Wednesday, 28 February 2018

Rarely Outspoken

So today is Rare Disease Day.  Which is a reason to dust off this blog.  Alright, scrape the layers of dust off this blog.  With a large shovel (a snow shovel…I’m nothing if not timely).

It’s been a little neglected of late.  With reason.  It’s been a funny sort of year.  Not ha ha funny…ok, actually sometimes unintentionally ha ha funny.  Like living in a weird statutory services sit-com.  A social care manager, a health manager and a rare disease patient walk into a bar grimly lit meeting room……hilarity ensues, I assure you.

And that’s why today has given me a reason to write.  A reason to have a reason.  Because so much of what has happened has been down to one fundamental problem.  We are rare.  My son’s undiagnosed condition is so rare it comprises a number of symptoms no one can put a name to.  Which is generally ok.  We have an amazing medical team of super science bods who we trust.  We get to go to fab hospitals and see the NHS at its absolute best.  However, where things become more challenging is in community services – where we need to tick boxes.  Because when things aren’t ok, a little bit wrong can become a lot wrong pretty fast. When you don’t fit into systems and processes – that’s when rare can be naughty-sweary-word levels of frustrating.

And whilst, when it comes to the challenges of the system, I have never been one to stay quiet  (I know, I know – it’s mightily annoying)…this time has been different.  Because it has just felt pointless.  I’m increasingly aware that our landscape is so obscure, so isolated from the mainstream track – it is impossible to visualise.  I can’t explain why it matters without an orientation, a compass, some hefty hiking boots…and wine (you will be needing that).  If I was to say ‘we’ve just been in hospital’, that makes sense.  That’s the kind of challenge you would expect to hear.  If I was to say ‘I’m feeling unempowered due the intricacies of the community health framework and lack of integration with social care, particularly when forced into personalisation agenda when none of it is actually personal…and if I have to do one more assessment that I can’t answer, I’m going to rip it up and dance in it like pretty, pretty confetti.’  Then I think you would be a little more…huh?!?  (See, I was right on the wine wasn’t I?).

I’m also hyper aware that we live in an increasingly hyper aware world.  Everyone has opinions on everything - and they are quick to voice them.  Having recently made efforts to step out of my own echo chamber and look across viewpoints, it’s all a bit scary biscuits out there (note to self – stay in echo chamber.  It’s warm and cosy.) So it can seem easier to just not have an opinion.  I wouldn’t say I’m a millennial snowflake….purely cos I’m just too old.  But I’m close to it….frosted tips if you like.  My generation don’t really have a name. I looked it up and I might just sneak in as an ‘older millennial’.  But that sounds a bit, meh.  Like ‘mature student’ – we show up late to the party and don’t even bring any booze. ‘Younger Gen X’ sounds a lot more fun, but then I’m not sure I quite fit – I don’t really remember The Word being on, plus I really like avocados.  Ambivalent on unicorns though – so who’s to say.

But, generational confusion aside, Rare Disease day has given me a reason to write.  To try and explain why it matters.  Just for today.  So this is why rare matters to us.

1) We have no pathway.

I know.  BOOORRRRIIINNNG.  I just said pathway.  That’s NHS speak.  But it matters – so, so much.  Imagine if you decided to move abroad.  Let’s go with Iceland.  You are now permanently moving to Iceland you lucky sole – you’ll be partying in Reykjavik in no time.  You’d make plans.  Apply for a job.  Get some (frantically googles)…Icelandic Krona.  Book your flight to (frantically googles again, this time adding ‘and not the frickin supermarket’)…Keflavik International Airport.  You’d be on it.  You’d be ready. 

Unless you weren’t.  What if you knew you needed to move, but bits were missing.  You had the Krona, but no flight.  You had a job interview, but no way to learn the language in time.

That’s what it’s like to have no pathway.  Sometimes nothing makes sense.  At all.  An entire room of people can agree that something is logically needed, yet it can fall under no one’s remit.  Pathways matter because the system is designed to meet them.  If you are rare, you can fall through cracks. For example, in our area, Continuing Healthcare handed much of the co-ordination of services to Community Nursing.  No one thought a child would qualify for Continuing Care and not Community Nursing – until us.

2) We don’t have critical mass

There are a lot of rare disease patients out there.  1 in 17 in fact.  But that spans across many different conditions, all presenting differently.  That makes advocacy and influence a challenge.  Take it down to a specific region and it’s even harder. 

We can be equally obscure, but in totally different ways.  So we are often forging a bespoke path, supported by others, but creating it alone.  And that can be tiring.  Very tiring.

3) We’re rarely in the budget (oh, I could just run and run with these puns!)

Times are tough out there.  Budgets are stretched.  And the more they are stretched, the more cuts have to be made.  The tighter criteria have to become.  The less leniency can be offered.

It must feel equally hard for those having to make the decisions or represent us.  I do see it.  The little nods of support.  The look of resignation.  I know sometimes I’m not the only one in the room who wants to dance in that assessment confetti.

Following a string of health events last year we found ourselves in between health and social care.  Our qualification for health was tenuous, but social care services were not set up to manage the intricacies of health support.  Throw in the fact that no one actually knew what happened to our son.  Was it unusual seizures – possibly.  Was it his airway – possibly.  Was it aponeas – possibly.  Possibly doesn’t work in assessments.  People need definitely. 
When you are rare, you can easily belong to everyone and no one at the same time.  Sometimes a rare case all be a bit 'yours, yours...well you touched it last.'

4) We fall through the cracks

In all of this, we still didn’t qualify for community nursing.  Despite the fact that at his worst, my son could have 50 attacks of paralysis per day, we have never qualified.  We have no ‘active nursing need.’  Watching him have obscure neurological events is not a nursing need.

Fair enough.  Until it becomes a gateway. 

In our area, community nursing is the gateway to services. It is what enables a child to be assessed to travel on school transport with someone medically trained.  If you do not qualify for that, not only do staff receive no training, they are not supposed to intervene, just call 999.  For two years we had battled this.  For two years we had queried where the risk assessment was.  Why being this rare was instantly classing us as ‘no health needs’ when our son would go into a paralysis attack on most car journeys.  

I won’t go into details of how and why that has changed, no matter how etched on by brain it is.  But he proved the point.  He proved it with a string of unexpected events.  But thanks to an astonishing bit of luck - he did this at school transport time, on a Saturday.  It happened at home, with us.  Whilst our poorly managed attempts to intervene at home weren’t done as quickly as they should have been - they were done.  We got him on the floor.  We positioned his airway.  We clumsily remembered the training we had been given years ago for exactly this type of event.  We’re now more ready.  And so are his fabulous new transport team. 

5) We’re just a bit weird

It’s ok.  We're kinda fine with being weird (supremely quirky if you like).  It can just be difficult to explain. Near impossible in fact.

We don’t know where we are going.  And we don’t even know where we’ve come from.  I can’t give concrete answers to anything. 

Whilst we have fabulous support from other rare and undiagnosed families, we have no direct comparisons to make.  No one to sense check the specifics with.  No one to tell us we are being unreasonable, or that we aren’t pushing hard enough.

No one to tell us to shout louder, or pipe down.

So for now we’ll just give a casual wave and say Happy Rare Disease Day.

Friday, 28 April 2017

To the other mother...

…or father.  Despite the worrying trend towards casual sexism in politics and the media, I’m not joining in, honest.  It’s just that ‘parent’ doesn’t rhyme with ‘other’.  Non gender bias just isn’t as catchy.

Title vanity aside, this is a bit of an unexpected post.  Today is Undiagnosed Children’s Day - and this year, I have been fundamentally unprepared and well, a bit rubbish.  Why?  Well, the little man decided to go all 2013 retro and remind us what unstable looks like.  Basically, he pulled some pretty scary sh*t.  But following a big meds change, some side effects and a shed load of resilience from a determined five year old, all is fine. However, we are still catching up on the gazillion things we should have been getting done over the last few weeks.

So why the last minute post? Probably a rush of caffeine, a hint of reflection and a touch of FOMO.  See, this year, SWAN UK (Syndrome without a name) are aiming to reach the thousands of families out there living with the unknown, who don’t know that support is there.  Because there are lots.  Lots and lots in fact.

Other mothers. (yes, yes…I know).
Having done multiple hospital stays recently, I know, undiagnosed or not, how many families find themselves facing those unexpected stays.  I see them. I know they see me (not in a deeply profound sense…I mean they literally SEE me. I am right in their face to an irritating extent.  Complete with my non sleeping child and fundamental inability to put up a hospital folding bed quietly). But rarely do we speak.  Not properly.

That’s the rules of hospital.  We sit in our rows, perhaps exchanging a smile here or there, but full conversation is pretty rare…perhaps, inappropriate? I imagine it’s a bit like prison…hard to have a conversation without drifting into ‘so then, what you in for?

I, of course, assume no one knows why we are there. Knowing, of course, that the laws of physics say this is untrue.  Because, contrary to what doctors may believe – a flimsy blue curtain does not have awesome sound blocking properties.  Whilst I appreciate the sentiment of pulling the curtain before a tricky conversation, unless you are conducting it via interpretive dance or charades (FYI – way more interesting approach, which I am totally on board with), it’s not achieving much. 

And I don’t mind in the slightest.  But when the doctors leave, I don’t have lengthy conversations with others.  Over the years, I’ve briefly met or interacted with several parents of babies or children with long term conditions.  Often I wonder and feel I should be doing more.  Saying more. Because I remember.  I remember the stomach churning uncertainty of early hospital stays - trying not to run hypotheticals.  Waiting to see a doctor, any doctor who could help.

I want to reach out more…to be a little less British and a bit more brash.  Or perhaps both via a cup of tea?

I want to say ‘we’ve been there and everything turned out ok.’  To say what I was so desperate to hear from someone, anyone back then. To offer reassurance that it can be ok.  It is possible, and there is support out there.

Then I realise – what makes me think we are reassuring? What fundamental arrogance makes me think my version of ‘ok’ is in line with anyone elses? Perhaps I should be hushing my voice even more behind that curtain, in case those snippets cause alarm or concern….

‘Still undiagnosed….five years..’


‘daily neurological activity..’

‘profound and multiple learning difficulties…’

‘stopped breathing..’


Because I can’t find a way to weave in the other part of the reality. 

making amazing progress..’

‘so funny and affectionate..’


‘part of a community..’


That part of undiagnosed life is probably pretty invisible on hospital wards or in moments of crisis. That’s what I’d like to tell people. When I think back to myself in the early days.  Clutching a baby on a busy ward, imagining a different reality, what did I want to hear? What did that other mother need to hear?

I don’t know any more, my reality has changed so much that the edges have blurred.  I can't re-enter that completely different comprehension, or expectation. 
What I do know is that around 6000 children are born every year with a condition that will be undiagnosed.  I do know the difference that the right support can make.

So if you are out there. I hope today, the sea of pink Facebook profile pictures and blog posts reaches you.  I hope it makes a difference. And I promise not to be weird and brash on hospital wards (but I might bring tea). 


Sunday, 5 February 2017

But how do you know? Understanding my non verbal child's symptoms

How do you know? 

It’s a question I’ve been asked more than once.  It’s an answer I’ve tripped over, struggled to articulate.  One I’ve clumsily tried to explain, usually ending with a shrug and a resigned ‘I just do.’

It’s a valid question, usually from doctors.  It has an impossible answer.  How do I know when my non verbal, disabled child is in pain? How do I know he isn’t sad, or angry, or just….well, being five?

But I know.  I really know.  And I have a responsibility to get it right.

It’s a responsibility that haunts me, scares me.  Keeps me awake at night.  Because I know that the older he gets, the more important getting the answer right will be. That my child is no longer a baby.  That the day of angel faced cuteness are slipping away, giving way to a surprisingly robust, but endearingly fabulous little boy.   When he arches, kick and screams, the implications of wrongly classing pain as ‘behavioural’ will become more significant.  Getting it wrong is just too heartbreaking to even consider.  I need to be ready to explain.

And I have reason to worry about pain making an unwelcome appearance. Intermitted episodes of pain have been a recurring theme. They have peppered our little boy’s generally happy and cheerful existence with moments of darkness. As a baby, we knew.  He cried non-stop.  His little body would tense, his face would turn red.  The cry was different, panicked. But we were first time parents, caught in the non-specific catch all world of ‘colic’.  We hoped it would change over time.  Hoped it was something simple that would ease the older he got.

It didn’t.  It became significantly worse, at six months old turning to full body, painful dystonic spasms.  His arms would twist, contort and lock.  His body would shake.  We would watch, helpless.  Google, fearful.  With the help of an amazing neurologist, we finally gained control. But at night, the pain still lingered.

In the early hours of the morning, without fail, he would cry.  Really, really cry. For hours and hours. His stomach would tense, the panicked, gasping wail would return.  Then came the behaviours.  He could only calm when clawing at my hair.  Then his own. He would kick, grab. We stood firm that pain was the problem.  We ignored suggestions that his sleep would be improved by letting him ‘cry it out’. 

But I admit, I started to wonder.  We could be wrong.  His development had halted, with emerging sensory processing issues. What if these were actually ‘behaviours?’  What if I didn’t understand my own child? Then at 2 and a half, everything changed.  A doctor intervened with a ‘worth a try’ medication to control gastric spasms. The crying stopped. The behaviours stopped.

I can’t overstate the impact of that change. On every single aspect of our lives.  We owe a huge debt of gratitude to the doctors involved.  For listening, supporting and not giving up.

But now, when I meet someone new.  How do I explain?  How can I be clear that whilst, yes, we have control, there are occasional moments when those days start to creep back.  That, yes it may just be an ‘episode’ of pain every few days, but that we need to recognise it for what it is and pre-empt it. Because we can’t go back there.  We just can’t. We won’t.

I am also coming at this from a fairly simple position. I don’t have that much to unpick.  My son doesn’t have significant behavioural issues.  He just isn’t there yet.  He hasn’t hit that developmental stage.  He doesn’t know how to throw a tantrum over the wrong shape of pasta, or because the rain isn’t wet enough.  Bar a minor grumble and unintentionally cute ‘sad face’, he doesn’t object to stopping an activity or letting go of a toy. In fact, having recently learned to pass objects, he is an obsessive sharer.  He’ll give you everything he has and throw you a smile and clap at the process. 

I know there will be families out there coming from a more complex standpoint.  Having to explain the difference between behavioural distress and painful symptoms.  I am also not na├»ve to reality. This may well be us in the future.  My son has a undiagnosed genetic condition and an unknown prognosis, but thanks to the right medications and interventions, he is making forward progress.  Objection is part of learning.  Part of developing a sense of self. He will find his own ways to communicate his displeasure.  One day the rain simply won’t be wet enough – and I’ll need to recognise it for what it is.

But to those asking the question, be it doctors, other professionals. I would ask just one thing – use me as to your advantage.  Feel free to ask the questions.  Because parents of  complex,non-verbal children are your greatest ally. We are translators. We have more experience in this role than in anything else we have ever done.  We have completed lengthy emersion training, with some particularly challenging advanced night time modules.

I used to bristle when I was asked ‘How do you know?’, or when it was implied.  Because of course I think ‘I know’.  But I have now come to realise there is something much worse – not being asked. Not having that conversation, or working together to understand the child at the heart of it.

The single greatest thing any doctor or professional can do for us is to ask the right questions and listen to the answers. To treat us as partners in this journey.  To ask for our interpretations and translations; because learning to communicate with this funny, endearing, loving little boy is both my greatest challenge and most enriching achievement.  We don’t have words, or signs. We have nuances, expressions and subtleties that are crystal clear to those in the know.  I’m still working, but like most parents of disabled children, I’m learning more every day.  

Sunday, 16 October 2016

Thoughts from an incapable warrior

'You’ll become someone you never thought possible.’ 

I remember reading this in the early days.  As the realisation I really was a ‘special needs parent’ sunk in. I think it was meant as a schmaltzy hallmark sentiment about growth and self-fulfilment.  I probably shrugged it off in the ‘yeah, ok then’ pile along with a zillion leaflets and a poem about bigging it up in Amsterdam or something.  

Only I’m finding myself thinking about it recently.  In a very different way. I’m getting all irritating and introspective.  Wondering not who I am, but who I want to be.  Imagine if Oprah watched Amelie and the Shawshank Redemption back to back during a Netflix BOGOF.  Yeah...I’m that annoying right now.  And it has nothing to do with the big questions.  Not raising a child with an uncertain future. Not the actual parenting part.  No, it’s the fight that comes with it.  The need to do it.  Deciding how I want to go about it and how I want to be perceived.  I’m no warrior.  And I’m no push over.  And I’m finally having to think about it.  Mostly thanks to DIY.

You see, I’m running out of walls. And that’s a problem. 

I’ve painted all of them.  One three times actually.  Our garage looks like a very poorly located branch of B&Q, filled with bizarrely named tester pots.  Every imaginable shade of erm, white (look, I never said I was a good or ambitious decorator.)  But I’ve tried them all, spent my evenings and weekends painting, sanding, glossing.

Why? Why, almost a year after moving into our house was there this sudden determination? Well, I suspect it comes down to adaptations.  After much debate, we refused a Disabled Facilities Grant and the (fairly hideous) proposition put forward by the local authority to adapt our home.  Because it’s our home. So we’ll be doing this our way.  No clipboards allowed.  Whilst we toasted our decision (and ignored the nagging back pain as we continue to lift J), I suddenly found myself picking up a paintbrush.  A bit territorial I guess. We marked our outpost. It’s probably a good job we don’t have a cat.

And with the process of painting, has come the satisfaction. The achievement. That’s what makes the dwindling number of walls a little sad.  Because in the background to this has been a lot of what I lovingly call ‘J admin’. The to do list that's so long I don’t really know where to start.  To be honest, there have been some things I’ve just chosen to ignore.  That makes it hard to justify sitting in front of the tv. But you can’t hold a paintbrush and fire off e-mails, or highlight relevant sections of disability legislation.  And everyone needs newly painted walls, so that’s a justifiable alternate task.

One of our current challenges is the dreaded ‘EHCP transition’ (aka the Great British policy experiment – think hurried politicians in a tent creating new overly ambitious policies with sprinkles on.  No Mel and Sue sadly.)  EHCPs, or Education, Health and Social Care Plans are the replacement for the previous Statement of Educational Needs.  They bring together education, health care and social care in one document with provision identified.  They (ideally) include families more and we all get to say fun things like ‘person centred planning’ and ‘co-production.’  I know, right.  That’s more fabulous than a peacock cake.

Only here’s the problem.  This (mightily expensive) change needs to be implemented on the ground.  That’s happening in a (post?) austerity environment where budgets are stretched, with significant regional variations.  It’s kinda like a certain well know coffee chain.  Somewhere, some very clever people in a board room thought ‘oh yeah, let’s put people’s names on their cups.  It’ll be so personal, we’ll be totally living the brand.’  And sometimes, it works.  But each branch is different.  Some are busier than others, sometimes people with unusual names pop up and some staff know the system better than others.  So every now and then, there’s a bit of confusion as Dave gets Kevin’s Latte and no one can figure out who ordered a skinny decaf soy cappuccino with extra froth.   

You see much of the policy does make sense.  We should have integration across service areas.  We should have person centred planning.  But when there is no money, confusion about how to implement and sometimes a belief that following policy is optional…well.  It puts parents in a strange position.  It can feel as if there are two extremes.  Two stereotypes.  We are either incapable and must be told how to proceed, how things will be.  Or we ask questions, highlight non-compliance with the law and drift into that horrible stereotype of the ‘warrior mother’.

So I find myself desperately striving for a position in the middle.  To find a way to be a partner, not an advocate or opposer. Yet, there is no stereotype for that. 

We have a strange juxtaposition with phrases like ‘self management’ gaining ever more traction in statutory services.  Yet, we are held at arm’s length from faceless panels and actual decision makers.  As parent to a complex child, I sometimes lead.  I sometimes don’t.  I often don’t know which I am meant to be doing.  I flit between two extremes, looking for the middle ground.  Often emerging as just an incapable warrior. So I need to decide who I am, who I want to be.

Before our beautiful boy came into our lives, I thought I knew who I was.  I wanted fulfilment, excitement and spontaneity.  I wanted to travel the world.  For someone to buy my favourite flowers in the middle of the week, just because.  I wanted to be liked. 

Not so much now.  I have to face a different, but actually more fulfilling reality. I have another job to do.  A role to play.  And I can’t always be liked (although, perhaps a little bit, because I still really don’t like that part).

So that is my way forward.  To keep on finding out who I want to be.  I can’t change culture.  I can’t transform the way the system works.  But I can decide what I want to be and what I don’t.  I can choose to be bold.  To be ambitious.  I can decide not be frustrated.  Banish bitter.

Because so much has already changed.  And not in a schmaltzy ‘growth and love’ way (I’ll do you a whole other post on that one – cos it’s true).  But the challenges of getting what my boy needs has changed me.  Negotiation is my default. And that’s not a bad thing. 

I’m more confident.  Perhaps more able.  More realistic.  More determined. Because the rules changed. My landscape evolved.  And now I no longer crave white lilies on a Wednesday.   

Sunday, 31 July 2016

Stepping through the waves

Come here RIGHT now.’ 

I have epic respect for parents juggling multiple children.  Particularly on holiday.  If it was me, I’d probably opt for a subtle walk down the beach for some flip flop flinging to be honest.  It’s a constant parental balance – the weighing up of discipline and the desire to just let it go.  This time it was the result of some impressive ball skills from a boy on the beach.  Unfortunately (or fortunately depending on his intent) the inflatable ball connected perfectly with his unexpecting little brother.

But it was the boy’s response to his mother’s reprimand which caught my attention.  Partly because it drew a subconscious nod of respectful agreement from the lad next to us.  ‘But mum…didn’t you see it? It was a crack shot!’  

Hard not to laugh at his very valid point, which completely missed the point.

There was a time I wouldn’t have laughed.  I would have wondered.  I would have wondered every time I saw children play together. Saw them fight.  Kick footballs.  I would have had the same though.  ‘Where will he be?’

Actually a more specific thought.  ‘Where will he be when he’s five?’  I don’t know why five.  There is something round about it.  Five year olds are little people, not transitioning toddlers. They have primary school sweatshirts and ask surprisingly challenging questions.  They do actual lessons and talk obsessively about everything from cars to superheroes.  They eat ice cream and are easily influenced by the call of fast food chains with zip busting advertising budgets.  They suddenly decide they want a pony and that the tiny patch of garden next to the garage is a perfectly reasonable place for one to live.  That’s just what five year olds do. 

Most of the time.

Unless you have a five year old with a range of disabilities.  Then five looks very different.  It is the age when the gap grows.  When the pushchair becomes a wheelchair. When education includes the word ‘special’.  When it’s time to let go of ‘catching up’.

This week, my boy turns five.  Five. 

We are there.  Much of the wondering is now a reality.  He can’t yet talk.  He still hasn’t taken his first independent steps.  He has daily seizure like episodes that aren’t going away. The gap isn’t going to close.  His medical condition won’t be ‘cured’.  It won’t be discovered that this is something treatable.  It is a genetic condition, be it still one with no diagnosis.  It is, quite literally, part of who he is.  In his DNA. It’s not sad, it’s not a tragedy – it’s a five year old little boy, doing things his way.

So we have celebrated by letting him do just that – by doing the things that he loves, his way and by finally coming good on a long standing promise.  Almost exactly three years ago, we took our almost two year old on a holiday to Devon.  Classic British holiday stuff – sand everywhere, ice cream everywhere else and more than a healthy sprinkling of rain.  He loved it.  Absolutely adored it.  But most of all he loved standing in the waves on the one sunny day we had.  He was able to confidently bear weight through his legs when we held his hands.  He was close to taking steps in hand and we easily waded him into the water as he laughed hysterically at each rising wave and the pull of the sand under his feet.  But the water was cold, the clouds headed in and all too familiar spots of rain started to fall.  ‘Next time,’ we promised, lifting him out of the water. ‘We’ll do it again.’  We didn't.
By that Christmas, our happy little boy was very unwell with unstoppable neurological episodes that the doctors struggled to pin down to a name.  We watched as ability after ability slipped away.  His familiar sing song babble was gone.  Then he was struggling to sit, or play with his toys like he used to.  When we lifted him onto his legs, they buckled under him immediately.  Even his trademark gasping laughter became a rarity. Whilst some doctors remained optimistic that we would find a way to treat this, others were more direct. 

Thankfully, with a lot of medication, a bucket load of help and some very steely determination from a very small person, he regained those skills.  But slowly.  Gradually gaining strength. Firstly standing gingerly when held round the waist.  Then gently edging a foot forward, in regulation issue supportive boots.  Then gaining confidence, clearing the trip hazard masquerading as a rug with a full step, whilst holding our hands.  And for the last three years there has been a photograph of a little boy laughing in the waves sat on our bookshelf.  A photo that should have just been another holiday snap, but became so much more.  The one I would nod to on home visits from physiotherapists when talking about what ‘he used to be able to do’.  The one that offered both hope and fear in equal measure.

But finally, we got to keep our promise. A promise that at one point seemed near impossible.  We spent a week on a slightly windy, but wonderfully sandy British beach.  The water was bloody cold, the waves were slightly higher than my maternal self was entirely comfortable with and the rain still fell.  But this time, we stayed.  And he stood, holding our hands, edging us further in.  And he laughed.  A lot.

And so, as he turns five, I realise just how futile speculating and wondering about where he will be really is.  Because the future is totally and utterly unpredictable.  It is unpredictable in ways I couldn’t even have fathomed a few years ago.  Because when I did all that worrying and wondering, there was so much I didn’t know.  I wish I had known that non-verbal does not mean unable to communicate.  That my boy would still have obsessions and questions, just brought to my attention differently – with a quizzical look, a well-rehearsed pouty face or a huge happy grin.  That unable to eat independently does not mean unable to participate.  That he would spin round at a mere sniff of ice cream.  That unable to walk does not mean unable to play, or take part.  That given half a chance my son would have a pony taking up residence on the driveway.  

With no diagnosis, the future is completely uncharted.  So instead, all we can really do is celebrate the here and now.  So as he turns five, celebrate we will. And perhaps update a much loved, slightly dusty old photo on the bookcase.

Thursday, 28 April 2016

Undiagnosed Children's Day 2016: A call for coordinated care

Tomorrow is the fourth annual Undiagnosed Children's Day, led by SWAN UK (Syndromes Without a Name).  Our day to tell the world about our cause. Our lives.  Our fabulous children. 

But it is also our chance to showcase the cracks.  To really demonstrate the real challenges of living without a diagnosis.  It is our opportunity to advocate for change and explain the reality of being uncatogarised in a health and social care system driven by 'pathways.' 

It's kinda like crossing an ocean without a compass.  We'll get there eventually, but we may hit a different destination, clipping the rocks every now and then.  It's not that everyone on board each of our little boats isn't behind us, it just hard to know where to steer and it can all just get very circular, pretty fast.

One of the key themes emerging from the day this year is around care coordination. Navigation if you like.  It's a topic I could bore you on for hours (seriously, that analogy could've gone on to painful levels - dive bombing seagulls, unexpected pirates - it could've run and run). 

But this year I'm going to keep it really simple. Because it's hard to frame the need for a solution when the challenge is so difficult to explain.  I could never have really understood the complexities of the landscape that families manage without having lived it.  So I have tried to lay it out in one snap shot. The only way I can think of - with a big sheet of paper and a marker pen. 

There have been many fabulous visual maps explaining the complexities of living with a disabled child (I'm am neither cleaver nor original here).  For example, the brilliant professionals map doing the rounds on Twitter and the fabulous (and artistic) mind map from Orange This WayBut this is ours.  This shows the professionals who are involved in, or influence the life of one little undiagnosed four year old.  This is our little world.  Our map with no map. 

And so much of this picture is also our fabulous team.  One of the difficulties for families in talking about care coordination is a fear of being interpreted as criticising professionals.  In fact, professionals often step in and plug gaps voluntarily, in the absence of clear coordinated services.  The challenge is not with specific statutory bodies.  It's the need for national, top down coordinated and interacted service provision - even when there is no 'label.'

A lack of integration is undoubtedly a challenge for disabled children across the board.  But with no diagnosis or prognosis, the boxes become un-tickable and ambiguity blurs the picture even further.

And the impact this ambiguity? I think it was summed up in one of our needs assessments.  Our previous local authority needed to put a name in the box marked 'lead professional' at the top of the form.   The person responsible for navigating all of this. So they put the only name they could think of in these ever confusing, undiagnosed circumstances.

That name was mine.


Thursday, 21 April 2016

Wonderfully Weird

It’s almost that time again.  Just one week to go until the fourth Undiganosed Children’s Day (29th April).  It’s our time to look forward, look back and realise how far we have come.

And realisations are quite apt for me right now.  You see, I had a moment the other week.  A penny dropping ‘oh’ moment.  It’s probably a pretty obvious one to most people, but it came as an unexpected surprise to me.  You see…we are weird.  Like, proper weird.  Not just a little bit odd. I’m talking full on dancing down the street backwards, singing Aretha in a velvet catsuit levels of weird (figuratively speaking you understand….for the most part).

What got me to this moment was a string of phone calls.  We’ve been experiencing the joyous transition from a Statement of Educational Need to an Education, Health and Care plan recently. I was after some advice to try and unravel exactly how this was supposed to applied in our circumstances.  And so began the calls. ‘Erm, so my son has no prognosis or diagnosis.’…’he’s paralysed on and off throughout the day’….’yeah, you won’t have heard of that before, because there’s no name for the symptom’…’he’s on research studies’…..’he’s got multiple unexplained neurological episode types.’….’no you can’t call them seizures.’…’erm, you’ll just have to write unknown episodes.’  <Cue perplexed scribbling of pen.>

Yup.  We are most definitely of the weird variety.   And I’d never really picked up on it before.  There’s been hints of course.  I mean you would’ve thought the reams of genetic testing for rare conditions would’ve given it away, but I kinda just ran with it.  Then came the understanding that not every disabled child will cover the trio of needs.  Educational need - tick. Health care need – tick.  Social care need - tick.  No prizes for a full house sadly, just a boat load of paper work. (Cadbury need to sponsor some of these forms.  Seriously, this is a great brand opportunity.  If a DLA form came with a free Dairy Milk, I would love you a lot).  The system often struggles to co-ordinate across all three as it is -  throw in the inexplicable and it all just gets brain numbingly confusing.

And recognising the weirdness actually makes it all a bit less frustrating.  It helps to explain why so often we fall through the cracks in the system.  Why everything is so unco-ordinated.  Why so often it feels like we are wading against an unrelenting tide of beurocracy, unable to chart a route through the constant ambiguity.  It explains why people so often don’t know what to do with us.  Why I so often get the metaphorical shoulder shrug.  Its fair enough - they probably think we know we’re weird.  Realising it makes it make sense.  In fact it’s almost liberating.

But then it’s also a bit scary.  A bit isolating.  A bit lonely. 

Only we aren’t alone.  And that’s why I’ve never recognised how strange this path is.  Why my perceptions and expectations of the world we inhabit have been slightly off base.  A word often used for my boy is ‘complex.’  It’s a word I slightly flinch at.  I want to jump in with a ‘oh no, really he’s not.’  Not because I’m in a strange world of denial, but because he’s just not.  In comparison to many of the families we know, our life is simple.  Chilling by the ocean with a martini kinda casual (ok, that has literally never happened, but you get the point.)

You see, I have a slightly skewed context.  I have spent the last four years surrounded by the undiagnosed community.  A community that is immensely varied and totally unquantifiable.  Families regularly tested by heartbreaking, often inexplicable challenges. We don’t fit in boxes.  We don’t make sense.  We are all different.  Outside the norm.  Impossible to categorise. 

This has become my normality and my entire understanding of life with a disabled child.  And thank god it has.  Because when I look back and imagine finding our place, reaching our unsteady acceptance without it.  Well that’s just terrifying.  If we had known how strange this road was when we started on it, I don’t know if we could have kept the optimism.  When the constant tests came back inconclusive, when things got worse, when the ‘we don’t know where this is headed and we don’t know why’ conversations were had.  If we hadn’t been surrounded by those who had been there, lived through it and bounced back a hundred times over.  If we had felt we were following an uncharted path alone. 

Except the thing about rare experiences is that they can all be linked under one banner.  They may all be different, but with the same overriding theme. And our banner is a simple one -  ‘undiagnosed.’

And that banner is getting stronger, more recognised.  On the fourth Undiagnosed Children’s Day, SWAN UK (Syndromes Without a Name) is bigger than ever before.  Local volunteer representatives are in place in communities across the UK, offering on the ground co-ordination.   The voice of undiagnosed families is not only being heard locally, but at national level, with families speaking at Westminster to the All Parliamentary Group on Rare, Genetic and Undiagnosed Conditions.

So thank you to the undiagnosed community.  For making us less different.  For finding strength in numbers.  For treading your own paths in parallel to us, whilst keeping us moving forwards.  And most of all for being so fabulously, wonderfully weird.