Saturday, 28 December 2013

The Age of Enlightenment-or not!!

At what age do children start beginning to see through the veneer on life? Stop believing in magic, Father Christmas and fairies?

Far too early today. So many of the twins' friends already see through society's and their parents' efforts to keep the magic alive, and not even the full force of Disney with (arguably their best ever ) new Winter's tale "Frozen" can maintain the illusion.



Saturday, 21 December 2013

Blogging Goodbye to 2013 in Rhyme!

This is my entry for the linky "Blogging Goodbye to 2013"

'Twas the night before Christmas, and thinking aloud
I considered my year, of what I was proud
What I had published, what went in the bin,
Certainly plenty had failed to go in.

Twelve months of sharing, caring and fun
Stress and frustration and being a Mum
Tentative steps towards something for me
The children are growing and some time is free...

Well that was the theory, it rarely works out
But I write on regardless, raising my Klout 
Hoping one day to do more than my Blog
To keep myself busy- avoid getting that dog.

So in time-old tradition I'm writing a rhyme
Something I now do at each Christmastime.
Sharing my highs and my lows from the year
And sending to all of you good Christmas cheer!

Monday, 16 December 2013

Blog Award Nomination!

Vote for Musings of a 20th Century Stay at Home Mum in the UK Blog Awards I've entered the #UKBA Blog 2014 Awards. So I'm trying to get the hang of this self promotion lark and failing miserably!! I'm really in it for the writing - but anything which enables me to gain new platforms for writing has to be worth a go so if you enjoy reading my Blog, this is a shameless "VOTE ME!" post!

Sunday, 15 December 2013

"Hiding" the Presents

I was rather intrigued by the Blogging Challenge which appeared in today's Twitter Feed.
"Where do you hide your Christmas Presents?" 
Indeed. But what if the key word in that sentence were "Hide" rather than "Where" ? I could answer the "Where" part pretty succinctly. In the loft, now that I have one! I wrote recently about the ridiculous level of excitement I felt at FINALLY having some storage space, and now there is a "place for everything and everything in its place" so to speak, there is ample hiding room.

But what if the hiding was the main issue? 

I have a son with Autism who feels pretty out of control at Christmas. Christmas presents huge challenges for anyone with an Autistic Spectrum Condition. That horrible, churned up, out-of-control feeling is usually pretty common around this time of year - and I'm not talking about the stressed parents trying to juggle family, extended family, work and Christmas!



For someone who dislikes excitement, change and overwhelming complexity, the unpredictable lurching from day to day in the run up to Christmas can be just too much to cope with.

Tuesday, 10 December 2013

Isolation - it's becoming the norm and we are facilitating it.

Following on from a discussion with parents of children suffering the same condition my children have on how isolating it can be, I was reminded of my past work on Social History and the sad trend for social isolation as communities break down. There are many reasons for this - increased geographical and economic mobility being the most obvious. Our lives are also so frantically busy that we constantly try to juggle everything and have precious little time to support any notion of "community". Families live miles - often hundreds of miles apart and grandparents frequently continue to work full time as their lives continue to be hectic and demanding.


This "have it all society" is destroying communities, the backbone of society and ultimately our collective emotional wellbeing. Human Beings need roots, need to be part of a bigger whole and most importantly, they need to belong. Denying this whilst fostering a virtual social reality is unsustainable and leading to emotional unhappiness and the breakdown of Society.

Broken Google Blog Search Widget

Lots of people are discovering that the Google Blog Search Widget has broken and Google have no urgent intentions of fixing it. There is a Google thread about it which I posted some code my husband wrote as a workaround. It's not perfect, and it doesn't bring up a neat little list of post results so if you are searching for something with a number of results it's going to be a long list of full results.... but it's the best out there at the moment.

On this Blog you will see I have located it on the right hand bar, under the Google Search widget, so try it out and see.

If you wish to add it to your own blog you will need to do the following:-

Friday, 6 December 2013

It's the little things....

I met a lovely man at the hospital today - I helped him use the cash machine and buy his lunch in the WHSmith store there. He was 90, his wife of 87 had had a bad stroke 9 weeks ago and was finally coming home today. He was so thrilled bless him, and delighted to have someone with a spare five minutes to hear how excited he was. They met in Berlin after the War, both demobbed and nothing to do, no money and nowhere to go. A story which almost couldn't happen today with the daily commitments and restrictions of modern life. His wife opened her eyes last week after two months asleep, his face after nearly 70 years together was lit up with love, so grateful for the extra time with her.

I bought them a big box of chocolates to share and keep thinking of how happy he will be this evening with her finally home, I cannot tell you how happy his story made me feel. With an ageing population it's so easy to see the elderly as a burden, a responsibility which gives nothing back but nothing could be further from the truth. The older generation have so much to give, but the time and patience it takes to receive is all too limited in our high speed society.

This week, take time to listen to someone elderly who has something to say. Learn something from someone's past. I did, and I have, and the gift that man gave me is far greater than any box of chocolates......





All the Small Things - MummyNeverSleeps

Nelson Mandela

Interesting one today - this is known as "winging it". I am going to attempt to write about a topic I know very little about, because for me it raises some hugely important questions which I think we should be actively discussing in society today. So bear with my lack of knowledge, I will attempt to learn as I go!

With the death of Nelson Mandela I find myself remembering that quote from Machiavelli which was frequently mentioned during my A level History course.
"The end justifies the means."
Nelson Mandela was a terrorist and freedom fighter, who whether he got blood on his own hands certainly shared responsibility for the violence in South Africa under Apartheid in the 1980s. And yet we mourn his death and celebrate his life as a hero, the saviour of a nation and ambassador for peace. This is a HUGE contradiction if you look at his life as a whole, and yet a perfectly valid response if you focus on the progress in South Africa he is largely responsible for and the unique way he united a divided country to bring it into the twenty first century as one nation.

Tuesday, 3 December 2013

The Simple Things - Autism Spectrum Conditions and Christmas

In so many ways we overcomplicate life. Classifying, compartmentalising and upgrading. Especially upgrading and constantly "improving". It's just so easy to get caught up in the hype - especially at Christmas. But the big irony is that we actually over complicate the very things we seek to simplify and in the process build a fragile system which can all to easily malfunction. This is particularly true for those on the Autism Spectrum.

We constantly kid ourselves that greater choice brings greater satisfaction and streamlined simplicity. Or that complex but "efficient" solutions which are anything but robust are "progress". But it's largely an illusion, and precipitates huge amounts of stress for many of us on so many levels - particularly at Christmas.

Christmas is a hugely stressful time for anyone living with Autism. Someone who dislikes excitement, change and overwhelming complexity. Cannot cope with increased stimulation, expectation or change. Sometimes it is SO important to go "back to basics" at this time of year, with a few additional simple additions to veer the focus off the "Big Day".


Wednesday, 27 November 2013

Just Me

Jodie at Life with Pink Princesses has initiated a new Blog Hop today, where the focus is only on ME or YOU the writer, your likes and dislikes, what makes you tick and what defines you.

Great idea I hear you say, the vast majority of Blogs are focussing outwards, writing about family, society, etc from the point of view of the observer. Something different! In reality though, no one wants to read a Blog entitled "All About Me" - unless you are some uber famous, ultra cool celeb - and then I'm not sure anyone *really* wants to read about you - but it certainly sells magazines. Especially if you exaggerate. At least a little.... or quite a lot. But the occasional inward searching comment from an author can certainly illuminate their writing.

It's actually incredibly hard to stop and think about yourself if you are a busy parent, employed or not. (see, I didn't say "working" or not, as everyone knows stay at home parents work incredibly hard too!! :P ) It seems my every waking moment is focussed on the needs of the family - furry members included. Even those silent hours in the night are all too frequently occupied with insomniac worries about everyone else - except me. 

It can actually be quite scary to focus on yourself, Suffolk Carers recently undertook a survey about the personal health of carers in the county, because it is widely recognised that those who care for anyone frequently neglect their own health and needs. And the same is often true of parents who are not "carers" in the official sense, our anthropological instinct is to focus on our family, often at the expense of ourselves. At a very basic level being a parent is your priority, the rest of you is pushed a little sideways, or morphs into the new "parent-you" by necessity.

So I've spend all day mulling this over, whilst cooking, doing the ironing, feeding the cats, cleaning out the guinea pig, feeding the cats (again) and spending a not-inconsiderable amount of time photo-shopping my youngest son's class "Travelling Bear" into a picture of the Tardis in the absence of any exciting alternative photo opportunities..... Don't ask - but I think the result was pretty good for a first attempt!

1) You see, that's definitely one of the things which defines me. I am pretty competitive. Not in an unpleasant superior way (honest!!!) but just that I love a good competition. Be it a debate, race, test, you name it. I give it 110%. And some. In the face of holidays to Marrakech, Turkey, Disney and Kenya in the Travelling Bear book I got competitive - with a sense of humour. Which brings me neatly to number 2.

2) Sense of humour. Whilst there is definitely an element of "If I don't laugh I'll cry" on occasion, and also times when I can have a complete sense of humour failure (often after several nights of insomnia, see above) I do prefer to see the funny side of most things. This is pretty much normal in our house with a generous helping of quirky family twisted humour. So photo shopping Bob the Bear onto the Tardis had me in stitches, I just hope the teacher gets the joke! (Apparently it's not good enough according to my other half though as I forget to include a fez.)

3)Those of you who know me will be wondering why organisation is not at the top of the list, although really it's more the need to be obsessively tidy. Despite a husband, four children, three cats, and a guinea pig doing their utmost to challenge me on a daily hourly basis with this one, I win through most days. (See, more competitiveness there...) I am also very organised too, but this is second to an inner need for order amidst the chaos. There are many aspects of our  my life (taking control there, it's about me, right?) over which I have no control. Exerting extreme domination over the house and its contents makes me feel SO much better.

4)I am also extremely creative. And practical. I can usually find a solution to most things, and am equally handy with a hammer as a sewing needle. I can't be doing with waiting for assistance (lacking patience should perhaps be another key point here) and will always just get stuck in. Aaaaaand hurt my back/hip/arm/whichever takes the most strain on that occasion. Yes - definitely impatient! I rarely have the opportunities to indulge my creative side as much as I would like, but I'm not fussy about the medium. Clay, photo/image manipulation, designing web pages, sewing, knitting, baking, whatever. Love it.

5)Not sure why I saved it to last - but currently my Blog defines me well.  I love writing (and reading, which inspires me) as I explained here . No matter what I write about, Blogging/writing is something I am doing for myself, and it is something I derive a huge amount of satisfaction from. Perhaps most of all it is MY time that I write in - in the small hours when the children are asleep, whilst they are at school and the dinner is cooking, those precious little snatches of time where I reassert my individuality and reclaim myself in a way nothing else has permitted. Blogging for me is sanity preservation, a unique way of hanging on to that part of me that has been drowned out by my life as a parent and carer. And, most importantly, it allows me to be a better parent and carer as I have an outlet. Somewhere to be me.




This post is part of the “Just Me” blog hop every Tuesday.

Just Me - Life With Pink Princesses

Saturday, 23 November 2013

Alpro Soya "Nut-Gate"

This is copied from my Recipe Resource Blog . 

The Interwebs are currently buzzing with the news that Alpro Soya are now printing warnings of potential hazelnut and almond contamination in their soya products as they are altering sites for production of their dairy free alternative milks. Understandably, there is an outcry as many who avoid dairy products choose soya as their dairy substitute and are also allergic to nuts. Alpro responded to concerns on the Allergy UK website. Certainly their measures sound as stringent as anything any parent of an allergic child can achieve by any other means but there are always those who will be affected. This is a production choice Alpro have made and they may indeed lose customers because of it. However, I sincerely believe the bigger issue is being ignored here.

In an increasingly allergic world there are as many combinations of allergies in individuals as there are allergic people. And any reliance on only one substitute can precipitate issues including new allergic responses. The reliance of the dairy free industry on soya is not a long term option, far too many people have IgE and non IgE responses to Soya - and it is one of the "Big Four" to avoid  according to many health professionals. Certainly Gt Ormond Street Hospital advise going "MEWS free" as an important first step when embarking on exclusion diets. (MEWS = Milk, egg, wheat and soy)

Undoubtedly Allergic Disease is almost epidemic at present with the UK topping the world table of incidence of allergic disease. More about that here, information learned when I attended the All Party Group for Allergy at Westminster this Autumn. We should not be complacent in our careful replacement of major allergens from our own or (especially not) from our children's diets. Fortification of alternatives (e.g. calcium and Vitamin D in milk alternatives) is essential, as is careful pricing of worthwhile products, support for new producers and accurate information for consumers. The fact that yet another producer appears to have caved to the litigation-prevention soft option is not good news. It seems a massive fob-off for those shopping for exclusion diets - avoiding the issue of careful checking and stringent manufacturing processes. Or does it?

Tuesday, 19 November 2013

Feminism? I prefer Realism!

Goldieblox
I watched with interest the new trailer for Goldieblox this evening, the toy taking America by storm. It made me so happy and yet profoundly sad in quick succession and I'll tell you why.

I'm not that old - really I'm not. I might have hit the big 4-0 this year but my childhood (despite assertions to the contrary from my seven year old twins) was not in the "Olden Days". We had TV, most mod cons and even (*gasp*) computers and computer games before I was out of my teens. Yet why does my childhood seem so very, very long ago - especially when I consider my daughter's experiences?


Saturday, 16 November 2013

Education at 3? No thanks.

Sally Morgan, Chair of OFSTED wrote a guest blog post for Mumsnet defending her belief that children should
begin their education as toddlers to be "school ready" at 5. Whilst claiming, in her own words
“The importance of the quality of the provision small children have in early years settings is well documented, but as I found last week in the reactions to a speech I made, the whole topic is quite contentious! "Early years" provision includes nurseries, childminders, nannies, play groups and, of course, these are often part-time and mixed with time at home with parents or grandparents."
She then goes on to see that she would like to see more of
"the 3-18 model is working successfully in many academies up and down the UK."
I strongly disagree with this. Shipping children off outside the home too early can be highly detrimental emotionally, especially to boys. There can never be a "one size fits all" approach to pre school provision and all children are different - and they are all also very, very young. Parents know their children best and choice is always a good thing. Preschools, childminders, family members and - shock horror- PARENTS THEMSELVES are in fact very well placed to deliver an excellent pre school experience in a loving environment. Sadly with the increase in nursery classes at school (which OFSTED actively encourage) taking children as young as 3 the numbers of state funded children attending pre schools (and other settings) is falling - and those wonderful places are closing in alarming numbers.

Friday, 15 November 2013

The Paradox of Social Media

I often think of my life as a Venn Diagram. You know, the social circles which Google + uses to illustrate your groups of friends and your interaction with them, the overlapping sections where you know people from more than one group etc. It sort of works. But I think I need some kind of 3 D version, with options to be just outside each circle, or on the periphery- never quite breaking in to any one sphere. Because that's how it's always felt. It was like feeling I was on the outside, looking in.

After no small amount of consideration I believe this is a casualty of life complexity, life just getting in the way. You see what that simple 2D diagram is missing is the dimension where the space/time continuum shifted sufficiently that I missed that all important first meeting to be part of circle A because someone was ill, or when I couldn't make the follow up discussion in circle B because at that moment I was considering something completely different on topic C after a night of even less sleep than the previous one, and I still hadn't completed the necessary paperwork to access the circle D which was hurtling ahead faster than I could keep up.



It's like plate spinning in a schizophrenic multiverse that you are trying to stay in tune with. And it's not going to happen without a revolution in technology facilitating multi-place time travel with cloning, but that doesn't make it any less lonely.

Social Media as  Window to the World
That's where the internet comes in - for me, it knits it all together, providing that additional dimension which seems to touch on (almost) all areas of my life and keeps me in the loop. Without it I would certainly feel more disconnected and definitely less "complete" as a person. It's like a layer of superficial cling film which keeps me connected to all those circles which make up my life. But the internet can all too easily become something very dark and distorted. This week I have become painfully aware of the dangers on the internet. especially for our vulnerable teens.

Saturday, 9 November 2013

Mummy Blogger? P L E A S E ........


Mumsnet are currently hosting Blogfest 2013 .

Although I have been active online and on many forums for the past 12 years I have always avoided Mumsnet to be honest, mainly because whilst being a Mum is most definitely the best job in the world, belonging to a forum focussing further on parenting and the minutiae of day to day life bringing up children is the antithesis of why I use the internet. And I find the notion of "Mummy Blogger' restrictive, patronising and mildly insulting because in Blogging I assert myself, the "me" that exists beyond my role as Mum and the essential part that is often buried deep beneath it.

Friday, 1 November 2013

Was this in the Plan? Blog Hop Post

Steph over at "Was this in the Plan" has started a Blog Hop which I am delighted to participate in!

The Power of Coco Pops!

I've taken the liberty of re-hashing a post I wrote in SATS week this year, because for me it speaks volumes. As a Primary school teacher I have many ideas about how "learning" and "education" works. My second son has forced me to revisit and mostly rethink them. Certainly not "In the Plan" when I planned my family, and perhaps most profound is the "learning" I have done along the way alongside him.


Technology in school - when embracing the future is a step too far.

Our children's school is making the bold move of not even providing iPads in school but adding them to the school "kit" list. It *is* an independent school but I still find the assumption that parents are going to cough up several hundred pounds for an expensive luxury is a little insulting. Christmas is not a big spending spree in this house and our children are pretty fortunate already. If tablet devices were going to replace the extremely heavy sets of textbooks our children lug to school and back each day then I might be in favour, but content available is still very American, and very restricted.




Monday, 7 October 2013

Blue Sky Thinking

Three of our children attend an excellent private school which my brother and I also attended (many!) years ago. Our eldest has flourished there, really come into his own taking advantage of so many of the opportunities on offer - but interestingly very much in his own time. Initially he was wary of over-commitment and worked hard on the academic stuff, biding his time to leap into the unknown. This came relatively late, after several years of us wondering whether his laid back approach was really what we had hoped for when sending him there!

But you have to trust your children, give them the tools and opportunities and be there in a supportive - NOT a driving - role.

Friday, 13 September 2013

Gut Allergies - Why We Need Awareness And Understanding


On the support forum I run and another I co run I am constantly writing the same replies to the same questions. Time and again the same questions come up - a child/baby with reflux who the doctors say they will "always" outgrow by 6 months fails to do so. Then 12 months comes, but weaning is problematic and the child appears to be reacting adversely to Cows Milk, Wheat and other foods. Tests are negative and parents are fobbed off and made to feel they are blowing symptoms out of proportion.

Many doctors perform allergy tests, for gut allergies which cannot be tested for, and then promptly dismiss the case because there is nothing for them to do. They may perform a pH study, previously the "Gold Standard" reflux test which cannot detect alkaline/allergic reflux or pressure changes in the bowel and possible allergic bowel inflammation is never picked up. Few hospitals can offer an impedance study, fewer still know how to interpret the results adequately. So because they don't have a clear answer many doctors are dismissive.

You would be horrified how often this happens, I hear about it all the time.

Some carry out endoscopies but stop above the stomach and the results are clear - so there must be "nothing really wrong". All too often the spotlight is then turned on the mother who "must" be neurotic, over-reporting symptoms, depressed perhaps? But lack of understanding or explanation is NEVER an excuse for being dismissive and accusatory. Ignorance does not excuse such actions - or have we not come so far from the Witch hunts of the seventeenth century? I have no explanation does not equal "someone is to blame". Even the most sympathetic doctors run out of ideas when tests come back clear.

I'm not sure what alarms me most - that there is still so little understanding amongst health professionals about gut allergies and their impact on the full length of the GI tract and elsewhere, or the stark truth that gut allergies in infants and children are occurring in epidemic proportions.

Friday, 6 September 2013

Forget juggling, let's try cloning next...

Please speak quietly. I am currently in a catatonic state having made it through the first few days of the new school year with three schools (and four children between them) to juggle. I'm not sure I am likely to accurately process much for the next two days....



Monday, 26 August 2013

"It's not the despair, it's the HOPE that gets you"

I often think of this quote, it has resonated deeply on many occasions, and none more so than the troughs in the rollercoaster that is dealing with chronic illness.

Over the years since the twins were born we have coped with everything life threw at us, sleep deprivation, severe reflux, feeding difficulties, poor growth, swallowing problems, bowel problems, food allergies and exclusion diets, hypermobility, subluxing joints, pronating feet, autonomic problems.... the list feels endless at times. But you get on with it. it's not as if there is much choice! But when someone hands you a buoyancy aid you grab it. Fast. With both hands....


Saturday, 3 August 2013

Great Excitement!

I can hardly contain myself.... I am beyond excited!

What, may you ask, is the reason for such enthusiasm and eagerness? A holiday? Have I won the lottery? Secured a new job?..... None of the above. After three years of oh-so-very-patient really impatient waiting we are boarding our loft space and getting some STORAGE baby!!!!

It honestly IS that exciting. Six people and many years of stuff accumulation and even the most reformed of hoarders would struggle to cope with a couple of measly cupboards for storage. I'm not even talking about the kind of cupboards Harry Potter would have been grateful to call his bedroom, these are more the kind you quickly shove everything in and shut the door. Fast. Hoping it doesn't open again immediately.

My friends will tell you I am a very tidy person - obsessively so I guess. Ok, I admit it, verging on OCD at times. BUT for me keeping in control of my environment when other aspects of my life go spiralling out of control is my way of hanging in there, telling myself I can get through whatever it is and come out the other side. Unfortunately the flip side of this is that any untidiness/lack of extreme organisation sends me into a headspin and I find it extremely difficult to cope. Recognising this definitely helps but I have yet to find a solution except let the anxiety take its course whilst a tidy and sort - much to the amusement of those around me I'm sure.

I suspect my years at boarding school are much to blame for this need to organise and sort. We were allocated a small wardrobe and two shelves per person in each dormitory. The concept of not "taking up too much room" was drummed into us until I would panic before each term over what I might take. Whilst I'm quite sure I took this advice far too literally it had a profound impact on me to this day. Coming home from a shopping expedition is one of the most stressful moments for me - whether there will be room for everything - and whether I have too much of anything.

It has meant over the years that I have parted with items I would rather have hung on to, let go a few of the sentimental things I could really have done with holding fast to. I'm quite a sentimental person, someone who finds looking forward much harder than looking back, and someone who finds the smell, sight and touch of something old so profoundly evocative that I can be reduced to tears in an instant. As an historian I indulge myself regularly reading about and researching into the "Past"   finding some aspects more difficult to return from than others.

So what of my loft? Why am I honestly that excited?

Because apart from the wholly cathartic process of sorting through everything and "filing" it neatly in my new space, I gain oodles of cupboard space and permission to retain more. To hang on to more, retain more of the present - and exert control and order on my environment. It's better than a holiday, and the next best thing to the elusive magic wand I seek to regain a little control over the other aspects of my life - the children's health, education and future.


One of my favourite quotes is:-
"If you're not living life on the edge you are taking up too much room." 
A favourite for obvious reasons but it works for me on so many levels. Flying by the seat of your pants through an often chaotic life, but with the security blanket of a home environment in perfect order. Works for me. Lofts ROCK!!!

Tuesday, 25 June 2013

Independence

I've been thinking about the concept of independence quite a lot recently. With H about to set off to High School in September, learning to walk to school safely by himself and (attempt to) pack his own bag each day it was bound to be playing on my mind. However, I'm actually referring to independence in the context of his younger siblings - because H IS actually gaining independence, and in a terrifying-but-oh-so-liberating way I am watching him grow and mature with a smile on my face day by day. In fact that smile is fairly smug if the truth be told, since we have come within a hair's breadth of total exclusion, Special Needs placement, PRU and respite care more times than I care to remember over the past years. But there he is, eleven and a half - going on 15 in oh so many ways and yet still emotionally so very young. Yes, I'm pretty smug about that.

But the twins are a different "kettle of fish" entirely. A in particular hangs on to me, paws at me, "needs" me in a way his older brothers never did. You might say this is not that surprising given that he has complex health issues - but so does H, and so do an awful lot of other children I know who do not have this strong immature attachment at seven and a half.

I've pondered this at great length, with a large dose of self blame and not a great deal of clarity or insight. But today, whilst baking their "free from" sausage rolls, the penny dropped. Or more precisely, H's cat decided to steal one when my back was turned - and the complete over-reaction this precipitated and the depths of despair I felt caused the "penny" to sink firmly and completely at last.

Sunday, 9 June 2013

Special Needs Blogging?

As we have acquired symptoms, diagnoses, (or a lack of diagnoses) medications and a bucketful of frustration over the years I can understand why there is such a strong "Special Needs" community on the internet. It is a source of support for many, all the more because being a full time Carer is incredibly isolating. Without the information, experience, social contact and above all - understanding such a Network brings many many lives would be infinitely poorer.

Having children with complex health issues is isolating and lonely at times, and certainly in recent years I have felt progressively more divorced from other mums in the school playground as our experience of our children growing up is increasingly different from theirs. I could write about it regularly, share my inner turmoil at 4am when son number 3 is sat crying in pain on the toilet and how I feel utterly unable to wake up properly and hold his hand - let alone alleviate his discomfort somehow. Or I could share my despair at the haphazard and ill-prepared attempt by son number 2's school made to rewrite an IEP which is eighteen months out of date, in preparation for an Annual Review of his Statement before he transitions to High School. Maybe you would like to hear of the constant tummy pain our daughter endures when her condition is flaring, or the head-bangingly infuriating lack of response from son number two's Gt Ormond St. consultant after 4 months of chronic bowel impaction and non-existent motility. But I would rather not. I would far rather share something like this :-


You see, not only do YOU not wish to hear about all of that - neither do I. I live it, and spend far too much time pondering, wishing, hoping over it all.  The last thing I want to do is write about it. Which is why it is utterly beyond me why some people wish to air every tiny detail of their child's medical condition in public over the internet in blow-by-blow graphic accounts. Yet you would be surprised how many do!

Wednesday, 15 May 2013

Inspired by Coco Pops - who would have thought it?

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 so 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.

His school are offering free breakfasts to Year 6 pupils and Coco Pops are on the menu. 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 .....

Saturday, 20 April 2013

"That" Person

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 ├╝ber 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!





Monday, 8 April 2013

Maggie Thatcher - RIP

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.

Sunday, 7 April 2013

Do you enjoy reading my Blog?

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

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


Friday, 5 April 2013

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

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.

Friday, 15 March 2013

Knowledge is Power, right?

You know the saying "Knowledge is Power"?  However it seems the opposite is true at times and my experiences of the NHS over the past fortnight would sadly concur. 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 dictat 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, 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 utterly 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"before. 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  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. In the medical world this has been explored in a study reported here which clearly illustrated the difficulties those with knowledge and understanding of their condition face.

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. So it is highly inappropriate for any centralised control of something which should be as individually focussed as education.



What is worse is the dissemination of these centralised "truths" via local teams of poorly informed individuals with little respect for anything - or anyone - beyond their next performance audit. 

"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, yet ignorance is never an excuse for suspicion, yet it is legitimised in the current system.

A parent has FEWER RIGHTS in the family court than someone on trial for murder in a criminal court. Yet the way we view parents in this country is the real crime.

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. 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 made 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.


Monday, 11 February 2013

Feeding Tube Awareness Week



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 :)


Sunday, 27 January 2013

Happy Birthday Harry.


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.
Someone once said to me that "God never gives you more than you can cope with". I think I laughed at that point.....

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 “l” in that word. Very important that.... Because just like his siblings before and after he was a very *sicky* child. (No “l”). 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. 

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
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