the last minute. I will always be back earlier than you anticipated.

Linking with The List

My Child, My Choice

This should speak for itself, but I am increasingly frustrated by the public ignorance around issues which don't affect them, and the arrogance in thinking it "isn't their problem".

I made a choice, it is my right,                                      

I have no wish for verbal fight
But if you seek you to challenge me,
My human rights are plain to see.

For choices made for X and Y
Are all I can be accounted by
I will not consider others' fear
My responsibility ends right here.

But does it? Can it be so plain
That you can choose and choose again
Whilst blessed with this luxury of choice
You choose not to hear those with no voice.

The children whom we cannot protect
Or cannot feed, or clothe and yet...
Apparently this is all fine,
As long as it's not yours or mine.

All simple choices made by you
Will impact wider - and as they do
Those "others" whom you chose not to hear
They have rights too- just not so clear.

Vaccination, a hot potato,
Decisions made, results come later
So much written, none too clear
Unless you're reading without fear.

Thus selfish, pseudo-educated views
Become much more when out on view
Social Media is much to blame it's true
Endorsing "Me" and Forgetting YOU.

The smokers stating "It's my Life"
The drunks on Friday "I have that Right"
They're taking Liberty just too far, forgetting there is another "R"
Rights they have but something else, they leave RESPONSIBILITY on the shelf.

Linking with

A Different Me? It's all about choices

I've just accepted a voluntary role as a parent service user working with providers and parents for our local Short Breaks Provider (supporting disabled children) and am incredibly excited about it. Regular readers will know I am passionate about raising awareness disabilities, "hidden" ones in particular, hoping that in raising awareness we can normalise future outcomes for children with additional needs.

The role really "fits", giving me a wonderful and unique opportunity to use my skills and experience in a flexible position that allows for the often unpredictable family life that is our reality. And it's precisely that reality that has led me to consider - and even focus - on disability and additional needs. In many ways I'm profoundly grateful that I no longer live in a surreal bubble, blissfully unaware of the daily challenges many face in this area.

But I would be lying if I didn't sometimes feel rather weighed down, longing for liberation and the mythical ease of existence other parents apparently have. 

Creative Commons/ Flickr copyright Irwandy Mazwir 

Too Much Excitement?

But is there such a thing as TOO MUCH excitement?

Absolutely. Because you can't live your life doing something like THIS every day.

Creative Commons / Flickr copyright GlynLowe

And yet this is what we are bringing up our children to expect. Bigger, better, more WOW factor every time. Forget drugs, the biggest problem the next generation face is adrenalin addiction, and I don't mean too many roller coaster rides.

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.

WRONG
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.

WRONG
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.

WRONG
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.

WRONG
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. 

WRONG
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.

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.

The lift that never worked

The day I arrived the lift wasn’t working. 

Original Image courtesy
of maya picture
at FreeDigitalPhotos.net

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.

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?

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.

Really.

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:-

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.

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. 

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.

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.

Breastfeeding Two - a "TimeHop" post

Now... whilst it is some years since that was my reality, I wrote a few articles about my breastfeeding views and experiences and had a couple published. Never one to turn down a writing opportunity, here is my "Breastfeeding Two" article written for La Leche League in their Spring newsletter 2007 when the twins were one.

I must stress that this was written for a purpose, for a magazine whose raison d'être was the promotion of breastfeeding - which I wholeheartedly support but it does affect the tone of the article.

Thoughts...

A puff of steam, a shriek of smoke
A cough, a splutter - try not to choke!
The acrid smell of boiling steam
A time warp bubble, old-fashioned dream.

This roaring beast, smart-clad in steel
Seems imbued with power to feel
Voracious appetite not enough
It thrives on more - on care and love.

A bygone time we fast-forget
We rush in haste and do not let
A single thought cast on our place
But wish instead to have our space.

It reminds of times of more than me
And more than you could ever be
When life was slow and had some mean
When machine and man could be a team.

And in this symbiotic life
With family more than man and wife
Community meant something real
Something tangible to feel.

We had more time to see and hear
To do things right- not work in fear
Today we rush and separate
But think on this before too late-

Man was not alone to be
When God created you and me.
The world is hard but full of hope
Together we could learn and cope.

And just as in the Age of Steam
We need to do more as a team
Community means so much more
Than knocking on a neighbour's door.

Emma-Kate Thompson 30-vii-2014

Impaired Executive Functioning - time to ditch the briefcase?

It's been a week since I went through the results of some testing H had done when I saw his Psychologist on Monday. And it's taken me that long to process the (extremely helpful) information.

I learned that H has poor Executive Functioning - which is often seen in children on the Autism Spectrum and in those with ADHD. But what does that MEAN?

Impaired Executive Functioning - Time to ditch the briefcase?

Image courtesy of savit keawtavee / FreeDigitalPhotos.net

What IS "Executive Functioning"?

Executive Functioning is a set of mental processes that helps connect past experience with present action.

It is used to perform activities such as planning and organising, paying attention to and remembering details, and managing time and space.

If you have trouble with executive function, these things are more difficult to do. You may also show a weakness with working memory, which is like visualising problems and planning in your head. This is an important tool in guiding your actions.

As with other learning disabilities, problems with executive function can run in families. It can be seen at any age, but it tends to become more apparent as children move through the Primary Years.

How does this impact on our son?

I have to admit I have a healthy scepticism for psychologists. Too-brief encounters invariably based on a subset of assumptions brought to the meeting on their part have led in the past to half-baked notions which rarely apply to my child. But THIS one is Gold. She gets him/us and took a whole hour chatting to learn more about what makes him, and his family tick. Not in a nosy "how deep can I dig" way but in a profoundly sensible, academic and purposeful way and very quickly saw a route through to possibly help him, hence the testing.

It's not unexpected with Autism or ADHD - so when both are present impaired executive functioning will likely be an issue to some degree. But no one had ever mentioned it to us before. Interestingly sometimes it can be confused with ADHD or ADD and may be the real issue which prompts an incorrect diagnosis.

As "ADDitude" website says:-

"Children and adults with executive function disorder (EFD) have problems with organizing and schedules. They may also have attention deficit hyperactivity disorder (ADD/ADHD) and/or learning disabilities, but not always. ADHD is a common misdiagnosis for those who are actually living with EFD."

The Tests

H had to plan a route through a zoo with a few key requirements. He just couldn't do it - it took several tries and every time he rushed through and got in a muddle. Then he had to work out how to release something locked in via a series of puzzles - which he found very easy individually but the sequencing and planning really stumped him. There were several other similar tests in which he performed much the same.

So no career in business then?!!
So maybe we could be ditching the briefcase as a diagnosis of Impaired Executive Functioning has been given but not as you might expect - do we ditch the ADHD diagnosis?

Too Much, Too Soon, Too Fast

There is an interesting trend in our society that I have become acutely aware of. It's not new, but is certainly becoming more prevalent. It's pretty shocking in its apparent stupidity and deviates clearly from the past dichotomy in society between childhood and adulthood, which has always been profoundly entrenched.

I'm referring to the apparent need of so many (mostly upper middle class) parents to appear to forget all reason and scale and indulge their children to obscene degrees, almost as if they are forgetting that they are in fact children, and (unless visiting from some parallel universe where money does indeed grow on trees) children who will one day have to make at least some attempt at forging their own path in life.

Children with every adult techno gadget available, with the adult designer label clothes who are hurtling towards a kind of pre-pubescent emotionally immature adult status faster than their parents can offer the latest iPad.

Image courtesy of Stuart Miles / FreeDigitalPhotos.net

The irony is that these children are usually the very ones who were spoilt toddlers and pre-schoolers, indulged with everything from the Great Little Trading Co. catalogue, the entire Mini Boden range at full price and encouraged to stay young and pampered for so much longer than many of their peers. But once they get beyond seven or eight - suddenly, they are no longer little children and metamorphosise overnight into mini adults.