Wow. Six years.

This time six years ago I was deep in the throes of twin labour. If you think the "twin" bit was tough, think again. That was perhaps the easiest part of the whole "twin experience" to date. In actual fact it turned out to be the most straightforward (with the usual caveats and exclusions) of all my deliveries and our beautiful babies arrived at 3.20am and 3.30am. Text book.

But at that point someone seems to have mislaid the manual, or at least the bulk of it which contained the information and reassurance regarding feeding, weight gain and development. For six months R and I survived on snatches of sleep, constantly dealing with crying babies and incessant vomiting. At three weeks old we had the first of (oh so) many hospital appointments, and such was my exhaustion I arrived in the hospital car park with the new buggy - having failed to cut off the tags to enable the damn thing to actually OPEN properly! Never before had I experienced that all encompassing, inexplicably life-sapping total exhaustion, and I hope I never, ever will again. The concept of a "full nights' sleep" is still a dream, existing only in a parallel universe somewhere across the Galaxy, but at least now it's (usually) enough. Between feed pumps alarming and small people reporting they are uncomfortable/awake/insert any excuse you can come up with (they certainly do!) I am usually up 2-3 times a night, but that is so far removed from those early days.

My photo stream is testimony to a considerable amount of fun and adventure over the past 6 years, with special memories by the score as they grew older. Moving to somewhere without a loft was tough - I struggled to hang on to all my treasures from their early days - and their brothers' too - with so little storage space!

It's been a bumpy ride and we've pretty much written our own twin handbook on the way, which is probably why tomorrow feels like such an incredible milestone. It's taken this long to even start to understand the fundamental difficulties the twins have always had with feeding and digestion, why they suffer so much more than their siblings or the rest of us, and why our family is so absurdly divergent from the text book we all subscribe to.

But that said, on the outside, when feeling well and medicated appropriately, they are the bounciest (that should probably read BOUNCIEST) loudest (definitely LOUDEST, even accounting for hearing loss in one and over compensation in the other) almost-six-year-olds around. The best things come in small packages they say, and when I look at my two youngest I fill with pride, in total agreement. They face everything life throws at them head on, and refuse to let anything (or anyone, which can be rather tiresome at times) get in the way of their chosen path.

It's scary how fast time flies, but so exciting sharing the journey.

Happy 6th Birthday Kitty and Archie, my Mini-Me and Monkey :)

Just call me Mrs Skittle.

Or Mrs Wobbly Woman. Either requires a certain familiarity with Noddy  although a passing acquaintance with the song "I get Knocked down, but I get up again" would suffice.

Right now, I feel like I have been hit by the proverbial bus, after two good shots at knocking me off my feet yesterday once again coupled with my body's masochistic desire to make things harder by switching off the sleep function at the worst possible moment. Two hours sleep is seriously not enough when you are pushing 40, have three out of four children who didn't read the manual and take it in turns to tag team me each night.

I've no idea why insomnia strikes when I least need it, but it does force me to take stock and recover my bounce. Life on our family roller coaster is never dull but any dip is followed sometime soon by a challenging climb with breathtaking views from the top. I am telling myself this right now, as I contemplate the challenges presented me in despair, trying to ignore the nagging feeling of deja vu knocking on the door.

It's been three years since our youngest son ditched the feeding pump and sustained himself, eating enough to grow and needing his tube only for medication and occasional venting/fluids. The much hated, sleep-sapping, bed-wetting device was handed back to the NHS at the first opportunity and I hoped to never set eyes on one for our use again. But sadly he once again needs a bit of help and it does indeed make sense... but what has sense got to do with emotions? On hearing we would shortly be taking delivery of a pump, feeds and other paraphernalia I felt as if someone had kicked me in the stomach, or that I was so sleep deprived I was hallucinating and recalling conversations of years ago. I do suspect my little man will put me completely to shame though and take it all in his stride, as he does everything else in life. He will no doubt be making jokes about it with his Dad along with his repertoire of funny accents and imitations of "French men going skiing at weekends".... (you had to be there). That boy has an enviable sense of humour and I can cope with most things alongside him providing he is able to see the funny side.

As if that were not enough excitement for one day we are also seriously considering alternative secondary options for H after a stupendously appalling day on Friday which rounded off a challenging first week back, continuing in the same vein as last term which was not much better than the one before. Quite honestly I don't have the energy to continue fighting to precipitate better understanding of ASDs in his school, in part because I totally sympathise with them. There may very well be understandable and explainable reasons for his challenging behaviour, but the fact is we struggle as much at home as they do at school. I cannot get on my soap box and cite alternative, practical and more appropriate methods of tackling each meltdown and its aftermath, because I'm still waiting for my own lightbulb moment and some illumination on managing him here. What I do know though, is that there is a time to admit a strategy change is needed, and if someone could just turn on the light and point me in the right direction I'll be all geared up ready to fight his corner once again.

In the County which pioneered inclusion high functioning children with complex needs are sadly frequently neglected, as elsewhere. The old adage that the bright child would "do well anywhere" is simply untrue, and my son is an excellent example. With a visual IQ over 140 you would at least expect him to be performing at an average level, once his additional needs were taken into consideration. But the fact is that he is years behind in numeracy (as measured in school) and almost as far behind in written literacy work. That same child can architect and code Java mods for Minecraft, build his own Servers and partition a hard-drive to operate Linux and Windows simultaneously, but those skills are not rated by our education system. There really is something fundamentally wrong with forcing each and every child-shaped peg into the same hole. In my limited experience of teaching and my many years experience working with and bringing up children, I have yet to find two identical "pegs". Even the identical twins I know are very different, learn differently and their pattern of strengths of weaknesses vary. So how a child who starts off very different, who was non-verbal before the age of 3, barely recognised his wider family before school age and spent the whole of Reception either under the table or excluded at home is supposed to thrive in mainstream is beyond me. Sure, he has an outreach team going in regularly offering both him and school additional support, but it is too little, too late.

We've discussed Home Education, but H really doesn't want to go down that route. He desperately wants to be with his peers, have friends, feel wanted and needed by others. Yet his behaviour is driving his friends away. What I wouldn't give for those who champion "Mainstream for All" to witness his tears most evenings and understand the damage the stamp of failure a does to a child. He was set up to fail before he even started school, in an environment which measures success in a purely neurotypical manner.

So yesterday was the first of what will no doubt be many discussion about "Where Next", but it is a topic with little room for discussion, there are no schools in our county for high functioning ASD children, and I refuse to send him to board away from home. It seems we don't have much choice - to continue "fire-fighting" at home and at school with a child falling progressively further behind and feeling more of a failure, or we take the initiative and responsibility for his education ourselves. I don't like either option so although I had intended to sit back and enjoy the ride a little more this year perhaps some planning into the future is required after all.

So I guess it's not really very surprising that I didn't sleep much last night. I do currently feel rather "knocked down" but as always after a little pause for breath and a lot of thought and consideration I will inevitably bounce back again. Just call me Mrs Skittle.

New Year or Same Old?

Having read my totally amazing friend's new Blog post I decided that I would click on the browser tab I opened (a week ago) to write a new post myself.  Given the lack of noise/spontaneous combustion/demands here right now, and my hugely successful attempt to ignore the ironing pile/dishwasher/any other sensible use of my time there really isn't an excuse to procrastinate any longer.

It's not that I arrogantly assume anyone else wants to read my ramblings, but the recent "writer's block" has been incredibly frustrating for me. I find writing such a cathartic process, and somehow sharing my trivialities with cyberspace enables me to move forward - whether in fact my posts are actually read or not. So I'm not totally sure why I have found it so painfully challenging to collect any sensible thoughts to record in recent months, but I suspect sleep deprivation may well be the main culprit. New mothers often speak of this mythical ten per cent of brain power pregnancy is supposed to "mothball", and share their yearnings for a return to full capacity. I think after 14 years there is little hope of that for me but without a doubt the recent months of repetitive night wakings (medication change and small daughter to blame) have rendered the remaining functional percentage semi-comatose much of the time. Or at least much of the time I have available to write! But the New Year is always a significant way point, and worthy of additional effort, and it is one of my Resolutions to find more time to write.

So how do you imagine New Year? I don't mean what does it mean for you, but how do you visualise time and its partitioning?  Being a teacher, and with four school aged children the New Year for us is actually not 1st January, but early September. I do imagine each school year to be an exciting "box" to be opened, experienced and enjoyed. With new challenges and adventures, troubles and joy. But January? I've never thought of the "real" New Year quite like that. For me, time is an inexorable mobius strip, which we move along at an inevitable pace. Like a tape measure each New Year is spaced along its surface, barely significant other than yet another marker along our personal timeline. I don't cross the threshold of the New Year with excitement or trepidation, but rather a feeling of inevitability, resignation and sadness. The sadness is purely because time persists in moving ahead at its own pace, those we love growing with us and cherished past times drifting further away. There is still the hope and excitement, but bizarrely I experience this to a far greater extent in September. January is such a bleak month, and this travelling forwards seems dulled in comparison. There is absolutely nothing new for me on 1st January from the day before, nothing to hide the fact that we are still fighting the same battles, with imperceptibly unchanged routines. In contrast I find the new school year such an invigorating time, I love the Autumn with its weather and festivals and feel a huge sense of achievement as my children take the next step at school, in clubs and sports.

This year was much the same, I actually remembered to write the correct year on the first cheque of 2012 but otherwise not much has changed. We have a few challenges to face over the next twelve months but nevertheless I feel excited and enthusiastic for once. I'm enjoying the present and determined not to look too far ahead - there is no Master Plan and I'm taking each week, each day as it comes. Mrs Organised is going to take a step back and enjoy the journey just a little bit more in 2012 and avoid looking too far ahead - or too far behind.

Twas the night before Christmas - Thompson style

‘Twas the night before Christmas - Our version for this year

‘Twas the night before Christmas, the children were high

Waiting for Santa way up in the sky.

Fueled by excitement, sugar and hope

They bounced and they shouted, I barely could cope

The cookies were ready, there had to be four-

Poor Santa would likely not fit through the door!

His reindeer had carrots, all neatly set out

The brandy glass empty - we must have run out!

The stockings were thrown at the fireplace with flair

One child informed me he just didn’t care,

Because “Santa will sort them, not leave them about,

He’ll not make a mess so there’s no need to shout.”

Then long conversations ensued with the cat

Minding his business sitting quiet on the mat

Concern running deep on what he might share,

With the wonderful gift-giver soon to be there. 

For animals speak on this magical night

And inform Father Christmas whom he should see right.

You might convince Mum and you may convince Dad 

But the cat is impartial on who has been bad.

Satisfied Timmy would not spill the beans

My children now hoped by whatever means

To stay up much longer than most of them should-

A visit from Santa was a prospect too good.

They hoped to snap Santa on CCTV, 

Watching him hover above our chimney

For Daddy had promised them no one is missed

Not even Santa, checking his list.

Eventually all of them began to grow tired, 

With only one hyper, distractible child.

But all went to bed without much of a fight

As sleeping would bring on the morning delight.

I thought as a kissed them, each sleepy head

How lucky I was to have four tucked up in bed.

I counted my blessings and counted them twice

Merry Christmas to all, and to all a Good Night!

Climbing Everest #1

Today it all really got to me.

Several times this summer we have tried to see friends and be sociable. Not just for the children - for me too, this parenting lark can (as a close friend astutely pointed out last week) be a lonely business. Particularly when you have a child with additional needs. Or two. Or three. But after today I think I will be focussing on the positives and staying home.

It's not that I'm "fed up" with all the issues, (well, I am a bit!!) or that I'm having a self-pitying moment, it goes deeper to be honest. It's hard to describe... which is precisely the problem. HOW do you describe to others the difficulties daily life presents, how normal activities are nigh on impossible some days - so challenging you just want to curl up and not try? That might sound defeatist, but it's this growing chasm of experience which is having such a profound impact, in many ways I feel so far distanced from the majority of parents on a daily basis.

Take yesterday.

A lovely picnic with school friends of K and A before term starts. To start with it seemed straightforward.

• It was a weekend, so H (who is currently in non-stop meltdown as the new term approaches) could be left with Richard at home.
• Since it was a picnic the twins should not feel "different" with their food as everyone would be taking their own sandwiches, right?

But kids inevitably share so we had to read sweet labels and draw at least some attention to ourselves. (quietly!) Then the new Mum in the class wanted to know why my two couldn't eat certain things... and didn't understand why intolerances didn't mean small amounts were OK and how their "gut allergies" differ from immediate ones. I mean, why would she? It's not like I'm an expert on anything my kids don't have, if it's outside your world experience you can be forgiven for not knowing.

But that just makes the gap wider. And deeper.

What does Thursday 30th June *really* mean to some of my son's teachers?

It is unlikely to have escaped the notice of anyone reading this in the UK that this Thursday, 30th June, there is a mass-walk out over pensions by teaching unions, the national discussion of which smacks of the "old days" of left v right as words like "Armageddon" and "bringing the country to its knees" are bandied about. I have never supported striking action, but then I have never been in a position when I felt desperate enough. Neither would I criticise or condemn a profession I am so out of touch with as a member, although I hold views as a parent on the education system. Certainly in the current economic and educational climate I am surprised the Government is further challenging teachers, who have by and large coped amazingly with the legislation of the past two decades. Also concerning is the potential far-reaching implications for future recruitment into the profession when morale is already low.

It is a comment on the vocational nature of teaching that after over a decade out of the job I still feel very much one of the profession. For me, teaching was my dream, the only job for me despite my father's very best efforts to tempt me with something more financially appealing. Just as my daughter does now, I would line the teddies and dolls up and play "school" writing out endless tasks for them, drawing elaborate pictures and plans and creating pretend schemes of work. Even around the age of five I was aware that a certain amount of planning had to be involved and Sindy and Strawberry Shortcake needed different support and imput if they were to realise their potential and keep pace with the bears.... so you can imagine my shock to learn that the parallel classes at my son's school do almost no cross-year planning, there are no agreed schemes of work and one child's experience in a single class is not guaranteed - or even likely -to be similar to his or her peers in parallel classes. This was straight from the new head, sheepishly admitting this was a point she wished to tackle - almost apologetically claiming she needed to "convince" the teachers to work together. Similarly, her staff were "legally entitled" to an hour's lunch break and she could not force them to offer clubs. Whatever happened to contractual responsibilities? Lunch supervision is no longer the responsibility of teachers, who also get planning time within the usual timetable. one lunch break a week running a club? Hardly a sacrifice and something I know many friends, former colleagues and teachers elsewhere offer without a second thought.

H's school has a reputation for apathy - but I believed this to be parental apathy. The turnout to the Year 4 "Meet the new Headteacher" meeting was indicative of that - with approximately ninety families in Year four, our school managed a turnout of seven parents. Seven. And two of us are former teachers. Even if two thirds of parents work..... that's just pathetic. Other school events are similar, and there are outstanding parent-governor vacancies from a year ago. This apathy it seems is endemic throughout the school however, and is as much caused by as a product of the lack of professionalism from the school. I commented that it has taken nearly a year for us to START feeling part of the school, since there is no "New parent Handbook", no newsletter, no parent/class reps, nothing. No way to contact parents of new friends to facilitate your child's settling into a new school and no information on how the school runs. I have no knowledge of the topics he is learning (you can be sure he won't tell me) and no concern with getting anyone to achieve anything over the average. Small wonder Ofsted down-rated them. If it were not for the sterling special needs support it would have little to offer us and many other families.

It IS unprofessional. Teaching is not a turning up to class five minutes before school starts, delivering mediocre lessons, hiding out in the staff room at break times in case you might get asked to do something and scuttling home the minute the children have left the premises. That is NOT what teaching is about for the vast majority of dedicated professional teachers in this country.

Is it an illusion that the majority of teachers teach because they want to, because something inside of them yearns to share in the educational journey of children who hopefully want to learn? I actually think it is the case for the vast majority of dedicated teachers in our schools. The long holidays enjoyed by teachers are always the butt of jokes but there was a trade off. As with any vocation, during term time you gave your heart and soul to the job. No one relished the extra lunchtime break duty having just sat down with a still-warm cup of coffee, the loss of any planning time when covering for a sick colleague - but everyone wanted the best for the pupils. I have some experience in both state and private sectors and job satisfaction and commitment to the profession was evident in both. But this professional pride has gradually been eroded by government initiatives, targets and second-guessing. Too many teachers leave the profession disillusioned, despairing at pupil behaviour, lack of respect from above and below. 

As far as I can see the only way of steering the ship through such choppy seas is with a strong, charismatic leader. A Captain who has vision, energy and commitment. Who KNOWS who is in charge and is willing to make unpopular decisions. Someone who has enough belief in themselves, their staff and the school to carve a way forward through uncertain times. I couldn't do it, and I'm not sure I would want to in a sea of apathy and low morale. But what concerns me as my son moves into Year five with a new Captain at the helm is that I'm not sure she can either. His is the largest primary school in Suffolk and only the most dynamic, committed and positive Headteacher is going to have a hope of making a big enough difference. That's probably not someone who quotes their employees legal rights over lunchtime to a parent enquiring after school clubs.

Thursday 30th June may well be a landmark strike, certainly it is huge headache for the coalition. But for many teachers at my son's school it is a good excuse for a day off and little more. Which is incredibly depressing.

Prejudice

Prejudice."An adverse judgment or opinion formed beforehand or without knowledge or examination of the facts. A preconceived preference or idea."

Not something any of us would strive for, whether psychological, social, political or religious and yet we are all, every last one of us guilty of prejudice in many ways. OK, not extreme "racism", "sexism" etc that we all associate with the definition, but who doesn't make a premature judgement, hold a positive or negative attitude based on beliefs not facts at some point?

And where do you draw the line? Are you prejudiced for refusing to listen to a band's new album because you disliked the last an the lead singer has had recent bad press? Or swapping seats on the tube because the person next to you is drunk? We all make assumptions based on experience all the time. About pretty much everything.

"Prejudice is the glass through which most things are seen and judged."
Edward Counsel

Usually though, prejudice is harmless, expected and actually useful as we seek to make sense of our environment and protect ourselves from potentially unpleasant or even dangerous circumstances. What I am weary of is prejudice with a capital "P".

I have recently had a discussion online, once again, about medicating children with mental health issues - be it ADHD, anxiety etc. It is a challenging topic to discuss, not least because the vast majority choosing to discuss it are rarely well informed or experienced, and mostly because by supporting occasional, regulated medicating of under eighteens you are immediately seen as some pill pushing liberal who would try and medicate her kids for any little thing.

The Daily Mail has had a busy week already. I'll leave the discussion of Carly Cole and the "baby whisperer" in the Daily Mail to this excellent Blog reply although I could happily oblige. What really caught my eye, and not directly, was the tragic story someone linked to on an "Autism Support Forum" of a ten year old boy who killed himself. not a DM reader, such articles only come to my attention if they wind someone else up, usually via Facebook, but this time someone was actually citing the article for seemingly pointing out how wrong it is to medicate young children for disorders of the brain.

As I wrote at length here ADHD is not merely "boisterous behaviour" and medicating it is not merely sedation but Daily Mail readers do prefer simplified explanations. There ensued below the offending post a long discussion on parents "boasting" that they collected benefits for medicating their children, that there were "always alternatives" and poor parenting was to blame. The prejudice was almost palpable...

Oh the irony - and apparent hypocrisy - since only a couple of threads further down everyone had posted very supportive replies to the mother whose child had been prevented from playing with another because of prejudice. The child in question had Autism and their behaviour was seen as unpleasant. HOW can people not see the double standard? Any challenge from me was rebutted with "you obviously have a bee in your bonnet", to "not all parents are as comfortable about medicating their children". As those who have never had to go through what we and so many other parents have struggled with on a daily basis gave their opinions, I was reminded we were "all in this together" as if online togetherness legitimises Prejudice.

But it's not so much seeing "both sides", those who may "brag" about benefits etc are a tiny minority I would assume, but understanding the condition. If there were a pill to medicate for Autism, remove 90% of the behaviours who here wouldn't be tempted to try it? I would. When you have lived with severe ADHD on TOP of ASD and several other conditions AND have two others with complicated medical needs I think you do see the "bigger picture" - you live it every day. And how is medicating an issue with the brain using unlicensed medication any different from using medication licensed only for adults on children to treat asthma, or gastro conditions like our children? Can you really see much interest in an article based on those?

So next time you see a person with a child who appears fully mobile using a Blue Badge, the older child having a toddler tantrum in the supermarket, the child with a feeding tube who is eating enthusiastically... pause for thought before making assumptions. Likewise, as guilty as the next person of prejudice I am going to challenge myself before leaping to conclusions in areas in which I lack knowledge. My biggest problem as my friends will know is jumping in when in a hurry rather than taking the time (I don't have) to ponder!

We are all familiar with publicised and widely acknowledged prejudice but the popular, unchallenged assumptions we make all too frequently should always be challenged. The only way you can understand someone else's situation is to be them - without that inside knowledge we can only offer subjective opinion, which is still valid and useful, but should be acknowledged as such.

"It is natural to develop prejudices. It is noble to rise above them."

Or my favourite quote from a Winston advertisement:-

"You can judge me all you want, just keep your opinions to yourself" .