Musings of a 21st Century Stay At Home Mum

Inspired by Coco Pops - who would have thought it?

noreply@blogger.com (Twins plus Two) — Wed, 15 May 2013 10:49:00 +0000

This week is SATS week and my quirky second son has defiantly refused to focus on them as they loomed large on the horizon.

Years ago, during the first round of SATS he was facing permanent exclusion at his previous school. Autistic and struggling with ADHD and other complex issues he didn't exactly have the cards stacked in his favour when he started school. Much of his Reception year was spent underneath the table, a convenient position from which to lob books at his teacher's legs as she went past. Even with a dedicated 1:1 support in Year 1 things did not improve much. The school had to devise a Crisis Plan to escort his class to safety if he had what the powers that be call a "Meltdown". Actually it was more of a "Burn-up" as his anger and frustration exploded but that name never caught on. He would run at any opportunity and a written plan of action was needed which involved calling the police if necessary if they could not catch him before he left the school premises. Year 2 was mostly a disaster, with a part time timetable and any time actually spent in the classroom a bonus, learning was never on the agenda as he never reached that point on his IEP.

But in Year 3 things began to turn around. For a start he learned to read and the reciprocal relationship between his brain and the written word was little short of revolutionary for him. He was at that age completely Pokemon obsessed, and I would have to (attempt to) read Pokemon stories each night to him. One night, tired from chronic lack of sleep I couldn't face it any longer and dug my heels in, telling him he would *have* to learn to read if he wanted to know what his cards and books said. Bizarrely and against expectations it worked - within a month he had a reading age above his chronological age as he saw the point in his goal. He hasn't stopped reading since....

The second major turning point was his discovery of YouTube. This began with following endless Pokemon game "walkthrough"s, followed by recording his own - but quickly he realised YouTube was the most amazing encyclopaedia of knowledge from which he could learn. And so began his multi subject "degree" from the University of YouTube.

I would be lying if I said things progressed smoothly from that point, and those of you familiar with my Blog will know just how much of a rollercoaster ride life with H has been, and continues to be. but once he had the tools to progress, there was no stopping him. He wanted to write Minecraft mods - his brother builds the worlds and he wanted "in" too. So he watched YouTube and taught himself to write basic Java Code. He wanted to learn about magic, the conscious mind and lucid dreams, about volcanoes and Dr Who and it's all on there. The possibility he might not be able to achieve something never EVER enters his mind. He just goes for it, winging his way through whichever subject he wishes to master with a quiet confidence we all envy. Apparently his future involves purchasing a hollowed-out volcano in which to live and nurture his evil genius from which he will devise the most amazing Java script and take over the world.... in his spare time he wants to be a magician, on stage with his sidekick (pet cat) Rosie.

But this week has been more bizarre than most, even by our standards.

H has decided he would rather be Irish. Now I have nothing whatsoever against the Irish but even for H this is an odd one. He has done the usual and "gone in deep", researching Irish traditions, language and culture. He's been speaking with a (pretty good) Irish accent for the past few days (was there anything in Monday's SATS paper about Ireland??!) and would appear to be either a) an excellent method actor or b) have totally immersed himself successfully for other purposes. So successful has he been that his younger brother was sobbing this morning as he says he has lost his brother and misses his voice! He's really, really distressed. H meanwhile is in his element and could probably take a GCSE in Irish language and culture by the end of the week. Simply because it interests him and he has a purpose - even if the rest of us are yet to discover what that actually is... He's amazingly consistent too. Calling us "Ma and Pa", saying things are "grand" and "deadly". He's rediscovered the "The Adventures of Piggly Winks" (makes a change from Tracy Beaker) for accent authenticity and was quoting stats on the Irish Potato famine last night. He detests potatoes much of the time but says he wants potatoes for tea!

If he would put his mind to it he could easily do very, very well in life. I see him in the Footlights Revue at Cambridge in a parallel universe as he has a wicked sense of humour - but in this reality he won't focus on anything for long enough! He gets a good Level 5 on a focussed day or a low Level 4 when not in the mood. Which is where the Coco Pops come in.

Coco Pops are his most favourite breakfast cereal on the planet. But since he has a major sugar addiction I insist on a healthy breakfast and as the day progresses gradually cave on the nutrition front to make it through the day. But this week the Coco Pops were totally inspired, giving him the focus he needed. For a child like H you cannot dangle future carrots and explanations of improved life prospects and expect a response. Even fringe benefits after the event on the condition of good results are meaningless. As I explained before in "A Hamster Called Pudding and "The Bargaining Power of a Fruit Pastille" you have to hit the jackpot of incentives and it has to be relevant. NOW.

My life often seems to be an ongoing quest for the next incentive, the next bargaining tool to make reality relevant, and effort desirable. To be honest I was thinking more of Chocolate Tiffin Cake from Costa as a safe fall back but that would still mean an after school treat which again, is too late. But the lure of the Coco Pops has seen him bouncing into school each day after an uncharacteristically good start beforehand. I feel positively hungover on unused adrenalin after dropping him off!

So, I've capitalised on this and said if he answers every SATS question rather than just putting a line through any which involve too much writing I will buy him Coco Pops for a month. (Even if I do have to endure the comic take-offs of the Coco Pops adverts. In Irish.) If he does *really* well I might even buy him a leprechaun .....

"That" Person

noreply@blogger.com (Twins plus Two) — Sat, 20 Apr 2013 15:47:00 +0000

Despite my best efforts, I have become "that" person.

1.The person who is always late - despite high levels of family organisation somehow life seems to conspires against me, and I increasingly frequently end up being late. Either someone needs an extended toilet trip, someone else has lost something, remembered something, the phone rings as we are leaving... the list is endless. I really value good timekeeping and punctuality in others and I used to pride myself on always being on time, usually early - but that was with the smug certainty of having only one person to get out of the door. Myself.

Persuading and organising four children is at the best of times akin to herding cats. (I have three of those too and they frequently present a significant challenge not dissimilar to the children.) I am pretty convinced there is an ongoing conspiracy between children and animals in this house and they collectively share the responsibility of vomiting on the floor, needing the toilet, requiring food or precipitating some other emergency which makes me late. Again. I suspect mother now automatically adds an extra half an hour to any estimated time of arrival I give her these days but is too nice to tell me!

2.The person apologising for missing that all-important school letter, the reply slip for which was supposed to be in last week. Or better still, you DID send the slip in... but completely forgot to enter the relevant details on the calendar. We've had some close shaves lately, when I have bluffed my way through a conversation with one or other school, frantically rummaging through my brain for the missing information which should have been to hand. Gone are the days of the feeling of satisfaction when your diary includes everything the children are doing with annotated notes on the day's requirements beside each event.

3.The person who backs out at the last minute - this is one I find really painful to admit. Like punctuality, reliability has a phenomenal level of value to me. Yet here I am, doing exactly what I dislike having done to me. Letting people down at the last minute.

Of course there is always a good reason, and I am certain the same is true for everyone else. And having four children with quite a flabbergasting number of hospital appointments has quite an impact on the odds of me meeting my commitments even when life is on an even keel. But throw the proverbial spanner in the works - a child in hospital, off school or a string of emergency meetings and any chance of normality flies out of the window, a State of Emergency is declared and anything beyond school and meals has but a slim chance of occurring. Which brings me on to the next person:-

4.The person who operates on a crisis management basis, reactive rather than proactive. You know, the person who dashes in last minute, (late, see 1.) having forgotten something vital (see 2.) looking flustered and panicky. That's often me - and yet it isn't. I am a control freak. I admit it. But battling the chaos of reality in a war I cannot win is something I struggle to come to terms with. You cannot function at your best in reactionary mode, at least not if your forte is über levels of organisation with the task nailed before you leave home.

But maybe I'm missing something? Because actually, whilst on one level I deplore lateness, being let down, disorganisation and crisis management, there is no escaping the chaos which infects the lives of big families with or without the addition of considerable health needs. There is definitely a level of satisfaction and even exhilaration from "winging it" and getting by. Just. It wouldn't be my choice of modus operandi but I don't have that choice. So for now I will embrace my inner "person" and continue to fly by the seat of my pants... ensuring the fridge has a bottle of Pinot Grigio chilling come Friday evening!

Maggie Thatcher - RIP

noreply@blogger.com (Twins plus Two) — Mon, 08 Apr 2013 20:27:00 +0000

I have been quite astounded and shocked by the many appalling things written on social media today as people heard about the death of Baroness Margaret Thatcher. Not because I am naive enough to think she was always right, nor that her policies did not impact unequally on the electorate. But what stronger evidence could we have of the manipulation of popular opinion by the gutter press than the outcry which went up today.

Many of the posts I have read are from those who were not even alive when she was Prime Minister, who have no first hand experience of life in the 1970s with the plethora of strikes and the 3 day week, with dead bodies rotting in the sun with no one to bury them, the water strikes, the power outages, and the National Debt. People forget we went to the IMF cap in hand for a $4 billion bail out in the 70s and she not only paid off the massive sum but in 1997 the outgoing Conservative government left a £20 billion surplus for Tony Blair on leaving Office - £40 billion more than Brown's government had in the bank by 2008.

When Margaret Thatcher became Prime Minister in 1979 the top rate of tax was 83%; by the time she left it was 40%. During the 1970 high earners left the country, the infamous "Brain Drain" and our economy suffered. Under her aegis government spending dropped from 42.7% of GDP to 39.2% of GDP (though it actually rose for much of the 80s, and health spending never really fell). We were were also still paying off a debt to the USA when Thatcher came to power, it was offered as help in the post World War 2 period when Britain was essentially bankrupt- payments for which were sometimes suspended if the exchange rate were significantly disadvantageous. (since the loan was linked to the convertability of sterling) Under Thatcher our pound strengthened, payments were no longer missed and this added to improved relations with the USA.

Britain regained considerable national standing in Europe under Thatcher who negotiated the British rebate saying "We are simply asking to have our own money back." She was a formidable character on the International stage and Britain was a strong advocate of the Single Market. However she never envisaged giving up a degree of national sovereignty which was a corollary to this. In her keynote speech on Europe, delivered in Bruges in September 1988, she said: "We have not successfully rolled back the frontiers of the state in Britain, only to see them re-imposed at a European level with a European super-state exercising new dominance from Brussels." I am very against "Big Government" as I have said before, and I fully support the ethos of a single market but feel - as do many many others - that the European Union has gone too far, and some of Thatcher's fears were not so wide of the mark. Maybe she was just braver than the rest of us and voiced what others felt unable to do? She was, in her own words, a "Conviction Politician" and they are a rare breed. Far more credible and with greater integrity than the "Convenience Politician"of today, who nurtures a short termist approach to politics with his or her eye fixed almost solely on the next election. Thatcher was ambitious, yes, but had a vision.

Thatcher played a major role in the collapse of the Eastern Bloc and the fall of the Soviet Union and when she left power one Russian newspaper ran the headline that if we didn't want her, they did. She was a major player in bringing the Cold War to an end. Today the current German Chancellor Angela Merkel recalled her as "one of the greatest leaders in world politics of her time. The freedom of the individual was at the centre of her beliefs so she recognised very early the power of the movements for freedom in Eastern Europe... I will never forget her contribution in overcoming Europe's division and the end of the Cold War." Unfortunately she was a product of her generation and was against German reunification, when the Berlin Wall came down in 1989 Helmut Kohl recalls her saying "We beat the Germans twice and now they're back."

It is easy to condemn her for an unpleasant war in which many died if you did not live in the Falklands when Argentina threatened, easy not to appreciate the international standing we gained with a strong pound and a strong leader.... there were many positives to her time in Office. And yes we rode the recession rollercoaster - never good, but her governments never precipitated the incredible deficit and recession the last Labour government did. Following the "Big Bang" reforms in the City during her tenancy, the financial sector has become more and more important to the UK economy. Oh I know, I know you will shake your head and ask about what the banks have done for us.... but it was the relaxation of banking regulations by Labour in this country and governments elsewhere which facilitated the "gambling" activities of the investment banks which precipitated the current recession. Banking per se is the biggest contributor to our GDP - and we would do well to remember that.

Those who had never owned their own home had the opportunity for the first time when council homes were offered for sale, a major step for many keen to be upwardly mobile. Obviously selling Council housing raised much needed funds to help the country climb out of the financial mess it was in, it WAS a short term measure for the country but people today forget the long term benefit to many who had the opportunity to buy. Home ownership flourished under Thatcher: the total number of Britons who owned their own property rose by around 2.5m and kept rising.

The gap between rich and poor did however increase by the end of her tenure which was perhaps the biggest reason for her vilification. The Poll Tax was in many ways a simple, fair and sensible alternative to the Rating system but unfortunately served to demonstrate how detached she had become from those who voted her in in 1979. The grass roots Tories felt stabbed in the back and the Conservative government of today is still trying to win back that foundation of support. But in 1979 Britain was in such a mess both economically, politically and socially that we needed a strong leader who could see the "Bigger Picture"- someone who had vision and could focus on the times ahead. If Sir Winston Churchill had paused to consider the young RAF pilots he sent to their deaths during WW2 we would most likely have lost the War, and like then in 1979 we needed someone who could think ahead unswervingly with their eye on the goal rather than get distracted by every detail. Unfortunately the natural corollary to this was that whilst the country as a whole benefitted hugely not every individual was a beneficiary. But hard times demand hard measures and collectively we were significantly better off. The Blair years sought to redistribute the country's wealth with some measure of success but we have been left in a society where so many seem completely unable to see beyond their own circumstances, where negativity reigns in a sound-bite happy nation who don't wish to scratch beneath the surface. We SHOULD be proud to be British, to have pride in who we are at each level. National pride is as essential as personal pride and should never be confused with arrogance and conceit. Thatcher did indeed take "a country that was on its knees and make Britain stand tall again."

It is perhaps worth pointing out a few myths about Margaret Thatcher that our press have enjoyed promoting over the years:-

1) Despite the "Thatcher, Thatcher, Milk Snatcher" taunt, cutting free school milk was not her policy. Thatcher was given a difficult choice in essential cuts by Prime Minister Heath.

"In August 1970, the new Secretary of State for Education responded to a Treasury demand for education cuts in four areas:
Further Education fees
Library book borrowing charges
School meal charges
Free school milk
In principle, the minister who became known for her public-spending cutting zeal once she took power in 1979, appeared concerned at what the public perception of the cuts would be.Responding to the demands to end free school milk, Mrs Thatcher said: "I think that the complete withdrawal of free milk for our school children would be too drastic a step and would arouse more widespread public antagonism than the saving justifies."She proposed the compromise, later accepted, that milk would only be available to pupils in nursery and primary schools."

2) The Wilson Government closed more coal pits than the Thatcher administration! Based on figures from government, Based on figures from the government about 290 mines closed under Wilson in all his time in office, and about 160 under Thatcher.

3) As illustrated by the Financial Times, manufacturing's share of the economy fell 3.3% under Thatcher, but fell 7.6% under last Labour government

Forgive me if I am wrong, but I was under the impression that when someone passed away you tended to remember the positive aspects of their life. Their contributions to society, achievements and above all their legacy. I sincerely hope when my time comes the person speaking about my life doesn't seek to dredge up every criticism, dislike and prejudice they might have had of me. We should be better than that. Jumping on the gutter press bandwagon when you have no experience of the times is inexcusable.

David Cameron: "Margaret #Thatcher took a country that was on its knees and made Britain stand tall again."

The president of the European Commission, Jose Manuel Barroso, described her as a "circumspect yet engaged player in the EU. Her legacy has done much to shape the United Kingdom as we know it today, including the special role of the UK in the European Union that endures to this day."

Berlusconi: Margaret #Thatcher was the greatest statesperson of the XX century. She made moderates proud of their ideas. Today is a sad day.

Damian Barr "In many ways #Thatcher seperated the people from the government and allowed them to become individuals."

Do you enjoy reading my Blog?

noreply@blogger.com (Twins plus Two) — Sun, 07 Apr 2013 18:32:00 +0000

If so, please nominate me for the Brit Mums "Writer" award :)

http://www.britmums.com/awards/categories-2013/

The end of the NHS? CCGs - Power to the People?

noreply@blogger.com (Twins plus Two) — Fri, 05 Apr 2013 20:31:00 +0000

There have been many articles, headlines (I'm thinking The Independent, Cover story 2nd April) and Blog posts deploring the end of the NHS with the Health and Social Care Act which this week become Law. Our local newspaper had a large NHS advertisement published on the same day entitled "Shutdown of NHS Suffolk", likely to have scared the living daylights out of a large percentage of its readership. I even found myself succumbing to the inner panic such propaganda aimed to ignite, fearing an end to the healthcare my children currently rely on. So widespread has the panic been that surely it *had* to be the beginning of the end of our NHS?

My biggest fear was that encouraging GPs to commission services was an ideal about forty years out of date. What practice has a stable and unchanging group of GPs these days? Every time I visit our surgery there has been a turnover of approximately a third of the GPs, some of them only GP Registrars. Long gone are the days of a "Family Doctor", a local GP who knows his or her caseload and looks after families for years, getting to know them and their needs. Just HOW are an ever-changing group of professionals, several only locums, going to have any inkling as to what services may be required in a particular area? It might have worked beautifully in bygone days, when the NHS was in its infancy and demand was substantially lower but I was slightly alarmed at the premise that today's society could support such change.

I am however a true Liberal, in the old sense of the world. I abhor Big Government, prefer self determination and am rather scathing of men in suits with little or no experience of my life making decisions which impact on me at every turn. Any semblance of decentralisation was bound to grab my interest.

So I took my head out of the sand, and decided to read. I'm barely past the first few pages but I am already feeling considerable reassured. Take Ipswich and East Suffolk. I visited our GP Clinical Commissioning Group page, and clued myself up.... breathing a huge sigh of relief. Here at least, I can see this revolutionary overhaul might just actually work. On the Clinical Executive, and the Governing Body, were names I recognised. People I knew. Most importantly professionals I respect and admire. GPs who are senior partners at the best practices in our area. There are two or three extremely successful large medical centres in our CCG. These have bought in services to support their community which have taken considerable pressure off local hospitals (ECGs done at Hadleigh for example) and speeded up routine testing. The Senior Partners for these Centres are now involved in making the new system work, and after 14 years watching at least two of them have such positive impacts on their own surgeries I am considerably more enthusiastic.

The best "bit" of the new changes, which really are revolutionary, is that the Men in Suits are almost obsolete. Politicians and Civil Servants now have less say in local healthcare, which is in the hands of the health professionals. I'm not sure there is an ideal, but I certainly wish someone had a similar idea for Education. How many teachers are sick and tired of being dictated to by Westminster and Whitehall? Politicians and Civil Servants Hell bent on "making their mark" in a Department they will have four years in at best, and in an area they have little expertise. I totally support the concept at least of devolving power to local areas to commission healthcare as they see fit. Obviously you don't want to subdivide areas into such tiny blocks that their bargaining power is reduced to little more than a whisper, but cutting out the middle man so to speak, or reducing his influence has to be a good thing. Too much money is wasted on management within the NHS and almost every area of the public sector. It's not only saving money (hopefully!) it's placing the purse strings and decision making in the hands of the professionals.

The cynic in me doubts it can be accomplished without a variety or problems, not least the apparent incompetence of almost every government in history to effect such sweeping change without making a few catastrophic miscalculations. I and the rest of the country live in hope this isn't one - and reading between the lines I suspect the Labour party actually wish this too. Overturning such a far reaching Act would be politically, financially and practically challenge of enormous magnitude.

My biggest current concern is over data sharing, resolving the current mostly appalling communication lines between primary, secondary and tertiary care. Between community and hospital professionals, and above all from and to GPs. Hospitals like Great Ormond Street get their clinic letters typed in India - and some of ours have been sent to Ipswich Australia when a well intentioned typist googled "Ipswich Hospital"! Excellent communication is vital, it's the key which will make or break this new system. Because if GPs are not aware of 100% of a patient's healthcare they will NOT be best placed to commission appropriate services.

So I hold my breath and wait, and watch. I sincerely hope this is the major step forward it has been flagged up to be - because the NHS certainly needs to evolve from the elephant wading through custard experience most of its users have.

Knowledge is Power, right?

noreply@blogger.com (Twins plus Two) — Fri, 15 Mar 2013 21:06:00 +0000

You know the saying, "Knowledge is Power" but it seems to be that the opposite is true and my experiences of the NHS over the past fortnight would sadly support this. What is happening in our society and particularly in the area of the public sector which works with children and young people chills me to the bone. The rights of parents are being eroded, invalidated and belittled, and professionals even at the lowest levels are being given an overly elevated status and level of influence, their views weighted above those who know their own children best.

It is, and always has been in this country, the right of every parent to decide their child's education. Parents are RESPONSIBLE for their child's education - which is compulsory. School, however, is not. How parents choose to deliver that education is NOT subject to State dictate and it is a fundamental liberty we should be extremely protective of. In the wake of Victoria Climbie there was a huge backlash against Home Education, purely because the press chose to advertise the fact that the poor child was "Home Educated" and did not attend school. From that moment the previous government (and Ed Balls in particular) led an insidious campaign against the Home Educating sector and attempted to removed the rights of parents to decide their children's education. The most important point which the press, past government and campaign groups like the NSPCC (who have little to do with child protection and more to do with making profit) chose to ignore and/or keep quiet was that Victoria Climbie was not educated in any sense of the word. She did not attend school but was not Home Educated. The failings of Social Services/CYPS/Whichever trendy anachronism currently in favour were hushed up and the finger pointed at libertarians seeking to meet their children's needs as they saw fit. Very convenient. Big Government interfering as only Labour know how...

But it didn't stop there. We now have all Children's Services under CYPS (Children and Young People's Services) and Social Services is enmeshed in Education and community support. We have Children's Centres and CAFs, Health Visitors and Safeguarding, all over hyped, over zealous, and all - most worryingly - run by public sector workers who barely scraped a "C" grade in English at GCSE. They do indeed support some but a part of their remit is to watch and observe and advise on the basic premise that we can't do it alone and without their help we would be lost. Big Brother is most definitely watching you and parents have never been under such a degree of scrutiny before.

This trend towards Big Government and public sector interference in family life is subtly becoming entrenched in society. There are manuals for everything, and more so for new parents than any other group. I totally despise books like Gina Ford's "Contented Little Baby", written by an "expert" who had no children of her own and attempted to reduce the fundamental, organic and intuitive relationship between mother and baby to a cold science. It causes new mothers, awash with emotions and often struggling in a society lacking in female family support due to geography and modern lifestyle to question their instincts, themselves and their mothering abilities. I've written about this and the "Science of Childcare". The vulnerable are being exploited, cynically fed the message that there is a "right" way to do things, that we are a homogenous bunch for whom there is a recognised process. If only!

But what if you have "nothing to hide"? Why then is an intrusive, "Big Brother" type public sector a problem? Because so much depends on WHO is observing and judging. Like writing history, any perspective is subjective, viewed through the spectacles all too often coloured with prejudice. And that is precisely my point. There is an alarming trend towards prejudice and suspicion of those with knowledge and understanding. A judgemental public body does not expect a reaction, and certainly not an educated response. There is no such things as pure truth and honesty and a government - ANY government - only tells you what it is in your interest to hear, or their understanding of it. This is why the NHS continues to propagate the "EatWell Plate" despite the overwhelming evidence that our obesity epidemic is due to a diet which is carbohydrate heavy and demonises animal fats. There is a stream of educated and informed opinion on the NHS website which someone is tasked with deleting regularly, because they cannot answer it and lack the supporting evidence for their claims. The simple fact is, it might be the 21st Century but there is very little we are actually certain of - we are still learning and life is a "best fit" experiment by and large.

"Safeguarding" is rammed home at every opportunity and prioritised with suspicion being paramount. Parents are encouraged to access support, revealing details of family life for public scrutiny and assessment (the comments in the copious notes made after every interaction with a health visitor, nurse etc about your child and parenting would often shock you - they can be extremely judgemental, based on little more than a passing interaction.) If you fit their preconceptions you might get lucky, otherwise YOU are the problem. The square peg in the round hole again. For example the whole CAF system is based on inputs and outputs through a flow chart. Certainly in Suffolk in the past you could only have three meetings, and if there was no resolution at the end of this process you proceeded to Child in Need. Another flow chart System and so it goes on. And if there is no convenient route to a satisfactory conclusion the finger is turned and pointed at YOU, the parents. Because unless you can proceed to the "situation improved, no further action" box the only one left is to address parenting issues..... CYPS do not even need to consult, let alone defer to any experts actually involved with your child! There are far too many stories just from Suffolk to list but the system fails far too many. The process however, is destructive, intrusive, and run by social care staff and health professionals whose sole aim in life is to probe into family lives in an abhorrently nosey manner and make judgements, based on little or no background knowledge - and if they get stuck they get the crayons out and make it up. And tragically the worst thing you as a parent can do when under scrutiny by anyone in the public sector is let on that you have a brain. Or know anything. Or have opinions - or, God Forbid, know your child better than the scruffy social worker who happens to turn up to assess your level of need. But ignorance is never an excuse for suspicion, and yet it is legitimised in the current system. And, a parent has FEWER RIGHTS in the family court than someone on trial for murder in a criminal court. FACT.

But I digress, this post is supposed to be about my experience over the past week.

My children have gastrointestinal problems, it's a family issue and some of us are more severely affected than others. The younger two have diagnoses of Eosinophilic Disease and there is a high probability there is an element of this in the issues the rest of us have. (See "What is EGID? in my Recipe Blog.) I've been dealing with these problems since becoming a mother 15 and a half years ago, I know a fair bit about it - I do have a brain (although much of it is still mothballed after three pregnancies and years of disturbed nights!) and also a photographic memory. I won't apologise for either and like many other mothers I seek to do the best for my children - which includes researching and attempting to make sense of their difficulties. And it's just as well I and so many others I know do this, because too many times poor communication between health professionals, mistyped clinic letters (dictated and typed in INDIA in the case of GOS) causes potentially serious errors which informed mothers are the first to pick up on. After all, we are "in the firing line" in several respects if things go wrong...

So when H ends up severely constipated and impacted and sent to hospital as an emergency by our GP I like to think the GOS plan, our experience and my knowledge of my own child might count for something. How wrong can you be? The suspicion of a mother who knows her child, who is willing to work with them but wants to discuss options and possibilities and actually personalise a treatment plan is so shocking they might as well have sent me home and treated him without me. Ineptitude and appalling lack of professionalism on so many levels aside (they "forgot" to order his X Ray to see if his bowel was obstructed, a life threatening scenario) I am so angry at the patronising attitude from doctors who think they are God but have never met my child before. In a tin pot little district hospital with a seriously rocky track record to boot I would hope that at the very least there would be a degree of open mindedness and willingness to discuss - if nothing else. But my son was subjected to six days of seriously sub-optimal care because they couldn't bring themselves to 1) ask me about him 2) listen when I realised they weren't asking and c) admit they were running into problems. Their refusal to deviate in ANY way from the guidelines the chose to stick to (don't get me started on those they chose to ignore) meant my non-routine child was given the wrong care and ended up in A and E two days after discharge. It takes a very strong person to stand up and say no, to question and challenge. But I did - and we mad more progress in 6 hours than they did in 6 days. (The document I intend to write on Movicol will be coming in the future, for now I have written about it here.)

This trend towards a quasi Victorian social arrogance - but with the educated and informed the new victims of our perpetual dumbing down and simplification of life is as alarming as the novel "Brave New World". The powers that be feel they need to save us from ourselves and administer the new logic, whilst "safeguarding" those who are not up the mark. Sounds like something out of the old USSR doesn't it?

Knowledge is something to be proud of, to be valued, not to be arrogant over and always to be viewed as partial - a "work in progress" to be complimented, added too, edited. Never should it be something to be ashamed of - nor lack of knowledge an excuse for poor professional judgement. A parent's knowledge of their child is invaluable, not inconsequential, and it is an arrogant and strait jacketed professional who forgets that - and who forgets that they, like anyone else, are always learning. That ignorance is expected amongst parents is a pretty cynical type of prejudice, any parent has something useful to offer in terms of information and understanding of their child.

Prejudice is endemic in society - it always has been. But the current prejudice against those who exercise their individual rights, who make choices, who inform themselves and want to work WITH the system or alongside it but who do not want or seek State control of the minutiae of their lives or engage in an endless battle against the powers that be is a prejudice we are allowing to seep unchecked into our society. It both horrifies and alarms me. It can't end well.

Feeding Tube Awareness Week

noreply@blogger.com (Twins plus Two) — Mon, 11 Feb 2013 09:22:00 +0000

Today marks the start of Feeding Tube Awareness Week.

There are many different reasons why children and adults need feeding tubes, not always the ones you might imagine either. There are those who can't eat, and those who can't absorb enough nutrition even though they appear to eat well. Those who won't eat, because you cannot imagine the fear involved in eating if you know swallowing could cause you pain, stop you breathing, stop bowel function - association is very powerful. There are also those who can eat and must not, for whom the switch can be painful emotional, psychologically.

If you haven't been there you shouldn't judge, shouldn't assume, but neither should you feel sorry for the person with that tube. Because feeding tubes save lives, give parents back their children, give back life to adults to spend more time with loved ones, facilitate living when barely existing is the alternative. They can restore normality and health - albeit a slightly altered version.

I was so grateful for my son's tube, it gave us our bouncy, cheeky, intelligent little boy who began to enjoy life once he was feeling better. It gave us HIM as a focus instead of how much he ate and drank. Things are still a little wobbly but for us his tube has done its job, and we are hoping 2013 is the year we bid it farewell.

Feeding tube awareness is so vital for the minority of us who have to live with them. We've had many comments over the years "Give him to me...I'll get him to eat more." "But he looks all right, my kids don't eat either." and more recently "But he eats really well, why on earth would he need a tube?"

Just like any other disability, awareness is key, because with awareness comes understanding, and with understanding comes support. Because many mothers with a tube fed child feel a sense of failure - nourishing our children is our most fundamental role. It's like a "badge" of failure at times, when in fact taking that difficult step agreeing to tube feeding can be one of the best things you do for your child.

And here he is. My Superstar :)

Happy Birthday Harry.

noreply@blogger.com (Twins plus Two) — Sun, 27 Jan 2013 21:00:00 +0000

After a particularly traumatic time with my eldest son four years earlier I was extremely apprehensive at the thought of going through a similar thirty+ hour labour. Given the inescapable fact that I was hurtling past full term carrying what the scans testified was a baby with a large bowling ball for a head I wasn’t desperately encouraged that the obstetrician's view that “second time was usually easier” could possibly be true.

The irony was that as a mum with a virtually inactive thyroid I was required to have frequent "growth scans" to check my new addition was growing appropriately. What the scans highlighted, but no one seemed interested in, was that my baby was growing exponentially... Forget centiles, this boy had a whole graph of his own when it came to head size and his femur wasn't so small either! Natural Labour wasn't on the cards either as allegedly thyroid disease usually puts paid to this, and certainly after 42 weeks my sense of humour was suffering a severe and potentially terminal failure. We had sold our house and finally found another (on my due date) and had approximately six weeks before relocation. Having a little time to settle in with my new son was definitely the preferred option, before packing and putting everything into storage and moving in with my parents. (Yes, we really have done that twice.)

In a last twist of fate the hospital couldn't locate my delivery notes from my first child as I had since married and changed name, and of course there was no such thing as a NoSQL database at that point to associate the data which DID match. (Clearly my husband should have got this IT project out a few years earlier...) So, the jovial Obstetric Registrar assured me a bed would "come up soon" and there was nothing to worry about and he was certain as it was a second baby all would be fine.

It wasn’t. Nearly three weeks overdue I was induced and my baby became very, very stuck. Like so many mothers of children with disabilities I frequently find myself wondering what, if anything might have “caused” his difficulties? What could I, should I have done differently? Because nearly losing your baby before he even makes it into the world is not a good start. Not emotionally, not physically...... For either of you. We came closer than I usually choose to remember to losing our little boy, who then valiantly recovered leaving me going through an extremely unpleasant post-heamhorragic episode. Nothing about Harry's birth was easy, or straightforward, but then I often ponder on the appropriateness of this arrival since he's not one for making a quiet entrance even now!

Despite such a dramatic entry into the world, Harry was by no means a sickly child. Note the “i” in that word. Very important that.... Because just like his siblings before and after he was a very *sicky* child. (No “i”). All my children have reflux, mine were the babies everyone admired from a distance, those babies that other people declined to cuddle or hold close “just in case”. Fair enough really, an effortless deluge of second hand milk is not a good look - I’ve worn it many a time and I assure you the reaction from others isn’t a good one. Sympathy, surprise, even horror sometimes because we really are not talking about possetting here. Not small amounts of baby spit, but most of the feed from a good hour before. Nonetheless I felt fairly unperturbed dealing with this, after all I had gained the proverbial T shirt over the past four years, I was an expert with experience and knowledge to boot. If only that were the only challenge my new addition was going to throw at me!

Many years on, with a collection of "diagnoses" to confound any medical student my wonderful, unique, gifted, outrageous, witty, impossible, intuitive son turns eleven tomorrow. Such an incredible journey I feel privileged to have shared. It's been a journey of such highs and lows a Hollywood blockbuster could not emulate, a journey of true discovery and education.

Someone once said to me that "God never gives you more than you can cope with". I think I laughed at that point.....
Today however I know what she meant. But what she should have said is - "God never gives you more than you are capable of learning". After eleven years I am still travelling, still learning. And what an amazing journey it is.

Happy 11th Birthday Harry. xx

Christmas Thoughts!

noreply@blogger.com (Twins plus Two) — Mon, 24 Dec 2012 14:16:00 +0000

Twas the day before Christmas, when all through the house

The children were squealing, “The cat’s caught a mouse!”...

A present for Harry, her favourite friend

She brought him the one thing a small cat would send.

The Free From mince pies were safe in the tin,

No dairy, or soy, wheat or gluten was in

Mummy had not had to bake much this year

‘cos Genius sent a large box of good cheer!

The Mulled Wine was flowing, Norad was on

The stockings were found and the chocs were all gone

Presents were wrapped, a last minute panic-

Have I remembered them all, the town must be manic!

Daddy had gone to pick up the meds

Last delivery this year, Mummy had said

The regular trips to the pharmacy gate

Collection of crate after crate after crate.......

We keep them in business, or so it must seem

To keep our kids well, it is always our dream

It seems never ending, a burden at times

Whilst onlookers claim “they always look fine”

How little they know, the long sleepless nights

Tummy aches, traumas, it’s not fair and not right

As we all keep going with loud cheery voice

It’s the right thing to do - and we don’t have much choice

There are always so many worse off than you

With loved ones in hospital, so sad but so true

People with no home on this Christmas night

We just can’t ignore them - that would not be right

So please all this Christmas with all the good cheer

Spare a thought for all those not so lucky this year

We all live in such an affluent place

Yet neglect the most needy - it’s such a disgrace

Spare a thought for the homeless, the mentally ill

The sick and the frightened - they need your Goodwill

Support those who help, who give of their time

And make a donation as you sup your mulled wine

Crisis and Shelter, Macmillan and Mind,

So many to choose from I’m certain you’ll find

A cause with some meaning that speaks out to you

Christmas means sharing and giving it’s true.

So we wait for the man in the jolly red suit

With “Norad Tracks Santa” hot in pursuit

I’m thinking of friends, near, far and here

And sending out wishes of good Christmas Cheer

It’s been a good year with much to remember

As we come to the end of another December

We hope that the next one will turn out all right

Merry Christmas to all and to all a good night!

Seriously - VOTING for the local police commissioner?

noreply@blogger.com (Twins plus Two) — Sun, 04 Nov 2012 20:23:00 +0000

How has it come to this?

On Thursday last week a Poll Card dropped through the letterbox. I didn't think much about it until on closer inspection I noted it was for the local Police Commissioner. Since when did the public choose such a vital local professional? We might as well shut our eyes and pin the tail on the proverbial donkey - we would have as much chance blindfolded of picking a suitable candidate.

And what does "suitable" mean? Something different for each locality maybe, but that's something I would prefer those who know the candidates to decide. A commissioner needs gravitas, respect, authority, experience and other such attributes I could not possibly assess. Considering there has been absolutely no publicity whatsoever for this election I certainly don't feel qualified to vote - and disagree with the underlying premise that this should be an elected role.

Can you imagine the scenario - someone with some campaign experience and political knowse but little on the job training gets elected and needs to command the respect and obedience of a force responsible for enforcing local law and order. Someone the rank and file might not have picked, or someone with sufficient private resources to to further their external campaign when they would have had little success winning internal votes within the region's force. Chaos. Or at subdued rebellion ... at the very least resentment. How does that work when a united front is needed to fight crime?

Hang on. That all sounds a little familiar? There is a certain theme here both in Education and Health is there not?

It's hard enough at any time, but giving those so ill informed a greater say in issues like this is the same as central government interference in local issues in my book. Two extremes which are equally inappropriate. I'm all for increased openness and accountability but by those qualified to do so. It's not "Big Society", it's passing the buck - or more precisely, passing the target. I sincerely hope these new commissioners are as good as their manifestos and that their qualifications do indeed exceed dog walking and golf.... because when things go wrong they are going to need the powers of a politician to deflect the criticism which will stream from both local and national sources. And surely, that is NOT in the job description of local Police Commissioner?

It is over-politicisation (if that is even a word) and under valuation in the extreme. But it is more than that - it is a basic avoidance by Central Government to tackle a thorny problem and avoid shouldering the criticism weighing them down since the 2011 riots. Which in my opinion is not "Big" on anything except responsibility avoidance. Using decentralisation in this way wraps everything in a political fog and undermines core values we rely on to make society work.

All about Allergies, immunity and Autoimmune Conditions

noreply@blogger.com (Twins plus Two) — Thu, 25 Oct 2012 21:44:00 +0000

When most of us think of the word "allergy" we are thinking of a systemic immune response, or at least an immediate and visible reaction. For myself as a child, allergies meant allergic rhinitis - streaming eyes, runny nose, and atopic reactions (rashes, usually itchy) to almost everything it seemed. My bedroom floor was regularly hoovered, as were the curtains and the bedding was washed every few days. My teddy lived in the freezer during the day for some time too to help eradicate the house dust mites I was so allergic to. I was on Beconase inhalers for years and we probably should have taken out shares in Piriton... However there are different kinds of allergic responses.

IgE MEDIATED RESPONSES
The above are all IgE mediated responses. True allergies, and allergies you can test for. IgE is an immunoglobulin. An immunoglobulin is "any of a class of proteins present in the serum and cells of the immune system, that function as antibodies". There are five subclasses of immunoglobulins, explained here far better than I could. DO read that link, it's the single best source I have found for non medics to explain your immune system and how it is classified.

IgE responses can be tested for - in Skin Prick Tests, and in RAST blood tests. The former have to be properly done to be accurate and reliable - we spent two years carting around an epipen for our second son who was allegedly allergic to peanuts - only to be retested a couple of years later (properly) and be told this was in fact rubbish. (Whilst some allergies can be outgrown, this is almost never the case with an IgE reaction to peanuts.) RAST blood tests are interesting, because they cannot in fact measure the severity of the reaction, the higher the number the higher the exposure rather than severity of response, so an older person would be expected to have a higher count.

NON IgE MEDIATED RESPONSES
You may think that a non IgE response would have to be what is termed an intolerance, but you would be wrong- along with an alarming number of health professionals I have encountered! An intolerance does not involve the immune system at all. A non IgE allergy is also known as a Type IV sensitivity, or cell mediated response. It is a local reaction and is rarely possible to test for. Gut allergies are delayed hypersensitivities, which is why food allergies are so traumatic and difficult to manage, requiring strict exclusion diets to determine responses to possible triggers. Imagine an eczema reaction in the gut - it's a localised response to an allergen (or a false allergen which the body responds inappropriately to) and causes a localised problem - no anaphylaxis, no outside response (although IgE responses are often present in addition in those with gut allergies) and is very difficult to diagnose.
Gut allergies are always responses to proteins, protein molecules are those the immune system responds to. Problems with carbohydrates/sugars such as lactose intolerance are not (as far as I know!) allergies.

GUT INFLAMMATION
Now imagine that patch of inflamed, irritated gastrointestinal tract - if your skin has a patch of eczema it is less supple, less flexible, cannot function at its best. Gut tissue is the same - it cannot function as well as it becomes inflamed. Inflammation ANYWHERE in the GI tract can cause symptoms anywhere else along its length. So, you can have reflux (which is only ever a symptom, be it from food allergy, obesity, muscle disease, ligament laxity, developmental delay etc) constipation, vomiting, diarrhoea, trapped wind, acute pain, chronic pain, bloating, wind - all from gut inflammation due to a localised allergic response. All too often I hear of children and adults with reflux symptoms, who have an upper endoscopy ("scope" where a camera is used to look down your throat as far as your stomach, and sometimes down to the small intestine below but only a small way down.) and a ph study which is negative and they are told there is no inflammation, no problem. It's happened to us too, my daughter was fobbed off for years until someone bothered to look lower and found inflammation and ulceration, causing the reflux further up. Bowel inflammation can, and does cause reflux. There are often other clues but sometimes it is that simple.

APPROPRIATE CARE
What is so concerning is the difficulty so many parents are having in getting appropriate care for children with clear reactions to food. Any parent with a child suffering from food allergies will tell you how their child reacts - yet if skin prick tests and RAST tests are negative many doctors come to the conclusion there cannot possibly be an immune response. Some doctors prescribe patch testing, which does indeed show delayed responses, but only on the skin. If it is only your gut tissues which is reacting, they are not going to be particularly helpful.

Another useful test is an serum IgA blood test. Immunoglobulin A is the major antibody found in the membranes of the respiratory and gastrointestinal tract. The second most common immunoglobulin in the human body, IgA can also be found in tears, saliva, mucus, and colostrums. IgA is one of the most important immonoglobulins in local immunity. Interestingly those with gut allergies often have low IgA levels, and in those who outgrow their gut allergies their IgA levels often rise approximately 6 months before such improvement become obvious when closely monitored. This is another reason why the antibiotic Azithromycin is so successful as an anti inflammatory agent in the gut, because of its role in the absence of IgA.

REFLUX and GUT INFLAMMATION
There is a huge surge in babies with reflux in the West, which is often due to gut allergies such as Cows Milk Protein allergy or reactions to other food proteins. It is often outgrown by the age of one but in those whom it persists into childhood underlying causes need to be investigated - any paediatrician should tell you that. The gold standard test for reflux used to be a ph study, measuring the ph at the top of the stomach. However, reflux caused by bowel inflammation is unlikely to be acidic unless the stomach contents at that time are acidic! Reflux caused by bowel inflammation is more likely to be alkaline, and shows up best using an impedance study or pressure test, used in conjunction with a ph probe. Gut inflammation will reduce gut functionality and therefore cause pressure changes along the GI tract.

No one is exactly sure why there is almost an epidemic of gut inflammation in the West. Many will tell you it is the overuse of antibiotics, the increasing prevalence of GM foods, over production , pesticides, chemicals etc but the truth is we just don't know. One thing is certain though that gut allergies are on the rise. In America there has been a surge in the number of diagnosed Coeliac Disease cases - interestingly Coeliac is another delayed hypersensitivity, as is Chrohn's Disease. Eosinophilic Disease is also thought to fit into this category which makes it so very difficult to treat and manage.

FOOD ALLERGIES AND BEHAVIOUR
Until quite recently there was little understanding of the way gut allergies worked. Recent research at Great Ormond Street has shown how neurotransmitters in the gut sit next to mast cells which are responsible for these local gut reactions. As these mast cells degranulate they release huge quantities of toxins which cause a local pain feedback cycle. They are also soaked up by the neurotransmitters and enter the central nervous system. This is thought to be how food allergic reactions cause the behavioural issues we often see in children with food allergies and could also explain why the casein and gluten free diet for Autism might just work for some children, who in fact display ASD type behaviours due to delayed gut hypersensitivities.

VACCINATIONS
Local gut reactions also cause an increase in histamine levels which make the gut wall more permeable. Anyone heard of Leaky Gut Syndrome? Something I thought highly "alternative" and improbable until I was immersed unwillingly into the world of gut allergies. What is more concerning is recent GOS research which is supporting the theory that the blood brain barrier is permeable (as is the gut) when local immune activity is present. Teething can also precipitate this permeability by raising histamine levels. There is in fact current speculation as to whether a highly allergic child - whether IgE or non IgE - and/or one who is actively teething should have their vaccines postponed/delayed. This is similar to the theory postulated by Andrew Wakefield, whose totally flawed study left him hung out to dry but which buried the real message that timing is actually important with vaccination and that the links between the gut, Autism and vaccination might well have more to do with histamine and gut permeability than multiple vaccination programmes.

AUTOIMMUNE DISEASES
Lastly what i find particularly interesting coming from an EGID perspective is that several Autoimmune diseases are also Type IV hypersensitivites. Hashimoto's Thyroid Disease (which I suffer from) Diabetes Type 1, Arthritis... all the same type of reaction by the body. There are extremely strong links between gut allergies, immune profiles and autoimmune diseases. My children also have low IgM and IgG levels - again, common in those with autoimmune disease, but also caused by gut inflammatory conditions!

So despite being non-IgE, impossible to test for allergies, the immune profile of these localised, delayed hypersensitivities is perhaps more profound than the more obvious, recognisable IgE responses we are all more familiar with. I think it's about time the medical profession sat up and took notice of the autoimmune time bomb in the West and the surge in gut allergies - REAL food allergies so many people (and particularly so many children) suffer from ARE relevant, and health professionals in the twenty first century have a responsibility to take them very seriously indeed.

DISCLAIMER - I am not a doctor, the information above I have ben told, read and learned over the years. The opinions are not only my own, but it must be stressed that this is a Blog not a medical document and whilst knowledge and opinion is useful you must follow the advice of your/your child's doctor. By all means discuss the above, I have carefully referenced the information but I am not medically trained. I support and endorse vaccination programmes - having children with reduced immunity I know the importance of herd immunity and prevention of disease. I always endeavour to research issues affecting our family however and take each intervention as an individual case.

The Bigger Picture

noreply@blogger.com (Twins plus Two) — Fri, 31 Aug 2012 12:11:00 +0000

Well, as predicted we have a double dip recession. No one should really feign surprise given the turbulent world economy and the complete failure to date of the Eurozone to make decisive and effective plans for their intra economy. How we dig ourselves out of this mess is becoming more urgent an issue which is going to require action rather than merely babysitting the economy until it gets stronger.

I'm no economist, and thankfully no politician either, but I suspect it's going to take a situation more desperate to precipitate the necessary action for recovery, whatever that may be. Far reaching, bold decisions which focus on the "bigger picture" are rarely popular, neglect the individual and compromise the many "smaller pictures" of which they are composed. Who is to say which is right, let alone preferable, but changing direction with a heavy load in tow - be it massive debt, unemployment, social deprivation or all of the above - is never easy.

Whilst I admire those who take such bold and frankly terrifying decisions I'm not sure I could ever ignore the individual to such an extent. Sir Winston Churchill made a first class leader during wartime Britain because he possessed this attribute - yet not so many years later Britain's electorate was quick to dismiss an apparently uncaring politician. But tough times call for tough measures - the Battle of Britain would never have been won if Churchill and his government had allowed themselves to focus on the individual pilots, giving way to misty eyed sentimentality would have cost us the War - and the future of millions. But how you justify the decisions taken on such a large scale when those very decisions cause the suffering of many individuals is a dilemma as old as time.

Take the Greek debt - the country's people suffer now, will suffer far more if the debt is to be paid off anytime soon but without paying that debt off, at least in part, the future of Greece economically, socially and politically is extremely fragile. Yet who is going to take tough decisions for the many at the expense of the few?

I think the crucial point is support and endorsement. If, as in Britain in 1940 there is a clear and definite threat, an almost certain future which is far less attractive, or more terrifying than any short term or individual sacrifice then there is invariably popular support for decisions aimed at a larger purpose which neglect the individual. But the current economic situation - whilst in desperate need of some far reaching, bold and decisive big plan lacks the social and political support it would need for any hope of success.

History used to be the "History of Great Men", the storytelling Whig History of the nineteenth century. Men like Macaulay and Trevelyan allowed for sweeping generalisations to facilitate their seemingly impossible task of chronicling History to portray the bigger picture. As an historian myself I abhorred the obvious neglect of the less important individual, of social and economic trends and the use of the past to justify the present but undoubtedly without their brave attempts to achieve so much we would have been deprived of the fascinating stories which contributed so much to the understanding and appreciation of our shared past.

Sir Herbert Butterfield pioneered a more rigorous and philosophical approach to History which continues to this day, and my subject has become more vibrant and far reaching as a result, but as it seems with every strand of life political correctness has stifled and devalued any recent attempts to focus on bold and revolutionary strategies to see themes and to "bravely go where no man has gone before"visualising the bigger picture.

What the present economic situation makes abundantly clear however is that we are a society of individuals, with overlapping, similar yet fundamentally different needs, desires and aspirations. Obtaining political consensus today is far more of a challenge than it ever was in the past, yet I shudder to think the desperate situation that might be needed to precipitate the necessary agreement for moving forwards. The bigger picture will eventually take primary importance and must do so if we are to escape the current recession - but I sincerely hope we don't neglect too many individuals in the process.

If this is making you think of the current political situation in the USA, you're not wrong. The Presidential campaign in America makes this clear as the two candidates attempt to bring millions of people together in their support, people from such different states as California and the Carolinas, Kentucky and New York. The bigger picture is at the heart of American politics, as candidates cleverly (or deviously!) hide their bigger goals with heart string twanging slogans to pile everyone on the political bandwagon. For me this is a clear warning of how focussing on the bigger picture must not disenfranchise swathes of people, of individuals in the process. It would take a dire situation indeed to legitimise such a process in the UK and we need to hang on to this thought as we seek a bold and daring strategy to escape our own economic turmoil that does remembers we are not, at least not yet, facing a situation as desperate as that of 1940. Business undoubtedly needs tax breaks, we need to stimulate growth without further burdening the country with debt and spending cuts from the heady days of Labour spending may well be necessary. But when I see those cuts falling disproportionately on the most disadvantaged in society I believe there has to be a better way. I'm all for bold, for brave, for aspiration and growth, for the bigger picture, for progress........ but it does not have to impact unfairly on those least able to speak up. Facebook is awash with comments about Romney's archaic posturing, but we need to stop and think before we do something similar here too.

Staycation v Vacation

noreply@blogger.com (Twins plus Two) — Wed, 11 Jul 2012 12:12:00 +0000

So it's pouring with rain and has been continuously for the past 48 hours.in fact, as most UK residents would undoubtedly acknowledge it has been raining almost every day since he beginning of April. Such is the Great British Weather.

We are currently enjoying a family holiday at Center Parcs, having forgone Plan A of holidaying abroad this year. The hassle/stress/worry of taking two on strict exclusion diets and one with behavioural issues abroad would have made all but those with nerves of steel think at least twice- and that would be after a stiff drink.

So we opted for the fail-safe close-to-home easy option yet again and booked up a week 45 min up the road. Ambitious- no. Practical- undoubtedly but perhaps a little lacking in the sun and warmth department. It is July, though. Surely a bit of sun isn't too much to ask for?!

Rose amongst thorns

noreply@blogger.com (Twins plus Two) — Fri, 29 Jun 2012 20:04:00 +0000

It's Wine O'Clock on a Friday night and I am sitting here proud as punch of my youngest child. I say "youngest" because those ten minutes count for something in the sibling pecking order, and can frequently be used against you by an over-controlling elder brother with zero empathy. (See "Sibling Rivalry" )

Being the only girl in a family with three boys can be tough. Initially held in awe and wonder by two adoring older brothers when she was a baby, the novelty wore off once her desire to take on the role as "Mummy's Deputy" kicked in. With one incredibly disorganised brother and two who try hard but often need a little help the temptation was too much to resist. K used to even dress her twin brother on occasion, and has been known to wash his hair and clean his teeth even recently. She is naturally maternal and caring and has a large family of dolls on whom she lavishes her affection, and I still receive daily drawings of cute puppies to try and break down my refusal to allow her one. But this care and concern for her brothers incited huge resentment from H. Being autistic he struggled to relate to twins, needing to "divide and conquer" to have any chance of social success with either. And what is easier than to ally yourself with the sibling you have more in common with? So for years K has endured daily ridicule and a verbal onslaught from H which we have tried to limit and control.

Added to this she has had to cope with her twin excelling in pretty much everything he tries, particularly in the classroom. But the situation is changing, and I couldn't be more pleased. Our little Rose (and that is her middle name too) is showing herself to be quite the artist, more precise and particular than her twin brother who loves making and is extremely good at construction, but she has a real eye for colour, detail and the ability to visualise from 2D to 3D with ease. She also dances beautifully and can sing in tune - which her brothers find more difficult. But none of this impresses H who is far more concerned with Minecraft, Java and the last episode of Tracy Beaker, and has continued to put her down relentlessly.

But today she earned his respect. H has always loved swimming and is pretty good in the water, and although he is perhaps overly optimistic he has aspirations to be the next Michael Phelps. So on learning that in today's Year 1 swimming gala K helped her class win (over the parallel class favourites) as one of the fastest swimmers H stopped in his tracks.
"Really? But you're so little!" he exclaimed.
and then the best bit......
"That's amazing. Wow - you must be really good. Like me! Respect. Much respect."

Indeed. Much respect, and much happiness on hearing her older brother consider and value her achievement. Happy day.

Spontaneous Combustion

noreply@blogger.com (Twins plus Two) — Tue, 22 May 2012 20:25:00 +0000

There is a wonderful phrase, in fact it is the title of a play I believe :- "Stop the World I want to Get Off"... which I have coined many a time during my adult life. It's not so much that I wish to get OFF, more that it would be nice if the world would just kindly slow down a little, or perhaps even stop for long enough for me to a) make a cup of tea b) allow me to drink it without the usual reheating (twice) and c) perhaps even let me SIT to drink it?

I am supremely grateful that years ago, when I had one small not-so-demanding child no one told me that I should enjoy the (relative) calm I then enjoyed. Working full-time as a single parent, going to bed at midnight after marking books and preparing lessons, waking to transfer washing to tumble drier (yes, they've ALL had reflux...) at 2am and then finally up at 6am for work I felt as if I was at times struggling to keep the plates spinning. Little did I know then that it was but an oh-so-gentle introduction into the world of additional needs, not even close to the "extreme parenting" I seem to have to hit the ground running with on a daily basis now.

Most of the time it's fine, and fun. Hard work but exactly, totally and utterly what I was made for, I *need* busy like most people need air. And Jelly Snakes... definitely Jelly Snakes too. I thrive on being insanely, frantically busy - but only when I feel in control. Just as well really, considering. The problem with living life on the edge however, is that you have to cling on tight when you get to the hair-pin bends. The moments when the incline suddenly becomes a vertical ascent, which (just for kicks) you have to scale blindfolded with a deafening roar in your ears. I hate those bits.

My sense of humour failed me this week, it's been a full-on month with a lot of highs, good bits to remember, and a load of "stuff" I could really have done without. One good thing about being ridiculously overly-busy is that you can lost the long term perspective and keep your head down. Not much choice really when the here and now takes every ounce of energy and focus to be honest. It IS a useful survival mechanism though and I have used it many times to my advantage, volunteering the few spare minutes I have to others or considering crazy plans such as satisfying my daughter's desperate need for a dog - or even feeling guilty that I am still a full time mum when the children are at school - and maybe I really should consider getting a job. The busier I am the less time I have to ponder the future.

I think that is what has made this past week so difficult. In so many ways I am being forced to look ahead, and I don't have the time or emotional capacity to deal with it right now. There is no need to fill spare minutes to fix myself stubbornly in the present - there are no spare minutes and the future I must face.

Firstly there is the start of the planning process for H's transition to High School. He's only entering Year 6 this September but we have Multi Agency Meetings, Annual Statement Reviews and more with SENCOs and teachers. Transferring a child totally dependent on full time 1:1 support to stay in school -and hopefully have a positive experience there - is no walk in the park. Ideally I would like to give him and his future my undivided attention... but that isn't possible. We also have quite an important review at GOSH for the twins next week - neither is that well right now and neither can continue as they are long term. More decisions, more.... *thinking*.

Added to all that my parents have FINALLY exchanged contracts and are moving house next week. This is GOOD news, no complaints there, but it has definitely precipitated a few feelings and emotions I am struggling with. They are leaving the house I grew up in, it has been their home for 47 years and my Home with a capital "H" since I came home from hospital at a week old. Twice we have returned as a family to camp on floors whilst waiting to move ourselves, it is where a piece of me most certainly will always be. It is one of the most special places in the world to me, saying goodbye will be a huge wrench. I don't do moving on very well....I think in many ways the past is always more attractive than the unknown future!

So once again I find myself thinking how perfect it would be if I could just press pause for a while, to allow my brain the necessary time and space to process so many thoughts and emotions. But I guess that was never the life I signed up for, and probably not the kind of life I would ever choose either. (There would be at least a couple of dogs resident here and a job application in the post by the end of next week if someone did find that button.) So I am hoping I can find the inner strength to get me through the next couple of weeks (and my poor parents as they move!) and hope I don't spontaneously combust along the way! Normal is way too overrated anyway....

Healthy Eating?

noreply@blogger.com (Twins plus Two) — Fri, 27 Apr 2012 19:32:00 +0000

Today K and A's school included in their weekly "newspaper" an editorial on "Healthy Eating", asking parents to support the school's two week drive to improve on an already ongoing campaign.

But just what IS Healthy Eating? The school in question have twice termly cake sales, and hands out sweets in birthday assembly, which hardly fits the "Healthy Eating" criteria that the school is so keen to promote? But actually I have more support for cake sales than you might think. The key to good health is usually a balance in all things, cakes have their place in our children's diets as much as fruit, more so if you speak to a dentist - many of whom deplore the plethora of dried fruit snacks which are the biggest culprits for causing cavities in young children today. On the subject of fruit generally the message is the same, balance is key:-

"It might seem counter intuitive to think that a food with lots of sugar is good for your teeth, but fresh fruit is good for your teeth when consumed as part of a balanced diet."

However frequency also matters, and the modern craze for snacking does no one's teeth, blood sugar or appetite any favours.

Given that my younger two are on such restricted diets their school's two snacks a day (which has to be fruit or cheese) means we probably hit 5-a-day by lunch time, so I am not going to lose any sleep about the odd free-from cake which their school very thoughtfully provides for those unable to buy the regular cakes at their charity sales. My bigger concern is the drive for low fat-high sugar foods, the demonising of animal fats and the rising importance of carbohydrates in society- and initiative endorsed by successive governments over the past couple of decades. The NHS' "Eatwell Plate" demonstrates clearly this change in focus, and the obesity surge and diabetes time bomb are evidence of how badly wrong politicians and health experts have been. The comments at the bottom of this NHS page do a far, far better job than I could of explaining how skewed our thinking has become about fats and carbohydrates. The processed food industry has been key in promoting grains and sugars, particularly fructose and sucrose with government support but many people are cottoning on slowly, with a surge in online writings trying to expose the myth that vegetable oils are good and animal fats are bad. Even schools are caught up in the effort to increase carbs and fruit and this frustrates me considerably.

My biggest issue with the "Healthy Eating" campaign though, be it at their school or elsewhere, is that I would really prefer my kids to eat for fuel and pleasure - social, sensory, satiety pleasures - and not think too much about it. I resent having to read every label, cook everything from scratch all the time and stress over their daily intake as it is, I try hard (and it IS hard) to ensure their lives are as normal as possible, that they don't feel too different and they don't miss out. But most of all, I would like for food and eating to be necessity not a focus, to take a back seat in life and just be something I as their mother need to consider. If we get through a day where the children have eaten when hungry, had their fill and run off back to more interesting activities then I have succeeded. A day spent thinking about every bite, each ingredient, its impact and value is a day wasted for a child, it is the responsibility of adults to feed their children appropriately and make it as mundane a process most of the time as filling the car with petrol. Of course food is to be enjoyed, but to make it a major or even the sole focus of a child's life for even a short period of time is as bad as ignoring natural appetite.

I have to say, I write none of this whilst wearing an imaginary halo, I fail miserably at this ideal many days and the children's extremely restricted diet makes it very, very difficult to achieve even our own version of normality. But my heart sank reading that newsletter column tonight, because all my efforts made on a daily basis will be shot down in flames in a misguided fortnight of demonising fats, pushing carbs, vegetable oils and fruit - but most of all in drawing attention to something which I would prefer my children not to have to think about. Add to that the fact that they will most likely be discrediting foods my twins rely on to keep them well and it's not going to be a positive experience I fear. I hope I'm wrong.

Resilience

noreply@blogger.com (Twins plus Two) — Wed, 21 Mar 2012 21:18:00 +0000

Resilience. Not a word I use very much to be honest. And one that was oh-so-painfully overused at H's previous school by the Headteacher who had co-authored a book on "Building Learning Power". Don't get me wrong, there are some inspirational ideas and a lot of good practice in that book, but the nomenclature grated ever.so.slightly. For example focussing on "Brave Spellers" was a useful means of encouraging emergent independent writing but even the children felt it was slightly overdone at times. But I digress.

Today I am a Resilient Learner however. Today I binned Hope and Trust in a positive move, but somehow "Goodbye Hope and Trust" didn't strike me as a particularly positive to a Blog post.

Today I viewed the second of two specialist school possibilities for H. As any follower of this Blog will know, I have been round in circles fretting about his academic future, yearning to Home Educate but too afraid to "jump" and fearing I would be dragging an unwilling victim with me. For too long I have been seduced by promises of "support" and "alternatives" which are about as real and believable as my husband remembering to lock the garage or my eldest son turn his light out by 10pm. Well intentioned yes, but about as likely to happen as Christmas in July.

I was quite shocked at the school I saw today. The first seemed to confuse "school" and "education" with "Care" with a capital "C". It was not somewhere I felt I could leave my child at all, a place where his identity would count for little as their overarching agenda seemed to neglect the individual - bizarre in such a small school. Micro management is probably perfect for many profoundly challenged by Autism but many like my son have a desperate, primal need for a little flexibility on their own terms in an otherwise seemingly oppressive world. And removing all of the challenging and traumatic factors isn't really helpful either - because at some point learning needs to occur, and "Brave Socialisation" (to use the analogy!) needs to happen.

Today's offering was more excruciatingly depressing. A school lacking a clear ethos or raison d'être (I did ask, the Head didn't have an answer) in a terrible state of repair. Private provision in a small environment, some specialist support in a beautiful setting, but stuck in the 1950s with no evidence of investment in decades - yet charging identical fees to the top private schools in the County! Not a computer older than a BBC Micro or an interactive whiteboard in sight the school was incredibly dated, dilapidated and depressing. Ageing portacabins with peeling lino and ancient heating enclosed in cages across the walls.... and the dormitories made MY boarding school from years ago look plush and modern. None of that would have mattered so much if I felt the teaching and support was good - but I didn't. My son would have died a little bit at that school, there was no vibrancy, no life.

As I drove away I felt utterly liberated however, as I mentally binned the sack of hope I had been carrying these past years. Hope of something different, a false sense of security when facing an uncertain future. That sack had become much heavier in recent months, with encouragement from school and health to pursue alternative placements for H for secondary school. I placed my trust in their judgement, they know my son and they are familiar with these schools. But that's just it - they don't know my son, and that is exactly why trust went into the same roadside bin with that sack of hope. From now on I am trusting no one but myself and our family with my son's future, and realism and pragmatism will guide me. The academic outcome for him at these "alternatives" would not be any better than being out of school, and our one target for his future - happiness - would slip further out of reach. Kids with ASD are emotionally needy and oh so young. They need families, need support, nurturing and understanding. There isn't a magic wand, there isn't an alternative - at least not for us. He will go to the local school, with those he knows, round the corner from home. He may well struggle, if he is unhappy he can learn at home or a combination of the two. I'm flexible - because I know my child better than anyone. He might not reach his "academic potential" but what is that in reality? This ten year old son of mine is programming Java using IntelliJ, teaching himself coding via YouTube and adapting the code (and cursing loudly) when the offered code fails to work. His current skills would earn him a practical IT GCSE, almost A level grade and I have no doubt whatsoever that he will be extremely successful in life. We will muddle on, learning from each other, taking the rough with the smooth.

You see, it isn't *just* about resources, it's about people. It's about what makes our children who they are, their individual quirks and needs. My son needs free Java flirtation time, space to keep the world out, time to bake and cook curry with his mum, knitting with his Granny and gardening with his Grandpa. He needs to watch Tracy Beaker on loop for four hours at a time on a challenging day, guard his Pokemon Card collection and sleep with his Polar Bear close at night, under the photo of his beloved hamster. How in the world can the hope of any academic qualification top those achievements and securities?

So tonight I am saying goodbye to hope and trust, in the context of the lure of an alternative future for my son, and embracing the future at the end of the path we are on. There is nothing better on offer and nothing I would rather strive more for. It is a road on which I too am learning and growing, and resilience and self confidence are two valuable assets I am gaining. Resilience in navigating my son's path through life rather than handing the task to anyone else and nurturing the determination we will both need to succeed. Both of us are learning together to cope with the stress and adversity life may bring, and coming out the other side (I hope) as better people.

"Success seems to be largely a matter of hanging on after others have let go." And one thing H does not lack is determination. I reckon he will be very successful, with us right behind him.

Normal in Our House

noreply@blogger.com (Twins plus Two) — Wed, 14 Mar 2012 20:22:00 +0000

Renata over at Just Bring the Chocolate has set a little blogging challenge – to define ‘Normal’ family life in our place.

"Anyone who says that their family is normal is lying… or in denial… or just mad. There is no such thing as the normal family, just varying degrees of weirdness. Just like the pile of things that sits hopefully at the bottom of the stairs waiting to be carried up day after day, after a while, we don’t even see our own idiosyncrasies. Parents of special needs children, arguably, embrace this weirdness to a more impressive level than many other families, and, should you come across us, you shouldn’t be surprised if some of it leaks out into everyday life."

Interesting challenge. Some days it would seem there is not much mundane, predictable and "normal" to be had around here. Having spent 4 of the past 7 days in 2 different hospitals, with 2 of the remaining 3 having outpatient appointments, having the cat "admitted" at the Vet's for ~~neurotic senile cat disease~~ doing a good impression of being at Death's Door and trying to explain to school that gluten as well as dairy, soya and wheat needs to be excluded from Kitty's diet (I provide the lunch but they are fantastic about catering for them in cooking sessions, snack etc) I'm not sure I would know what "normal" looked like if it came up and bit me. But that's the point of this challenge, to show how the seemingly bizarre, unlikely and even impossible becomes the norm for many families with children with additional needs.

Waking at the crack of dawn has always been the norm in our family. Although that should really be the "Shout of Dawn", or "Scream of Dawn". For years our mornings have started like this or this although the screaming and shouting has improved in recent months. H is oh-so-gradually getting the hang of school mornings, and who knows, by the time he leaves Primary School we might manage to leave the house without me feeling the need for ~~valium~~, a ~~stiff drink~~ and a strong coffee. Mornings are fraught, hectic and noisy, and require careful planning and preparation the night before to avoid resembling a war zone. That's fine when I am on form the night before, but if I am feeling the effects of 2-3 hours sleep in total the previous night the temptation to throw caution to the wind and "wing it" the next day is very seductive. I did that once. Just the once. Won't be doing it EVER again lol...

With two children with autoimmune inflammatory bowel disease (EGID see here) , one with AS, ADHD, and a whole host of other allegedly identified idiosyncrasies, let alone a teenager in the midst of hormone fluctuations there is considerable potential for trouble. (And that's assuming the cat behaves....) Pumps alarming, feeding tubes needing flushing, everyone's medication laying out/preparing for taking out, emergency kits checked and rechecked, physio done I could all too easily post a picture of the first thing which springs to mind to illustrate our concept of "normal".

A 10ml enteral syringe.

We go through loads of these, for medication and tube feeding. They feature in our "normal" family life. And yet I cannot think of anything less appropriate to illustrate what is "normal" for our family. Yes, our lives do revolve around meeting the additional needs of three of us, but that IS mostly the mundane, predictable and almost invisible much of the time.

Normal life here is making a joke out of almost everything, finding the humour in the most unlikely situations, creating "Thompsonisms" that would never feature in any accepted dictionary but which for us are at the centre of family life. I am blessed with a family with a fabulous sense of humour. (That's pretty potent multiplied by a factor of 6. ) I have my husband to thank for a lot of it, he can singlehandedly reduce A to a giggling, incapable wreck only minutes after starting to cry in pain. He can see the fun in any situation, although I doubt his version of the Bristol Stool Chart will be adopted any time soon!

"Normal" for us is a warped, humorous and not-a-little cynical view of the world and our family's place within it. It's about making each other laugh and see the flip side, it's the glue which binds us together. And should any one of us be feeling low, should the mundane and monotony of our "special" version of "normal" be too overwhelming, you can be sure there are several at hand to crack a joke and put everything in perspective. We're an IT savvy, gadget loving, future embracing, don't let it get you down (or offload it and move on) kind of family. Feelings matter, but we know when humour can save the day. That's my kind of normal :)

Do you enjoy reading my Blog?

noreply@blogger.com (Twins plus Two) — Wed, 29 Feb 2012 10:23:00 +0000

If so, please consider nominating me for the BritMums Blog Awards 2012. Brit Mums is Britain's biggest parenting blogging Network, which I have recently become involved with. Some of my posts have been included in their national "round-up" focus and I am keen to promote my Blog given the pleasure I derive from writing it and my aspirations for future opportunities!

Mother's Day

noreply@blogger.com (Twins plus Two) — Wed, 29 Feb 2012 10:17:00 +0000

Mothering Sunday is fast approaching, the fourth Sunday of Lent and thus a moveable feast in line with Easter and the lunar calendar. "Although it's often called Mothers' Day it has no connection with the American festival which shares its name. Traditionally, it was a day when children, mainly daughters, who had gone to work as domestic servants were given a day off to visit their mother and family.

It also holds religious significance, since centuries ago it was considered important for people to return to their home or 'mother' church once a year. So each year in the middle of Lent, everyone would visit their 'mother' church - the main church or cathedral of the area. And most historians think that it was the return to the 'Mother' church which led to the tradition of children, particularly those working as domestic servants, or as apprentices, being given the day off to visit their mother and family."

But what does it mean to you?
Fourteen years ago it was my first year as a mother, and it happened to coincide with my birthday. A special day indeed, my first as a mother myself, having previously only considered the day in the context of myself as a child. My own Mum is amazing, and I count myself incredibly fortunate to have had such a stable and loving environment to grow up in, nurtured by loving parents with a steadfast, caring and capable mother. A hard act to follow.

My first Mother's Day was also particularly poignant since (as is so often the case) my life failed to live up to the idealised master plan I intended for myself as a naive child. I found myself a single mum, working long hours miles from my family coping with a baby with chronic reflux. But like my own mother and millions of others, it takes a lot to get me down, and such trivialities are relatively easy to ride through at the tender age of 24, when sufficient sleep is a pleasant change rather than a pre-requisite for sustained sanity....

Fourteen years and a whole ocean under the bridge and I am the proud mum of four, with a loving husband, life partner and friend to share life's ups and downs. The learning curve of life has been as steep as any climbing wall at times, but Mother's Day is when I celebrate my greatest achievement in life - my children and my status as their mum. I'm far from perfect, but like the vast majority of mums across the world I put my children first and strive to be the best mum I can be.

For me it is also a day for remembering the simple pleasures of being a mum, for forgetting my status as nurse, social worker, advocate etc. Like many mums of children with disabilities and medical conditions, it's all too easy for life to become a round of caring and meeting additional needs, fighting their corner at school, ensuring they have the best opportunity to realise their potential despite the challenges they face. But on Mother's Day I will be focussing on the normal, the mundane, the oh-so-valuable and special daily aspects of being their Mum. So in that respect my childhood master plan did indeed come to full realisation, albeit not as simply as I imagined. Because from an early age, more than anything in the world I wanted to be a Mother, a Mum, someone's Mummy. And it is an incredibly fulfilling job on every level, bringing with it more challenges than I could of dreamt of, stretching me more than any corporate job and providing the deep job satisfaction any employee dreams of. It is, without a doubt, the best job in the world.

So to all mothers everywhere, whatever your day means to you, I hope March 18th is everything it possibly can be. I will be shuttling between dancing and Cross Country, doing what I love most, with those who make me complete.

Wow. Six years.

noreply@blogger.com (Twins plus Two) — Fri, 17 Feb 2012 21:28:00 +0000

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 uncomfortable/awake/insert any excuse you can come up with, they 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.

noreply@blogger.com (Twins plus Two) — Tue, 10 Jan 2012 14:21:00 +0000

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?

noreply@blogger.com (Twins plus Two) — Fri, 06 Jan 2012 20:02:00 +0000

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!

noreply@blogger.com (Twins plus Two) — Wed, 14 Dec 2011 20:14:00 +0000

‘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

noreply@blogger.com (Twins plus Two) — Mon, 05 Sep 2011 18:45:00 +0000

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.