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.

I've been MIA... Life got in the way! But Merry Christmas All from all of us!

‘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
But 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

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!) But 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. There then followed the usual toe curling and futile attempt to give the minimum information about a complex and little known disease and swiftly change the subject! My attempt to downplay the food allergy thing ended with A white as a little ghost telling me his tummy hurt and that he needed to go home -so home we went, to sit on a familiar loo with his favourite cuddly for comfort.

You might think that's no big deal. And I guess it isn't, except that's not a one-off - and neither is it our only issue. Every attempt to leave the house with H and any other combination of children is always almost impossible. And staying at home and having friends here can be even worse! Somedays I think a paper bag over my head could come in really handy when out - because so many people think that it's poor parenting that causes ASD/ADHD behaviours. I've actually been told as much more than once. I've even been told I shouldn't have been allowed children after H because I couldn't control his behaviour. (And not by a paid up member of the BNP...) Even family suggest it is somehow "my fault" for having four children - which is totally missing the point because crystal balls are not yet standard issue or remotely reliable.

It's undoubtedly the combination of issues which I find so challenging and others so difficult to comprehend. Many families have a child with difficulties of some sort, and problems FAR more severe than any one of my children. When I see the suffering of some of the children I know and the challenges their parents face I do feel very blessed. But nonetheless on a daily basis I find myself increasingly dwelling on the same question. Just what are the chances of everyone in one family having the same gastrointestinal problems (to some extent), of two of my children needing strong unlicensed medication to keep them well? AND of having a child on the Autism Spectrum, with ADHD and other issues? It's not exactly that likely, is it?? How many other mums spent the last day of the holidays writing three sets of medical notes for school, getting three sets of medication ready? It's actually quite embarrassing, because it doesn't make sense to us either.

And if I don't "get it", what chance is there of anyone else understanding? The GP certainly doesn't, challenging every clinic letter, every prescription. Sadly denial doesn't work as a useful panacea, I wish it did! Our disabilities might be largely invisible, but I cannot deny their existence. I've tried this, many times, because this wasn't in the Plan. I didn't ever imagine any of my children would ever be anything short of or more than "normal". But the Plan somehow got changed, and the reality is there is a huge part of my life I cannot share with the vast majority of my friends, which increasingly takes over and prevents the rest of life happening as it should. It's isolating, restricting, frustrating and at times desperately heartbreaking.

Which is why, for a little while at least I'm retrenching. Retreating from daily social interaction I can avoid. Sometimes the effort before and despair after doesn't make the attempt worthwhile, and it can be as valuable to enjoy and value what comes easily rather than climbing Everest everyday. The children return to school over the next couple of days and I'm going to do all the mundane, safe and easy non-sociable things on my agenda. Staying at Base Camp is sometimes more important than aiming for every summit.

The Brown Bottom

I have to say the title of this post made me chuckle given the association with toilet humour and the gastro conditions suffered by some in this house! But it is a serious post, on a subject frustratingly pertinent given the current volatility on the stock markets and constant discussion on "Debt" and the "Cuts". I am constantly challenged by friends, Blog readers and online acquaintances how I could continue to lay the blame for the recession firmly at the feet of Labour. The banks clearly had their role and were perhaps the short term catalysts but the (then) government's foreknowledge of what was coming and their collective political fear of acting on such information is enough for me. When coupled with the traditional "tax and spend" of Labour past and present you have a toxic combination of a government hurtling into the abyss with their hands over their ears and their eyes tightly shut. It goes with my comment below, that benefits, payouts and support without a mutual contract of responsibility create the very social unrest Social Security attempts to avoid. So this information arrived today in my inbox and I decided to post it!

With the gold price hitting new nominal highs it seems a good moment to remind ourselves about the consequences of Gordon Brown’s sale of much of the country’s gold reserves.

In 1999-2002 he sold 395 metric tons of gold at an average price of $275 an ounce. Today the price stands at $1749 an ounce. No wonder Brown’s sale on the gold price charts is known as "The Brown Bottom". He also gave notice to the market that the sales would take place, thereby giving market participants every opportunity to drive the price down in advance.

Here are the approximate calculations of the value (in millions)which would have accrued if we still held the gold today:

	Sold then	Value now
	99 - 02	2011
Quantity sold tons	395	395
Average price $/oz	$275	$1,700
Sum realised US$m	$3,477	$21,492
Exchange rate avge.	$1.52	$1.63
Sum realised £m	£2,287	£13,185

The 2012 Olympics are estimated to cost some £9billion, so we could have paid for the Olympics with the amount of value he surrendered and had £2billion left in change. As of December 2010 estimated gold reserves were as follows:-

US	8,133 tons
Germany	3,401 tons
Italy	2,452 tons
France	2,435 tons
UK	315 tons

The impact of the man’s stupidity is breathtaking.

My thoughts on the Rioters.. for anyone interested!!

Like everyone else, we are watching the television aghast  at the scenes spreading across the country.  With Twitter promoting the "Hug a Hoodie" tag and others referring to these youths as "looting scum" and a tiny minority, feelings are running high and given the apparent lack of police protection my biggest concern was the call for vigilante type protection of private property, and a call for communities to "go out and stand up to these scum".

What sickened me most was the youths helping up an injured man whilst simultaneously emptying his rucksack. These people clearly have lost all sense of respect for others, all sense of respect and identity for themselves. But what they also are is a product of our society. Everything from immigration policy, taxation, cheap imports, easy credit, education policy, unemployment, housing - they have all contributed to the scenes we are currently witnessing. Minority or not, these people are currently a force to be reckoned with on our streets and we are struggling to contain this criminal behaviour. That is, after all, what it is - as the government are keen to stress. Any "message" they want to send the government or country was drowned with the indiscriminate aggression, petrol bomb and brick attacks on police and the complete ignorance of those wishing to say something who chose to speak through violence against those they should identify with, share a community spirit with and feel some sense of respect for.

But despite the message being drowned, we should start listening. Paying attention to those the majority of us never notice or acknowledge. I do NOT condone the violence, I do certainly think this rioting needs crushing fast and by whatever appropriate means required but to ignore the underlying causes would be a terrible mistake. I'm not talking about recent "cuts" which is a convenient scapegoat, this goes much much deeper.

I believe there is little sense of community in most towns and cities now. Families are so dispersed, everyone working long hours... ridiculous levels of political correctness in a society walking a tightrope in an attempt to enforce law and order in fear of the media's savage condemnation. And whilst national pride can be a terrible thing it is also necessary to a degree - or community pride. "Rights" (which I am SICK of hearing about) should be tempered with a sense of responsibility and the expectation that the government should always pick up the pieces. We have allowed social, racial and political hatred to blossom for fear of condemnation and positive discrimination thrives.

Let's get this straight, I do support the cuts, (most of them) and some of the attempts to get the current deficit down. We cannot afford to go the way of Greece and Spain, and the recent market volatility demonstrates the danger of downgrading of our credit-rating by any threat of defaulting on that debt. It is essential to see the "bigger picture" for the benefit of the many. But it is a heartless person who fails to acknowledge the individual struggling to be part of that "bigger picture". Yes "Big Society" *should* be more supportive, it is a commendable ideal - but at present that is honestly all it is. And without some serious grass roots change that is all it is likely to be. Short-termist opportunism on the part of far too many politicians so far removed from the world of those on the streets this week has placed a deep divide in society.

You might say there has always been a divide but it has changed in nature. The less well-off were always proud to be British, usually active in their communities and shared a sense of responsibility for each other and everyone else.
This seems to have been replaced in the hearts of many by a crazy, naiive hatred of those who have by some who don't which has largely happened due to the "ghettoisation" of these sink estates. They are so blinkered... someone who is working hard and making good (often from very deprived backgrounds too) is seen as a target for jealousy, even if it were someone from the same locality. Regulated wealth creation can only benefit everyone to a degree, but what is a long term "bigger picture" to someone so disenfranchised from the rest of society.

Instead of handing out benefits to the young, we should have them coupled with community tasks, payment for helping out. No - change the entire system so those unable to get a job independently can receive a minimum wage for a community-based task. It's the thin end of the wedge - but it's a start. Put some pride back in our communities, tag "responsibility" onto the "rights" people keep talking about. These riots should be dealt with swiftly and firmly. There is never an excuse for that kind of behaviour.... but maybe there is a reason and that reason needs someone to take notice, before what is left of our society disintegrates even further.

The fight continues...

This won't be a long post. I'm too tired, too cross, too frustrated.

You will have possibly have read my last post, "What 30th July *really* means to my son's teachers" . I had several comments, some of which I published. Some were deeply hurtful,  from those uncomfortable with the obvious challenge to a minority of their profession, or ideals and dogma they held dear. That's fine, they're my "Musings", my comments, and I quite like writing hard hitting pieces and being controversial. If I don't make you think, I've failed.

But this post is more an opportunity to vent my spleen, on my own behalf, my son's behalf and on behalf of so many others I know who are struggling in a similar situation.

My son has always found life, and school in particular very challenging. Three years ago the school situation was so bad he faced permanent exclusion, His (then) Headteacher was told by the Council SEN Officer to permanently exclude so she could commence looking for an alternative SEN placement at a multi agency meeting at the school in early 2008. The Head refused (due to the stigma of permanently excluding a child..and also the commendable sentiment that she felt she could not give up on him) and thankfully things settled down a little. We battled for years until he finally received a Statement of Special Educational Needs. his last Annual Review was last December, six months late but he had recently moved schools, AND moved classes because the teacher of the class he was initially in told him “Autism is no excuse for bad behaviour” and said he was “just a spoiled brat”. (For this the teacher faced a disciplinary hearing and H moved into a parallel class). This new class is a job-share, which is not ideal for a child with Autism, but certainly one of the teachers at least has endeavored to understand and work with Harry, and he has excellent, caring and dedicated full time (incl breaks) 1:1 support.

At Parents' Evening in March we were told progress was good, all was well. No IEP but one would be sent home next week. Nothing. By June we were concerned that we had not received a copy of Harry’s IEP, let alone discussed it with anyone in school so I asked for a meeting with the school SENCO before the end of term. We had also been struggling at home and I wanted to touch base with her before next year, I knew H was really struggling socially in school and wanted to hear how she viewed the situation. The meeting was a bit of a shock because we had no idea school were struggling as much as we were, and also that H did not have an IEP! To be honest, although this is a serious matter it was not something at that stage we wanted to make a huge issue of, since they were putting in the full time support he should have, although not targeting it as appropriately as perhaps it should be. Also, I believed we had a good relationship with the school and preserving this is often more important than battling at every step, they care about H and have given him the full time support that he needs.

Since then school have obtained some support from the Inclusive Resource, a service in Suffolk assisting ASD kids in mainstream school. But H is utterly miserable, his behaviour is becoming more alarming and we have regressed to being unable to leave him alone with his younger siblings on whom he vents his frustration. I cannot take the children out alone as H is once again a danger to himself and his siblings, car journeys are very difficult and potentially dangerous. Having left these issues so late in the term there is apparently no possibility of further discussion/input before next term, so we are to be left in limbo over the summer with an incredibly challenging situation! So, with some trepidation I prioritised my son and family life over a good relationship with school.... because in truth, the school have not fulfilled their duty of care to H by failing to amend and update his IEP despite his allocated statement of SEN. The school has put us in an impossible position by telling us about the problems so late in the term and only once the situation has reached the point where exclusion is once again being mentioned. They have not fulfilled their responsibility in light of Every Child Matters because H is now a danger to himself and others including his siblings. Where does that leave us with a six week summer holiday looming? This is a situation largely created by school and it is NOT acceptable for them to wash their hands of it until next term.

It gets worse though. His report arrived home today. No progress in Numeracy this YEAR. No progress in Science. No progress in most other areas and half the targets in Literacy. Seriously - HOW is this "good" progress even in March? What did amuse me was the tick box on handing in homework on time though, he has not once HAD homework in the entire academic year. Oh, and participating in the Yr 4 assembly would indeed have been a notable achievement had he participated. Or sat with the rest of his Year group even, rather than at the side on a chair with his TA.

We did finally get an IEP too. A flow chart for a delinquent child really, with the most absurd "targets" bearing absolutely no relation or formal reference to the targets in his Statement. Is this REALLY the school with an SEN Unit? The largest Primary School in Suffolk? A school we chose for our son and moved a family of 6 for to get him a place? Or, is this really a sad comment on the pathetic attempt in our County and so many others in this Country to pay lip service to the needs of those on the Autism Spectrum? Closing all the specialist schools to save money and attempting to normalise everyone together, with a cross-country token once a month excuse for support? Is this really what we should accept as an education for disabled youngsters?

Well I for one am not putting up with it. I've written to the school, LEA and Chair of Governors. And I don't think anyone reading this should either. I don't need advice on helping my son be polite and calm. He is one of the most polite children I know when his anxiety levels are low and he is happy. That last is so important. In all of this we forget this is a CHILD. No child, disabled or otherwise will ever learn anything if they are not happy. Every Child really DOES Matter. Whatever their needs, and I'm totally sick of fighting for the needs of mine.