Monday, 24 December 2012

Christmas Thoughts!

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!

Sunday, 4 November 2012

Seriously - VOTING for the local police commissioner?

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.

Thursday, 25 October 2012

All about Allergies, immunity and Autoimmune Conditions

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.

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.

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.

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.

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.

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.

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.

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.

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. 

Friday, 31 August 2012

The Bigger Picture

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.

Wednesday, 11 July 2012

Staycation v Vacation

So it's pouring with rain and has been continuously for the past 48 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?!

Friday, 29 June 2012

Rose amongst thorns

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.

Tuesday, 22 May 2012

Spontaneous Combustion

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....

Friday, 27 April 2012

Healthy Eating?

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.

NHS "Health Eating" Campaign photo

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?

Wednesday, 21 March 2012


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 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.

Wednesday, 14 March 2012

Normal in Our House

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 :)

Wednesday, 29 February 2012

Do you enjoy reading my Blog?

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!

Brilliance in Blogging: OUTSTANDING!

Friday, 17 February 2012

Wow. Six years.

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

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

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

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

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

It's scary how fast time flies, but so exciting sharing the journey.
Happy 6th Birthday Kitty and Archie, my Mini-Me and Monkey :)

Throwback Thursday

Tuesday, 10 January 2012

Just call me Mrs Skittle.

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

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

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

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

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

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

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

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

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

Friday, 6 January 2012

New Year or Same Old?

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

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

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

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