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.


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  2. This resonated so much for me. Those comments come thick and fast for us, never intended to hurt, they often do. Thank you for linking to #ThisIsMyChild

    1. I find its often the most innocent of comments that can say the most. I'm sure we will have more to come. Very much enjoying reading all the #ThisIsMyChild posts - great campaign!