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.

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.

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.

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 :)

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