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…..do 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 clichés 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.

Saturday, 22 March 2014

The London Streets


I wish I was there already. 


Home.

No wires.  No nurses every two hours.  No attempting to fill in minuscule fridge labels with an enormous marker pen. No inexplicably bleeping machines all night.  No bleeping anger towards inanimate objects of the bleeping variety. 

My night off.  

A bit of Friday night telly.  Maybe a glass of wine.  Sleep.  Oh that’d be nice.

I wish I was there.  On my sofa, glass in hand.

A long way to go yet though.  Tube, train, taxi.  Then finally home.  I should call when I’m on the train.  No.  Don’t call.  It’s patronising.  He’ll ring if something’s wrong.  Just stop.  Forget.  Just for the next few hours.

Wow.  It’s busy here.  I forget.  Being in there.  It’s not even a long admission this time and I’m already not used to lots of people.  This is central London on a Friday night.  Stilettos, suits and clip-cloppy man heels everywhere.  The post work crowd have been out for a while and they’re in full flow now.  Spilling out of faux oak bars, clinking and talking over each other.

I remember those days.  I’ve been out round here before. Fun nights of drinks, friends and chatter.  I probably never noticed either.  The enormous shadow. The overwhelming presence of a huge children’s hospital.  I never wondered what was going on behind those sliding doors.  I never saw them.  The people scattered in shadows.  Smoking cigarettes whilst staring at the ground.  Pacing and whispering into their mobiles.  I never wondered why they were there.  Now they seem so present.

God, that girl outside the pub is absolutely hammered.  It’s not even that late.  Is she hugging him or using him to stay upright?  Oh…too late.

Right.  Tube station.  Start weaving and get through quickly or you’re not going to make the overground. 

I wish I was there already. I’m so tired.

Yeeesss.  Nice speedy manouvering. And a seat, result.  Sit down. 

Ok.  This needs to stop. This sick stomach turny feeling.  Enough now.  Think about home.  And sleep.  Yeah, sleep.  I guess this is nature really.  That’s why I feel like this.  It’s David Attenborough territory. Darwin even.  I’m going to be far away from my little boy and my primal self doesn’t like it.  It can’t protect him from a tiger.  Tiger? Where did my exotic cave-self live? Certainly not the commuter belt. Oh, I suppose there were sabre tooth tigers.   Or were they just around with the dinosaurs?  Mind you were we around with the dinosaurs?  Should’ve paid more attention in history.

I wonder what size dinosaur I could take in a fight?  If it like reeeeaaaaallly came down to it.  Probably something pretty small.  No spikes.

Wow these girls are loud.  Do they not realise the volume? The armrest of the seat does not constitute an invisible soundproof wall. I really don’t need to know about her history with Dave from the Milton Keynes office. I would never have a drunken conversation…this…..loud…..Would I? Nah.  Go with no and don’t search memory banks too hard.

Four more stops.  Then train. Taxi. Home. 

Wish I was there now. Walking through the door.  Clambering for the lights, reaching in the dark.  I’ll be cold.  No one there all day.  Empty.

They are just getting louder now.  The shrieky laugh is a bit much.  Oh god, I’ve become one of them.  A kill joy whinger.  There’s a spare paper there.  I need to have a read of that and get over myself.  I wonder how many people have read this one paper today.  And statistically how many wash their hands when they go to the toilet?  Why.  Why go there? Read it and stop over thinking.

Home soon. 

I won’t get long.  Just an hour or so before sleep.  Need to be up early.  Ready to get back.  That’s enough time to get warm and cosy.  Get distracted by the TV.  I’ll be quiet there.  Very quiet.

Just me.

It’ll be nice to be home.  To head upstairs to my own bed.   And I’ll try not to linger by that door.

God these girls are actually getting louder.  And practically sitting on my lap.  I like her shoes though...Pretty.  Just one more stop.

Yep, when I go to bed I’ll go straight past it. Breeze past his room. The one room that should never feel so empty.   I won’t do it.  Not this time.  Not again. 

I won’t let that absence cause the fear to wrap round me. I won’t be choked by the ‘what if?’  The dreaded ‘what if?’ I won’t let those scenarios start running.  I won’t look at the soft toys waiting for him on his bed.  The traces of his presence.

I won’t imagine where he is and feel far too far away.  I won’t long for the reassuring beeping and the soft sound of breathing. I won’t wish to be the one to hold him tightly when the nurse needs to wake him and the tears start to fall.  I won’t wish I could reach out and feel the comforting rise and fall of his little chest.  I won’t need that reassurance. I won’t spend my time away waiting to return. 

I won’t spend my time wishing. 

Though I already do.

I wish I was there. 
 



Tuesday, 4 March 2014

Dear Mr Gove (& assorted pals)


Dear Mr Gove, no too formal.  Michael, no too weird.  It’s like calling your teacher by their first name.  I’ll go with Mr G.

Mr G.  I am going to start with a bit of an apology for addressing this to you, as I am not entirely sure that it actually rests with you.  However, when writing to other politicians my letters have ended up being forwarded to your department.  Sorry – you’ve been nominated.  They dare you to deal with the crazy working mum lady.

Yes, we’ve exchanged some correspondence via my MP.  Don’t worry, I know you are a tad busy and it is highly unlikely you will have actually read them.  I know that my parliamentary pen-pal is most likely Eddie the work experience boy with your signature on the bottom.  It’s ok - I get it.  Politicians can't spend all day letter writing. (Although if you want some feedback to Eton on Eddie I’d go with a B-.  Excellent use of embossed letterhead, exemplary use of accountability dodging legal acts, but major failure to address the actual question).

You see I have a bit of an issue.  An issue that can only be fixed by people like yourself.  I am mother to a 2 ½ year old with complex needs, both medical and developmental.  He is very complicated.  He is also very fabulous.  He is happy, social and totally digs nursery. 

I am a working mother.  I have to be.  And I want to be.  I worked long and hard to get a career that I care about.  Whilst I will always put my son first, I know that in my case, being a working parent enables me to be a better parent. It enables me to give my son financial stability and a plan for the future.  It enables me to have time away from the immense responsibility of being a ‘carer’.  It gives me a chance to miss him and reminds me how very precious our time together is.   But despite an epic battle to rival Waterloo (if Waterloo took place over WH Smith stationary) I have had to leave my job.  Why?  Because there was absolutely zero affordable childcare option available to me, even on a three day per week basis.  This is purely because of my son’s disabilities. Ouch.

Now, Mr G, I have to confess that I have been a tad perplexed by this lack of governmental support for parents like myself.  You see, the cost to the state to enable me to work is pretty minimal.  The cost to the state of me not working is a consequential landslide that will turn to an avalanche as I lose my career, get older and fall further from employment.  You see, my inability to work means an inability to pay taxes.  I no longer contribute to the system.  I have no choice but to claim Carer’s Allowance – at a cost to the taxpayer.  I will not be inputting into the new government pension scheme.  My retirement will come – at a cost to the tax payer.  Our house has been declared un-adaptable for wheelchair use.  At the moment, we cannot pay the thousands of pounds needed to cover stamp duty and solicitors costs to move somewhere appropriate.  The official advice from our local authority? Join the council housing register – all together now…

With all this in mind, recent headlines have left me a little erm, perplexed (not throwing the newspaper out the window, that would just be childish.)  It seems everywhere I turn there are tales of you and your pals brining in new plans to increase childcare and bring more people into the workforce.  The welfare state is apparently bursting at the seams and action must be taken!  Yet myself and other parents like me are jumping up and down, hands in the air begging you to let us work.  Why can’t you see us?  Why won’t you see us?  Why are you opposing your own party policies by pushing us deeper into the benefits system?  It just makes no sense.   And so I have decided there must be a reason.  There must be an economic or sociological reason why you have decided it is better that we don’t work.  I admit it’s been taxing, but I think I’ve narrowed it down to three:

1) You have decided that Social Services and the NHS aren’t busy enough.  If all these parent carers are allowed to work and become financially stable and lead a balanced life, it may reduce the number of emergency care requests or hospital admissions.  The streets could become filled with dejected public sector staff, traipsing across the roads, demanding to fill their time with things like extra training, or, even worse trying to improve the system. My god, the humanity.

2) You are deeply concerned about the impact of carers entering the workplace on the British tea industry.  You figure carers drink a lot of tea (all that being at home and lack of affordable heating).  It could be truly devastating.  The thought of Gaffer and Sydney moving into a squat with PG Tips monkey is too much to bear.

3) You and George O were having fun with numbers, when you got distracted by Boris trying out a pogo stick and accidentally deleted a zero from the ‘social care’ column.  It’s ok.  Excel can be tricky like that.  (hint – if you are struggling to find it again, check the column marked  ‘MP expenses’)

Now whilst all of these are excellent reasons, I am going to ask you to hear me out and have a re-think.  I want you to understand that I am not here cap in hand, claiming destitution.  Actually, I am very lucky that my husband has a good job that keeps a roof over our head.  But without my salary, meeting the huge additional costs of a disabled child, such as an unexpected requirement to move is incredibly difficult.  What I want you to understand is that this could happen to anyone.  No one expects to become a carer.  No one takes out a mortgage or rents a property and puts a ‘what if we have a disabled child and we lose half our income’ plan in place.  And when it happens – it’s tricky.

When my son was born, we had a plan.  I would take maternity leave, my son would go to nursery and I would return to work.   Only fate had other ideas.  At six months old our little boy became very unwell.  We were told he had a syndrome.  An unknown, potentially devastating genetic condition.  My employers were incredibly supportive.  Rather than demanding I returned or left, they put me onto a one year sabbatical period with the option to return part time.  Perfect.  During the course of that year our little boy because more medically stable.  He was ready for nursery.  I was ready to go back.  We needed me to go back.

I confess I was very naïve.  It really didn’t occur to me that I wouldn’t be able to work.  It was only at the last minute that the immensely frustrating reality became clear. You see, my son needs a 1:1 staff ratio in order to attend nursery. The cost of paying for a 1:1 on top of nursery fees pretty much exceeds my salary, as does a nanny.  The local authority do hold an ‘inclusion budget’ to pay for the additional staffing costs in exactly this type of situation.  But they would initially only agree to six hours per week.  This increased to fifteen hours, term time only (ten hours when stretched over holidays) thanks to a three month battle and the discovery of a legal loophole that could not be argued with.  We have no other childcare beyond this ten hours – none what so ever. We expect to pay nursery fees.  We are willing to pay nursery fees.  But the fees in our case are 2.5 times higher than for a child with no disabilities.

Ten hours per week.  Two afternoons.  I challenge anyone to maintain a career on those hours. And, before you give me a dismissive head nod and start talking about how we just need a ‘Statement of Educational Needs’ (Eddie’s been there already), you and I both know that a statement will not lead to an increase in hours until he reaches statutory school age.  And yes, we have one coming thank you.

I am incredibly lucky that I have found a role with a fantastic organisation for a few hours per week.  But jobs like this are incredibly hard to come by and simply not an option for a lot of people.  I also want you to understand that I am not saying that all parent carers should be expected to work – many absolutely need to be at home and they need the support of the system in a very different way.  But when there is a child who not only can attend nursery, but who gets a huge amount from it and a parent who has a job on the line, ‘tough luck’ isn’t good enough.

Now my reason for addressing you en mass rather than just you Mr G is two-fold.  Firstly I am more interested in party policy than personalities and I don’t particularly like aiming comments at one particular individual (ok, Collin Brewer was an exception).  But more importantly there is a startling absence of accountability when it comes to this issue.  Your office has passed me back to my local authority.  Only my local authority aren't budging and feel that it is a national issue.  And I have to say I am with them on this one.  To decide the childcare policy affecting one minority group on an area by area basis is, quite frankly, ludicrous.   If this was applied to all mainstream children there would be an outcry.  If children in Devon could attend nursery for fifteen hours, but children in Dorset could only attend for six.  Can you imagine?  You’d need to batten down the hatches, because there would be an angry sleep deprived nappy waving army headed your way (and that's one scaarrryy army).

Then there is the downright upsettingness of it all.  Yes, I know that’s not a word.  That’s how upset I am.  Why?  Because no one cares.  I have written to you, written to my local authority, written to the Head of Children’s Services, written to and met with my MP. ‘Not my problem’ is the order of business. No one is taking this forward.  No one gives a damn.  And that is very disheartening indeed.  It sends a very loud message to the disabled community.  And it’s not a positive one.

Even the toys are embarrassed for you on this one....
And why should we expect anything else?  Why, when we see images like the one that is currently doing the rounds on social media.  You know the one.  Yes you do.  The one of the House of Commons.  The one taken during the recent debate about the effect of welfare reforms on disabled people.  The one where, in what can only be described as an epic collective facepalm, hardly anyone bothered to show up.  This one. Then in what can only be described as an epic moment of genius, someone decided to splice this with an image of the House of Commons during the debate on MP pay rises.  The image where it is packed to the rafters.  Standing room only.  The contrast is..erm…stark.  Awkkkwaaard. 

I want to believe this isn’t really a reflection of the interest of politicians in social policy.  I want to believe that just out of shot there is a tweed clad assortment of politicians huddling round Vera the tea lady’s trolley due to a BOGOF on bacon butties.  I really want to believe that you all care.

You see, I’m not what you think.  I’m not bitter.  I’m not even that cynical (but give it time).  I am not someone who takes an instant dislike to anyone who has the word ‘politician’ on Linked In (do you use Linked In?  We should link up).  Acutally, I am quite the opposite.  I believe that policy can bring about change.  I believe that politicians do vitally important jobs.  Jobs led by democracy.  The thoughts and words of the people.  And the multiple blog posts I have read on this topic tell me I am not the only parent carer in this position.  So please.  All I am asking is one thing.  Hear us.

Because ‘that’s the way it is’ is simply not a justification.

‘There’s no budget’ is false economy.

‘It’s not my department’ is not an answer.

Because it’s just not right.

And if it’s the tea thing.  Fair play.

Thursday, 27 February 2014

The Best of the Little Things


A strange, disturbing and equally wondrous thing happened in our house yesterday.  My child was momentarily possessed by a demonic force hell bent upon chaos and destruction.  In fact, I’m fairly sure his head spun round a couple of times. I may have to start looking into holy water.  Alternately, there’s a teeny tiny chance that this was a tantrum.


And I frikin loved it. 


I loved the leg slamming, the infuriated ‘how DARE you’ face, the open mouthed anger wail.  The fact that this was all over a refusal to wear any trousers on a winter day.  I love the fact that if I had produced a pair of flimsy shorts and a sombrero he would’ve let me put them on him without question.  In fact, I just loved the fact that he was being an indignant little…….well, two year old.


You see, two year olds are irrational and troublesome little creatures.  They are easily angered and should be treated with caution at all times.  And that is what my little boy was doing.  Being two.

TWO.  Not another baby milestone that we should have hit over a year ago.  He was just being two.  He was telling me what he wanted.  He was demanding that I follow his rules, in his house.  He was telling me that I know jack about fashion and that these vile trousers from the only-use-when-haven’t-done-washing pile simply wouldn’t do AT ALL.  He was being a toddler.   And that takes us a little step closer to him being able to tell us what he wants, what he needs and how we can help him (most of the time, if it’s another fashion criticism he can forget it). 

This got me thinking about the little things.  The things that I thought were going to be terrible about parenthood.  Those niggly little things that you read about in books, or hear from exhausted parents.  The things that I was dreading with a two year old. And how, in fact, sometimes the worst of things turn out to be the best of things.


1) Mess:  

I admit it.  I have a minor touch of obsesiveness about mess.  I have to mentally categorise my house in order to accept the existence of strewn clothes or unstacked plates.  I have ‘mess zones’ and ‘tidy zones’.  Inside the cupboard – mess zone.  I can’t see it so I don’t care.  The porch – mess zone.  I had to strategically abandon this frontier area to save more populated rooms.  The bedroom….no. no. no. No mess here.  Don’t like unmade bed.  Don’t like clothes on floor.  Same goes for any part of the kitchen apart from the mess outpost that falls within the confines of the sink.  That started off as a tidy zone, but the gradual daily rebel uprising has proven hard to quash.  But…if you overload the bin so that food mess (Why ALWAYS yoghurt?) hits the kitchen floor, then prepare to feel the full force of my wrath.


Only here’s the thing about children.  They just don’t respect the zones.  They drag mess EVERYWHERE.  They have an inexplicable ability to be constantly covered in a sticky ectoplasm like substance that finds its way onto all surfaces.  They also have an unfathomable amount of stuff.  Plastic stuff that breeds and spawns new plastic stuff.  A plastic army worms its way into a room you aren’t expecting, guaranteeing that you will step on its smallest, sharpest edged soldier.

You don't wanna mess with this army....
So when I was pregnant, I was concerned about the mess explosion headed our way. I was ready for a food seeking, cupboard opening, toy obsessed toddler that would roam from room to room, smashing all items in its path like a sugar seeking Godzilla; dropping toys and crumbs in equal measure.

It didn’t happen. Instead I have a little boy with no independent mobility aside from rolling.  He won’t redecorate the walls with my lipstick, or re-design the carpet with finger paints.  Because he can’t.  Our mess is a different kind.  The kind that gets delivered by a rep from a mobility company who teaches you how to adjust your newest piece of offensively coloured equipment and hands you an allen key (which you toss into a bowl with the others whilst cursing the fact you didn’t do an engineering degree).

That was until now.  Little J has a new trick.  When being spoon-fed a bowl of non descript mush he has this telltale little look on his face.  A little smile, quickly hidden and a ‘oh yeah, just keep it coming’ mouth opening.  Only if you look closely, you will realise he isn’t swallowing.  Only you’ve looked too late.  There’s no stopping it now.  He then blows an enormous raspberry, splattering mush all over you and any surrounding surface. Then proceeds to laugh his little head off.  He is demonstrating anticipation, forward thinking and oral motor skills.  So who really cares that our white wall looks like a Jackson Pollock painting.  Pah…I’ll just declare it a mess zone.

2) Constant talking: 


'Mummy.  Mummy.  Mummy.  But mummy.  Why mummy? Why mummy?  Why? Why? Why does the bus have wheels? Why is water wet? Why does that man smell like cabbages?  What’s wine o’clock?'


This is what I expected.  And I admit, was slightly dreading from a toddler.  The inane nonstop talking.  The immense pressure of giving them the right answers and not royally screwing them up for life.  The moments when they get you with a question that you should know the answer to, but actually don’t have a clue about like, ‘where does lightening come from?’

Instead I got something else.  An awful heartbreaking silence.

The sound of a child who cannot speak.  Who cannot even babble.  Little J was getting there.  Last year he had transitioned from constant crying to a slight babble, there was a clear ‘dada’ there and emerging ‘mama’.  Then before Christmas he took a downward turn.  He began to have suspected seizures, up to fifty times a day.  And all of a sudden there was no babble, just crying.  His voice was gone.  Just gone. 

Now, a few months and a boat load of medications later, it is starting to come back.  The noise is becoming a constant feature in our house.  The strange babbly non sensical talk is free flowing.  And I love it.  LOVE IT.  I don’t ever want him to stop making noise.  Should it progress to words, which we pray it does, he can ask me every question there is and I will never object to the sound of his voice.  I even don’t mind his freaky whispered babble.  The one that he always seems to do when he is in bed at night and has scary lit up eyes over the video monitor.  The one that sounds a lot like Latin.  Um, yeah, I even like that one.  Really, it doesn’t freak me out at all.  (Though if it starts preceding the head spinning tantrums I may start asking some questions).

3)  Poo:  

Yep.  Poo.  I know, there’s no nicer way to put it, sorry.  I often try to think of another word when talking to doctors about the contents of Little Js nappy.  But I end up saying ‘bowel movement’ too slowly and it all becomes a bit weird.  I have learned that even the doctors say poo though.  Dr Ranj has a whole song….But, anyway, my point is that before I had Little J, I was deeply disturbed at the prospect of nappy duty.  I read how many they do in the early years with shock and disbelief. They produce HOW MANY?!? I seriously contemplated purchasing a face mask to help the process and then worried that my child would grow up with an irrational fear of surgeons.
 
At this point, I could never have imagined in a million years that a dirty nappy would elicit a ‘yeeeessss!’ from me…maybe even a high five.   I now have a very different perspective.  I have learned that the digestive system and low muscle tone don’t really get on very well.  Like many parents of medically complex children, we spend far too much time praying to the gods of poo, hoping that they will grace us with an offering today.  And when they do…well it’s high fives all round (& hand him to daddy immediately.)

4) General household destruction:  

‘So, what motivates him?’ Said the physio, whilst attempting to coax Little J into sitting from his position on the shiny padded mat. ‘Oh, that’s easy.’  I said, ‘electrical wires.’

The sudden passing of tumbleweeds suggested that she was looking for something like ‘toys’ or ‘food’.

But, you see, Little J has recently discovered the joy of danger seeking.  He is a nightmare.  If you are with him, he just hangs out nicely, does an occasional little roll about whilst watching Mr Tumble.  Step away for a millisecond and he develops the rolling ability of a military academy graduate, combined with the reflexes of a ninja.  He can spot, isolate and reach his target in record speed.  Think you can leave him safely near a small table with no sharp edges?  No no mummy, you will return to discover that I have added superhuman strength to my powers and I will mostly be found lying under it having lifted up one of the legs, which I am now inspecting for possible gingerbread man traces.

Worrying, yes.  Stress inducing, yes.  Completely awesome, definitely.

5) Defiance:  

This is one that I was dreading with a young child.  What if they just wouldn’t do what I wanted them to?  I hoped for an obedient little angel who would follow my every command with a loving smile.  Little J’s defiance is triggered by one key visual message.  Uniforms.  Specifically doctors uniforms.  Definitely physio uniforms, and if he gets so much of a whiff of antiseptic or spots a therapy bench, there’s no coming back.  Suddenly my child who has quite merrily spent the last two hours sitting and playing becomes completely floppy.  He lies on the floor practising his ‘death stare’ and refuses to engage a single muscle.   

Should a physio somehow manage to get him into a position and attempt to get him to reach out for something, the look of disdain usually heads in my direction.  Along with an anger babble.  A ‘How dare you allow this mother’.  An ‘I furiously object to this manhandling.  This lady has placed that toy clearly out of my reach.  I am fairly sure this breaches the Equalities Act.  You two need to start making some reasonable adjustments, starting with a warm bottle of Neocate.  Chop chop.’

It’s very frustrating.  It’s also an amazing reflection of will, and choice and everything that I so desperately want for him.  It shows his brain trying to win the war with his condition.  He won’t win the physio battle though.  Alright he might.  I’m pretty scared of the death stare.


I admit it, this may all just be a really sad reflection of the fact that our real ‘worst of things’ has been tougher than any of the things I ever considered about having a child.  

But those things aren’t my problem.  They belong to medical mummy.  She deals with hospitals; she holds him down for blood tests, says long words and reads the devastating letters.

Most of the time I’m day to day mummy.  The one that does cuddles and makes lunch (alright…and delivers a shed load of therapies, but we’ll ignore that).  But for this day to day mummy, it turns out that all the things she was worried about with a toddler turned out to be the best of things.

And if the worst of expectations turned out to be the best, then how amazing will the best of expectations be?

How will I feel when he learns to crawl?

How overcome with pride and happiness will I be to see him take his first steps?

How endless will the joy be when I first hear the precious word ‘mummy’?

...I think I’ll be the one who’s head starts spinning round.  And I hope it just keeps on spinning.

Sunday, 16 February 2014

The Unknowing

Today is a good day.  Today should be a great day.  One of the best of days.

Today we got the results of the next round of mitochondrial testing for Little J.  He has tested negative for all common genetic mutations associated with mitochondrial disease.

That means it is highly unlikely that he has mitochondrial disease. Devastating, progressive mitochondrial disease.

I should be ecstatic. Celebrating.  Jumping up and down letter in hand feeling the weight of two years worth of fear finally lift.

Only I can’t be.  Don’t get me wrong, I am relieved beyond words.  I am filled with overwhelming thanks to whatever force of fate flicked it's wrist and pushed us off that diagnostic course.

But I can’t feel joy.

I can’t feel it because I know how lucky we are.  Because along this journey we have met people who have been affected by mitochondrial disease in the worst way.
   
Because I have done the reading.  I have witnessed the pain and devastation of uncontrollable neurological symptoms on a tiny, innocent child. I have read what neurological decline looks like.  Fallen to my knees behind closed doors. 

Because I now know the statistics.  And I know that for someone, today will have been the worst day.

Because I know.

And before I didn’t. And I can’t unknow it.

I remember the first time I asked a doctor if my son was going to die.  I remember the slight panic in her face, the shift in her weight, the glance to the door as she no doubt wondered how on earth she had the misfortune to be the one to get ‘that question’ first thing in the morning. She knew what I was looking for.  I was looking for an expression of shock that I could even suggest such as thing.  An ‘oh no, this kind of thing happens all the time and the children are just fine.’  Or at least an ‘it's very unlikely.’  Her actual answer was brilliant in its avoidance.  It was delivered with Shakespearian precision, so much so that I wonder if it is passed down to new doctors as a medical rite of passage.  A piece of political rhetoric.  The words to get you out of the firing line.

‘We are dealing with the unknown.  Both for you and for us.’

Erm ok. Thanks for clarifying.

The actual words ‘mitochondrial disease’ weren’t mentioned for a long time.  No one wanted to scare us.  Retrospectively I suspect it was high on the suspect list early on.  Instead, we were told about metabolic disorders in general.  Mitochondrial diseases fall within the wider spectrum of metabolic disorders.  What does that mean?  Er…well…ok I’ll try.  If you are medical, you may want to look away now, because this is going to be clunky at best.  

A metabolic disorder results from a genetic flaw that disrupts the process of turning food into energy.  It can lead to too much or too little of vital chemicals.  For example, the body may not be able to remove amino acids, leading to a dangerous build up.  Mitochondrial conditions specifically affect mitochondria, which form the ‘powerhouse’ of every cell in the body.  They produce energy and when that process is disrupted, the outcome can lead to multi organ failure.  There are different mitochondrial conditions, with varying levels of severity.  I don't want to sound completely negative - there are people who live a normal life expectancy with a mitochondrial condition.  However, when the symptoms appear dramatically in infancy and progress rapidly, it can signal the most severe forms.

Sounds like I know what I am talking about? Well, not really.  Actually, no one has ever sat us down and said ‘this is EXACTLY what it means’  It only takes a cursory glance at Google to find out though.  Instead it was hinted at, implied.  Retrospectively, it makes an early conversation with a senior consultant make a lot more sense.  The one where he told me that, at that point, we didn’t want a diagnosis, 'because then you will be condemned to it.'  That night, as I furrowed my brow and huffed in frustration at our lack of answers, I didn’t get it.  I do now. 

But at first, we didn’t know.  In fact I didn’t really understand the meaning of any metabolic conditions until the second time I heard them mentioned.  When the tone of delivery was oh so different.  The first time was from a doctor as he headed out of the door.  He turned back, looked at me and said breezily ‘it may well be a metabolic condition.’ Oh.  Ok.  Well that doesn’t sound too bad.  Metabolic.  Hmm…search memory banks.  Where’s GSCE biology?  Oh yeah, metabolism.  That’s got something to do with making you fat or thin hasn’t it?  Right.  Well, ok so Little J may not be very good at the Atkins diet. Whatevers.

I dutifully relayed this information onto my husband over the phone.  It was during this hospital stay that I learned the peril of my own obstinance.  You see up until this point I had outright refused to get a 3G phone.  I had an old brick that I knew how to use and was perfectly happy with.  I couldn't accidentally bang a touchscreen and phone China, or Facebook a string of asterisks.  I also had zero internet access.

Half an hour later he rang me back.  His tone on ‘hello’ told me all I needed to know.  The delivery of his first line slammed reality into focus.

‘I’ve just Googled metabolic disorders.’

What he had read featured mitochondrial disease highly.   It was information that I was to read again and again in the coming year.  Each time with shock.  Fear that this could be our little boy’s future.  That we could be facing a frightening decline.  But most of all shock about one key thing.

I didn’t know. 

How could I not know?

Like every new parent I had done the ‘what ifs’.  I had read how to spot the signs of meningitis; I had worried about well known childhood conditions.  But at no point, when I planned my sons future.  When I stood heavily pregnant and bought the soft white rabbit that I would later cling to in a dark hospital room.  At no point did I think ‘what if my baby has mitochondrial disease?’  How did I not know?  

How could I never have come across a something that, whilst rare, is as common as other well known serious childhood conditions? How could I not have read an article, seen a documentary or cried at a charity advert? 

How could I not know what so many families are going through?  I have no right to even talk about it, as I don’t know.  Fate went our way.  But we teetered on the edge of that overwhelming chasm of fear.  We peered in and it was heartbreaking.  We watched Little J get worse and worse and felt like all control was ripped from our lives. I remember falling asleep in his room, having left him in hospital, wondering how.  Wondering how we would ever hear the songs he loved again, see his toys, set foot in this room.  How we would put one foot in front of the other at all if the worst happened.
  
It didn’t.  With the right medication he underwent an unexpected and dramatic turn around.  But I remember the crushing weight of this potential diagnosis and the difficult process of having to spell out exactly what it would mean to anyone who asked.  And I had to spell it out.  Because they hadn’t heard of it either.

Even within the general medical community awareness is low.  When we moved house last Christmas we were awaiting our muscle biopsy results.  The first GP I mentioned ‘possible mitochondrial disease’ to looked at me like I had said Little J had a bit of a cold.  He rushed through the rest of the appointment and ushered me out of the door.  I later realised that he hadn’t really known what it meant.  In fairness to him, we have since gone back to see him and he couldn’t have been more supportive.  

However, our reason for returning to him was our experience with the second doctor we saw.  I told her that we were awaiting muscle biopsy results, that Little J had regressed developmentally again, that initial findings had showed minor abnormalities in the mitochondria (now thought to be insignificant).  Her response was one of the coldest, most poorly thought out sentences I have ever heard.  

‘Yes, well it does sound like a mitochondrial diagnosis is increasingly likely.  So I suppose the main concern now is for future pregnancies.’   

She wrote off my child’s worth in one sentence.  I was speechless. Unable to object or defend. I know what she meant. What she really meant is ‘we can’t treat this, so for the love of god don’t get pregnant.’  Only in trying to make it sound better, she flipped it into a knock out emotional punch.  I held it together in front of her, then walked back to our car, tears streaming.

Over a year on, we finally have our more conclusive answers.  Well.  Ish.  Is mitochondrial disease completely off the table?  Unfortunately no.  It is notoriously hard to diagnose.  The next step will be to sequence Little Js mitochondrial DNA, but it is now feeling unlikely. He is also moving forwards, not backwards developmentally. In terms of prognosis, that is very positive and very significant indeed.

We will never forget the last two years though.  We will never forget the people that we have met, both face to face and virtually, and what they have gone through.

There is now some support available to these families.  In 2007 The Lily Foundation was set up by parents, in memory of their daughter.  They are going from strength to strength, supporting families and raising awareness.  And increased knowledge means intervention, it means funding and I hope, eventually it means change.

Mitochondrial disease is not an easy thing to know about.  Some days I wish I didn’t.  But there has to be knowledge.  There has to be understanding.  Families shouldn't have to explain something so difficult again and again and again.

I can’t say anything to make it better.  I can’t do much, except ask people to know.  So, instead I am just going to remember how lucky we are, hold my boy a little closer and share the Lily Foundation’s video via this link.

Tuesday, 4 February 2014

The Words of Others

This isn’t a usual post for me.  In fact it’s a not really my post.  Its a post that I am struggling find the right words for.  But I have realised that sometimes the right words are the words of others and so, I am hoping that you will take the time to read the beautiful, eloquent posts below.

I have written a lot about the community of families created by SWAN UK.   I have been incredibly lucky to meet many of those families.  Others I have not.  But we exchange messages, follow each other’s journeys and interact daily.  I don’t like calling it an ‘online community’ it suggests a facelessness.  In fact for many of us, it is the one place where we can always show our true face. Drop the brave face. 

Last week we lost a little girl from that community.  She had turned one just weeks earlier.  The news of her passing reverberated around our community and a tide of sadness surged through it; as we struggled to imagine her family's heartbreak and confronted our own fears head on. That evening we joined together and lit a candle for her.  Candles burned all across the country for a little girl who so many of us never got to meet, but who touched us all.

The blog posts below are from other SWAN UK bloggers.  All of them say so much more than I can.  In fact they say a great deal.  For everyone touched by tragedy.  For everyone faced by fear.  For a strong and brave family.

Most of all, For Lyla. x

Monday, 20 January 2014

Just a Word

I have decided that a lot can be determined by a person’s choice of magazine. Or more the way that they read it.  There’s the brazenly open gossip mag readers, full of confidence, holding it up fully unfurled, elbowing you on the train.  Then there’s the secret folder-overs, who don’t want you to see the trashy title and swing between glee and shame in equal measure (that’s me if your wondering). 

I’m having a bit of an observational week you see.  I entirely blame the BBC for this.  ‘Sherlocking’ has become my game of choice whilst travelling to medical appointments on the tube.  Only all I have really determined is that a lot of people like the horoscopes in The Metro, most people travelling to the city on a Monday morning have a hangover and no one likes being stared at. (Although I’m fairly sure the guy by the door was an international criminal mastermind.)

But this has made me aware of my own choice of magazine, nowhere more so than at the hairdressers.  Now really…if I’m reeaaalllly honest I am just itching to read Closer or Heat.  Actually, that’s a lie, I even get a fair bit of entertainment from a good ‘I was impregnated by an Alien whilst watching Jeremy Kyle’ story from the three word titles (Pick Me Up, Take A Break…take your pick).  However, with someone hovering above me it, it all just feels a bit shallow and so at my most recent visit  I steered clear of the gossip mags (I say that Iike I go to that hairdressers a lot – it is actually a count-down-the-days-hope-they-are-busy-and-it–takes-a-while rare treat these days) No, instead this time I fully accepted that I am no longer in my twenties (it took me a couple of years to come to terms) and I opted for a health title.

The reason that I picked it up was the lead story.  They were running a story on autism.  It was a positive story about people with high functioning autism in the workplace and their successes.  I was reading away, thinking how nice it was to see disability presented in such a positive light, when I suddenly found myself prickle.  I read a word and jarred.  I don’t know why, but it made me feel uncomfortable.  In fairness to the magazine, it was taken from a quote, but in this quote, the phrase ‘autistic’ had been turned from a description into a noun.  It was referring to people as ‘autistics’.  Now let me be quick to state that I know very little about autism or the associated community, for all I know this is a completely acceptable term.  However, reading it with no background knowledge, it seemed to take the person out of ‘person with autism’.  To make the medical diagnosis the whole.  I quickly realised my hypocrisy on this - see I think nothing of describing my son as a ‘swan’ (standing for syndrome without a name), which does exactly the same thing. However, what makes it acceptable, is that it has come from within the disabled community.  It is a positively determined marker, something to give us a sense of belonging.  I think it is so important that language referring to people with disabilities comes from within those communities – and I sincerely hope that this term for people with autism is one that is owned by that community, rather than one that has been forced upon it.

But all of this has got me thinking a lot about language recently.  About the importance of language and the implications of its misuse.

It has really got me thinking about one word in particular.  A word that I have seen pop up completely innocently on friends social media feeds more than once in the last few months.  Usually in the comments section, where friendly jesting and joking has got to a fever pitch.  That’s when it gets unleashed.  The single most offensive word to people with learning disabilities.  Eek. - That’s a bit of a shocker.  Only nobody bats an eyelid.

I know what you are thinking.  Oh god…she’s not.  Really?  She’s going down this route?  You may be shifting your weight a little uncomfortably wondering if you really want to read on, or if it’s all going to get a bit GSCE Sociology meets a ‘we’re all the same, but different’ Disney script.  Fear not – I’m not here to lambast or rant.  I’m not going to get all ideolised and start printing slogan t-shirts. No…I just want you to think.  And yes, I know that I am probably the gazillionth person to blog on this topic, but that just demonstrates the importance.  Whether it is a term you have used, or one you wouldn’t dream of saying, the fact is that it does get used.  A lot.  And that means there is a lot to think about.  Only there appears to be less of a requirement to think in recent years.

You see, the worlds gone a bit mad on ‘PC gone mad.’  According to the press everything is too politically correct.  Certain newspapers relish a good story on those crazy liberals and their crazy language issues (…oops, better not say crazy.) I remember reading a story about a lollypop lady who wanted to dress as a large chicken for Easter.  The council objected and the story in the newspaper led with ‘PC GONE MAD!’  Well, erm, actually no.  The council’s objection was on the grounds of health and safety.   Her high visibility uniform wasn’t visible (which is kind of the point) and human size lollypop waving poultry is fairly distracting for even the most alert of drivers.   The council were not suggesting that her attire was deeply offensive to chickens, or insensitive to birds (who let’s face it don’t tend to do well with cars).  I was slightly disappointed.  I really wanted her to have a valid argument around political correctness and to start a movement of people headed to work dressed as animals  The thought of a stockbroker throwing his briefcase to the ground whilst screaming ‘it’s just PC GONE MAD’ at his boss when asked to remove his rooster outfit was just too good.  Sadly it was not to be…

So let me start by clarifying that I am not one of the PC brigade.  I certainly have no issue with words being used in their correct context.  In fact, I am just going to say it.  Retarded.  It is a word.  It has a correct use.  It literally means delayed.  Retarded growth is a correct use, retarded time even exists in physics and, as much as it makes me want to cry, mental retardation is, or at least was a medical term.  Although it is rarely used now.  Where I take issue is when the word is colloquialised.  When it is taken from an adjective to a noun.  No matter how jovially it is used, there is no doubt that ‘Retard’ is a put down.  It’s a word that implies superiority over another.  It reeks of subjugation.  No matter how casually it is meant, every utterance perpetuates its use.  And its existence impacts upon thousands of us.  It impacts my son, it impacts my family and it means that one day I am going to have to be a liar.

To understand that impact, I think it is a word that has to be talked about.  You see, the people who I have seen write and heard say this word would never dream of causing offence.  They would never use offensive language about other minority groups, yet for some reason, this word persists.   (to clarify – I’m not angry and I understand why you would think it is acceptable – society tells you it is).  Now I know some people will be thinking ‘what’s the big deal?  It’s just a word.’  Only it isn’t.

Language matters.  It really matters.  It Martin Luther King had just had ‘a vague musing’, it wouldn’t have been the same resonating, socially impacting statement now would it?  And yes, there are lots of words and names given to people in jest.  Lots that get banded around.  But there are some words that mean so much more.  They are the words that have a terrible history.  I have been wondering what marks a word as being unmentionable. What takes it from casual slang to a complete no-go.  Where the line is drawn.  Sadly, I think it is a line that is pencil marked by suppression and contempt.  Then permanent markered over when that contempt leads to violence.

Woah, you may be thinking.  That’s a bit heavy.  It’s just a little word for goodness sake. No..it isn’t.  There have been several high profile cases of violence against people with learning difficulties, all of which I find to upsetting to detail. According to statistics from Mencap’s ‘Stand By Me’ Campaign, as many as 9 out of 10 people with a learning disability have been a victim of hate crime and bullying.  Ninety percent.  Just think about that number.  Ninety percent facing offensive slurs and bullying.  Just think about that statistic for a minute.  Think about what it means to the disabled community.  Think what it means to disabled people and think what it means to parents like us.  Because no matter what I do, no matter how ferociously I protect, basic maths tells me that one day my precious little boy is likely to fall in that ninety percent.

And I wonder.  When I see or hear that word, I wonder how it will happen. When someone chooses to use that particular turn of phrase, my stomach flips and I begin to question how it will happen. How he will first hear it. How old he will be. Will he understand? Will I be there, or will he be alone, his little blue eyes filling up with tears?  Will I wipe them from his cheek when he comes home?  Will he ask me how people can be so cruel and unkind?  Will I have to lie?  Probably.  I will have to look my little boy in the face and tell him an outright lie.  Tell him it doesn’t matter. 

I’ll have to tell him that ‘It’s just a word.

But it isn’t.  It means so much more.  It is a word that cannot be re-claimed by its own community.  Not fully.  And for that reason it will never cross fully back across the line into acceptable language.  Not for me.  Yet is a word that persists in popular culture.  That even wheedles its way into Hollywood movies and that inexplicably gets passed as a slur between the two teenage girls on the bus as they insult each other’s shoes.  No matter what the context, it is a word that has roots in the harassment of one of the most vulnerable communities.  It’s really quite ironic that it has persisted to be honest.  Because that community is one that each and every one of us could join at any point, without any control over it.  In fact many of us will.  The only thing any of us knows for certain is that we will get older.  And with medical advances many of us will live for longer than we ever expected.  If you feel confident that you’ll be exiting stage right with all of your faculties intact, then you are more of an optimist than me.

So if you have read all the way through this and you still don’t see what my problem is.  Then that’s fine.  All I said was that I wanted you to think about it.  If you see no issue with the use of that word, then, ok.  Fair play.  You read this far and I thank you for that. 

All I’ll ask is one last thing.  One final moment of musing.  Forget everything else I have written, everything else I have said.

And imagine it’s your child.


Then tell me it’s still just a word.