Wednesday, 29 October 2014

Ten things I didn't know until I had a child who uses a wheelchair

Now I say wheelchair…

If you saw us walking down the street, you may dispute this one.  You see we have a ‘special needs pushchair.’  That means it has four little wheels rather than the two big wheels on the classic ‘wheelchair’ sign.  This can confuse people immensely.  I know this from the occasional eye rolls, the whispered comments about ‘how old’ Little J is and the faithfully self-appointed ‘blue badge police’ who like to come and stare as I struggle to lift our metal beast from the boot.  At times those looks can come with such ferocity you would think it impossible for anyone to be born with a disability.

But it is a wheelchair.  It really is.  For a long time I tried to convince myself it wasn’t.  But it is.  My lovely little boy has no mobility.  At three years old he can’t stand up, even for a second.  Despite its deceptive size, our wheelchair is heavy.  Full of postural supports and ‘tilt in space’ functionality, aimed to allow for sudden loss of tone. We don’t nip round corners, or weave in and out with the ease of buggies on the high street.  Our wheelchair is here for the duration, aimed to see him through a number of years.  And most tellingly, our wheelchair is on loan from Wheelchair Services.  The clue’s in the name eh.

But our wheelchair is our friend (a slightly mean friend who likes bruising me with metal sticky out bits).  And over the last year I have started to learn some things about life with a child who is dependent on a wheelchair:

1) The bus bar of doom is a major design fail

Buses.  They all have a big wheelchair section right?  They even do the cool hydraulic bendy thing where they tilt for wheelchairs to get on.  The bus has got to be good.
Well, kind of.  In theory, all should work well.  However, for reasons that I cannot explain, on some newer buses, someone decided that it would be a great idea to install a large floor to roof bar right next to the wheelchair section.   These can be mostly found in London, where it is nice and busy and manoeuvring is that extra bit fun. I can kind of see the point.  If you had one large wheelchair in the space and no one standing next to it, it wouldn’t be an issue.  However, the majority of the time, that isn’t what happens.  And the space isn’t just used by wheelchairs.  It’s used by pushchairs, fold up bikes, mobility walkers and the obligatory cloth shopping trolley with a floral design and a territorial owner.  With a small wheelchair like ours, you can fit another chair alongside, or alternately a plethora of random stuff on wheels.

And so what inevitably happens?  We get stuck.   Foiled by the bus bar of doom.  

Now on a busy bus, in order for us to get off, this means whatever wheeled device is next to us needs to move.  Meaning that everyone else has to move to make room for them.  Oh and we only have around thirty seconds to complete this before the doors start closing and the general atmosphere of frustrated commuters borders on ‘twitchy.’    Generally in this situation I can feel a slight rising panic as our stop gets nearer.  I have the bus bar right in my face, a brake to get off and tricky backwards manoeuvre to try and control.  The odds of not head-butting, knee jarring or wheelchair ramming the bar whilst completing this are pretty slim.   Generally it goes something like this…

I’m really sorry, would you mind just backing up your pushchair a little whilst I just...<THWACK>….I’m fine, I’m fine, really…sorry, can someone just hold the doors whilst I…<THWACK>…Ok, if you just inch a little bit that way, and I just go a little bit..<THWACK>…I’m sorry everyone.  I’m so sorry.  Right, I think we can fit through there if you just..<THWACK>….

Well done bus designer.  Well done.

2) My child has superpowers

This one was a recent revelation.  It only became apparent when we recently changed our wheelchair.  Before it pretty much resembled an oversize pushchair, with standard straps.  When out and about in it, Little J would attract a fair amount of attention.  Partly from his tendency to break into fits of laughter and partly due to his growing mop of blond curls (these can have a magnet like effect on certain passing women and daddy feels very strongly that they should not be cut under any circumstances).

However, the need for increased postural support has meant that we have had to move up to a larger chair with a supportive vest across little Js chest.  It screams ‘different’.  It was on his first day in this, as we got onto a busy train that his amazing new superpower became apparent.

He now has the power of invisibility.

It is truly amazing.  He can do pretty much anything.  Be loud, be funny, be downright annoying.   An odd glance in our direction usually then passes straight over us at sudden lightning speed.      

3) He will not use these powers for good.

With great power comes great responsibility.  And my child has zero respect for such things.  

You see being at wheelchair height puts little J in a perfect position for his two favourite pass times.  Pickpocketing and bum grabbing.

I have had to intervene with an oblivious stranger as he was merrily riffling through her open bag.  I have had to return a pen to a confused lady trying to do her Sudoku.  And worst of all I have had the hideous moment when a woman swung round glaring accusingly at the horrified man next to us.  I fessed up that the bum slapping was actually the result of a highly amused invisible child who was now looking mightily pleased with himself.
You see, I need to be good at my sorrys - which brings me onto learning 3 (ii) You can’t run fast with a wheelchair.

4) I wish I had done an engineering degree.

So, to loosen the laterals, you just need to lift the liner here, put the allen key in here, Now not that really obvious bolt there, this one round the back that you can barely reach.  Loosen with two turns counter clockwise, twist and slide the lateral, unclip the strap, reclip the strap, tighten with the allen key and refix the liner.  Got that?

<Cue slow nod>

What I really want to say is no.  No, I did not get that.  In fact I have no idea what you are talking about.  Your mouth was moving, but what came out did not process in the slightest.  What I heard was this.

So, to move the sticky outy bit, move this bit, shift that bit, put the metal bit in that other bit, left a bit, right a bit, left a bit, wiggle it, left some more and then put it back together.  Got that?

In fact I am currently praying that Google will resolve this for me.  Alternately, I will be spending the next month practicing my ‘I might cry if you don’t help me and that will be really awkward’ face to use on any nearby Physio or Occupational Therapist who actually understands laterals and footplates. 

But at least I have a free allen key. So, erm..Score?

5) Wheelie bins are the devil’s play things.  Fact.

6) There really is only one M&S.

Like many parents of disabled children I am currently facing a conundrum.   Little J is now too big, too strong and finds too much joy in dangling off things to use baby change facilities.  He needs a larger space to be changed on, where I am not required to physically pin him down with one arm to prevent him plummeting to the ground.  Only there are hardly any of these available.

There has been a campaign in recent months to try and increase the number of ‘changing spaces’.  The reason?  Because a lot of ‘disabled toilets’ don’t actually meet the needs of the full disabled community.  Many are not big enough to also accommodate a carer if help is needed to access the toilet and they have no hoist.  They also do not have changing benches, which is what we need to use at this stage. 

So our option the majority of the time is the floor.  That’s the floor of a public toilet.  Yuk.

Now we have a sizable changing mat, but that really isn’t the point.  I have to carry that mat round with us and clean it, so I reserve the right to be picky about where it goes.  We have been known to tour toilets simply to find one with a regularly cleaned and suitable patch of floor.   

And so, we have developed our ‘go to’ places.  Shops that we look out for wherever we are, knowing the odds of success will be pretty good.  So far, Marks and Spencer gets my prize for general cleanliness and large disabled toilets.  (and for vegetarian Percy Pigs…I like you very much for those too).

Although if you fancy installing some changing benches I know you will make a lot of people very happy…..and I’ll even buy extra Percy Pigs to say thanks.  (That’s a lie. I’ll probably buy them anyway...that's not good negotiation is it?)

7) There are some very bored dads out there.

I’ve now had this one three times.  Mostly with Little J’s old, pushchair like chair.  I’ve noticed the stare from across the shop or across the pavement.  I’ve thought it a little brazen to stare at a wheelchair so obviously, but hey, each to their own.

Then I’ve noticed it.  The look.  The slight hint of admiration.  The intake of breath.  The penny dropping moment that they realise.   Can it…no…can it be…can it actually exist?

You see what I have discovered is that a lot of dads must spend their time mentally planning an activity I can only describe as ‘pimp my pushchair.’  This has led to three awe struck occasions where I have been approached with the hallowed words,

Your pushchair…your pushchair has REAR SUSPENSION!!!

I have never been able to shatter their illusions and tell them it is actually a wheelchair. Instead I just say thank you and revel a bit in the jealousy as I take a curb at speed. 

8) Train roulette is no fun.

‘The train doors will open on the left hand side.’

‘The train doors will open on the right hand side’

‘The train doors will open on the left hand side’

‘The train doors will open on the right hand side’

Annoying isn’t it?  Now imagine every single time you have to bend down to take off the brakes by hand (because you don’t wear steel capped boots).  Then you have to spin around a heavy chair and annoyed child on a moving vehicle and shift to the other side of the train to get out of the way of everyone getting on and off.  Its particularly fun if you are trying to give medication or food (which is unavoidable at certain times of the day).   Next time I think I’ll take the bu…oh, wait.

9) Oh Christmas tree, oh Christmas tree, how massive are your branches...

Don’t get me wrong.  I love Christmas.  I really do.  But it can make accessing most shops virtually impossible.  Extra displays of decorations and novelty gifts start popping up smack in the middle of the aisle.  A lot of the time, we simply don’t fit.  Or it is a case of squeezing through and hoping I don’t emerge with a child who has acquired a tinsel scarf, bauble earrings and is clutching a porcelain baby Jesus.

10) When it’s windy, it is physically impossible to hold a cup of coffee, steer a wheelchair and stop an A line skirt blowing up.

10 (ii) I probably value caffeine too highly.

So you see I have learned a great deal since being mother to a little boy who is dependent on his wheels to get about.  And whilst it may sound like I resent his chair, or am upset by his chair; I’m really not.  His chair is his potential independence.  His chair is his mobility.  Being out and about makes him happy.  And that makes me very happy indeed.

And he really does love being out.  Nothing brings more joy to his little face than hearing me squeal as we accidentally take a downhill slope at an overly ambitious pace. 

And we can.  We can because of technology and because of the healthcare system.  It’s not always a flawless process, but it’s there.

However, accessibility is still often a huge challenge.  Only this month, it was finally announced that the new Crossrail network through London would be step free.  Surely this was a given in the city that hosted the Paralympics not so long ago?  No actually.  There has been significant campaigning from the disabled community after initial reports that seven stations would not be accessible.

But it’s not just about accessibility.  It’s about ensuring that people with disabilities have the same opportunities as everyone else – a necessity if inclusion is ever a true possibility.  And that matters.  It really should matter to all of us.  We are an aging population.  A population whose needs will grow and become more complex.  A great deal of us will be dependent on some kind of equipment to get around in the future (I’m holding out for the Back to the Future hoverboard).

But things are changing, and there is certainly more awareness of accessibility than when I was a child.  I see more lifts.  More wheelchair access signs.  More ramps.   Not all the time though.  Sadly, many places remain completely off limits.  But perhaps one day. 

Perhaps when Little J is older full accessibility will lead the way.  And true acceptance will follow.

Thursday, 18 September 2014

Woods, trees and everything in between

I like to believe I have a fairly good memory.  Not a fluid one.  I tend to think in visual snapshots, moments.  But I think I have an adequate grasp on the facts of events.  The little details may not be entirely accurate.  I may be wearing red when I was actually wearing blue.  The clock may be on the wrong side of the room.  But the nuts and bolts or the scene play out in pretty much the right order.  I am, however, fairly sure that my perception of my own memories shifts with time.  The early 30s passerby who looked oh so old, suddenly looks fabulously youthful.  The annoying child crying at their mother on the outskirts of the scene suddenly looks that little bit more endearing.  Because no memory can be entirely accurate.  They are all vulnerable to hindsight and dependent upon a current world view.

And right now, my understanding of where we are, what is going on around me moves and shifts all the time.  Not because of a rapid chain of events, but because I am slowly learning more.  I used to live in a world where doctors had all the answers.  Where children didn’t live, even die with no diagnosis.  Where the social care system would step in during crisis. A world where I dictated my own destiny and where hard work could overcome anything.  A world where the system was fair and just.  Over the last three years I have slowly come to understand a new world, met people who live in that world and come to realise my naivety and lack of gratitude to the world I thought I inhabited.

Don’t get me wrong, I have a lot to be grateful to this new world for, but I am still learning the nuances and subtleties.  Like a child finding their way, I have applied a fairly basic understanding to much of it so far.  Subconsciously categorised the authority figures that have suddenly appeared in this little set piece into heroes and villains.  Those who are in our corner, who care about the job that they do and those working to another agenda. But as time moves on and I learn more, I am coming to see the huge expanse of space in between.

One childhood memory in particular makes me see the importance of understanding.  The need for context.  I must’ve been around six at the time, at a rough guess.  I remember running onto the London tube platform ahead of my mother.  I remember the waiting area in the middle of the outdoor platform.  I remember the heavy set man with a skin head I ran past.  The people all around whose faces are now an impressionist blur.  The elderly lady kneeling down and praying. The overwhelming presence of the colour grey. Grey platform, grey concrete, grey sky. The sound of the approaching train.  I remember exactly where I was when I was pulled into the air.  I remember being lifted and spun, suddenly heading towards the stairs.  I remember kicking and fighting this man who had grabbed hold of me.  I remember his arms digging in as he struggled to keep a grip.  I remember my confusion when he put my down, halfway down the stairs at my mother’s feet.  As she thanked him profusely whilst I cried a sob that was somewhere between fear and indignation.

I’m not really sure how I learned the truth.  Like most memories, the scene ends suddenly.  I’m not sure if my mother delicately tried to explain to me what had just happened.  Or if over time, I just came to understand.  In my six year old mind, there was only one explanation.  I lived in a world where strangers were the threat we were all to be aware of.  Where they menacingly handed out sweets on street corners.  A world where old ladies were all grandmas.  That’s what school taught us.  That was how it was.  I didn’t live in a world where old ladies threw themselves in front of oncoming trains.

Whatever I was told that day, I know that I learned that the bad man was actually a good man.  That there were no polar opposites.  Thanks to his quick actions, my memory remains nothing more than that.  Just a hazy memory of a big bald man who turned out to be not so scary.

And now, I find myself suddenly revisiting this memory, because I am doing the same thing again.  Casting villains without looking around first.  I am realising that, without even knowing it is happening, I am starting to approach some professionals with instant trepidation. Making assumptions based upon job title, not individual. I am interpreting their actions through a veil of pre-judgement.  You see, I am a little battle scarred.  A little disillusioned.  And that can make me a little unfair. 

I didn’t start out like this. I trusted everything and everyone blindly.  I wanted to be liked.  I didn't want to be the one who asked too many questions and quoted legal acts. And I soon learned that in this world, my new world, being that person was simply not an option.

But now I sometimes forget to step back and think.  I assume protection of budget and a lack of interest, because it is what has gone before.  We have seen it so many times.  We have had our fingers burned by ‘policy’ and fuzzy logic, so now I jump back out of habit. It has made me distrustful. It has made me forget that no one goes into the public sector, be it health, social or education; without a fundamental interest in the people that they support.  I’m forgetting to look at the wider picture and try to understand the enormous constraints caused by nationally led budget cuts across the board.

I’m becoming cynical.  I’m even becoming a little bitter.  I am scared that there will become a point, many years from now, that I have been angry at the system for so long, that I am just an angry person. 
So I am making the decision not to be.  

To the professionals I have been a little short with. The ones who get the slightly bristly e-mails from me.  I’m sorry. 

I imagine you come across a lot of parents like me. I imagine you see me and I fit straight into a category too.  Another one of ‘those’.  The ones who make your job that little bit harder.   I imagine and I hope there are times when you so desperately want to tell us that actually you are fighting our corner.  About the internal meetings that we never see. That the decisions you have to relay that are not your choice.  That you weren’t ignoring us, you just had no answer to give.  That you didn’t not take a call to be unfair, you did it because your workload is totally unfeasible.  That you are just as frustrated by the framework that you have to work within too.

Because there are many times that parents like me see that.  We really do. And I promise that I will look harder.

I can't say that I won't ever challenge you.  But I can say that I’ll try my best to view all the interactions I have within a wider context.  In exchange, I ask that you imagine how it feels to be on the other side.  Imagine what it is like to not hold the power in this dynamic.  

And if you are one of the ones who really cares about the job that you do.  If you are having to deal with me kicking back because you won't let me run forward.  If it is because you can't show me the whole scene.  Well all I can say is I’ll probably understand eventually.   I’m just still finding my way in this world. 

Tuesday, 2 September 2014

Chillin in the long grass

I just want to go sit in the middle of a field.

I must think it monthly.  That’s a lie, fortnightly.  Alright, alright –  at certain times it’s weekly.   When the phone won’t stop ringing.  The appointments won’t stop coming.  The to do list keeps getting longer.  The battles for support get more complex.  I just want to pick up my boy and spend a little time together where it is quiet.  Hide out in the long grass.  Where there is no mobile signal, no ‘just be good and watch CBeebies whilst I sort this out..’, no hideous equipment with leg bruising sticky out bits, no letters starting ‘to the parents of…’.  Where we can just enjoy being together. 

..That is unless it’s during one of Little J’s ‘testing’ phases.  Then I’m well up for some field time by myself thanks (preferably with a glass of pinot grigio and a sizable straw).

But when I’m not longing for time spent sat in mud avoiding mosquitoes and the menacing gaze of livestock (oh, how my aspirations have changed…) I’m often found seeking advice from other families.  Families who understand the road we walk (ok, trip repeatedly on whilst trying to simultaneously style it out and brace for the next face plant).  Families whose advice helps us dodge those particularly nasty potholes. People who we interact with all the time, yet rarely get to spend actual time with.

And that’s why a weekend last month was particularly special.  Because we got to take a break as a family, in a supportive environment, surrounded by people who know that road all too well….and there was even a field.  We were at Camp Amazing, a camping event for children with additional needs and their families.

Now you may be thinking, so what?  You went camping with a disabled child – big whoop.  There are loads of accessible camp sites out there, places you can go.  And to a certain extent, you would be right.  But that’s not what makes Camp Amazing so special.

Camp Amazing is unique in that it is an annual event purely for disabled children and their families.  It is a place where we are free to break the conventional rules and do whatever is needed for our boy.  We got to carry Little J onto a bouncy castle and let him enjoy a space that is usually the domain of the mobile.   We got to spin him round and round a disco whilst he laughed his head off.  We got to plonk him in the middle of the dance floor whilst he stared at the flashing lights.  And he loved it.

For us too, it was an actual break.  A place where we could achieve the usually unattainable.  A place where we could be honest.  You see, in general out and about, I face a regular dilemma.  Do I explain Little J, or not?  Usually that answer is no.  Not because I am remotely concerned about delivering that explanation, but because it scares the bejesus out of people. The most common question is around what is perceived to be fatigue.  I usually get it from strangers when walking down the road, from the old lady in the news agents, at the post office counter.  ‘Ah look, he’s tired.  Look how tired he is.  Is he tired?’  I usually give little nod.  To my utter shame I have even been drawn into prolonged conversations that are devoid of truth.  Conversations based upon a fantasy of a troublesome three year old who was just ‘awake in the night.’  I have nodded along as they have told me how their child was always up at that age, asking for a glass or water or trying to sneak into their parent’s room.  I have tried to end the conversation promptly, as I watch the seconds tick by at alarming speed on the clock on the post office wall.  Because I can’t say the truth.  How can I say it?  How can I answer ‘actually, he’s right in the middle of a neurological attack which may or may not be a seizure. He can’t move at all and these happen all day.  Right now I’ve got one eye on his airways and one eye on the clock which is ticking closer to me needing to turn your post office upside down with boot stomping paramedics.  Can I get a book of second class and some envelopes?’

Yeah, better not to eh.

But at Camp Amazing we could be honest and no one flinched.  In fact, we had very little need to be honest.  I don’t know if it was the change in environment. I don’t know if it was being outside.  I don’t know if it was because daddy was subtly feeding him mouthfuls of Mr Whippy all day and his sugar levels were higher than Selena Gomez singing ‘Let it Go’ whilst downing a pint of Nesquik.  But he had hardly any of his neurological attacks and re-gained the babble he has been struggling to find since his last regression. It would seem all we need to do to get this boy to move forward is drop all his therapy and go live in a tent. 

For siblings too, Camp Amazing offers a special break.  Little J is an only child, but hearing siblings ask after the friends they made the year before, seeing them interact with their disabled brother or sister in an place where disability is normality….It all made for a fantastic environment.  I am sure there were some immensely proud parents that weekend and so they should be.

And for adults, an event like this is so very important.  I admit I was struggling a little prior to that weekend.  Not because of Little J.  He is doing remarkably well at the moment.  But because of the endless sea of bureaucracy we have to wade through just to secure basic support for our son.  Because there is only so much you can fight before your knees start to buckle and the waves start lapping over your head.  Talking to others who fight those same battles helps. Just being around people who get it, having a laugh over a glass of wine (no straws involved, promise), talking it through and getting advice.  It helped.  It really helped.

So you see I was half right before.  Sometimes you really do need to go sit in the middle of a field.

There’s just no need to do it alone.

Camp Amazing is a voluntary funded charity.  To find out more about them, see their Facebook page here.

Tuesday, 15 July 2014

Musings of a Cheese and Ham Sandwich

Perspective is an overused word in my little world at the moment.  Admittedly, mostly by me.  But it’s an unfailingly relevant one when you have a disabled child with an uncertain future.  I mean, of course the world shifts to a new degree of perspective.  Getting stuck on a non moving train is really not justification for the phrase, ‘worst day ever.’  Spilling coffee down my white top is no longer an event of biblical proportions.  The thought of driving through Central London in rush hour no longer breaks me out in a cold sweat (sh*t scary got somewhat redefined around 2012). 

But where this becomes a real challenge is in relating to other people who don’t quite share your cosmological viewpoint.  (yeah, I know, I went a bit GSCE philosophy there). Personally, my view on this is particularly skewed as Little J is an only child.  But I often need to give my life-axis a quick shove and re-align it.  Because it is not tracking the same line as the vast majority of people I speak to.  I need to be able to relate to people for who SATs are important exams for small people, not oxygen saturation levels and sensory development means those fun baby classes with ribbons and stuff, not the touch-my-hands-again-and-it’ll-be-the-last-thing-you-do stare of a child with sensory processing difficulties.  But, I have made myself a promise not to let that isolate me, or to stop caring about the things that others do.  I admit to sometimes being a work in progress – but don’t give up on me quite yet.

That said, there is one environment where my perspective really struggles to fit. I have realised that coffee shops are like a parenting sociology experiment.  They are essentially a safe haven with caffeine filled rewards for general survival.  The one place where children are totally allowed, but they cannot partake in the main attraction. And so you see all sorts of parents in this envirmonment, the showcasing parent talking to their child at top volume, the embarrassed parent (keeping a good distance from their child who is poking their finger in a neighbouring table’s panini), the exhausted caffeine dependent new parent in the corner who just wants to be invisible.  It makes for an interesting people watching experience.

There was one recent coffee shop experience that really brought home my differing sense of perspective and forced me to keep it in check.  That day, the competitive post school crowd we out in force.  We are talking the type of parents who favour a top volume ‘so what group is your son in for maths again?’ (with a fearful look that it might be higher than the bored offspring sat next to them who is currently pouring the contents of sugar packets onto the table and couldn’t care less about algebra.)  Quickly followed by some exam related comment or a wider statement about the state of schools in the area (child now licking the table).  Whilst my perspective axis gets wobbly listening to these things, I want to be clear that I am not judging.  I have no idea what kind of parent I would be if Little J was not…well, the complex boy I know and love.  Who knows what things I would have said or what would have mattered to me.  But, as things stand, I’m coming firmly down on the side of the kids.   You enjoy your moment of saccharine filled freedom before someone shoves a pen in your hand or sellotapes you to a piano.

On this particular day, it was the words of one of the littlest members of this group that got me thinking.  There is something about speaking to a child around Little Js age with adult terminology that I don’t really get. But on this occasion it got a response that was delivered with perfect unintentional deadpan.

The conversation went like this:

Mother: 'Darling, do you want a croque monsieur?'

Small child:  'Mummy…It’s a cheese and ham sandwich.'
I couldn’t help laugh at his extremely valid point.  But it also got me thinking. Looking at the mother in her gorgeous heels and checking her phone for e-mails.  I just felt a bit.  Well…cheese and ham sandwich.

How about just a cheese sandwich?
Don’t get me wrong, I have zero delusions of grandeur.  I am far more frothy milk than babycinno and have no desire to be anything else. But ambition, achievement…they are things that I am struggling to find a space for in life. I know that every mother has the post baby ergh phase.  The one where you realise that your own dreams are well and truly on hold.  It doesn’t matter what they are.  It could be work, exercise, going out with friends…it’s all put to one side for now.  And sometimes there is that little pang of want.

Only here’s the thing when your child has incredibly complex needs.  It’s not put to one side for now.  It’s put to one side for the long run.
Now I don’t blame you if you are reading this and muttering ‘selfish <insert word of choice>’. So I want to be clear, this isn’t a whinge, it’s just our new normal (I don’t blame you if you want to punch me in the face a little for this post though.…its ok, I kinda do too).  

Let me be clear that I would happily give up every single thing I have for my son.  He is the biggest, brightest, part of the tapestry that makes up our lives. 

But that brightness can’t be fully appreciated without a wider context.  There have to be other threads that run through it.  Threads that intertwine and create a larger picture.  It is their subtle shades that creates the contrast.  They highlight the central part, the most important part.

And finding those threads, identifying what those threads are and how to bring them together is a surprisingly challenging task.

In thinking about all of this, I came to a realisation.  I thought I had reached a degree of acceptance over the last two years.  I haven’t.  I accept my lovely boy for all that he is.  I have always made a conscious decision to do this.  To not be sad.  He is fabulous.  He always will be fabulous.  No matter where this journey takes us.  But along the way I forgot to do something.  I forgot to accept me.

You see, I am different.  Well, no I’m not.  But what I thought was my eventual destination is different.  I am never going to be a sandwich of the bubbly cheese variety.  No garnish here.  Yes, yes, you can tell me anything possible as much as you want, but…seriously.  All of the plans I had are shelved.  And getting pretty dusty.   I’m not talking the big stuff.  Yes, of course that is there too.  My career is limited.  I want to believe that all doors are open, but really.  I can’t change the care and social system. I don’t think we will ever have a reliable level of care to enable me to work proper hours.  I can be honest about that, I am open about that.  I couldn’t realistically aspire to any degree of seniority, even in the long term future.  There are no glass ceilings here.  They are the fully visible metal smack-you-in-the-head kind.

But it is so much more than that. I feel my social life change and friends slowly slip away as I fail to show up to yet another event. I used to exercise regularly.  A rarity now.  I feel my fitness and health tailing off.  I used to think that we would eventually get to where we needed to be financially, move to the house we wanted.  Not going to happen.  I used to think that Little J would have siblings in his life.  Not without a diagnosis.  Even those crazy little aspirations that were in the corner of my mind.  That country we always said we would visit ‘one day’.  Well even if we were to eventually find the money, they had better have wheelchair access, an adequate medical system and a flight that isn’t too long.

You see, I can’t have any long term goals.  Everything is in constant flux.

For someone who is a borderline control freak likes to plan, that’s a strange place to be.   And it’s often a challenging place to be.  I need goals in my life that don’t revolve around Little J.  Not just for me, for him.  It simply isn’t healthy for all my objectives in life to be tied to him (he firmly agrees - he remembers the physio spreadsheets).

So I have come to realise, that part of the problem is, well…me.  I need to stop trying to create a tapestry in the wrong frame.  I’m not giving up on my dreams, but they need to shift a little….the threads need to get a bit shorter or they will never fit.  I will be eternally frustrated as I try to reach the impossible. There will be a perpetual undercurrent of failure.

I don’t actually have any answers to all of this.  I haven’t figured out what those goals are.  I can’t quite work out where I am trying to get to – there is no plan.  But, for now, I am determined to take a tiny step.  To make time for something.  Just one thing, every few months that is a little achievement just for me.   For now, I have ‘Photography for Dummies’ on order.  And I am going to read it and learn from it (don’t actually have a camera yet, but hey, details).  Even if it means that we drop that third round of therapy on a Wednesday afternoon and Little J gets a bit of (ssh) CBeebies instead.  Because, you see, he’s at his happiest when I am at mine.  He doesn’t need me to be the best, or hit the big achievements.  He just needs me to be happy, right now.

And so, that was my momentary musing in the middle of the world’s most competitive coffee shop.  And it led me to realise what I need to do.

Because when that little boy turned to his mother and offered up his observation on that lovely looking French sandwich…he didn’t do it with derision.  He did it with a smile.

Because right now, a cheese and ham sandwich is all he really needs.

Thursday, 22 May 2014

The Gene Genie

Ethics and genetics.  Genetics and ethics.  Either way it’s not one to try and say after a glass or two.  Although it may make it easier to get some sense from it all and come to a conclusion (ok, the conclusion may be ‘I need more wine’…but still).

Since our fun little genetic conundrum came into our lives, I have become increasingly aware of the enormous strides that have been made in genetics in recent years.  After all, it was only in 2001 that the Human Genome Project released a working draft of the human genome.  A route map of who we are.  Last month we had another condition ruled out for Little J.  The genetic mutation in question was only discovered in late 2011…in Little J’s own lifetime.  Genetic discoveries are coming thick and fast.  And undiagnosed children are playing no small part in that.

'Whatevers ...I see no features in common.  I'm off 
to change the world with my eco thrash metal band'
Like many other undiagnosed families, we are part of a whole exome sequencing research project.  I know, I know.  That’s a pretty long and dry definition isn’t it…basically the fabulous gene genie (who is probably a researcher in a white coat, but I like the idea that they wear sparkly stuff and go ‘tad ah’ when they magic up an answer with their mystical powers) is going to look at everything with a reeeaaally good microscope.  They aim to map Little J’s DNA and attempt to uncover what little quirk (nicer word than ‘mutation’, which makes me think of adolescent sewer dwelling turtles) has caused Little J’s unique presentation.  Mine and my husband’s DNA will also be looked at as part of this process. There is a chance that this could uncover a change to an unexpected gene.  Or it could just come up blank, only time will tell.  A very, very long time if you are wondering how long this takes.

It isn’t the first research study we have been on, in fact it is the forth.  We have been lucky enough to fit the criteria for research projects looking for specific obscure genes and those testing for ‘panels’ of genes which are known to cause certain symptoms.  As part of this we have filled in numerous pieces of paper.  The ones you skim and sign, because you know it would have to say, ‘by participating in this study you agree to bring fresh coffee and donuts to the research team every morning for the duration of your child’s involvement,’ for you to even consider not squiggling your name at the bottom.  And even then, on balance, you would still sign it (sshh…don’t tell them that).    

Only, the first time I did my cursory skim read of one of these agreements I found myself having a little momentary strop.  My inner teenager did a ‘humft’ and I had to restrain it from a hair flick and an eye roll.  Because it was desperate to shout the adolescent mantra, ‘But that’s just not fair!

You see my eye had caught one specific clause that I now know is a subject of ethical debate in the genetics world.  It is to do with ‘by-products’ of research, or ‘incidental findings’.  It states that if, in the process of investigating Little J’s genes, something else is found that is ‘not relevant’ to his symptoms - be it another unrelated condition or a gene that puts him or us at greater risk of a certain disease; we will not be told. Even if it is a devastating revelation that could ricochet throughout our entire family or affect future children; there is absolutely no requirement to tell us if it is a separate condition from the one they are looking for.

At first this all seemed very odd to me.  I mean, really?  You go to all that hard work, you do all that research, you stumble across something and what? You just pop the lid back on that can of worms and pretend you didn’t see it?   Come on gene genie.  I’ll buy you an even sparklier outfit if you promise to tell us everything.  I’m talking rhinestones here.  Think Cher.  In Vegas.

Most of all, this initially left me..well..perplexed.  It seemed somewhat at odds with medical research.  If the main aim is to improve outcomes for patients, then surely knowledge is power?  But then I started reading.  And I very quickly realised that my inner teenager was fulfilling the stereotype to the absolute max.  Because it doesn’t always recognise when decisions are being made for its own good.

What really highlighted the complexities of this issue to me was a documentary about genetic testing from the United States.  It featured a young lady who had received the devastating news that she carried the genetic duplication responsible for Huntington’s Disease.  Huntington’s is a severe, progressive condition with symptoms commonly appearing in late thirties/early forties.  She was markedly younger than this and symptom free.  But knowledge of her future had a profound effect on her day to day life.  And how could it not?  Imagine the impact it would have on your relationship to know that one day your partner would become your carer.  She was dealing with her situation admirably and with immense strength.  But watching her speak opened up the question for me, ‘would I really want to know?

It’s one thing to seek an answer to an anomaly, particularly if it could aid treatment.  To try and diagnose a child.  But when you start pulling apart DNA to see what’s in there, you may not like what pokes it’s head out.  Let’s take a common one, dementia and a well known cause of dementia, Alzheimers. To my surprise when reading about this, there are now a number of genetic mutations that have been discovered which are thought to cause early and late onset Alzheimers.  They only account for some cases, but still….what a discovery.  I had no idea this had been found.

This then got me thinking.  Right now, my DNA, my husband’s DNA and my sons DNA are sat in a lab being examined.  If one of those mutations was found.  And we were told.  What would it mean for us? Practically, emotionally, even financially.  I want to say it would cause me to become informed, ready and empowered by knowledge.  But I’m a big fat liar.  I would be terrified. As a carer with immense responsibility for another person, the fear of becoming incapable haunts me already.  And whilst I may be getting a bit more zealous with the face cream these days, at thirty two years old, I am pretty young in the grand scheme of life.  Yet..with one piece of information I could spend every day worrying about something that could take fifty years to manifest.

As time and technology move forward, who knows what other conditions could be linked back to genetics or what further genes could be found. Sticking with dementia as an example, when you consider that one in three people over 65 develop dementia, then imagine full exome sequencing becoming more widely available, perhaps even privately available (as it is in some countries already).  Suddenly an ethical question becomes a full blown dilemma.  And I can see why hard and fast rules are being put in place now.

But the water becomes far muddier when you consider genetics and preventative action. There has been widespread media coverage around some of the genes linked to breast cancer, with some genes likely to lead to an 80% increased risk of developing breast or ovarian cancer.  This knowledge gives people the choice to opt for preventative surgery.  An incredibly hard choice, but a choice non the less.  Now if you imagine that a genetic mutation linked to a condition where preventative measures were possible was stumbled upon during full exome sequencing.  Well now this ethical pond is bordering on opaque.

Would I want to know about a preventable condition like this, no matter what steps I may need to take?  Absolutely. But then how do you define what falls in the category of 'preventable'?  What about potential future parents who are 'carriers' of genetic conditions?  You could argue that the conditions involved would be 'preventable', by not having children, or in some cases with IVF intervention (I think - that's a bit over my head on the science front to be honest).  But then what conditions are deemed serious enough for people to be told about?  Life limiting conditions?  All genetic conditions?  What message does that send about disability in our society? When does technology unwittingly become a catalyst for <whisper> eugenics?  But that’s just too enormous a debate, so I’m going to dip my toe in with that sentence and then run away fast before a big fish gives it a nip. 

All in all, I really don’t know where I stand on this issue.   Human nature demands, craves knowledge.  The thought of somebody else potentially having information about me that they won’t share just feels a bit mean.  However, curiosity doesn’t always end well (ask the cat).  And on this one I think, on balance, I need to push back against my instincts.  If there needs to be a blanket rule, then I think my opinion can only go one way.  Right now, somewhere, there is a vial of blood with my name on it, just waiting to be investigated.  A key to my present, and potentially my future. But for me, personally…I think the gene genie needs to lock away any ‘incidental’ findings in a big old room (I’m thinking like the final scene of ‘Raiders of the Lost Ark’ here.....there’s a TINY chance I think labs are more exciting than they are). No matter how much I think I may 'want' to know something, I have to accept that I may not be capable of knowing it and living the life that I want to.

My inner teenager will just need to calm down, stop foot stamping and accept that 'if' something else is found, they just don’t get to know.

It’s ok.  You’ll understand when you’re older.

Tuesday, 6 May 2014

Time to Stand Up and Speak Out!

I tend to have a touch of the Dollys about me first thing in the morning (without the fabulousness and with added sleep deprivation).  I tumble out of bed and stumble to the kitchen, pour myself a cup of ambition (well, a weak one), yawn and stretch and try to come to life.  Working nine to f….whenever I get interrupted.

You see, my working life has been complicated lately by the added presence of a small person.  In fact, he may be a record breaking small person, managing to get himself barred from an establishment at the tender age of two years and nine months.

It has now been five weeks since Little J was, for all practical purposes ‘excluded’ from his nursery.  Now no one would use that language to describe this event, but he is no longer allowed to attend so, well, you say ‘tomato’…

What did he do to achieve this feat?  Stealing playdough from the big kids? Running a gingerbread man protection racket?  Sneaking off for extra milk behind the bike shed?  No actually.  He was just ‘too’ disabled (I’ve confiscated his ciggies, but they still won’t have him back..)

Now whilst I jest about exclusion, I am not trying to apportion blame to the nursery.  Quite simply, he was in the wrong setting, with the wrong support in place - and that is a wider issue.  Even with a 1:1 and a Statement of Educational Need, apparently his needs are just too high and he now breeches the nursery’s insurance policy.  It does now look like we will be getting a place at a special needs setting (where he should have been from the start in my mind), but it has been a complex road to get there.  So now I have my social, gorgeous boy back at home, clambering over me and clinging onto my neck for a large portion of the day.  Which is lovely in many ways.  Except for one thing…..I am trying to cling onto a job.

I'm totally on it..
I already work a mere handful of hours per week due to a complete lack of childcare and now, it is only thanks to the immense patience and grace of my employers that I have a job at all.  Because I have no childcare, yet again. 

And what response has there been from statutory services? The services whose apathetic response to our initial efforts to get him into the right setting have led us here.  Surely they were rallying around, immediately calling meetings, desperately trying to ensure that I did not lose a second job due to lack of childcare?  Surely they recognised the message that I have been hammering home at every single meeting we have had. The one that tells them that helping me to work SAVES THEM MONEY!  No actually. 

I’m not saying people weren’t empathetic, but if I could sum up the content of most of the conversations I have had in the last few weeks it would look something like this ‘Oh, that’s a bit pants isn’t it? Well, yes something should be done I guess.  What’s that? practical solutions you say? Well, erm, probably best to just do some more waiting.’ <disclaimer: Not a direct transcript. The word pants was not used. Please don’t sue me.>

Why so little concern? Well, because it’s not really anyone’s job to help me have a job.  Despite all the headlines about removing people from the benefits system and getting them into work, parents of disabled children are not protected by any national law.  In fact, working parents are a distinct oddity.  Public sector professionals don’t really know what to do with me. They look all shifty and nervous when I start bombarding them with work related questions.  Because that wasn’t in the training.  They don’t know the answers.  Questions about the benefits system are a different matter. They are all trained up on that.  But working.  No, we don’t do that.

And why should they know what to say?  Because we are an oddity.  As a working mother to a disabled child I am one of the lucky few.

Currently only 16% of mothers of disabled children work at all, against 61% of all mothers. Oh, and let’s not forget the fact that 85% of mothers of disabled children want to work.  So, Mr Coalition (ok, that was a bit sexist – So, unknown gender person from the Coalition)…you want people off benefits, stimulating the economy..well HEEELLLOOOO.

Now, if you have read my blog before, you may be eye rolling right about now.  Actually, I probably lost you around the statistics and you are off having a cuppa and watching Location, Location, Location.  I know, I know.  We’ve been here before.  I’ve got all political and blogged on this one only a couple of months ago.   So why are we back here again?

Well, because something exciting is happening.  Firstly, I am feeling all campaigny and dusting off my metaphorical placard.  Because I have come to realise just how many other strong, dedicated and determined parents are in exactly the same boat as we are.   Shorty after I posted my open letter to Michael Gove, I became aware of more and more bloggers writing about the same thing.  Then even more posts began to appear.  The #WeWork hashtag started appearing on Twitter, the acronym WMODC (working mothers of disabled children) started being used.  Suddenly, we were a group, not lone voices.  You can see a round up of some of these great blog posts, hosted by the fantastic Premmeditations here.

The second reason that I am bristling with hope at the moment is the announcement that there will be a Parliamentary Inquiry into Childcare Provision for Disabled Children.  It will be led by Conservative MP Robert Buckland and Labour MP Pat Glass.  You can find more information about the inqury here.  And if you are a parent affected by these issues, there is a survey to fill out here.

This is our chance to speak up and be heard.  Our chance to bring about change.  So let’s make it count.  If you are affected by these issues than please get involved, fill out the survey.  Let’s make the most of this opportunity.  Let’s blog, tweet, perhaps even get all retro with a bit of letter writing.  Let’s make sure that the next generation of parents stepping into our already challenging shoes aren’t faced by the same frustration, financial fears and inequality.

And if you are not personally affected, they you can still show your support by sharing what is being said and raising awareness. If you are wondering if this really matters, let me hit you with one more statistic.  On average, it costs three times as much to raise a disabled child than a child with no disabilities.  I want you to imagine what that means for the average family.  Now imagine that half their income was wiped out overnight. 

And to those leading the inquiry, I ask just one thing.  At the end of my last post about working with a disabled child I asked that you hear us.  Now I ask for one step more.

Listen to us.  

Thursday, 24 April 2014

Still at the Fair: Undiagnosed Children's Day 2014

‘Where you are right now, you don’t want a diagnosis.  Because then you will be condemned to it.’

I remember those words clearly.  Said by a well meaning doctor, two years ago.  I remember his slightly greying moustache and gentle tone of voice. I remember that it was dark outside and he was on the day shift. I remember the little tempa dot thermometer that I had picked up from the bedside.  I remember spinning it around and around between my fingers, as if the speed of the motion could undo the reality of his words.  I remember that kind, well meaning doctor very well indeed.

I remember that I didn’t agree with him. 

And I still don’t. 

Please don’t misinterpret me.  We are lucky.  Very, very lucky.  Some of the conditions that my little boy has been tested for have been beyond heartbreaking.  I have read potential symptom lists and gasped at words that should never, ever appear next to each other (‘paediatric’ and ‘dementia’ being two prime examples).  Thankfully he tested negative, again and again.  Those options were ruled out.  Being undiagnosed in this sense is, and remains a blessing.  But… we ‘not want’ a diagnosis?  In our case, no.  Knowing the truth won’t change the truth. We need a diagnosis.  We need a prognosis.  To not have one puts us on an uncontrollable fairground ride that shoots to new highs and then drops out of nowhere, in a matter of moments to frightening lows.

If you have read some of the posts in this blog you will see that consistency isn’t a key feature.  In fact viewing some of my posts back to back reads like two halves of my psyche having a bit of a domestic ‘Its not progressive, whoop, he’s doing really well.’… ‘No, wait, he’s regressing again.  Things are looking bleak.’… ‘Oh, hang on, he’s moving forward again, bigger whoop.’  You see.  To be honest.  It really depends on the week.  The day.  Sometimes even the hour.  Even our doctors disagree.  I come out of some appointments full of positivity, convinced that things will improve and the world will all make sense again.  I come out of others crushed. Emotionally beaten.  Mentally slapped by statistics.  Broken by words like ‘hospice.’

Why am I talking about this now?  Why is the woman who hides behind false names and photos of toys suddenly being so upfront? 

Because tomorrow is Undiganosed Children’s Day.   Because when this day comes around it reminds me that so few people realise that undiagnosed children even exist.  Because so often, without a diagnosis, we fall straight through the cracks of a system that is focused on ‘care pathways’ and ‘outcomes’.  Because we are not a tiny minority, but thousands upon thousands of families desperate for support.  Because we need to be heard in order to demonstrate our reality and bring about change.

An actual image? The toys are gonna be maaad.

Because being honest matters.  It really matters.

I learned that last year.  The post that I wrote then has sat at the top of my ‘popular post’ reel ever since.  It was the first time I was truly open and upfront.  The post that I paused before sharing.  The one that made me catch my breath and hover over the ‘publish’ button.  So it’s time to get honest again.  To try and explain why it matters.  Why is it such a big deal to be ‘undiagnosed?’ 

Well, actually..sometimes it isn’t.  But, as we have found in the last few months, often ‘undiagnosed’ is a cruel path to tread. You see, right now, our fairground ride isn’t going so well.  We’re sat tentatively at the edge of a drop hoping that, against all expectations, someone flicks the controls and drags us backwards to safety.

Little J is currently testing our medical professionals.  From an acute perspective, he is actually very stable.  There has been no big ‘crisis’.  No single terrifying moment.  Nothing that could be fixed by a responding medical team. No, it’s more of a slow, frustrating change.  The kind that local hospitals can do nothing about.  His neurological symptoms are increasing and he is developmentally regressing. Is it just a case of finding the right medication to stop the symptoms?  Possibly.  Is this our new normal? Maybe.  Are things going to get worse? Depends on who you ask to be honest.  The optimistic doctor, the pessimistic doctor.  We’ve heard them all.  Then the indifferent doctor who, ‘really wouldn’t like to prognosticate.’ (me either – sounds painful). 

And us?  Well, we wait.  This is mostly our undiagnosed life.  Not the big scary drops or the amazing highs when things improve.  It is the in between times. At home, waiting.  Thinking.  And waiting.  And thinking.  And hoping.  And waiting some more.

And we have done this for over two years. 

With no diagnosis there is no planning.  No concept of the future.  Just uncertainty.

I have heard it said many times that there is a need to grieve when you realise that your child has profound disabilities.  You have to grieve for the child you thought you would have and the life that you expected for them.  I understand this.  I adore my boy.  I accept him for all that he is.  But I have had to let go of a vision of his future.  It’s not that simple though, the goalposts keep moving.  As time goes on I have to let go of another vision of his future.  Then another.  Then another.  Then another.

Denial – Anger – Bargaining – Depression – Acceptance.   The widely accepted process of grieving.  

I have certainly found myself following this process at times.  Epic levels of early denial as I refused disability equipment from our previous fantastic local authority (MAJOR error – it took almost a year to be assessed in our new borough).  Anger as I ranted to anyone who would listen about failings in the healthcare system (That was a fun stage wasn’t it?).  Bargaining as I pleaded with the unknown.  Begged to take his place.  Then the hard times when we're emotionally tested.  And acceptance…well, I’ve almost got there.  So many times.  But then things have changed.  Our eventual positivity and sunny outlook on ever changing levels of disability have been smashed on numerous occasions by fears of a life limiting condition.  How can you even begin to reach an acceptance of the future, when you have absolutely no idea what you are accepting?

I could reel off clich├ęs about ‘living for the moment’, but you see, without a diagnosis, it just isn’t that simple.  There is a constant guilt and a fear of regrets.  I don’t know if we should be working harder than ever before, desperately trying to get the money we need to move our disabled child, who will become a disabled adult, to an appropriate adapted house.  Or should we be spending every precious second with our boy, spending whatever money we have taking him to fun, beautiful places?  Should I be pushing him through the daily therapy that he hates because it will improve his long term developmental outcomes?  Or should I just be giving him the most fun a child can ever have – filled with nothing but cuddles and the things he loves.  Not tears, uncomfortable physio shoes and standing frames.

I am trying to find a cautious balance.  But without answers, there will always be a fear of getting it wrong.

Then there is the worry.  The insanity of the worry – coming from each side of that ever arguing psyche.  The part that leaves me lying awake at night wondering what will happen when we are too old to care for him.  The part that knows that without a diagnosis, he is unlikely to have any siblings keeping an eye on him. The part that pictures him under the care of the state and wants to scream.  Then, within minutes comes the crushing, devastating fear of loss.  This is the reality of being undiagnosed. 

I know that many families may not feel this way – perhaps better not to know.  But for me personally, I need to know.  I need to plan in order to make sure that we do things right.  To make sure that we put the right things in place. To ensure that we do everything the best that we possibly can.

Because he deserves the best.

And do you know what helps him to get the best?  This. 

The fact that I can openly talk about life without a diagnosis.  Order those thoughts.  Connect with others.  Without the support and ongoing encouragement of other undiagnosed families there is absolutely no way I would be brave enough to blog (I still feel a little close to vomiting each time I press publish).  Without their advice and support, I may have become consumed with fear and sadness.  But I’m not.

Depsite all of the things I have just said.  I’m really, really not. 

Because I am able to see the endless beauty in what we have.  Because, through the advice and support of others I am less scared and more able to just be.  Because I know we are lucky.  Whatever road we end up walking, we were blessed with a happy, beautiful wonderful boy.  We are lucky every single day. 

And because I see so many others in similar situations and I know that they, like us, are not consumed by sadness, but are able to celebrate all that their chid is.  And be happy.

On days like tomorrow, we are able to stand together and ask the world to see us.  Because we need to be seen. And understood.  We need to keep being open, keep being honest and hope that we can bring about change and practical intervention for families who need it. The intervention that needs to be there and should be there.  

Because every time we speak openly we raise awareness.  We let people know that 50% of children who go through NHS testing emerge with no diagnosis.  When we speak up we let other families know that we are here. 

Because right now someone may be reading this and saying the words that I said when we first found SWAN UK (Syndromes Without a Name).  The words that I know some of the people I am now privileged to call friends once said.

‘We thought we were the only ones’.

You can watch the fabulous children of SWAN UK in the Undiagnosed Children’s Day 2014 video here.