"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....

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!!!

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.

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!

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 .....

"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 über levels of organisation with the task nailed before you leave home.

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

Maggie Thatcher - RIP

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.