Monday, 23 December 2013

Our Very Own Christmas Carol (...with toilets)

I had a bit of a moment last week.  I admit it.  A childish, throw my toys, in a huff moment (in a toy store, ironically.)  You see I love Christmas.  LOVE IT.  I like irritating Christmas songs, tinsel, fairly lights, mulled wine, Christmas films with now in-and-out-of-rehab child stars, streets lined with happy people on their way home (because a fairly high proportion of them are at least moderately drunk), Santa hats, cinnamon sticks. You get the idea.  Only last week fate wasn’t feeling the Christmas cheer.  This was meant to be our fabulous, amazing Christmas to end all Christmas’s and once again, Little J’s undiagnosed syndrome decided to play Scrooge.  Only, much like Scrooge, I had three big moments. It all got a bit Dickensian really (only without the fog, and long words). You see, Christmas past, present and future came to say hello, show me how unbelievably lucky we are and give me a much needed dose of perspective.

I have some big festive thank yous to make, but I’ll come onto that.  Firstly, you are probably wondering what caused me to act like a child in a room full of children.  The answer….toilets. No, I’ve not taken to using inoffensive swear words – I literally mean toilets.  I know.  It’s not exactly earth shattering is it?  But then it’s always when you least expect it, when you think you are in complete control that the fear and frustration of life without a diagnosis can creep up.

You see, Little J is having a bit of a hard time of it these last few weeks.  I won’t bore
When you are dressing an octopus as Santa
is is time for a new blog photo theme? 
you with lengthy medical explanations, but some of his ‘episodes’ are becoming potentially more serious.  He is frightened by them and we have suddenly realised that we had become incredibly complacent to the strange things that he can do.  We hadn’t really seen what was right in front of us.  And so, the New Year will bring more tests and likely more medication.  I do think that we will get this under control.  I trust our medical team and their judgement.  However, for now, we have a little boy who can become very frightened and confused on a daily basis.  A little boy whose problems seem to be triggered by loud noise, bright lights and lots of people.  Right at the time when we so wanted him to feel the excitement of Christmas. 

And last week, we felt that acutely.  I had decided that Little J & I were going to do something we never do.  We were going to have a day together, completely free from appointments and therapy.  We were going to do some Christmas shopping, look at the lights, maybe even find Santa.  It was going to be fabulous.  Only it wasn’t. 

Now I have absolutely no right to whinge about the challenge of navigating a pushchair round busy shops.  Pretty much every parent of a child under two has to do it.  Only with a disabled child, it gets a bit trickier.  The main issue - your child is heavy.  You want to minimise lifting them in and out.  You know all step free routes round your local area and the location of all the ‘pay at pump’ garages.  And if you have a child who can get distressed, you always need an exit strategy.  When Little J was younger, it was easy.  He would cry, I would pick him up.  I just can’t keep doing that now – not if I still want to be able to lift him in a few years.  So now, we walk.  Unless he is in a painful dystonic episode (which I would always pick him up for) I can generally calm him by getting outside and walking.  But being trapped in a shop with no way to get out is a full on meltdown inducing nightmare.   And so Christmas is challenging. Not only are there more people, but there are extra displays minimising the width of the aisles.  Many shops just aren’t really an option.

So on our outing day, we opted for a department store.  More space.  Bigger aisles. I headed straight to the floor with all the toys, excited to see what I could find for little J.  Only the noise of children running around, the lights, the sounds – they all sent Little J straight into a cluster of episodes. Again and again.  Back to back.  We tried to stay out of everyone’s way, as I stroked his head and talked to him.  Except nobody there realised there was anything wrong with him – we were just in the way.  And so we kept re-adjusting, moving, as the streams of happy families, with children chatting away about Christmas streamed past us.  We watched siblings playing together with the display toys and I just felt an enormous grief.  Grief for the life that he could have had,  grief for his pain and fear, grief that he can’t be part of the world that a two year old should inhabit, grief that without a knowing our genetic circumstances he will never have a sibling to play alongside. Just grief really.  I am not one to have ‘it’s not fair’ moments – I believe that life is never meant to be simple and there is always someone in far more difficult circumstances.  But right then, watching him got me. 

Little J had come out of the episodes, but I wanted to calm him down and so we headed to the toilets. What greeted us was almost ironic in its relevance.  It was like someone had taken how I was feeling in the moment and made a pictorial representation of it.  The toilets had beautifully painted murals by the doors to distinguish them.  There was one with a pretty pink princess and the word ‘princesses’ in carefully scripted italic writing.  The other had a blue prince with a crown and the word ‘princes’ in the same, extra special font.  Then there was a third door.  A door with no child friendly pictures.  Just a sign across it.  In black.  In Times New Roman style straight font.  In capitals.  DISABLED. 

I know it’s not a big deal really. I mean they’re just toilets for god’s sake.  But in that exact moment, it hurt.  I wanted my boy to be just as special as all the other children.  I wanted him to feel as much a prince as every other boy there.  So I spun his pushchair around in a huff, flew past the toys I had hoped to buy and made it to the lift before the tears started to come. 

Thankfully I composed myself in the lift and decided that tweeting a department store about their toilets was a bit unnecessary and borderline weird.  It was then I got my first reality check.  My ‘Christmas future’ moment if you like.  As we were getting out, I almost walked straight into a beautiful little girl of about six or seven getting in.  Her mother was with her, pushing a large empty pushchair.  The little girl had run to the lift, she was smiling, she was curious, she was excited.  She was also disabled.

Then I realised.  I looked at her stepping into the lift, excited to get to the toys and I realised that my grief was misplaced.  Because there is only one thing we know for certain about my little boy’s future.  We. Don’t. Know. 

We don’t know if he will walk. We don’t know if he will talk.  We also don’t know that he won’t.   We don’t know where he will be in one, two, three years time. So why I am wasting time worrying?  Why I am spending our precious time together getting angry at toilets.  I mean, toilets.  Really.

My son’s future is a complete unknown.  Totally unmapped.  But I do know that he has a lot of people cheering from the sidelines.  I know that actually, we aren’t really alone, stood in the quietest aisle of a toy store, whilst the world passes us by.  And so I come to our ‘Christmas present’.

We have been a little concerned lately about the financial implications of caring for Little J.  I will try not to wax lyrical on this, but one of the biggest surprises for me of having a disabled child has been the immense cost.  Wondering how much these mythical special needs things cost?  Well imagine how much you think an item like a travel cot, or car seat could possible cost.  Now add a nought. I remember walking in torrential rain once, whilst attempting to manually hold an inappropriately shaped raincover over Little J’s special needs pushchair.  Families kept passing us, with young children snuggled warmly away from the elements and I found myself peering enviously at their offspring.  Not for their developmental abilities or bright futures, but for the pieces of plastic that were successfully preventing them from taking in impromptu shower.  You see, a rain cover for Little J’s pushchair costs about the same amount as an entire mainstream stroller for a two year old.  For a piece of plastic in the right shape.  The hood to attach it to is even more.  And they are some of the minor things he needs.

So you can imagine, we were feeling erm ‘perplexed’ about how on earth we could provide all that Little J needs.  And then something unexpected happened. We had long ago come to the very difficult decision that we would need to fundraise for Little J.  It was a difficult decision because we felt uncomfortable asking for help.  We have a roof over our head, my husband has a good job.  But we cannot even begin to fund what our son needs.  Certainly not in the timeframe that he needs it in. I am extremely lucky that I have an amazing team of friends helping us, because without them I’m not sure we would have got anything off the ground.

One of the necessities around this decision to fundraise was me letting go of permanent work.  We had always thought that I would be going back to work, at least part time.  Well I say ‘letting go’, that isn’t entirely accurate, more ‘fought tirelessly for a childcare option, wrote to any politician who would listen and then realised that the system was completely against us and it was never going to happen.’  But that’s another post entirely. 

The first people to see our Just Giving page to raise money for Little J were my old colleagues.  My previous manager circulated our page around to see if anyone wanted to donate.  The response was unbelievable.  I mean, truly beyond anything we could ever have imagined.  Wondering how much?  Well imagine what you think something like this might raise.  Then add a nought.   To say we are touched is an understatement.  What amazed me is that people I have never even met chose to donate and to help my little boy.  I don’t even know how to find the words to say thank you.  It all seems inadequate.  But I think it is a huge reflection of the fantastic organisation I once worked for.  I don’t think there would have been many places where that would have happened.  Some of the money raised has already enabled us to take Little J to a therapy reassessment.  Something that would otherwise have been a real struggle to fund.  The result of this is a new daily programme that we feel confident will make an immense difference to him. So all I can say is a huge, enormous, thank you.

As you can imagine, this has certainly helped to turn our Christmas around and to give us an optimism and a drive to keep pushing Little Js development and to keep going.   Even in the face of recent regression and these unknown ‘episodes.’  But at the beginning of this I talked about perspective.  And where that perspective has come from is undoubtedly our Christmas past.  A past that all of a sudden came back to me as I walked away from that department store.  A past that made me hang my head in shame for getting upset about a not even particularly offensive toilet sign when I should be so unbelievably grateful for what I have.

You see, we haven’t had many Christmas past’s with Little J.  Two to be precise.  The first, he was tiny and had no idea what the festive season was about.  The second.  Well, the second still makes my stomach flip a little when I think about it.  Last year, Little J was not doing well.  In fact, he was regressing regularly.  He had completely stopped growing.  Illness was a nightmare.  He would become floppy, his episodes would increase and he would usually lose a skill.  First to go was babbling and in December he suddenly seemed unable to sit.  When you have an undiagnosed child, there is a process.  A scale of severity.  As your child gets older, more and more of the benign conditions get ruled out.  Until you reach a point where there are very few options left.  It is either scary, terrifying conditions, or something so rare that no one knows it.  We reached that point in December. 

We had always been told that a muscle biopsy was in the long term plan, but everyone hoped another diagnosis would be found first.  It was to test for mitochondrial disease.  Mitochondrial disease is a complex condition, one I won’t even attempt to explain, but it is usually progressive.  In a child like Little J, who began symptoms dramatically in infancy and who was regressing, it would usually be life limiting.  In December, we began to feel like Little J may be beginning a downwards spiral. The doctors agreed.  He was brought in for a muscle biopsy urgently, three days before Christmas.  We spent Christmas trying not to touch the four inch area on his leg where skin and muscle had been removed.  We tried to engage him and to get him to smile at his presents, or laugh.  He wasn’t really interested.  He was drugged up on pain relief, his muscle tone was still low from a recent illness and he was generally unimpressed with the world (fair play really).   I remember wondering if we would ever have a true Christmas with him.  One where he was fully engaged and happy.

Well that fear, that dreaded downward spiral.  It didn’t happen.  Little J still has minor regressions, but he is growing, he handles illness better than he ever has before and he is gaining more skills than he is losing. In fact, we have made it an entire winter without a hospital admission (I will mostly be found running around touching wooden items of furniture for the next hour). Mitochondrial disease is not completely ruled out and his mitochondrial DNA is being looked at, but the muscle biopsy was all clear.  It is a very difficult condition to diagnose, but it is looking less and less likely in our case.  It is looking like we are option number two – a condition so rare that no one knows what it is.  But not mitochondrial. A year ago, I would have given absolutely anything to be able to say that.  And now look at me having a strop over a toilet – time for a perspective slap me thinks.

This year will be different.  I know it will.  I can’t claim it will be perfect.  There will be moments.  Challenges. But, even if it is only for a few minutes, I know I will get to see my little boy smile and laugh.  I will see him reach out for his carefully chosen presents and I will feel his weight rest against me as we sit on the sofa and watch some inane Christmas TV.  And for that – I am so very lucky and so very blessed.

So I am determined to make this Christmas a very special one.  The tinsel is shining, the fairy lights are twinkling.  The wine is erm..mulling?  And Scroge.  He got left behind in the toilet. 

Tuesday, 19 November 2013

Stepping out of the Middle

You know when you have one of those moments.  Those moments you realise that everyone sees something that you didn’t think was there.  The squiggly line of blue biro across your forehead.  The unfortunately located un-popped button on your shirt.  I remember being sat at my desk at work a few years ago, completely oblivious to the fact that my shoes did not match.  Suddenly my entire journey that morning, and the perplexed looks of my fellow commuters made so much more sense (yeah, I don’t really know how I did that one either – and if my husband is reading this NO it is not because I have too many shoes).  Well, a few days ago, I had one of those moments. With three casual words from a stranger, our day to day changed.  And whether I am ready or not, I know it has changed for the long run. 

We were travelling back from a hospital appointment in London, causing some rush hour mayhem with our pushchair.  Little J was successfully ensuring that he was the centre of attention on the tube with a twenty minute giggling fit courtesy of The Evening Standard.  No, he has not suddenly undergone an epic developmental leap and progressed to reading the daily free press.  This hilarity was due to Little J’s Truman-Show-style belief that absolutely everyone is put on this earth to interact with him.  In his mind, people who look down at a newspaper must, in fact, be playing peek-a-boo.  This means that for Little J, the London rush hour with its ‘PLEASE GOD DON’T LOOK DIRECTLY AT ME!!’ approach to social interaction, is the ultimate in hilarity. For him, it’s like a peek-a-boo flash mob.   He had got himself into such a state of gasping laughter that I was struggling to keep him on my lap.

A man was getting off the tube, and he leaned down to say something to us as he left.  People often comment when Little J has one of these moments, usually, ‘He’s in a good mood today, isn’t he?’, or a simple, ‘He’s happy.’  But this time it was prefaced by three words.  Words said with a friendly jovial tone.  Words without ill intent. Words that simply slipped into his vernacular, probably completely unconsciously.

‘Well at least he’s happy.’ 


Triple ouch.

For the first time that I have been aware of, someone instantly recognised Little J as different.  I don’t know why it surprised me.  I have a two year old who does not stand, or talk and whose little tremors and movements are probably far less subtle than I think.  In fact, this same man offered us a seat, as I stood, struggling to hold onto a wriggling boy with low muscle tone, who does not grip or hold on as a young child usually would.  This is only the second time anyone has offered us a seat since my son moved past the age when a child would usually walk.  It isn’t out of rudeness, but because when most people see us, they assume that I have a child who can stand up and who is just strangely clingy. 

The only other time it has happened was following a trip to the cardiac clinic to collect a 24 hour cardiac monitor.  As I struggled to balance the wriggly one on my hip and not plummet into the lap of a nearby businessman, Little J suddenly lifted his top up, proudly displaying the maze of wires and sucker pads across his chest to the entire carriage.  I have never seen so many men in suits move so fast.  It was like an electrical current had suddenly run beneath the questionably upholstered seats and nipped them somewhere unfortunate.  But this time around, there was no big reveal involved. Because the older Little J gets, the more obvious his disabilities become.

This is not to say that we have spent two years hidden safely beneath a camouflage.  Far from it.  We have, instead, occupied a very unusual little space in the middle, swinging from one extreme to the other.  The word that pops up most in Little J’s medical notes is ‘paroxysmal’ (say that after a few drinks.)  It simply means intermittent (unless you have a medical degree, in which case it probably means a lot more than that – but humour me).  Little Js condition has always centred around daily ‘episodes.’  Episodes of dystonia, episodes of involuntary movements, episodes where he can’t move his arms, episodes where his eyes roll etc, etc.  Every few months, a new paroxysmal event seems to join the daily party. (Yeah, I know I could just say intermittent, but once you start saying paroxysmal, it's kind of got a nice ring to it and it makes me feel like I’m on an episode of House.  Alright Casualty.  Alright Doctors.…look I don’t critricise your viewing habits.)  

When Little J was younger, the neurologist would always comment that there were no ‘baseline’ issues.  And so, we swung between two very different extremes of perception.  From the granny leaning into the pushchair cooing about how, 'he’ll be running around soon’, to the shocked little girl, who chased us around the supermarket wailing, ‘what’s wrong with the baaaaayyyyyy-beeeeee’, tears pricking in the corners of her eyes.  Her horrified mother pulled her away from the pushchair, telling her not to be so rude, as Little J’s limbs contorted into a full body spasm that I could not break him out of.  I wish I could have given her more of an answer than, ‘he’s just a bit poorly.’  But I didn’t have any answers to give.  I still don’t.

It has been a tricky little space to occupy at times.  The first time we met our new physiotherapist, she thought Little J was a sibling.  She could not reconcile the sociable, smiling child sat playing on my lap with the volumes of medical notes talking about a severe, perhaps progressive genetic condition.  We often get this response, we often get comments about how healthy he looks, how well he is doing…until he has an episode.  Until his limbs tense and contort, or his eyes roll back, or he falls to the floor with his arms and legs flailing.  It is different then.  The friendly stranger turns quickly away, hoping a quick glance back doesn’t look like a stare.  Smiles turn to looks of concern.  Sometimes looks of fear.  And I don’t blame them, because it is frightening.  And it makes very little sense. 

This type of condition doesn’t tick boxes on medical forms, or local authority forms.  Whilst Little J has had seizures in the past, his daily episodes are not epileptic in nature.  However they put him at huge risk.  He cannot be left unattended in case he hurts himself.  He can injure himself during a dyskinetic attack of flailing movements, but he can also lose head control, making padding a risk.  He cannot sleep in a standard cot, as his dystonic attacks of muscle spasms can be so severe that he could break a limb through the bars.  Communication methods also have an extra layer of complexity.  He cannot be taught Makaton sign language, as he loses the use of his arms ten to fifteen times per day.  As he gets older and we move further into the system, I am realising just how difficult this undiagnosed syndrome is to explain.  What puts him at risk is clearly medical in nature, but we do not meet any of the criteria for community nursing support.  At the moment, Little J has no independent mobility, but should he ever learn to walk, there is no box on the DLA form asking, ‘can your child walk one minute and then lose all ability to even sit up the next?’

These extremes of perception have also affected us in special needs environments.  I remember the first time I attended a special needs group when Little J was nine months old.  I looked around the room and was consumed with guilt.   I had a nine month old who was sat up, holding his head up, making eye contact with everyone and smiling away.  I felt awful.  Awkward.  Like everyone must be wondering what on earth we were doing there.  I really needn’t have worried.  I have read comments online about elitism within the special needs world.  I can honestly say I have never, ever been on the receiving end of this.  That’s not to say it doesn’t happen, but I am pleased to say that it never has to us.  And if anyone was likely to experience it, it probably should have been us.   But I am pleased to say that we have only ever been offered advice and support at every group we have been to. 

But, as time has progressed, so has the nature of Little J's condition.  We don’t talk about the absence of ‘baseline’ issues at neurology appointments anymore; because it is so startlingly obvious that they are now there.  There is a general unsteadiness of movement.  If he had any independent mobility to assess it by, I imagine it would be classed as ataxia.  There are the sensory processing problems.  The visual perception problems.  And then there is the biggy.  The developmental delay.  We have seen so little progression, that it is closer to a developmental freeze.  At two years and four months old, Little J is developmentally around an eight month level.  Only, when you take into account the fact that he hit all milestones until his episodes began at six months old, this means he has only made two months of developmental progress in twenty two months.  I try not to multiply up what this will mean for him going forward, as it is just too heartbreaking. 

I believe that we will see a developmental leap.  I have to believe that.  I just have to, in order to keep us going and to keep dragging him through the hours of daily therapy that we do with him. Sensory therapy, auditory therapy, physiotherapy, occupational therapy, speech and language therapy – I need some therapy by the end of that lot.  But we are seeing small, precious nuggets of progression.  Little J is astounding me with his ability to adapt to his physical ability.  He can spin himself around in a lying position using the ‘two leg wrestler slam’ (he is a BIG fan of that one at 2am) and he is getting closer and closer to doing the ‘70s disco backwards worm.’  And I am phenomenally proud of him for it.  It may not be pretty, it may not be the ‘right’ way to get around, but it’s his way….and it’s pretty impressive, I for one couldn’t do it.  Seriously, attempt a backwards worm, its bloody hard work!

But there is no doubt that these increasing ‘baseline’ challenges, his ‘non paroxysmal’ challenges (look – I used it in another sentence and made it a negative and everything), change how Little J is perceived.  He is no longer swinging from one extreme to the other.  It is increasingly apparent to the stranger in the street that he is disabled and has complex difficulties.  And I am not claiming that it is a bad thing.  In some ways it makes the day to day so much easier.  It will stop the eye rolls as we get in everyone’s way on a rush hour tube.  It might even mean that we actually get let on the bus when there are already two pushchairs on, rather than being given a dismissive hand wave.   But it will be a change.  And for the first time, we will regularly have to experience the discomfort of strangers around disability.  Because no matter how idealised I want to be, I know that disability, particularly cognitive disability, does make some people uncomfortable. But we are up for the challenge.  We’ve got our biggest smiles practised and in reserve no matter what.  We are ready, and we are officially stepping out of the middle.  Alright, we’re doing the backwards worm out of the middle.

And yet again I’m moving slowest.

Because, you see, when I really think about it, Little J doesn’t care how he is perceived, so why should I?  In fact, when faced by preconceptions I should be….no, I AM just incredibly proud. Because I believe that my funny peek-a- boo loving mini egomaniac has the ability to change those perceptions. Because I think he is just as fabulous as he does.  And if people don’t see that?  Then what does it matter, because at the end of the day….well at least we are happy.

Monday, 28 October 2013

The Things I Shouldn't Say

There’s an old saying that you should never discuss sex, politics or religion in polite company.  Well I’m afraid I am going to have to assume that my little readership is of the impolite variety.  Simmer down now, those of you shifting to the edge of their seat hoping for something saucy.  I’m sorry to disappoint, but it’s no-go area number three I am headed towards.  Politics.  I know….yawn. 

But bear with me.  It’s really in everyone’s best interests that I write this down.  I think there is only so many more ‘uh huh, yeah that’s really interesting’ that friends and family can do, eyes glancing longingly to the door.  You see, I for one do find politics quite interesting. I don’t know anywhere near as much as I should, but I am not in the camp who feel that, ‘politicians are all the same’ or that, ‘nothing ever changes.’  I believe firmly that irrespective of party, the right policies can bring about social change.  And when those policies don’t work, it’s a little, well, disheartening.

Since having Little J, my exposure to statutory systems has been higher that I could ever have expected. When you have a disabled child, you have to take off the latches, open your doors and accept that the shiny shoes of the state are going to come traipsing across your new carpets.  And most of the time, it will be a positive experience.  But there will be challenges and frustrations. Little niggling stains of discontent that get left behind.

In the early days, I would hear the same phrase again and again from the parents of older disabled children. ‘You have to fight for everything.’  To be honest, I didn’t really believe it.  I thought that the system would make sense and would step in when needed.  I thought that if I did my research, filled in every form perfectly and put on my bestest smile, everything would be fine.  I wanted everyone to want to take my phone calls and think how nice I was. I wanted to be liked.  I still do.  But things have changed over the last few months. I am suddenly aware that I have started using phrases like ‘can I just be upfront’ a lot and that I am not exactly topping the Christmas card list of an increasing number of public sector professionals.  The smiley doodles on my notepad have been replaced by the phone numbers of disability advice lines.  You see, I learned.  And it was an exasperating lesson.  

I used to think that if I had a bigger brain and more credentials I would have quite liked to be a politician.  However, I have realised that my exasperation levels really aren’t up to it.  Ignoring the fact that I wouldn’t get any votes and bribing people with fun size Mars bars is frowned upon, there is the fact that I would become worn down incredibly quickly.  The last few months have made me realise that the system can feel truly non sensical at times.  I would just become a rambling crazy lady, wandering the streets with a big flag with the word ‘logic’ magic markered on, ready to waggle it at all who opposed me.

My issue has nothing to do with individuals, or even policy.  In many ways, it’s about gaps in policy.  Things that I thought would be there and were in fact, missing.  I know, I know…it’s tough out there.  I am not immune to the mood of pessimism dripping from the public sector.  Budgets are being cut.  We are in a time of austerity.  But I still believe that there are things that can be done. 

Please also don’t think that I am ungrateful for what it in place.  I had the sheer good fortune to win some existential lottery and be born in a democratic country.  A country that has a social support system in place.  But by its very nature, democracy requires the input of the people. So here’s my two pennies worth.  Understand that this is just based upon our experiences.  The little gaps in the system that we have stumbled across.  The ones that suddenly trap your new stiletto heel in the middle of a busy street and leave you splayed across the pavement trying to act like it’s all ok and like you don’t want to burst into tears.  These are those ones.

I’m not here to whinge or rant. I do not represent other families and I am not claiming to be right.  This is just my perspective.  What policy feels like from the sharp end.  How things can look from the ground up.  I am not one of those amazing fighters who know the ‘Children and Families Bill’ by heart and tirelessly work to bring about change.  I just don’t have that level of strength in me.  I am not a warrior mother or a game changer.  I’m just an irritated person with an old sheet, a magic marker and a penchant for arts and crafts. 

But, for what it’s worth, here are my bug bears.  The three things that I wish could be different:

1)     ‘We want to help people who work hard and get on.’  David Cameron speaking about the government’s childcare scheme.

Fabulous.  Thank you very much.  I’d like to go to work please and support my family and ensure that my son has everything he needs.  It costs a lot to raise a disabled child you see.  He’s now medically stable and very social, so I’m sure he’ll love nursery. I enjoy my job and it helps me to stay sane along the way. Ok, things are a bit tricky and we have lots of appointments, so I’ll see if I can go part time.  I mean three days a week at nursery should be do-able.  It’ll be great for him to mix with other children and of course we expect to pay the normal, bank busting fees.  Sorry?  What’s that? What do you mean there’s nowhere to send him?

Let me explain…

In ‘right way up land’, it can (note I said can!) all be very easy.  You get pregnant.  You go on maternity leave.  You go back to work.  You put a child in nursery.  It obliterates most of your salary, but hey ho, that’s life.  You drop them off at 8 and you can pick them up at 6.  (Yes, I know parents are probably screaming ITS NOT THAT BLOODY EASY at me right now).  Yes, things can go wrong and life can swing off the track, but there is a route, a plan and a way to pay your rent or mortgage.

In ‘upside down land’, it’s all a bit complicated.  When you have a child who needs 1:1 care at all times, not only to be safe, but to fulfil the legal and insurance requirements of a childcare setting, the track ceases to exist anymore.  If you are lucky enough to be a top earner, you may be able to afford a special needs nanny.  If not, you are looking at a nursery.  Only you will not just be paying nursery fees, you will be paying the salary of a 1:1 carer as well.  Which is more than double standard nursery fees and pretty much the same cost as a nanny.  Oh. 

Ok, well you’ve heard about special needs nurseries, so what about them.  Well, they are not there as a private option.  In order to attend, your child must have a Statement of Educational Needs in place, which most boroughs are incredibly reluctant to begin issuing until the age of two (and then it takes a further six months).  Even then, in our borough, most children receive only fifteen hours per week, term time only until the age of four.  There is no option to pay to top this up to work-friendly hours, as you would in a mainstream nursery.   So unless you live next door to some very accommodating family members, you can kiss that job goodbye.  Four years is a big old gap on the cv in this competitive post-recession world.  So you are, most likely, saying goodbye to the career that you once had.

There is one other option.  Most local authorities have a pot of money to provide the 1:1 funding at a mainstream nursery.  But there simply isn’t enough of it.  The initial offer for Little J was SIX hours per week.  Half a day.  Well, I suppose I could get a paper round. After a very hard fought battle and lots of letter writing, we got that up to ten hours per week.   That is the full extent of our childcare.  Every other option has been exhausted.

The reason for my frustration around this issue isn’t the decisions of our borough, or the impact upon our family.  It is the fact that it just makes absolutely no logical sense.  I am (was) a tax payer.  Put enough support in place for tax payers with disabled children and they will pay into the system.  Increasingly so as time goes on and their careers progress. Fail to do this and in all likelihood they will be forced to claim benefits.   Careers will be lost and the ability to meet the enormous expense of a disabled child will not be there.  It’s that simple really.  Yes, 1:1 support in nurseries costs money, but to not provide it is, in my opinion, false economy.  I have been sat down more than once and asked what benefits I intend to claim – no one has asked me how they can help me get back to work.

I also want to be clear that this is an issue of choice.  I am not saying that parents of disabled children should be pushed into working.  We are very lucky to have Little J in a position where he is stable enough to go to nursery and he will benefit from nursery.  We wouldn’t consider sending him if that wasn’t the case.  Our situation also doesn’t reflect that of all disabled children.  Many need their parents at home 24/7 as full time carers.   Others are able to attend a nursery on a standard 1:3 staff ratio with no problems at all.  However, when a child is able to attend a nursery setting, but a 1:1 has to be in place – there just are no choices.

We are clearly not alone with this, as demonstrated by a recent article in The Guardian. 

There has been a lot of talk around encouraging people into the workplace.  I just hope that eventually national policy will extend to recognise us too.


2)     ‘Just put a pair of underpants on your head, stick two pencils up your nose and say ‘wibble’’  Blackadder Goes Forth

The first time that ‘respite’ was mentioned to me it was by a very well- meaning public sector professional.  She saw beneath the forced smiles, excessively cleaned flat and the good biscuits that come out for visitors.  She saw that I was exhausted. And so, she referred us to the disabled children’s team within Social Services.  To a lovely social worker, who came round to assess our need for support.  All of the people involved were kind and pleasant.  But when I read the assessment that was produced, I felt a flash of hurt.

Because the forms that are used, the wording that is used focuses on the ability of the parents to care for their child and to ‘meet their needs.’  They are not disability specific forms. They are the forms used by social services to assess any child in need.  Nothing negative was said, but the form itself bothered me. When you have a disabled child, it is a very specific situation, with specific impacts.  It impacts the entire family.  Surely there should be a more holistic approach to assessment? 

It bothers me because there is an implication behind this.  If the need for respite is based upon the parent's ability to ‘meet their child’s needs’, then the suggestion is that in order to receive support, you must be deemed incapable of doing that.  And that is a very frightening thing indeed. 

Yes, the ability of the parent to meet their child’s needs should be looked at.  It is vital in fact. I get that. But shouldn’t other things too?  Is it not relevant that my son gets up at 3am every single morning?  It is not important to look beneath the façade and see that, yes, the floor may be freshly mopped, but I did that with a 23lb child with low muscle tone on my hip?  We receive a very low level of respite, but I know from other families that we are lucky to even have that.  The whole way that the forms are designed means that they do not recognise the full needs of a family coping with disability, because they are designed to be used for a multitude of purposes.

So my suggestion is this.  It is probably a little simplistic.  A little naïve.  But…how about a new form?  One for families with disabled children specifically.  Yes, there will be some overlap and sometimes more than one form may have to be used.  But maybe, just maybe it might make the process feel a little better.


3)      ‘There is nothing consistent in this world but inconsistency.’ Jonathan Swift

Alright, alright, I was struggling for a quote on this one and had to Google it, I don’t really know Jonathan Swift quotes by heart (yet Blackadder, not a problem – seems I really am a product of a Netflix loving society.)  

My issue here is around consistency.  Or lack of it. Inconsistency is something that you become aware of very quickly with a disabled child.  Live in one place and you will get so much childcare, so many hours respite, all the equipment your child needs.  Live in another and, well, good luck.  The services that our children are dependent upon are determined at local level.  And with the move toward GP commissioning, NHS services are following suit.

Since the advent of ‘Big Society’ (no, I don’t really get what it all means either), there has been this shift towards increasing levels of local power.  It can sometimes feel a bit League of Gentlemen.  Local policies for local people.  Only, sometimes issues are bigger than local government.  Someone needs to step in at a national level, initiate policy and allocate appropriate budget to ensure that positive change happens. 

Because, let’s face it, facilities for disabled children aren’t much of a local vote winner.  They cost money, the benefit isn’t seen by the majority of people and we don’t make up much of the vote casting population.  (Oh, and beware of making services too good in your borough or you may start seeing dust clouds headed your way.  Cars and trailers with wheelchairs strapped to the roof ready to take up residence).

The difficulty with local systems, in my opinion is when there is a need for significant change.  Because it is very hard to bring about.  With our childcare issue, I initially approached our MP and, off the back of this, our concerns were passed on to a national department.  The response that came back - ‘it’s up to your local authority.’  Only, I doubt very much that our local authority has pots of budget lying around to initiate a radical change around how childcare is provided for disabled children.  National policy has to lead the way.

When we moved to our house, we focused on area, not borough.  Foolish.  We had no understanding of how the system worked and that we lived smack on a tri-borough border.  Yes, we may be geographically close to certain areas and facilities, but they are irrelevant to us.  I am now acutely aware of where the borders lie. If we lived five minutes in either direction, we would have a completely different experience.  Would it be better or worse?  Who knows. 

That border will always be there and there will always be some inconsistencies in services from one area to another.  But, at the end of the day, geographically speaking, we’re a pretty small country – I can’t help but feel that every child with additional needs should receive the same level of support, irrespective of where they live.

So, there you go.  I promise to stop now all political rambling. 
I actually feel a tiny glimmer of positivity about all this.  You see, change is coming and I hope that it will be for the better.  Currently, proposed changes to The Children and Families Bill are making their way through parliament.  I feel this positivity not because of blind faith, but because I know the resolve of the amazing families who work so hard to feed into it.  The ones who do a lot more than rambling and whose feedback will help to shape the future for all of us. 

Exactly what that future will look like remains, as so many things in our life do, a bit of a mystery.

In the meantime, I’ll just keep living my life by the wisest quote I know,

Just keep swimming.’ Dory, Finding Nemo.









Wednesday, 11 September 2013

Presents and Promises

I’m unforgivably late with this post…

Zebra partied a little too hard..
You see, my little boy turned two last month.  Woop.  Cue party popper!  I mean, given where we have been at some points in this journey, that’s got to be firework worthy in and of itself.  Well, alright, it was barbeque worthy and that’s almost like a bonfire, just a bit wimpier.

So why have I taken so long to publically celebrate this milestone?  Well, birthdays are a bit of a funny one when you have a complex child like this boy of ours.  One the one hand, they are a lovely, exciting celebration of your child and all that they are.  On the other hand, they are a short, sharp elbow to the ribs as you miss a whole new load of ‘developmental milestones.’ And turning two comes with that extra little bite.  It’s a transition.  You no longer have a developmentally delayed baby.  You have a disabled child.

And so, as part of that, as I am sure every parent does, you think about previous years.  You wonder where the time has gone.  You marvel at how things have changed.   Although that’s not always an easy process with a developmentally and medically challenged child.

I, of course, cant help but think back to his birth.  I mean, that’s what the day’s about remembering right?  The clue’s in the name?  Hmm.  Funny one that.  Because I spend a lot of the time trying to let go of his birth.  Trying to convince myself that it just CAN’T be.  That with two MRIs showing no signs of brain damage, it just can’t.  The fact his oxygen levels dropped to the point my labour had to be halted with drugs is not the cause.  It just has to be a really, really unfortunate co-incidence.  But every now and that little woodpecker of doubt starts tap tapping away at logic until it gets itself into a frenzy.  But then logic gives it a swift right hook.  And logic is pretty damn hefty. Because I know it is deeply unlikely.   Firstly, Little J has minor muscular abnormalities that cannot be explained by a brain injury.  Then there is the glaringly obvious chicken and egg-ness of it all.  Bad births and neurological problems don’t necessarily follow that order.  Did the birth cause the problems, or did the pre-existing problems cause the bad birth?  Probably the latter in our case.

'You came first.' 'No, you came first.'
Well.. actually you're a rooster.'

But, as much as I have let go of the unlikely implications of that moment, his birthday will always remind me of the hours after he was born.  Of the implications that came from something else – from a realisation.  Despite ringing alarms and running footsteps, when Little J was born, when I finally had him in my arms, I wasn’t initially worried.  He wasn’t in special care, he wasn’t under constant monitoring.  In fact no one seemed remotely worried about him.   

But later.  When we were alone in the dark, as I fumbled for the light that the porters hadn’t bothered to place in reach, I knew.   As I gave up and tried to comfort him by the light from the corridor of the postnatal ward, I just felt it.  Something was wrong.  Very wrong.  It was the way he spasmed in my arms.  That jerk that would later be dismissed as a ‘strong moro reflex’.  No.  It seemed more than that.  It didn’t stop not matter how close I held him.  It was the way that he squirmed.  At times he seemed pained, panicked. I just had such an overwhelming feeling that all was not as it should be.  Given the number of drugs in my system and lack of sleep, it could be called an incorrect memory.  Except for one thing.  One thing I remember with crystal clarity.  Because I said it out loud.  I whispered it to him in the dark, trying not to wake the other mothers behind the flimsy blue curtains next to us.  I made him a promise.  I promised that no matter how bad it was, no matter how bad it got, we would always love him and always take care of him.  I had absolutely no idea what ‘it’ was.  And to be honest, in the bright light of the following day, I thought I had acted completely erratically.  It would be six months before I thought back to that promise.  Six months before I realised how very important it was.

How things had changed a year on from that day.  A year ago, when Little J turned one.  When I think back to it, I feel like I am outside looking in.  I don’t even recognise myself.  At that point, he wasn’t doing well.  We had been released from hospital because, quite frankly no one knew what else to do with us.  He was clinically stable, but having up to 40 ‘episodes’ per day of full body muscle flailing or dystonic muscle spasms.  He was developmentally stalling, but medics weren’t willing to call it a delay yet.  They were blaming long hospital stays and disruptive muscular problems. They were giving us hope of him catching up – we weren’t sure.  He was unpredictable.  Mr Google was not being kind to us.  We were on the cusp.  Constantly waiting for another test result.  Thinking this might be the one.  There might just be a way to make him better! 

I knew what was coming though.  What turning one would mean.  You see, Little J didn’t have developmental delay.  He essentially developmentally froze.  He hit every milestone until the age of six months.  Then the symptoms started and he just stopped developing.  Having read about genetic disorders like metabolic conditions, I know it’s not that unusual.  But it’s a tough one for doctors.  They are balancing the point of developmental intervention with potentially paranoid parents.  But when you are in that situation, twelve months old is a particularly cruel place to be.  It’s the tipping point.  It’s when a whole new load of milestones should be met.  When the doctors just can’t deny it any more.

And so, my little boy’s first birthday really didn’t go as it should.  We had a lovely party for him at the weekend, although not many people knew that we had barely made it out of hospital to be there.  We were still in the ‘keep in quiet and don’t scare people’ stage back then.  Guess this blog kinda blew that approach out of the water.  But his actual birthday.  The day that so many parents obsess over making PERFECT.  Well I screwed that right up.

We had escaped hospital the day before.  I was exhausted after several nights of open plan ward fun and had the additional joy of picking up a hospital grade cold.  But, we had pre-booked onto a course of fun baby activities.  For anyone who hasn’t had a baby, if you do, you will get bombarded with flyers for these.  Courses of weekly baby get togethers where you pay a stranger a fairly ridiculous amount of money to wave a bit of crinkly fabric and a puppet in your child’s face and call it ‘developmental.’  I had lost a fair bit of faith in this after quietly telling the woman in charge about Little J’s problems and wondering if she had developmental advice.  I mean, that was what this was all about right? Rabbit in headlights was an understatement. She looked like I had shone a spotlight on her, handed her a microphone and asked her to perform a rendition of Cats.  In French.  However, Little J LOVED this part of our week.  There were group songs and stories.  He would laugh his little head off non stop.  And normally I was fine to be there.

Until that day.  There was a point in the session that I knew was coming.  Every week, the activities would cease for a break to enable parents to ‘get to know each other.’  I knew everyone would look at us with sideways glances.  Parents with children under the age of one can be hideously competitive and we were fabulously reassuring to speak to.  I knew we would get the, ‘phew, my child is doing better than yours’ look.  I knew that the first question they would ask would be ‘how old is he?’ I had answered that so many times before.  Easy - eleven months.  Eleven months I could say.  I mean not being able to stay sitting up or weight bear at eleven months is almost justifiable right?  But to say that he was a year old - The age that parents associate with walking.   To say those words was to accept that my child had significant developmental problems.  The issue that doctors had spent the past few months denying and were about to backpeddle furiously on.  Having read about the conditions he was being tested for, the additional of developmental delay ramped up the severity level significantly.  To actually say the words ‘he’s one’ meant so much.  No, I just wasn’t ready to say those words.  I wasn’t even a fraction of the way to where I am now.  To acceptance.  So what did I do to my happy, laughing boy at his favourite event, on his first birthday?  I picked him up and walked out.

Don’t worry – I don’t lie awake at night thinking that he will one day be telling a psychiatrist about when his mother ruined his special day, caused those pesky rage issues and made him answer ‘a pickaxe’ to every card on the ink blot test.  No, I know he was just as happy getting endless guilt riddled cuddles in the coffee shop down the road.  I know he won’t remember anything about the day he turned one.  But I always will. It was the day I let fear and self-awareness take something away from us.  It won’t happen again.

And so, for so many reasons, birthdays come with a range of emotions.  I wasn’t really sure how to feel about Little J turning two to be honest.  Some of the little things about milestones can be the ones that get to you.  I mean when your child has been developmentally frozen for 18 months, gift buying is a tricky experience.  It mostly involves walking round the 6-12 months sections of shops going, ‘gave him that a year ago, not ready for that, keeps trying to eat that.’  And if you plan to go for a special needs toy, may I suggest a lottery ticket first?

So, I was pretty undecided on how to feel.  We had planned a barbeque (which was very fantastic, thank you to all who came.)  I had braced myself to feel a little stab of heartbreak seeing him tentatively sitting on the floor, not running around as most two year olds do.  But do you know what?  I felt, and still feel…absolutely fine. Bit of a shocker that to be honest.  I was expecting the words, ‘he’s two’, when answering the perplexed stranger peering into the buggy would bother me.  They don’t.  In fact, they make it easier.  Because they remove any element of doubt.

My son is disabled.  He really is.  There’s no denying it.  No one is going to produce a magic pill and make that go away.  And for the first time we got to celebrate a birthday for our boy.  Our real boy.  A birthday where every single person in the room knew exactly what was going on.  Where it was ok for him to be different.  A birthday where we weren’t watching his every move, focusing on him ‘catching up’.  Answering people’s questions with half-truths and non-committal maybes.  Anyone who came to both Little J’s first and second birthday will have noticed that there hasn’t been much of a change.  Taller, yes.  A sudden rush of blond curls, yes.  But developmentally?  Well, those same cushions are behind him in sitting.  He still keeps falling backwards. Still can’t get himself up.  The developmental changes are so small they are hard to even determine.  But take a look at his parents and you will see a pretty epic change. 

So despite me offering him dodgy presents and failing to re-fill the crisp bowls once, Little Js birthday was a very happy occasion. He had a lovely time and the fabulous gifts that he got from everyone else compensated for our efforts (apart from the plastic eggs we got him – totally inexplicable hit.)

I can’t claim that the little things will get better with the years.  I’m afraid I am not a very good party planner and I will probably always wander hopelessly around the same shops. I don’t have very much to give.  

Not much except a promise.  Now, then, always.