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.

Sunday, 3 January 2016

A million miles from perfect - My five babyhood failings

I'm totally chilled about this.  I can just
unpick the colours right?  Right?

‘It just wasn’t meant to be this way.’ 
It’s a phrase I’ve both heard and uttered.  When my boy was born with complex medical and developmental needs, I would think it, say it and worry about it.  I would worry because I wasn’t able to do the things I was MEANT to do. The things that were supposed to make me a good mother.  I remember speaking to a heartbroken woman on the hospital ward during yet another hospital admission.  Her tiny baby was being fed by tube.  She was devastated because she couldn’t feed him herself.  As if by not doing it, she was somehow failing.
Only she wasn’t.  Not at all.  It’s just that no one really talks about our world.  In a media environment where parenting tales are dominated by stories of mothers enrolling their babies into the ‘right’ nursery before they are even born, endless books about the ‘right’ way to get your child to eat or sleep; and judgmental nut jobs  experts implying that babies born by C Section don’t bond with their parents – what hope for those of us who had no choice?  Our reality doesn’t really feature.  Mother and Baby magazine doesn’t tend to lead with a ‘top outfits to compliment an NG tube’ story.  
When new parents are under unfeasible levels of pressure to attain the unattainable – what happens when it’s not even an option?  Well, actually, sometimes its surprisingly ok.  And it gives some interesting perspective on those perfect expectations.  It took me a while, but finally I was able to see that trying was far more important than achieving. 
I’m not saying that parenting perfection is a bad thing.  Just that the extent of the pressure is occasionally overwhelming. And when the world turns upside down and reality smacks you in the face, it doesn’t really matter if the dummy you planned to never use is a long term fixture, or if they only sleep when held – all that matters is your baby.   Now I’m merrily saying all of this as a massive hypocrite. I was actually pretty easily influenced by that ‘Perfect Baby World’. The one that pops up in magazines, on websites and in baby groups.  Only I failed pretty epically.  You see <deep breath>………I’m a hypobirther who had a C-section……A salt and sugar avoider who cheered at the consumption of Wotsits (dissolving food of choice for a child who can’t chew)….. A routine follower who sacked off all the sleep training rules.  And you know what…its ok.  There were times I would beat myself up about it.  But really.  It’s ok.
Because sometimes the rules don’t apply.  And because no one talks about Complex Child Land, only Perfect Baby World, it can be hard to envision the space in between.  It can be hard for newcomers to this crazy reality to know that it’s ok.  That trying is enough.  That sometimes there is nothing you can do, and that’s ok.  No wonder that mother I met was so heartbroken. 
So here they are.  My five babyhood preconceptions and our reality:

1.       Breast feeding:
Perfect Baby World:
In Perfect Baby World, the message is really quite simple. It doesn’t matter if you are doubled in pain and your child isn’t interested, or has a latch like a small irate hoover. If you fail in this basic skill, you have set your child up on the road to life-long failure.  As you mix that powdery formula and lovingly tilt that carefully sterilised bottle into your baby’s mouth.…..your child judges you.  As they enter into a perpetual cycle of self destruction……they judge you.  As they fail in school and hit the Bacardi Breezers hard (cos they are well used to a bottle FYI)….they will know it was all your fault.  As they stand in court awaiting sentencing…..they will know.  As the judge brings down the hammer and the court takes in a collective breath, they will turn, point the finger of truth and say ‘It. Was. You.’
Complex Child Land:
Complex Child Land is well, a little different.  Don’t get me wrong, we all know the benefits of breast feeding and it is still something to strive for.  However, it may not be an option.  Many complex children find themselves on specially developed and broken down formulas.  In some cases, these are delivered via a tube.  The quality of these formulas can be determined by how sharp an intake of breath the GP takes when they get the prescription letter (If you find them sobbing in the corner, rocking back and forwards whispering ‘my budgets, my budgets’ – you’ve got the good stuff).  These range from the ‘pretty good’ option, which smells like fake tan and hops; to the ‘really good stuff’, which smells like potatoes and wee.  Whilst this may not sound appealing, when you have a child in the ‘failure to thrive’ category, constantly being sick, or screaming in gastro pain – it really doesn’t matter if your house smells like the cast of the Only Way is Essex have done a day trip to a brewery and then rolled themselves repeatedly across the walls.
Our reality:
Amazingly, I was able to feed J for around seven months.  But it was incredibly difficult and motivated by a fear of formula escalating his problems.  He would arch and scream.  Establishing feeding was a hellish cycle of sleep deprivation and failed attempts. Then finally, we began trials of specialist formulas, ending up on the most broken down version.  For three years, we continued to coax two bottles worth into him by making well rehearsed yummy noises ‘mmm….doesn’t it smell great?’….’yeah, not at all like Mr Potato Head visiting a poorly maintained public bathroom’….. ’mmmmmmm’ 
One thing that makes our complex child pretty unusual in the complex world is the absence of tubes.  We've been incredibly lucky.  So much so, I was able to get over the emerging potatoey smell from my living room rug (never, ever drop that stuff….it clings like melted prit stick).

2.       Weaning
Perfect Baby World:
In Perfect Baby World, the introduction of food to your baby is a very serious matter indeed.  Get it wrong, and you could end up with a fussy eater who’ll only eat baby food when they are a baby.  And you do realise it’ll just get worse from there.  They may never eat olives.  EVER.  Just imagine being around your friend’s children at age five as they throw back the hummous and kale leaf salad.  And yours will only eat strawberry Petit Filous and Edam cut into the shape of Iggle Piggle.  Best to intervene early.  Important choices to make between spoon weaning or baby led weaning.  Or hedge your bets with the mixed method weaning (though a controversial choice of course).
Complex Child Land:
The reality of feeding is a little different over here.  Some children are simply never able to feed orally.  And the introduction of food for those who are is often a tense affair with worries about their ability to swallow safely.  For those who are able to spoon feed, it’s a slow process. The puree stage can be less of a stage and more of an enduring reality.   Simply getting enough food into child can be all consuming and self-feeding can seem a million miles away.  Watching online antagonism about weaning methods in baby forums can be an alienating business (when you find yourself muttering ‘weeeiiinnnerrs’ under your breath it’s probably time to log off – not me, obvs.  I’m way to mature for that.)
Our reality:
We were lucky enough to be able to begin weaning on time.  But not in the conventional sense.  Due to the level of gastro pain, everything had to be planned, tracked and monitored, never introducing a new food too soon and recording reactions.  Even now, we are struggling to identify triggers.  At 4 1/2 years old, food all has to be the right consistency.  Self feeding is limited and all meals involve slowly spoon feeding.  It can be tiring.  It can be repetitive.  But it’s also amazing.  He is able to eat and we know how blessed we are to be in that position.

3.       Walking
Perfect Baby World:
This is a mighty simple one.  Your child should, and must be walking at, or shortly after the age of 1.  If they are not walking by then, you have clearly done something wrong (more than likely the formula feeding and lack of olives).   You should probably put them in a baby jumper or something.  What do you mean your best friend’s brother who’s a physio said you shouldn’t do that? Don’t be ridiculous, you’re just not trying hard enough.  I mean they are 1 for goodness sake.
Complex child land:
The reality of the expected walking age is usually made clear by the highly unconcerned shrug of the Paediatrician at age one.   However for some children, developmental milestones are not a given.  Nor are they here for keeps.  Severe illness, or neurological symptoms can cause the dreaded regression that steals away precious abilities and breaks parent’s hearts.  When progress does happen, it is often with help.  Hours and hours of therapies.  Standing frames, walking frames, specialist boots (a word to the men out there.  These boots are heavy beasts, so if your child kicks out in a certain direction…move…move very fast).  But when it does happen.  When all of a sudden, out of nowhere, your child inches forwards.   Or grabs hold of a toy.  Or pulls themselves into a crawling position.  There is truely no comparison to that moment. 
Our reality:
At age 4, Little J is unable to walk and is just learning to crawl.   We are accepting the reality that his wheelchair and all that comes with it is not here for the short term.  It’s here for keeps.  But it doesn’t really matter.  Honestly, it doesn’t.  Because one way or another, I genuinely believe he’ll get there.  What ever ‘there’ is for him.   What ever works for him.  If he walks, amazing.  If he doesn’t – so what.  We’ll just get the coolest chair in town.

4.       Baby/Life Balance
Perfect Baby World:
Time to yourself is important.  In moderation, of course.  Get yourself down the gym.  There’s plenty of babysitters and creches out there.  Go out for dinner.  Get out with friends.  It’s important to take time away from your child.  
Complex Child Land:
Pa ha ha ha ha ha ha ha ha ha ha ha.
Our reality:
Our reality is really nothing in comparison to what many parents of complex children have to deal with.  But, at age 4, we still cannot use a babysitter, or mainstream childcare service.  We still have to maintain constant monitoring in case of a sudden neurological attack and we need to be listening for the apnea monitor at night in case of a dangerous pause in breathing.  As things currently stand, we also have no regular respite care in place due to moving area five months ago.  And in light of the current budget cuts, we know that the support we do receive will likely be very limited. However, we are, undoubtedly fortunate.  We have adapted.  Our boy comes everywhere with us. We are used to ignoring the stares as he comes out to dinner with us and we clatter his wheelchair into the accompanying table whilst he helpfully ‘clears’ the table of anything in reach.  As he gets older, heavier and louder, that may not be feasible.  But for now, we can.  And we are very lucky.  Because he’s a pretty awesome dinner companion.

5.       Sleep
Perfect Baby World:
Sleep is a tricky issue with a baby.  No doubt about it.   But in Perfect Baby World, let’s be clear on one thing.  If your child won’t sleep, it is absolutely YOUR FAULT.  You didn’t read the books did you?  You didn’t learn the techniques.  I think I can guess where you went wrong.   You picked them up.  It’s true isn’t it?  You saw your baby and you picked them up.  Idiot.
Complex Child Land:
In complex child land, the approach to sleep may be unconventional, but a little more rational.  You see it’s pretty hard for a child to sleep with a monitor attached to them, or an alarm that goes off every few hours, or when they are struggling with symptoms.  So we don’t really beat ourselves up about it.  We are all, undoubtedly shattered, but I’m yet to hear the ‘ssshh and pat’ technique get discussed on the Children’s Ward.  It just is the way it is.  So we drink coffee.  A lot of coffee.  With 25 sugars.
Our reality:
Sleep has been an ongoing enigma in our house.   Whilst we are lucky not to have wires or pumps to worry about, for 2 years we managed a child who would scream every night from pain and neurological symptoms.  I was once asked by a doctor how I knew my son was in pain as a baby and not just..well, being a baby.  I can only assume that doctor has no children.  There is a desperation and panic that comes with a cry of pain.  Our baby would stare desperately into our eyes for help whilst gasping for breath, then realising there was no help coming, he would collapse in sobs in our arms.  It was horrific and there was nothing we could do. Night after night.  For over two years.  Then finally, the right medication was found and life changed immeasurably.  Does it now involve vast quantities of sleep.  Erm, no.  He’s pretty partial to a 4am party.  But I really couldn’t care less.  He’s not in pain.  And that is beyond ace.  Oh, and guess what.  It wasn’t our fault.  Despite all the times I questioned if it was something we got wrong. It wasn’t.  We didn’t need sleep training. We just needed the right doctor.

So you see…on most of the babyhood ‘musts’, we completely failed in the perfect.  And it really didn’t matter.  Because, without sounding like the end of a CBeebies programme ‘we tried our best’ (or ‘it’s a Bing thing'…whatever floats you boat). 
And trying is really the best anyone can hope for.  So we didn’t fail.  Instead we learned a whole load of things along the way.  I never knew that 4am was the best time to view the moon, or that it was possible to communicate with facial expressions alone.  I never knew how much fun it could be to do donuts with a wheelchair or how exciting a Wotsit could be.  I never knew that I could be bestest friends with a non-verbal four year old.
And the reality is that traditional perfection will never come.  Our success will be a different kind.  And even if nothing really changes and new achievements are painfully slow. It doesn’t really matter.  Because for me at least, trying is the new perfect.  

Thursday, 17 September 2015

Schools, roads and automobiles

We need to talk about escorts…

No, not that kind of escort (though I sense this post may get some ‘interesting’ Google traffic).

I’m talking about transport escorts.  SEN transport escorts to be specific. Which means that right now, depending on who you are, you are either saying, ‘Who the what now?’, or, ‘Oh, I love our escort’, or banging your head repeatedly off the table whilst slowly chanting the phone number of the local authority transport team (which are now the only words you are capable of saying after desperately trying to organise transport for the last two weeks.)

You see, it’s the start of the school term after six long weeks of summer <prosecco corks pop across the land>.  And for those of us with children of the more unique variety, that doesn’t just mean dusting off the school bag and frantically scribbling names onto clothing labels: it also means figuring out how on earth they will get there. 

Yes, it's a bear riding a cement mixer. 
No, we don't have a toy bus.
Because children who attend special needs schools often travel long distances to reach them.  In some cases an hour each way.  Which would mean four hours of a parent driving.  A parent who may have a job to hold down, or siblings at completely different schools. Thankfully, when writing policy, some sensible governmenty person recognised that this was not viable and ensured that many special needs children are entitled to transport.

In theory….

And this is where it all gets a bit sticky.  Let me start by saying this post is NOT a criticism of transport escorts.  They are pretty fabulous.  It’s about the process in the background which does little to protect them, is hugely variable across the UK and within which the combined words ‘risk’ and ‘assessment’ are about as likely as ‘Prime Minister’ and ‘Bobby Davro’ (Big Brother aside)………(look, we had limited TV channels for a while…I judge myself more than you judge me).

Now I do accept that my opinion is a little skewed, as I only have our experiences in two boroughs.  But if I was to tell you that in borough 1, my little boy was transported on specialist medical transport marked ‘ambulance’, on his own, with an escort in a paramedics uniform, with no clear assessment process behind that decision; and that in borough 2, they were initially considering putting him on transport with five other children and one escort with no training… can see why the adjective ‘variable’ seems appropriate.  For the record, we are not in favour of either option (and not because I’m just that objectionable and annoying).  Both transport companies are great – the objection is nothing to do with them.  But I don’t think it is appropriate to spend public money putting a child on specialist transport when all that is needed is a 15 min training course, nor do I think it is safe to have a child who needs constant supervision and has 20 neurological attacks per day on a busy bus with other potentially vulnerable children in need of support. 

And at the heart of this problem is one key issue…..accountability.  Because what is happening in most local authorities is a stark avoidance of accountability.  Transport contracts are outsourced.  Which is fair enough, as long as responsibility and accountability aren’t outsourced with them.

Escorts are generally not employed by the local authority.  They are employed, interviewed and supported by whoever has the contract – in some cases a transport company.  And in others a local taxi firm.  These companies are often not given the information they need, or any training.  Responsibility for making escorts aware of the vital information that they need is often handed to parents.  This has been the case for us in both our boroughs.  In our current borough, the transport provider was given no information about our son’s condition whatsoever before taking the contract.  All information has come from us at a later stage.  We have been told by the local authority that escorts ‘cannot’ intervene with basic actions like keeping our son’s head upright to ensure he doesn’t choke in a prolonged paralysis attack.  Nor are they supposed to perform basic CPR should the worst happen.  They have not been given this basic training.  They can just pull over and call and ambulance – on remote roads.  In the middle of nowhere.

And this is where I get a little bit antsy.  Not because I have a ‘special’ child with ‘specialist’ needs.  Not because I’m a foot stamping, unreasonable parent with no understanding of the pressure on local authority budgets.  But because it makes no sense.  Lets’ park the fact my son is medically complex.  Let’s completely forget that he is high risk.  Let’s just focus on one thing……he’s pre school age.  The highest risk age.  The age where there is a current, completely justifiable push for all mainstream nursery staff to be trained in CPR.  A push that is quite rightly about to become law.

Yet, for some unfathomable reason.  Pre-school children, without their parents, on remote roads, with a history of medical emergencies are not protected by any law to ensure that escorts are given this basic training.  And neither are the escorts.  I said at the beginning this is not a criticism of escorts, or the companies who employ them – they deserve this training for their own wellbeing.  The duty of care is not theirs.  It is the local authority who contracts them.

And so, in our experience, what often happens is parents and transport companies work together.  They develop a trust and a bond.  There are no guarantees, no legal guidelines, but we work together to reach a point of trust.  A ‘don’t worry, Dave the driver used to be a paramedic’ reassurance.  A little wink to the escort (...that’s just doubled the questionable Google traffic). 

Does it work…for the most part.  Is it right…I’ll let you make your own decision. 

In asking around on this issue I’ve heard lots of different stories from different areas.  Those with escorts trained to perfection by Community Nurses … tales of taxi companies with bald tyres and no child locks showing up to transport a vulnerable, mobile, pre-school child.   It really depends on where you live.

There’s no question that funding is a root issue here.  Local Authority budgets are bending so hard that the impending snap is almost audible.  There are lots of core challenges around accountability, appropriate assessment and consistency.  But there is also one around rhetoric and response.  Stating ‘well many parents choose to transport their children themselves’ is not a viable response to any challenge.  Firstly, that doesn’t really inspire confidence.  And secondly, I can’t.  Me driving alone, monitoring neurological episodes for 45 mins each way is not a preferable option.  Secondly, I work.  I have no plans for that to change.  I’m not going to bang the working carers drum again, but… know (hashtag parliamentary inquiry – nuff said.) 

But all of that aside...this issue is so complex I can only boil down it to one request.  To me, it is very simple.  Transport escorts should be given the basic 15 minute training that they need to save a child’s life.  This should be mandatory if that child is in the high risk pre-school age category.  For their confidence and support, for safety’s sake….it just makes sense.  I’m not saying it resolves everything, I’m not saying that it’s a perfect solution….but knowing that when I put my baby onto a bus, there is someone there with the confidence and knowledge to breathe life back into his lungs on the side of the road is a pretty major reassurance in the context of our lives.

We have waited an hour for an ambulance in an emergency before.  Thankfully it wasn’t a respiratory emergency.  But every day, it gives me immense confidence to know that I do have this training.  I have it, because I had to.

I have it because we weren’t allowed to leave hospital without it - twice.  It was deemed so important, that we were given it twice.   

It took 15 minutes.  15 minutes to learn chest compression depths, learn the vital breath:compression ratio.  To have the tough talk.  The one where you know this training really matters, because no one sugar coats it.  15 minutes to learn how to save a life.

That’s all.

Just 15 minutes. 

Sunday, 17 May 2015

Confessions of the lucky

Eyes off the foot...just sellotape a leaf on.ok..
It’s been a strange old week.  A week which saw an unexpected majority conservative government take power.  A week in which social media has been a flurry of polarised comments.  With the left and the right exchanging blows on the deficit, the budget, the NHS, the cuts.  Oh yeah…the cuts.

I have stayed uncharacteristically quiet watching this debate unfold.   Mostly because it would just be too obvious for me to pipe up…yet again.  You may have noticed that despite my best efforts this blog occasionally tips a teensy bit into the political.  Not in terms of party – irrespective of where my personal views lie, I have very deliberately stayed away from mentioning party.  Because what interests me is policy.  And that’s unsurprising when you consider that families of disabled children are right on the front line of much of that policy.  So we have a tendency to talk about it.  A lot.  Admittedly an annoying amount sometimes (sorry bout that). And what has made it such a strange week is that all of a sudden, everyone else is talking about it too.

For the first time in my life – I am bang on trend.  I’m like gingham prints and clown trousers (yes…that’s a thing.)  I’m feeling like I should be sat in a bar in an obscure part of Hackney…chatting social policy whilst drinking artisan beer.   Except I’m sat at my table in the commuter belt, blogging about social policy whilst removing porridge from my hair.  Next year eh?

But my reason for not automatically crashing into the social media debate is because we are, in many ways, an inaccurate representation.  We are basically, phenomenally lucky.  And that makes it very difficult to speak up as parent to a profoundly disabled child.  Because I have very little right to represent that group.  We are a two income household.  We are moving to a house in a very lovely little village.  It’s no mansion and I am slightly terrified of the impending quotes to wheelchair adapt.  But still.  We are lucky.   So how can I possibly leap into a debate on behalf of a group where four in ten families are under the poverty line?   

To be honest, I can’t.  I can only speak about our experiences.  I can only tell you what happened to us.  That how we look like on paper doesn’t come close to the truth.  That there is a complex mass of challenges around work, childcare and housing that sit behind that picture. That we are pushing ourselves to be in that very lovely village, because it is one of the few local authorities where there is childcare for disabled children under five. I won’t write about childcare again, I’ve bored everyone to tears on that here and here.  But what I can say is that there was a time when our options seemed very limited indeed.

There was a point where we were stuck.  Wedged right in the middle. Whilst we were lucky to own our home, we could not move ourselves somewhere big enough to wheelchair adapt on one salary, there was no adapted rental option available and the advice from our local authority was to move to council housing.  Only we didn’t really qualify.   We needed to earn more or earn less. And unfortunately, the current system is only designed to push families of disabled children in one direction.  Those families are facing increasingly stark choices.

What changed our situation was pure, simple luck.  A paperwork cock up went in our favour and enabled us to access some degree of childcare.  I won’t wax lyrical on that for fear that someone may want to undo that cock up (I can feel the eye of the town hall swinging towards me like the eye of Mordor as I write that). But it was luck.  Not hard work.  Not winning a logically, legally supported battle for support. 

We aren’t special.  We aren’t clever.  We are just very, very lucky. 

And that matters because of the other thing that has kept me quiet in the last week.  I’m having an increasingly emotional reaction to some of the media coverage.  And I need to get that under control before joining the debate.  It usually comes when I foolishly scroll down on news articles about disabled children.  When brain and index finger have a moment of disconnect.  When I reach the comments section and inevitably, I find them. 'Those' commenters. The ones who are unfailingly vitriolic in tone.  They talk about ‘free houses’, ‘free cars’, ‘free money’ (really?)  They drift into completely unnecessary stereotyping.  

What those commenting fail to accept is that families of profoundly disabled children are, by necessity accessing state services.  That it is not a matter of choice.  It can take a whole team of people just to facilitate some degree of ‘normal’. We walk in a different world.  A world that is often misunderstood even by those within statutory services.  I remember an accusatory nurse, firing questions at me on an open hospital ward about why we had a social worker.  Eyes thinned, face filled with judgement.   He had absolutely no understanding of the disabled children’s team or that they even existed.

And these stereotypes are having a real impact.  A survey from Contact a Family showed that 70% of respondents felt the stigma of claiming disability benefits for their child has increased in the last two years.  There is an 'us' and 'them' rhetoric that has stealthily and steadily crept into public consciousness.  There are some who would call it an act of masterful misdirection.  A PR trick of the highest order.  I'm not sure if it is that deliberate.  But there is no doubt that the families of disabled children have felt the stinging depth of cuts to public services, particularly local authority services. Yet they are perceived by many as somehow privileged.

And the cuts will continue to come.  They will.  And if you think that because we own a house and are a working family they will not impact us, you are very wrong.  We are still, undeniably state dependent.  We are dependent for vital equipment and we are dependent for respite support.  Like so many, we cannot look to the future of our respite provision with confidence.  Local authority budgets for disabled children are not ring-fenced and will no doubt be in the firing line again.  And I feel for the staff on the front line – I really do. Whilst I may have entered into many debates with the local authority, mostly around childcare; there have been so many times where it has felt as if social care and I are merely stood shrugging at each other in mutual defeat.

And I know that the challenges will only get harder with time.  I made a deliberate decision some time ago not to actively engage in debate around adult services.  That may sound blinkered.  Which would be accurate, because it is. But it is also fundamental self-protection.  It is the result of a piece of advice from a far more intelligent and experienced mother than me.  A parent to two disabled children with very different outcomes.  She saw me managing a child with an uncertain medical future, yet panicking about what would happen when he reached adulthood.  She said one line that has shaped my approach for the last year, ‘don’t do that to yourself.’ 

And she was right.  But now I am ready for that approach to change. Because I can’t completely ignore it.  The information is right there, brushing up against me and no matter how hard I close my eyes, it’s impossible not to take a peek.  It is impossible not to become increasingly aware that my foolish belief that we would control our son’s future in adulthood was misplaced.  That when he legally becomes an adult, the forceful hand of the state could come swooping into our little world more than I expected.  That my vulnerable, loving, non verbal, totally dependent child’s future does not lie in my hands.  That the policies taking shape now, may well dictate what the future looks like.

And that is frightening.  It is catch your breath, hold on tight and push down the acrid rising panic kind of scary.  I’m not looking too hard quite yet. Because I might not like what I see.  But I can’t ignore it for ever.  And with two recent tragedies involving young adults sat right on my doorstep, I’d be a poor excuse for a parent and a human being to ignore the well-developed, heartbreaking and ever evolving campaigns being led by their families.

And this should matter to all of us.  Because at some point we will all be state dependent.  Whilst I want to believe that my later years will consist of sneaking gin into the old people’s home and organising late night zimmer-raves when the staff least expect it (I’ll see you there).  I imagine the reality will be a little more grim. 

Because here’s the thing.  This sucks.  All ways round.

And I genuinely don’t mean that as a political statement aimed at either side.  I don’t believe that even the most extreme media stereotype of the right would claim that cuts to public services are an inherently good thing (from their corner office whilst eating a roast goose). Similarly, I don’t believe that the extreme media stereotype of the left would claim that national debt is an inherently good thing (whilst chaining themselves to a railing and petting a rescued goose).  And whilst we all know that those stereotypes are in no way reality, media coverage and social media often show a degree of polarisation. One or the other.  When in fact we all have one thing in common….the extent to which the whole picture generally sucks, not matter which side you are on.

Whilst I love political debate, at some point we have to stop being so polarised and come together. Because the reality of austerity means that this is not going to be a golden era for public services.  And that won’t just be hard for a few of us, but many of us.

So at some point we are all just going to have to metaphorically hug it out.  Whilst I hope the conversation continues, I really do, I know in reality, the current level of interest from the mainstream will most likely wane and fade.  But no matter where our individual politics lie, we can all translate these conversations to positive action. 

For me, it will be more involvement with small voluntary groups (many of which are seeing their statutory funding levels decrease).  It will also be an effort to get to know the parents of disabled children in our area when we move.  Because sometimes, it’s the little things that matter when you are pushed to the brink.  Just doing normal people things like going to a coffee or going to the pub. 

Because we all need that.  And as time goes on and services change and evolve, some of us will need it more than others.  Sometimes I can offer support.  And I pledge that wherever I can, I will.  But alongside that, I accept that, sometimes, the frustration will rise, the fear will set in and I will be the one who needs it. 

So if you're offering…mines an artisan beer (clown trousers optional).

Wednesday, 22 April 2015

White wine and patchwork

This is a hard post to write.  A really difficult one.  A bite your lip; dig your nails in your palm toughie. 

And I don’t mean that emotionally.  I mean it really blinkin literally. 

Because I’m stuck.  Really stuck.
This Friday (24th April) is Undiagnosed Children’s Day.   The day that undiagnosed families, stand up, step forward and flood social media with that all important messaging.  And I’m completely out of ideas.
If I’m honest, when I wrote about Undiagnosed Children’s Day on year’s one and two, I didn’t really think we would still be undiagnosed by now.  I thought there MUST have been some kind of answers.  At least one little oddity on a test that gave us a direction.  So when I wrote, I put myself completely out there.  Full on reality.  I hit you with some scary looking no make-up selfies.  And now there’s not much left to show or reveal (alright I probably left a teensy hint of mascara on there, but it all gets a bit mirror crackingly hard to look at otherwise).

So this time around, how can I put it across differently?  How can I explain how important this day is?  How chronically underrepresented families of undiagnosed children are and why awareness and funding are crucial.  I’ve been desperately trying to come up with something (whilst flicking back and forwards to look at funny memes and cartoons on Facebook).  And I’m getting nowhere.  I’ve considered an insightful drawing, but I have no artistic insight…or talent for that matter.  I’ve considered a timely politically relevant pre-election post, but unravelling the party health pledges just made my head hurt. I’ve even considered a haiku (look, I didn’t say they were good ideas).  But I’m still stuck.

So I’ve started to think about what ties us all together.  The themes that recur. For many, it’s the devastating uncertainty of no prognosis.  For others, not being able to accurately treat unfathomable symptoms.  In some cases, not knowing if future siblings will be affected cuts deeper than can ever be explained. 

But one keeps coming up.  It pops up in the statistics, in the blog posts, in the articles.  In many ways it’s a direct consequence of the unknown.  It affects the parents of the medically complex, fearfully sat beside hospital beds alone. Walking shell shocked down sterile corridors. It impacts the parents of children with unknown developmental conditions; so often misunderstood and unfairly judged as having children who ‘misbehave’.  It affects those sat somewhere in the middle, struggling to find a way to explain the inexplicable.  It affects all of us who have battled for support, not ticking boxes or fitting into the system that is meant to support us.  All who have stuttered over the whats and the whys, even around other parents of disabled children.  All who have inexplicably had to take a breath or hold back the tears as we meet a new baby or watch a child overtake our own.  Never out of jealousy and never out of sadness, just because every now and then a little gut punch hits and a little voice whispers, ‘you are different now.’

Isolation is a running theme and it affects parent carers immensely, even when a child has a diagnosis. 65% of families with disabled children report feeling isolated frequently or all of the time. (Contact a Family). Without a diagnosis, it can make it even harder for families to feel that they have somewhere to ‘fit’. 

And it is rarely the fault of those around us.  Friends can’t fix society.  Or statutory systems.  Or the fact that the woman on the bus last Wednesday tutted and rolled her eyes.   In our case, many people close to us have been immensely supportive and there are no words that can thank them enough.

But truth be told, it’s hard to be undiagnosed and not become isolated in one way or another.  And I’m not afraid to admit that sometimes it’s self-isolation.  It’s hard to know how to move forwards when there is no clear route. 

Only here’s a problem.  I’m sat here writing about isolation and it’s a bit hard to justify.  Finding our place in this new world, navigating this complex landscape has so often been easier than it could have been.  The isolation has been minimised so many times.  And that is because of direct support from SWAN UK and the people we have met.   I’m sat here procrastinating by looking at Facebook and l’m looking at a list of people I would never have known otherwise. 

Because without SWAN UK, there is so much I would never have done.
I would never have sat in a field drinking wine with funny, interesting people two years in a row.  I would never have jumped on a train to Bristol just to have dinner with a group of inspiring women (with wine, I admit – that recurs).  I would never have danced the Hokey Cokey with a 1980s television presenter (I would just like to clarify, that was at a children’s event and was not the result of wine).  I would never have seen a recognisable face in the loud and intimidating landscape of the children’s ward.  I would never have sat in the local pub in our tiny village and been able to talk to another parent who totally understood.  I would never have watched Little J flourish around other children who are all so different, yet just like him at a children’s theme park.  I would never have laughed at social media innuendo on a particularly bad day.  I would never have learned how to patchwork from a mum with actual sewing skills when I decided I wanted a ‘project’ (FYI – I have no skills).  I would never have had so many people to chat to at a disability equipment show, that I missed half the stalls.  I would never have broken down the walls around us by telling people about our experiences so openly.  I would never have kept up the fight to end the isolation caused by being pushed out of the workplace by statutory systems.  I would never have been able to think ‘this is going to be ok’ when things looked so undeniably bad.  Never have had the reassurance of those who have been there and come out the other side.  I would never have had a name for my boy’s unknown condition.  But we do.  He is a swan. 

...So I guess it’s not that isolating after all. 

But it could be so very different.  Because SWAN UK has no long term funding.  Their main grant comes to an end in April 2016.  1 in 25 children are born with a genetic condition and around 50% are likely to be undiagnosed.  SWAN UK provides the only dedicated support in the UK for families with undiagnosed children.  Families who often have absolutely nowhere else to turn.

And that support is vital.  Bringing thousands of people in the same situation together is important.  Having representation for us as a group is important.  Whilst I would love to believe that ‘what about the undiagnosed?’ regularly pops up on health and social care agendas; without a recognised and respected organisation advocating for us, I doubt it does or will.  

Breaking the isolation is vital.  Because whilst not everyone will share opinions or interests, whether you are passionate about green tea and yoga, or partial to white wine and patchwork; when there are enough people there, you will find someone to talk to.  And much like patchwork, the thread that binds makes the distinct pieces flow, no matter how different they may be.
And for us, that is why Undiagnosed Children’s Day matters.

Because with the right support, you will find people to talk to.  You will find people who understand.   You will do things that you would never have done otherwise.  And most of all you will find it a little easier to answer that voice when it whispers ‘you are different.’  Because we all are.

If you would like to donate to SWAN UK, you can, by texting SWAN11 £[amount] to 70070 or via their Virgin Money Giving page.