Thursday, 18 September 2014

Woods, trees and everything in between

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Tuesday, 2 September 2014

Chillin in the long grass

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

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

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

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

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

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

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

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

Yeah, better not to eh.

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

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

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

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

There’s just no need to do it alone.


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