Monday, 16 November 2015

Facing Facts - Name your Nemesis

The events in Paris on Friday 13th have precipitated a great deal of thought, comment and consideration across the internet.


The excusers are out in force, confusing the obvious truth that no one wants war, or death or killing, with the need to excuse terrorists, blame ourselves or just quite simply rearrange the facts to suit an ostrich mentality which prefers to live in a happy bubble - or a self-deprecating one at least.

Image courtesy of Melbourne Streets Avant-garde via Flickr
Why do we DO that? Why are a subset of British people (in particular) some of the world's best at self-effacement? Why do we deny every ounce of national pride, and drown our self respect in shame? Shame for what? For a history that is not purely glorious? Can any nation boast such a past? Surely recognition of past wrongs, past less-than-ideal choices is precisely what can make a country great?

A country with a conscience has two choices. Sit and watch on the sidelines, opting out of the present, or capitalise on that conscience to improve the future for all.

Right now, too many people are choosing the former option. The group calling themselves Islamic State have claimed responsibility for the horrific attacks in Paris. These are religious extremists for whom dying for their cause is the ultimate goal. These are not moderate Muslims, whom are as disgusted, appalled and distanced from this extreme version of Islam as the rest of us. An excellent article in The Atlantic magazine today pointed out that this group is religious, extremely so, with a warped version of Islam that has no place in modern society. It is vital we recognise and address this, or we have no hope of ending the terror. With Armageddon as their end game, diplomatic talks are just not going to cut it...

Monday, 14 September 2015

Action not Sympathy

Syria has been in the news for so long that many people have stopped listening. The unfolding media story about the current refugee crisis has appeared almost as if by magic - the underlying causes distant and poorly understood because they don't make headlines. But understanding the causes is always important because that is the key to improving the future. Increased objectivity requires subjectivity - not snapshots of current events divorced from their past.

The civil war in Syrian appeared to many to be part of the so called "Arab Spring", a wave of cries for independence from those subject to authoritarian rule in the Middle East. However, as this cartoon succinctly explains, the biggest underlying cause of the Syrian War was in fact, Climate Change. The exodus from the rural areas of Syria when crops failed during the worst drought in the region on record destabilised urban areas - and what might have been a simmering dissatisfaction exploded.

Syria should be a lesson for us all.



The current, tragic refugee situation is also in no small part due to our intervention in Iraq under Labour which destabilised the Middle East and precipitated the "Arab Spring". The West then misguidedly, largely under public pressure, supported and funded the opposition to Assad in Syria. That initial opposition was in no small part what we today know as ISIS.

For all these reasons international responsibility should be accepted and consensus sought to respond to the situation. All agree crisis management is not enough, a coherent long-term policy is needed to deal with the problem at source. That would need renewed international efforts to sort out the civil war in Syria and destroy IS, yet neither is likely to happen any time soon. We can't even get past the initial emotional response, let alone begin to tease apart the facts. The public got it wrong before - and should bear a large chunk of responsibility for the current strength of ISIS and Russian support for Assad, people should think carefully about an over-reaction to a heart-wrenching situation. The power of social media and our thirst for a "quick fix" of news perpetuates knee-jerk responses to events. We must not lose sight of the bigger picture though and engage our brains as well as our hearts before responding. Even worse, viewing events elsewhere through the spectacles of our own lives distorts reality further.

"Most Syrians want to stay in their country or close by. Instead of the siren calls luring them across the sea to an uncertain fate, they need our practical help on the ground to give them food, shelter and the strength, one day, to take their homeland back." 

True. We should never forget the appalling reality that is life for many, in a war-torn country struggling to survive and leave fellow human beings to "get on with it". The video below has a powerful message. 


This isn't new, and I've seen it before, which is perhaps even sadder since the war in Syria is now so old. But the...


Images like this video and the photo below matter, because we live in a global environment, where ignoring events on the other side of the planet no longer buys you peaceful and ignorant isolationism. We can't pick and choose which parts of the world take our interest, we have a responsibility to consider the whole which in turn impacts on every one of us. But images that focus on individuals are only part of the story. No conflict is ever won by identifying with the individual  - and the same is true of international crises.

Courtesy of Bengin Ahmad

The media's current obsession with a "refugee crisis" - which is very real and affecting many people in different areas of the Middle East and Africa - neglects the migrant crisis and the longer term impact of the "Arab Spring". In fact most of those people you see on TV are not asylum seekers, but migrants who are opportunistically seeking to enter a more affluent country at a time when national borders are struggling to cope. Many have even held jobs for several years in countries they have already claimed asylum. Today the BBC began to acknowledge this. Confusing refugees with migrants has also precipitated an hysterical response from many including celebrities engaged in an unpleasant "caring one-upmanship" because a boy died tragically crossing from Turkey. But that's just a tiny part of the real situation.

The real people suffering are those in the refugee camps, who have yet to claim asylum, whom the World Food Programme and UNICEF are trying to support. Those people whose funding has been cut by all governments except the UK as they struggle to finance the mass migration of those who have already successfully claimed asylum, but who seek to move further to better themselves.

Whilst that's highly understandable no one mentions that according to the Dublin Agreement refugees must claim asylum in the first country they reach and cannot make multiple claims. That some fellow muslim nations nearby are doing nothing and Saudi Arabia has tens of thousands of air conditioned tents on their border close to Syria. That many people on the boats are seizing the opportunity when they have been several years in Turkey, with jobs and homes there. That those taking vast sums to smuggle these migrants are bankrolling ISIS who are also using the current crisis to get fighters across into Europe. And that the boy who tragically died was not even a refugee. He had a home in Turkey for 3 years and his mother wanted to stay. His father wanted to join family in Canada but lacked legal means to do so.

Last week I said that Europe wouldn't maintain its open borders and already many countries are closing theirs. There is little support for free migration in any country in the world, and most leaders recognise that their first duty is to the people whom they represent. Increasing a population by even 1% overnight has an enormous long term impact on resources and prosperity, can threaten national security, national health and well being. We should be helping the refugees, those rendered stateless due to conflict in Syria, but evacuating vast numbers in an uncontrolled way is sure to precipitate dangerous tensions across Europe and leaves a vacuum in the Middle East which will destabilise the situation further.

Short-termism has become endemic in world (as well as domestic) politics, but we must take our heads out of the proverbial sand and look beyond the here and now or the future will take us by surprise once again.



Brilliant blog posts on HonestMum.com

Saturday, 12 September 2015

Round we go again....

This is H, aged 5, at his sports day many years ago. He's looking confused, and not a little distressed. You see he'd just run the 50m running "race" and won by a mile. Fastest boy in his year group. The day is forever etched into my memory - but not because of this great achievement. Let's face it this was in Reception, when at least half the year can barely coordinate themselves sufficiently to hurtle down the track let alone understand the point of it all.  No, the reason I will never forget the day was because of the comment made by the teacher running the event.

"Round you go again!" she said.


You see, his school didn't believe in competitive sports. Ever. "Everyone's a Winner" was the school's motto, and very commendable it sounded - if a little overly politically correct. But to put this ethos into context you should know that this little boy had never, ever been a "winner" in his life.

Non verbal until well past the age of three, he found school impossible to comprehend. He spent most of Reception under the table, a convenient place from which to lob heavy books at any passing teacher! With 46 fixed term exclusions to his name by the age of six school was not somewhere he shone. Rather he endured, they crisis managed and I cried. A lot.

So when my little Cygnet (as his class was known) raced down that track, completely engaged and utterly focussed on that finish line, I could have cheerfully strangled the insensitive, dismissive voice that expected him to keep re-running the absurd "race" until it was time to move on to the next activity.

WHAT ON EARTH FOR???

There is a reason children participate in a huge variety of activities in school, beyond the academic, and it isn't just to give the teachers a break. Children learn in a huge variety of ways, and learning is never solely about reading and writing. Emotional and social education is a fundamental part of any child's education, and many children - particularly younger ones, gain most social and emotional learning from activities outside the classroom, in addition to the holistic environment they are in. My child had, at that moment, made an enormous breakthrough. He had been engaged in a group activity, focussed on a delayed result which required immediate engagement and participation, and appreciated the potential reward of any effort he made.

Which was swiftly taken away from him with that single sentence.

Unsurprisingly, the children who excel in the classroom are rarely those who are equally talented at sport. Or music, or art. All children are individuals with gifts, talents, difficulties and challenges as diverse as their faces. So denying children the opportunity to redress any imbalance within the classroom by removing competition outside, is misguided and potentially damaging.

So why am I telling you this now?

You may well ask. Two reasons really. H is nearly 14 and we've seen a complete turnaround over the years. Still hugely challenging at times, he now excels in the classroom, whilst the athletics track brings more of a challenge. Due to poor management of joint hypermobility and a huge delay in obtaining appropriate support he not only has completely flat feet but also something known as external tibial torsion. Basically his legs curve outwards below the knee, offsetting his entire skeleton and he simply cannot run fast anymore. Indeed, before he started wearing day splints, night splints and summer in casts to stretch his calf muscles last year, he could barely run at all.

The second reason for remembering this event is that we do seem to be "going round again" with the twins. Unable to play much sport because of health issues my youngest son is a gifted chorister. But no amount of persuasion could prompt his school to permit him to shine. Their obsession with group work and "equal opportunity" blinded them to his lack of opportunity in other areas. His singing gives him confidence and since joining our local church choir he is a different child.


Similarly, his twin is incredibly good at art. Whilst that might seem rather boastful, I can honestly tell you that she's really not much good at team games, struggles with Maths and finds friendships quite a challenge at times. Art is her "thing". But try convincing anyone that's it's ok to excel publicly and gain opportunities to work outside of a group and it's as if you've suddenly grown a second head.


H himself summed it up best after his enthusiastic and commendable participation in his High School Sports Day in July this year. He tried so hard and wasn't last but was quite thoughtful after. He hadn't forgotten that day eight years ago either.


"I was fast once, wasn't I Mummy? When it didn't count."

Except it did. It counted HUGELY for me. I observed and recognised every little achievement in those 50m and will never, ever forget that day. It's made me want to celebrate all goals reached, to recognise all my children's talents and appreciate where they are NOW, and let them feel good about themselves.  Because none of us are equal - and difference isn't a bad thing. That child winning the race may well be fighting battles you have no comprehension of - and deserves to be a winner, to come first. It might be the only time they do.



  Brilliant blog posts on HonestMum.com

Thursday, 30 July 2015

A Lion Named Cecil

The internet is buzzing to the hashtag #CeciltheLion, so the topic barely needs an introduction. Butchered by American dentist Walter Palmer, a father of two from Minnesota. the story is abhorrent and distressing, but also profoundly informative on our views on humanity and man's place within the animal kingdom.

The world wide web has galvanised itself as judge and jury and I suspect despite his apology Walter Palmer's days as a dentist are over. According to The Mail he has lied about the location of a bear he hunted and killed in the past, and further allegations continue to surface. He has apologised - but his apology further highlights the bizarre way we categorise animals in our attempt to understand our place in the world. Palmer said he didn't realise that the lion had a name or that he was breaking the law by killing an animal that had been coaxed away from the game reserve it lived on.

It's this response that has had such a profound impact on me.


What is it about a wild animal with a name?

Tuesday, 28 July 2015

Survival - top tips for getting through to September!

The summer holidays. Those nine weeks that loom large after the Christmas frenzy dies down. And yes, I did say nine, although I guess if you want to be pedantic it's a couple of days under nine .... but seriously, who is splitting hairs here? It's week four and they have all gone to bed early after yet another fight and it could just as well be week one given the scary amount of time yet to go!

Don't get me wrong, I love my kids. And I would love to spend quality time with them over the summer. And we do achieve it at times. I just wish they liked each other - at least a little bit!

I did have a plan. Sort of. It's not as if you bury your head in the sand and pretend two months a year don't happen, they loom large once Easter is over and necessitate a Category 5 level of planning. But the Great British Weather hasn't helped and I'm stuck!

I remember my first summer holiday as a mum. Thrilled to have a full two months to spend with my (then eight month old) little boy every single day was savoured. Having returned to work when he was a mere twelve weeks old (the archaic maternity law then stated that 14 weeks was my maximum time off - although my employer would have gladly let me go indefinitely for daring to fall pregnant in my first year of work!) any time off was incredibly valuable. The easiest of my four children by several miles (and some) we had a truly epic summer. Travelling to stay with friends, days out, quiet days at home, trips together - it was a really special two months and perhaps set the bar a little too high. Because let's face it, the reality for most of us is that the key word for the school summer holidays isn't so much excitement as SURVIVAL.


So for those equally trapped, struggling to create some precious memories out of a quagmire of frustration, here are some top tips!

Tuesday, 23 June 2015

Why the best is no longer good enough

There have been a few interesting articles on education in social media of late. Four year olds saddled with striving for targets at school which nearly half of them fail to meet, the depressing news that we have permitted primary education to get into a "terrible mess", that homework damages our kids and that our teenagers are more stressed than ever before, many suffering mental health problems as a direct result of being put under far too much pressure.

Superficially they might seem to carry the same message - and they do, but it's not the one you might think.

Sadly the underlying problem here, that virtually all parents are complicit in, is the nurturing of excessively high expectations. The modern trend to quantify, assess, regulate and scrutinise is highly commendable in many respects, but we have lost our privacy, spontaneity, professionalism, confidence and resilience in the process. It goes without saying that there is no privacy in today's world. But the insidious consequence of looking too hard and knowing too much is a vortex of expectation escalation. "Can do better" is expected, because surely everyone can always improve? But if improvement is always possible, what is preventing the best being achieved? Thus the tinkering of the system persists, because there must be a way to do better, something much surely be "wrong"? But this perfection aspiration is killing our schools and stifling our children. Sometimes, the best is just not enough. 


Friday, 19 June 2015

Pack up your troubles

It's been a while. We have been rather busy..... 

Four kids, three schools and the end of the school year does not a peaceful time make! I barely seem to catch my breath from one day to the next right now, and my eyes are firmly glued to the prize that is two weeks time, when three of my brood will finish for the holidays. Managing the end of term for one is an absolute breeze - except perhaps when you enjoy the holidays a little too much and forget that one child still needs to leave the house by 8am. Easily done!!

I wrote recently about the difficulties faced by families coping with an array of symptoms- often invisible but nonetheless debilitating, but to which no health professional appears willing to attach a name. That was our reality. The day-to-day self-justification, scrutiny and lack of coordinated care.

Until now.

This week, our label - our confirmation, passport and vindication, our acknowledgement, acceptance, understanding and formal diagnosis dropped on my doormat. 

The letter was not long, but I could not take my eyes off four key words. 


Unable to read, let alone process anything beyond this, I sat for some time just staring. Because not only did we now have a diagnosis, but something truly significant had occurred. Members of the medical profession had actually got off the fence, carefully considered all the information available, and made a decision. That in itself is pretty phenomenal, but that decision - in one single action - removes so much frustration, despair and confusion. 



So what does this mean? 

It means, I don't feel I need to explain that my son feels sick most mornings, and suffers frequent headaches. Instead, we can move on to how to help him feel better. I no longer have to justify pre-emptive care to ensure my youngest son and daughter can continue to join in as much as possible in school, not overdoing things one day only to wipe themselves out for a week. Now instead we can now help them pace themselves carefully. It means basic monitoring will hopefully limit future pain, that my children won't need to learn at age 40 that things they took for granted will be taken away from them. And it means that I am vindicated. Because sticking your neck out for something you believe can be extremely difficult, despite support in high places. Our local hospital has vehemently resisted the verdict from GOSH for two years, making me feel helpless, and marginalised.

You see, having a diagnosis can be the most positive step forward. It's like gaining a suitcase, a suitcase large enough to hold everything you have been juggling, managing and coping with, that you can pack it all in to. And the very fact that it fits so neatly seems to make those burdens lighter, the cumulative whole being less than the individual parts combined.

Because, after all, you can go places with a suitcase.



Saturday, 30 May 2015

The difference between teaching and learning

There is a news article doing the rounds reporting how Australia's Prime Minister "doesn't get why kids should learn to code". Further scrutiny however reveals the glaring misunderstanding is not that Tony Abbott fails to appreciate the value of a basic ability to code, but the fundamental misunderstanding common across the world over not what kids should learn, but how.

Not one of my four children have been taught to code. Yet three of them can, and one is extremely adept. For me, coding is on the event horizon of education - or Education (capital E), because we still misunderstand how children learn and persist in seeking to quantify, quality check and present a body of information to be relayed to the next generation as if Gladstonian Liberalism were still the cutting edge of education planning. I believe the Coding question will define how the next generation of children learn, and what is fascinating is that we had the answer all along.

Friday, 15 May 2015

Somewhere over the rainbow...

Once upon a time there was a little girl called Kate. She spent much of her time playing with her dolls, imagining the day when she would have real babies of her own. As that little girl grew up, she spent most of her free time baby-sitting, with babies and children, making plans for the future.

But you know what they say about planning too far in advance!

I always wanted a large family, ideally 4 or 5 children. However I hadn’t bargained on the chronic health and developmental issues my brood share between them - or our shared infertility. We managed to delude ourselves that #3 would be free of gastro issues and were utterly in denial over our second son’s Autism at that point, but when #3 turned out to be #3 AND #4 we realised we had as much as we could cope with. Possibly more at times….. It was a no-brainer deciding that we are done!!



That, however is different from "feeling" you're done. I do really miss the tiny baby thing, wish like hell that I could do the early months again with any of them without reflux and pain, I feel really cheated on that score. The constant screaming was a bit wearing when everyone else seemed to get at least 10 minutes a day cuddling their new babies - and unless you have survived on less than 4 hours sleep for months on end you won’t appreciate how much we were “surviving” rather than living.

Friday, 24 April 2015

No diagnosis? What's the Big Deal?


Today is Undiagnosed Children's Day. And yes, every day is a particular awareness day now it seems, and yes, it's Allergy Awareness Week too and I already blogged about that on my Recipe Blog.... but this one, this day, really REALLY matters.

You would be forgiven for thinking a diagnosis is an expected and usually almost inevitable end point when you or your child is referred for consideration of a collection of symptoms, often present since birth.  Indeed when you are first sent to hospital with your baby you have high expectations of enlightenment from the medical profession, and although no one seeks a "label" to define their child, it's a commonly accepted fact that a diagnosis in the UK is a passport to services, support, understanding and a pathway to appropriate supportive - and preventative care.

So you might be shocked to learn that  it is not given similar status by Consultants and health professionals. Indeed, there is a culture in this country of diagnosis avoidance, a pretence that by hiding from the logical, avoiding the obvious or avoiding searching for the unexpected they are in some way leaving doors open to you or your child.

Friday, 17 April 2015

I'm hoping for an ASD, ADHD, Down's and Spina Bifida Baby......



Because all parents-to-be, when starting trying for a baby, hope their offspring will be as healthy and happy as possible. Because we are human, because we associate good health and happiness with wellbeing and they are surely two of the most important gifts to bestow on anyone. Surely that can't be controversial?

And equally, once that tiny bundle arrives in your arms, you love it unconditionally, and want the very best for your child. It doesn't matter what peaks and troughs there are ahead on the roller coaster of life, you're in it for the long haul and are your child's fiercest advocate. Irrespective of anything. And that shouldn't be controversial either.

Wednesday, 8 April 2015

SATS - a sandwich, not a hot potato.

Yesterday Nicky Morgan announced that the Conservative Party would introduce SATS re-sits for children who perform badly in their Year 6 primary school tests. In the short time since many have already written of their strong anti-SATS feelings, compounded by anger and frustration that children will be seen to fail in this way. Having written myself against Gove's extreme passion for measuring and testing previously, you would be forgiven for thinking that I would be equally against this new suggestion. However, I don't think the situation is as simple as that, and - as ever, we are missing the elephant in the room.

The question is not "Should we have SATS, and are they good for our children?"
but 
"What is it about them that upsets parents, teachers and possibly children?"




Wednesday, 1 April 2015

Light it up Blue



A sobering thought, don't you think?

But what if the word "excluded" didn't mean only once?

I still have a stack of fixed term exclusion notices for H, from when he was younger. Forty six of them to be precise. And ALL of them given before he was six and a half.

A full year and a half after he was diagnosed with Autism.

So what on earth is going on in our schools? Why are children with diagnosed developmental conditions being excluded for what is actually classed as ASD behaviour?

The short answer, is that despite the sterling work of the National Autistic Society, local groups and numerous parents, teachers are woefully underprepared for the children on the Autism Spectrum that they will teach. My PGCE year offered a full HALF DAY on teaching children with SEN, or "Special Educational Needs". Not enough to even go through the physical, emotional, behavioural and medical disabilities I might encounter even by name alone, let alone prepare me for supporting and teaching children with any one of them. And beyond that salient point, there is the unavoidable fact that for many, many children with Autism, mainstream school is just not appropriate. Trying to ram that square peg into the round hole was never, ever going to work.

Friday, 20 March 2015

Quantum Happiness

I know, I know. It's been a while. My head has been a bit all over the place recently, too many other things to think about and too little time to write. Although H would say my head wasn't so much "all over the place",  as suffering from too many atoms exploring the universe as per the Copenhagen Theory of Quantum Mechanics.

Of course it was.

This was the month when Chaos Theory and Quantum Mechanics coincided spectacularly and too many crucial atoms decided to take a vacation from my head. At least - that's my excuse, and I'm sticking to it!

H is currently obsessed with Physics. His school have been amazing, going out of their way to provide opportunities for him to extend his knowledge and enthusiasm for the subject. He's now got a sixth form mentor to discuss his favourite topics with, an inspirational Physics teacher who meets to discuss "String Theory" and those cats that guy called Schrödinger seems rather fond of too. He even attended a Year 12 class on Quantum Theory this week - not bad when you are only Year 8. (Apparently he kept the 16 and 17 year olds on their toes, and they were nice enough to not only accept him in the group but include him in their sharing of a bag of Haribo...) When he's not in lessons he's in the library, reading psychology and philosophy and planning his future education. It's a tough life being 13.



This fantastic progress is due to the gift of one thing from a number of individuals. Time. All those involved in teaching and supporting H have given a little extra of their valuable time, an investment in his current and his future happiness.

Thursday, 5 March 2015

Not another dress-up day...

It's been a busy week year, and I've yet to reach that much-coveted feeling of having settled into my stride, when you realise you've have passed the "crisis management" post New Year phase and settled into an almost mundane, repetitive weekly routine.  You don't know what I'm referring to? 

No, me neither.

Or at least I *think* I know what I am aiming for - in a kind of "I'll recognise it the minute I feel it"kind of way. Because we don't "do" routine here, or mundane, although I must admit some of us are true experts at "repetitive".

Despite being a true Aries in many respects, I actually don't need roller coaster levels of excitement. Boredom is really overrated in my opinion, or at least it is until the one or two days a year when I have more than the odd hour to myself and start wondering what on EARTH I am going to do with it!  (Get a dog/apply for a job/insert suitable knee-jerk response only applicable at that single point in time....) And with children on the Autism Spectrum, anything out of the ordinary is usually a recipe for disaster!

So on hearing that there was yet another "different" day in school my heart sank. World Book Day might sound idyllic but for kids who detest dressing up it's a tough call, as for their parents it's a challenge set to bring the strongest parent to their knees. Such events are based on the assumption amongst teachers that children love dressing up. Not all, I assure you. 




Thursday, 5 February 2015

The Gloves are Off

With the General Election coming up I find our recent experiences with the NHS even more relevant.

In the past year we have lost our long standing psychiatrist, our ADHD nurse, our dietician, our physio and experienced ever worsening care. 

Despite having a child with complex needs on ADHD medication with a Team Around the Child system in process only the physio got replaced - and by someone who neither knows our family or cares two hoots. Obviously she knows better in five minutes than professionals who have worked with my kids for 5+ years though, which is just as well as few kids with a socio-communication disorder can bypass the years (yes, years) needed to build up a relationship to share their feelings and concerns. (And of course it cuts to the chase and saves oodles of time which would be wasted discussing the case with a parent who is obviously clueless having lived in a bubble for years not caring night and day for their kids.)

Roulette Wheel by Hakan Dahlstrom


Friday, 30 January 2015

Seven Stages of Parenting a Child with Additional Needs

They say there are "Seven Ages of Man" and also "Seven Stages of Grief". There are also seven stages of parenting those with additional needs! This week has seen much thought and consideration for change here at Thompson HQ, we've taken stock and realised how far we have come, what we have learned - and just how far there is to go. Life with any child is a series of stages, but when complex needs are thrown into the parenting mix life takes unexpected turns. As with grief, it can really help to focus and accept these different stages, and I believe doctors and health professionals should take note too.



Parents of children with medical or other additional needs do indeed go through a grieving process, but that only becomes clear further down the line. Many are told of the wonderful poem by Emily Perl Kingsley, "Welcome to Holland", and indeed the poem does offer real comfort to many as they journey through the "Holland" that is their reality, rather than Italy where everyone else seems to be.

Parents of Special Needs kids frequently do feel "different", isolated, set apart, lost, sad and confused. It's not an easy problem to fix either - because no one has actually done anything wrong, but the best intentions in the world cannot always bridge the gap between where we find ourselves.... and where we intended to (and assumed we would) be.



Over the years I have run, moderated and supervised support forums for parents and noted how everyone does indeed seem to move through these discrete stages.

Stage One - Ignorance
You don't really understand what is going on so it doesn't really matter what the professionals tell you... Just will someone PLEASE sort your child out so you can go home and forget about the whole unpleasant experience??

Stage Two - Learning
OK. It wasn't quite as simple as that. Neither is it going to magically go away..... better start clueing yourself up because knowledge is power, right? We can DO this!! Many parents join support forums at this point, utterly convinced there are easy answers readily available.

Stage Three - Hope
Understanding is coming - you are the new expert on not only your child, but their problem is also currently your special subject. There is so much more awareness and understanding these days, this is only a short term issue and you will be back at work/running/socialising/SLEEPING any day soon. Right? The professionals are doing all they can and answers will come soon - and a complete fix is definitely possible. You constantly chase for hospital tests and appointments - you will take any cancellation - desperate to move on because there IS a cure or fix to all this. Many parents switch between multiple consultants, believing it's only a matter of time before they find the Holy Grail - a diagnosis and cure. Better times ahead.

Stage Four - Anger 
You know way more than any professional thinks or would acknowledge and get very angry if they hold back even the tiniest piece of information, or worse still know less than you. Because sadly that happens frequently, health professionals have specialist areas which might not cover your child's difficulties.
At this stage you also know your child inside and out and will correct anyone that implies otherwise. Mama Tiger has nothing on you,  watch out anyone who tries to change the wording of YOUR child's Statement when you aren't looking, no "is entitled to" will do! You've been in the system long enough now to know only too well the shortfalls, cracks and difficulties. After this long tunnel vision kicks in (or is that chronic sleep deprivation?!) and the eyes are on the prize. Your child WILL get the support they need.



Stage Five - Depression
Why me?

All your hopes, dreams... you love your child unconditionally but sometimes.... sometimes it's just TOO hard. TOO much. And when a friend has a perfect baby and only visits hospital once in a blue moon.... well that just isn't fair. This is such a hard phase, and can seem interminable. Sometimes only antidepressants can move you on, if Stage Four did not elicit sufficient support this can be a long, hard road. Friends are crucial, but so hard to retain on this journey of a lifetime. Many couples separate at this point, only the strong move on to -

Stage Six - Denial
Because it's actually not so bad. Really. You are trying a med wean and it's going to work. Moving on fro the feeding tube, growing out of the ADHD. Definitely. Things are definitely getting better and anyway, you are DONE focusing on medical issues all. the. time. And those appointments - every six months is QUITE enough thank you. You stop chasing, stop calling, stop asking. You know there are no answers, but it's ok, because you are all ok. Really. It's do-able.


Stage Seven - Acceptance
By this Stage you know more than you ever wanted about our child's condition, services and support (or lack of) that is available, and accept that your are in this for the long haul. You never were bound for Italy. It's not "ok", but it's reality. Your reality.  - Mind you if anyone else tells you that God only sends difficulties to those strong enough to cope with them you *might* just have to say something, Or slap them.

The hope of Stage Three - that utterly exhausting carrot-on-a-stick always just out of reach which ran you ragged is gone. You are tired - but not depressed. Realistic not pessimistic.  The notion that there is a magic wand out there almost laughable.

In actual fact, Stage Seven is really just as much "flying by the seat of your pants" as Stage 1 in many ways, only you have the Wonder Woman suit and a manual this time around....







Zenas Suitcase

Wednesday, 21 January 2015

RTFM - or not! With "Same Difference" Link Up

My brother and his partner have just given birth to a gorgeous baby girl - their first child, and I was reminded how simple life was with one little one. That is if you discount the hours screaming, refluxing, washing etc which was pretty much 24/7 with all four of mine, but it's definitely easier riding the reflux roller coaster the first time around, with only one to juggle!

In the lottery of life I pulled four straws all labelled "reflux", "gut allergies", "hypermobility", "ASD" and "ADHD", (and more, but the straws kind of ran out of room at that point... ) four straws - children - with many talents, gifts, personalities which enrich my life hugely on a daily basis.


Except first thing in the morning.

Mornings, are without a doubt, the most testing time known to parents. The knowledge that you are solely responsible for getting your brood to school with all they need, looking immaculate respectable  and clean is a tough call. Add in the necessary physiotherapy exercises, medications, normal teenage reluctance and exquisite ADHD/ASD-type screaming that only H can do and it's a potential recipe for disaster. But over the years, we have perfected survived and achieved this miracle on an almost daily basis. Which is actually quite impressive.

Friday, 9 January 2015

Nous sommes Charlie. But nous sommes so much more.

My first post of the year was going to be something along the lines of "Most Insane New Year's Resolutions Ever", for which I intended to offer my best contender of 2015.

In a moment of inspired positive thinking insane lack of forethought I decided to give up coffee and wine for January, and thereafter significantly reduce my coffee intake. I'm not sure what induced me to consider such a crazy notion or how I imagined I would function without the former - or recover without at least occasional doses of the latter, but suffice to say I lasted a week!

I also considered recording aspirations and intentions for the year ahead, but frankly life has never adhered to any carefully made plans and flying by the seat of my metaphorical pants whilst ricocheting off the usual (and unusual) obstacles life chooses to throw at me is, apparently, the only way to live. (Small wonder I never managed to ditch the coffee, in the absence of a crystal ball and personal Doppelgänger rocket fuel coffee is a survival prerequisite.)

It's been a hectic start to the New Year, my parents managed to both catch 'flu despite having the annual vaccine, and it hit them hard. Along with our usual health issues, school social issues and my rapidly reducing tolerance levels for such a high level of daily "excitement" it's small wonder I crashed spectacularly today. There is only so much adrenalin the body can take, today mine threw its toys out of the proverbial pram and dictated that I spend several hours sat on the sofa only moving my rm to drink tea, and perhaps my fingers to type in a kind of quasi-recovery. Blogging is without doubt the best sort of therapy there is.

I've read many articles today, several about the depressing events in France. One of the reasons I blog is because I do believe we all have a right to an opinion, and whilst tact and diplomacy is central to responsible debate there is never, ever an excuse for violence in disagreement. The massacre in the offices of the magazine Charlie Hebdo is indefensible, no matter what your religious beliefs are. The pen is, in the long term, far more powerful than the gun. (By pen I include typed words, and the power of social media.) The #JeSuisCharlie hashtag has spread across the whole world via social media platforms and millions unite to condemn the recent horrific events.


It is an important, valuable and human response to tragedy and extremism, but also evidence of something more - that whilst the articles written and cartoons drawn in responsive solidarity to these events demonstrate how the human race still values intelligent communication there is a parallel modern trend to over-simplify and reduce complex issues to a strap line, a buzz word or a slogan.
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