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.

The fashionable refusal to place a child in a box, define them by their health condition is superficially laudable - but the reality is they live in a state of suspended animation with limited services supporting their needs and trivialised symptoms precipitating utterly inadequate and often inappropriate support.

Of course, medicine moves at an alarming pace (at least it does in the areas given a high public profile and attracting government funding - which does NOT include gastrointestinal issues - but that's another story for another time......) and diagnostic procedures and processes change all the time - but don't kid yourself that those with a diagnosis are cast in stone, never more to be reassessed. Diagnoses are inherently flexible, defined only by symptoms and agreed knowledge at the time. What they ARE though, is a currently agreed capsule that encompasses everything that person is dealing with neatly, offering a prognosis, treatment plan and vindication/justification of symptoms in one.

Because it's not easy gaining understanding for a largely invisible condition.

Myself and my children have plenty of "diagnoses", and plenty of names for individual symptoms. And indeed there is a possible overall name for the entire collection of symptoms we all share, but to apply that to us would require a genetics referral for us all together -which apparently is FAR too complicated, bridging the gap between paediatric and adult services and (God forbid) requiring adequate communication between local departments and tertiary level care.

In the UK, doctors are only permitted to investigate genetic issues down a justified, specific pathway. There is no wholesale investigation, sequencing or broad observation - which in many ways is no bad thing. Many people have genetic issues which never affect them. Knowing about these could have far reaching implications on their mental and emotional health, on future health insurance too. But this blinkered approach and reluctance to look below the surface does an enormous injustice to those with chronic health issues who struggle on without a diagnosis. And it is a situation further compounded by competition and disagreement between Trusts and Local v Tertiary care.
But it's an internal political football that should never have been in play.

The burden placed on parents of undiagnosed children is almost unbearable. In fact it's not unknown for them to have the spotlight turned round on them - because surely their children cannot have SO many issues without a diagnosis? And *surely* the NHS would not expect parents to do the research, paperwork and spend the time trying to piece the puzzle together? But they do - because parents care, and the dinosaur that is our NHS is not equipped to function beyond the straitforward, unless it's going to further someone's research or career. Because sadly, that's the only way you hit the diagnosis jackpot today.

So we muddle on. Without our justification, our passport, without a clear plan, appropriate care or inter-departmental understanding. The recent NHS reorganisation I wrote about in February has had a huge impact on us and on my children's care in particular. Every time we gain a new professional we start again, trying to explain 17/13/9 years (or 42 years!) of history without forgetting anything. Most hospital and clinic notes are full of errors, omissions and dangerous mistakes - circumnavigating those is hard enough, let alone having to start again with someone new. At almost every appointment something else is picked up on, pointing to the need for further scrutiny. But it's far too complicated to share that information between departments, let alone hospitals.

A diagnosis would make a phenomenal difference.




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.

So why, when you merge these two broadly acceptable scenarios together, is there SO much controversy created? Why, when there might be a new, earlier ( 8 weeks) and more reliable test for Down's Syndrome, is this viewed as a problem?

I guess one (good) reason is the idea many have that a disability is always a problem. As was (correctly) pointed out to me recently (and as I obviously am acutely aware since I have children with chronic health issues and deal with disability here) having a child with a testable genetic condition does not mean they will suffer. Of course it doesn't, and if you ever think that is the case, you should check out the excellent blog Down's Side Up written by Hayley Goleniowska, an inspirational advocate and campaigner for her daughter and those with Down's Syndrome. And as the Blog "Saving Down's Syndrome" clearly says, times have changed and the prognosis for the majority of kids with Down's has changed.

But for every parent in a position to embrace potential chronic ill health there are those who would struggle hugely, potentially failing to meet that child's needs or their own in the process. And that's just hard luck most of the time. You make a choice to conceive a child and you take what comes, goodness knows having the opportunity to pick a "designer baby" is utterly abhorrent, giving parents a say on gender, personality, eye or hair colour should be prohibited.

But there are two key reasons why I do not think this new test should be controversial.

1) The current situation is unacceptable. Too many healthy babies are aborted whose amniocentesis test incorrectly points to being positive for Down's Syndrome. A friend of mine's mum used to work in a well known local maternity hospital, counselling parents who were in the appalling situation of considering a termination. She knew too well that sometimes babies with no health issues were accidentally labelled as having Down's. Amniocentesis carries a 1% risk of miscarriage (at least) and is not 100% certain. It is also, crucially, far too late in my opinion to be considering a termination. Babies are surviving earlier than ever and the legal gestational age for abortion (24 weeks) really ought to be brought earlier. But parents understandably need time to consider such heart rending decisions.

The new test would happen earlier, give parents-to-be the same choice earlier, and more safely. It might therefore mean that more babies with Down's are aborted, because terminating a pregnancy which has barely begun doesn't have the same level of emotional involvement as ending one half way through.

2) The world is moving on. Science is progressing and increasingly parents-to-be DO have more choices to make. If they want to. What matters is that they really understand that choice, which at present I suspect many don't. (The NHS isn't great at providing that additional supporting information on most things, let's face it, so there is probably a great deal of "catch-up" required.) But no parent-to-be should ever feel guilty about deciding on a termination on health grounds. We live in a free society where individual choice and parental responsibility is expected and respected.

That choice has NOTHING to do with rejecting individuals already born, and absolutely nothing to do with a lack of support for those struggling with disability on any level. You could be a staunch advocate for a child with a genetic health condition and go the extra mile to make sure their future was assured - but still make a decision that you would not actively decide to bring another child into the world with the same diagnosis.

And yet when trying to suggest this I was torn apart recently on social media, as if I was somehow advocating genocide of all children with Down's Syndrome, or suggesting that they didn't have a good quality of life! The reality for children already born is completely irrelevant to my point of view. I accept that offering such a choice to parents is perhaps suggestive of those with Down's Syndrome being undesirable in some way, but that's not at all my point.

I didn't have the screening blood tests with any of my pregnancies - because I would not have made a decision to terminate under any circumstances those tests might have precipitated. As it turned out, I have children with chronic health issues and disability of a different kind, not issues that could have been tested for, and thankfully not situations which are set in stone. But I was offered a screening choice, and turned it down. I'm not sure how impressed I would have been had I known there was such a choice, but I had been denied it.

As an Aunt to a child with profound disability and learning difficulties I have seen the MASSIVE impact this has had on her family over the past thirty+ years. Her parents are retired, yet are full time carers, day and night, for all her bodily needs. They are an utter inspiration and once their child was born would not have had their reality any other way. But had they been given the option before she was born to take the long view and consider whether they were prepared for 50 or so years of full time caring they might have balked at their future, of a life utterly dependent on her full time needs. I know they would have at least appreciated that opportunity to have a choice.

So let's not glorify disability, confuse choice with prejudice, or meeting needs with celebration of difference. Normalising disability is important, removing discrimination essential but accepting that whilst science facilitates those with chronic and profound health issues to live full lives, it also offers future parents a choice. For some parents, being offered a choice is crucial. And as long as that is an informed one I don't have a problem with it at all. And it certainly shouldn't be a cause for controversy.

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?"




Is testing wrong?

Testing isn't wrong per se, it's a natural human response to the environment in its broadest sense. We see, challenge, enquire, test and evaluate. Indeed it's how human beings learn. But formal testing in the classroom is clearly something different. Testing implies a requirement to meet a set standard, which in itself implies a pass mark - and those achieving below that mark are seen to have failed. It's actually this implication of failure at so young an age that concerns professionals, parents and critics. It's precisely this implication of dividing children into successes and failures - and at such a young age - that is so objectionable.

Teachers and Testing

Good teachers - who we should remember are professionals, like consultants, lawyers etc with a wealth of experience and knowledge - measure and test their pupils all the time. Teachers need to test and assess, because how else would they know which level each child has reached, adequately inform future lesson planning, provide additional support for those who need it and, fundamentally, to know they are doing a good job? But unlike consultants, lawyers and other professionals teachers are unfortunate enough to be the never-ending political football, constantly scrutinised, tweaked, justified. When was the last time a surgeon paused during an operation to photograph each stage - not just the unusual - and leave post it notes all over his handiwork with links to NICE guidelines? Do we really respect our classroom professionals so little that once bestowing a qualification upon them we seek to persistently undermine and challenge them on a daily basis?


But formalised, national testing also creates additional work for teachers who need to mark everything to national standards, putting additional strain on schools to ensure their students perform. It's asking them to step back from their own class, their own pupils and from their professional role and take on something which only has value in the school it is administered in - but is somehow "converted" into national data and used as a stick with which to beat them later.

Where governments have gone wrong is making a mountain out of a molehill. Or a national issue out of a uniquely individual one. 

Although it's incredibly useful to have an end of Key Stage bench mark, and as part of a transition document for High Schools SATS scores have real individual value along side other important information, that's about it. The Education Department's obsession with measuring everything helps no one. It's as if they honestly believe quantifying something uniquely precipitates an answer- or even the best way forward. But statistics are an extremely blunt instrument- never more so than in education. For starters to compare anything objectively you need to be comparing the same things. You can measure all you like, but if you then attempt a comparison between, say apples and oranges, or inner city schools and free schools, or comprehensives and private schools, pre schools and nurseries and even one nursery and another you will only ever obtain highly subjective results. SATS were a great idea as informal benchmarks, but results should never have been given relevance beyond the school setting.

Students and Testing

Going through life illiterate and lacking in basic numeracy is a bit of a handicap, let's be honest. And few parents would disagree that educational standards have fallen. Whilst it might not make the most scintillating dinner party conversation there is simply no getting away from the fact that I completed O Level AND GCSE papers at 16 - and the O Level ones were in a different league. AS levels followed by A2 are so much easier than the two year course in many respects, if you cannot marshal and learn effectively two years of advanced level work then you won't stand much chance in Law or Medicine either....

But whilst academic success is valuable, testing can only inform on individual progress.

You see, I had a dyslexic four year old who knew the alphabet, could read and write several words from memory and who would have scored highly in pre school assessments. Yet two years later he was struggling and only internal professional observation would have picked up his difficulties. Then there was my autistic four year old who would have failed every test under the sun but developed his own written language despite not reading until age seven. By age nine he had the reading age of a thirteen year old. Neither fit the mould, and in that, neither are unusual. Children are individuals and none come to school without years of unique life experiences.



Then there is the ridiculous situation where the first half of Year 6 is intensive coaching to ensure maximum SATS scores, followed by months of doing very little.  It doesn't take a genius to see this is not good preparation for High School, and it doesn't really measure progress either. Formal exam-type testing is incredibly stressful - as my seventeen year old will tell you. Forcing youngsters to sit such tests and telling them how much they matter creates an artificially stressful environment which helps no one. There are easier, better ways to assess progress, which are every bit as relevant to those taking the tests, and even when you use testing, it doesn't have to be stressful. If you remove the formality, the national comparison of results and the burden of expectation on schools and pupils you also eradicate much of the stress.

Government v Teachers

It's a two-way thing though, this whipping up of the concept of testing into a tornado-like reality that was neither intended, nor needed. When SATS were introduced, teachers were so fundamentally opposed to Testing with the capital "T" that they omitted to remember that testing is a normal part of their job. The anti-government sentiment is understandable, and following decades of slipping standards and reduced demands on students it was a bit of a shock perhaps, but opposing SATS rather than working to ensure teachers had a voice in making them work was perhaps not very constructive. Yes the government interferes far too much in schools but some schools do need to move on from a "them and us" attitude and stop seeing achievement and qualification as a threat. There are a lot of things wrong with our education system but raising aspirations and expectations is not one of them.

However if I as a parent cannot abide all the centralised measuring and tinkering, goodness knows what life must be like "at the coal face". Those involved in education must be heartily sick of it - education is a long term process, yet results are repeatedly and inappropriately used to make all kinds of political points, usually over a single parliament. To often they are used to compare completely incomparable schools in utterly different environments and a great deal of money - tax payer money - is wasted in the process.

So what's the way forward?

So test children yes, and re-test them. To facilitate learning you need to know your children to meet their needs. But good teachers do this regularly and in ways the children barely notice, since it's essential to internally measure and assess where your pupils are. But instead of leaving the professionals to administer these assessments instead SATS have become a ridiculous politicised hot potato when they should have been desirable, expected, appropriate - just the norm.

Stop making testing into headline news. Testing is necessary, desirable and mundane.  It certainly should be with minimal stress for young children. Testing is about as interesting as peer reviewed medical research. Essential, but really not very exciting, and with even less relevance beyond the environment and timescale they take place in.

Leave testing to the professionals, and down regulate it. It's a sandwich - and a boring cheese one at that. And definitely not a hot potato.


Cheese Sandwich by dvs on Flickr

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.

I have learned a phenomenal amount as a parent of a child on the Autism Spectrum. I am also a qualified primary school teacher. Yet I would not be permitted to translate that experience into the classroom, or into any school.

Why ever not?

Because I have needed to be a full time parent to my sons with ASD and have not clocked up the necessary years' official experience. Which given the fact that I actually wrote every word of my son's Statement myself, is utterly ridiculous! It's a sad fact that even today, with the awareness and knowledge we have gained as a society about Autism, that parents still feel it's a "them and us" battle against the Local Authority to get their child the support they need. But I honestly don't think it needs to be that hard. There is a far more simple route to meeting every child's needs which would really be inclusive for those on the spectrum. We need to recognise that there is no round hole. 

Learning is, quite simply, not a conveyor belt for any child. If that fundamental principle can be embraced as a foundation for primary school learning in particular, then I firmly believe that the majority with additional learning needs would indeed find their way.

As a parent of children with a variety of needs I am no different from any other. OK, so we deal with medical issues, ASD, ADHD, Anxiety and a host of other problems, but giving these a name doesn't make them more relevant than another child's needs. I don't want my children singled out more than necessary, and I don't believe they should take priority in the classroom. Some children will need more support, but their needs are not intrinsically more important. We need to start valuing each and every child and their idiosyncrasies, needs and talents - and those of the families they belong in.

Gone are the days of a teacher planning a single lesson and delivering it to a class irrespective of ability or need. But equally, our teachers are not equipped, prepared or supported to be nurses, counsellors, therapists and to deliver quality lessons they can assess and evaluate. Clearly, there are some children for whom mainstream school isn't a realistic option, but if the powers that be believe the majority should be there, then the majority need to be viewed as a collection of individuals by all involved, not an amorphous group.

I'm utterly exhausted after a day at the coal face here, Chez Thompson. I have an overly anxious 13 yr old who needs to complete a History project, but cannot think beyond the bike he is saving for (as of yesterday) and with exceptional Executive Functioning difficulties this is likely to be my project.... A resentful 9 yr old who is NOT sharing his twin sister, no siree and her friend will just have to fit in whilst he acts up, and a 17 yr old desperately trying to revise. All need a different meal each time with differing dietary needs and three of them need different, multiple medications four times a day..... It's a full time job, and at 10pm my head is spinning.

But the solution is never singular. There are many. SO many. And the solutions, (plural) change by the day. The second I take my eye of any one of the proverbial balls, and assume I'm dealing with a collection of children, at least one falls apart. Small wonder a child with Autism cannot cope in a busy classroom......

But the interesting thing is, that an Autism friendly classroom would benefit everyone. Without exception. Autism is a developmental disorder - and just because your level of development has exceeded your chronological age it doesn't mean support for the previous stage is in any way detrimental.

So let's permit ourselves one small generalisation..... and it's perhaps one of the few times that you can - as a parent or teacher. Make that visual timetable. Plan for down time, ensure a calming down zone, issue traffic light cards for students to ask for help non verbally, permit anyone to use a break system - because it benefits everyone, and no one stands to lose.

You might just find the class stands to gain.

Any class is indeed a collection of individuals, there to learn. There is no clear path for learning, and no clear destination. But a basic set of tools to support those with Autism can be a useful platform for all. I want to see a clear plan for primary school teachers, properly trained to deliver supportive learning environments for ALL children, including those with Autism. That would be a real lightbulb moment. A blue lightbulb.

#LightItUpBlue - April is Autism Awareness Month




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


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