Wednesday, 28 August 2013

This Is My Child

Beautiful.  It’s the word that now enters my head when asked to describe my son.  And it's theft. Out and out theft.  If you have read the first post on this blog you will know why.

It’s because I had to get taught a lesson by someone far wiser than me.  Because for a
long time, when asked about my son, I would answer with his disabilities.  I don’t really know why.  I mean without a diagnosis, he’s not exactly easy to define.  So why was I so keen to force definitions upon a boy so full of personality?  I guess because it was a ‘get it out of the way’ notion.  Help people to understand. 

It was misguided.  Because actually, the vast majority of people want to understand who my son is.  Not how disabled he is.  And it is my job to tell them.

Parenting website Mumsnet has recently launched a campaign called ‘This Is My Child’.  It is aimed to overcome the myths around children with additional needs and to raise awareness of the issues affecting families.  As part of this, they are linking bloggers together, allowing them to say a little about their child.  Now I do love a good blog hop.  So here goes.  A little about this boy of mine.

This boy is brave.  In his two years he has faced more pain and medical tests than most see in a lifetime. He faces a chaotic, shrill and confusing world each and every day. But when the tears have stopped falling, two glassy wet eyes soon turn upwards.  With the simplest of songs, or the gentlest of tickles, the smile creeps determinedly across his face.  He isn’t overcome by fear of the next episode of pain or sensory overload. He falls into my arms not in despair, but in fits of rapturous giggles.

This boy is patient.  He allows my clumsy attempts to put him into yet another physiotherapy position.  My efforts to drag him through endless rounds of sensory therapy.  His world does not centre on play like most two year olds.  He lets me know of his displeasure, oh yes, he knows his own mind.  But he lets me try.  And in doing so, he is trying too.  Fighting desperately against the muscles that will not obey; those muscles that often move without command.  But he does not let the frustration consume him.   

This boy is loving.  He wraps his arms tightly around me without motive or any hint of manipulation.  He shows his affection constantly.  His wails are prompted by distance, a need to be close.  They are not because he is naughty, or demanding.  You may say clingy.  I see loving.

This boy is forgiving.  He does not punish my mistakes or penalise me when I cannot understand what he wants.  When I franticly ask questions that he does not understand.  He does not throw himself to the ground, or deny me his love.  He lets me try again.  And allows me to fail again. Until finally, I am the one who learns.

This boy is resilient.  He greets every day with a smile. Despite all the pain.  Despite the frustration.  Even at such a young age, there must be a temptation to give in to the challenges.  To stop laughing the day away.  To be overcome by the hardships.  He does not.  His world remains defiantly happy.

This boy does all of these things so much better than I ever could.  Yet he is called less able. 


This boy is mine.  And I am so lucky to say that about a brave, patient, loving, forgiving, resilient boy.  My boy.

This is my child.



To read more about the Mumsnet campaign, click here.

Thursday, 15 August 2013

In Plain Sight

It’s ok. There’s a good chance I’d have judged her too you know.  Maybe. Ok, Probably. 

I’m sure that following the mass indoctrination of antenatal classes, baby books and advice on how a child ‘should’ be raised, a moment of judgement would’ve crept in about something or other.

Honestly, it’s fine. She’s quite used to it.  Enough to wonder what’s going through the heads of those who give her the in depth ‘considered’ stare.  To imagine what they are wondering about her…

Her.  At the front of the bus.  The one taking up all of the buggy space with that unnecessarily huge contraption.  The one making all the grannies put their floral material shopping trolleys in the aisle, where they have to grab hold of them whenever the bus turns a corner.  I mean – did you see that poor old dear clinging onto an exposed pack of custard creams when we went round the roundabout?

How old is that child anyway?  Looks around two, certainly not a baby.  Is a light stroller not good enough?  That thing can’t fold down properly.  What would happen if someone with a little baby got on, or a wheelchair?  It’s just inconsiderate.  She must have more money than sense with something like that for a child that old.  Just look at the huge wheels on it.  It looks like it belongs on a racing track, not the number 89.  I bet it’s the dad that’s picked it.  That’ll be it.  Maybe he’s an overpaid corporate type or a flashy wheeler dealer who compensates for his absence with one-of-a-kind excessively large pushchairs.

Oh great, now the kid’s not even sitting in it.  He’s on her lap making a god awful screeching noise and pulling her hair.  And she’s not even telling him off.  Well that’s going to do him the world of good isn’t it.  I’ll be seeing him in fifteen years, down the shopping centre with can of cider in one hand and paint aerosol in the other.  That’s half the problem these days – no discipline. 

She won’t even put him down for a second, she just clings onto to him.  Look how he’s smiling at the two boys sat over there.  He just wants to go and play with them.  Poor kid.  Is it any wonder we have a childhood obesity problem when mums won’t let their precious offspring so much as stand up on the bus? 

Oh now he’s crying.  No surprise there, the poor thing just wants to get down.  And what’s her answer – she’s giving him a baby bottle.  Laying him down on her lap like a newborn.  And he’s not even trying to hold it.  Well that’s just great for his teeth. I mean, its not exactly hard to give him a sippy cup is it, or at least let the kid hold the bottle himself.  Lazy, lazy, lazy.

Maybe she can’t cope with him growing up.  It’s a bit weird to be honest.  Oh wait, now what.  Really?  She’s putting him into a sling.  Wrapping the poor boy in a big material hug in case he attempts a moment of independence.  Oh yeah, don’t let him walk, don’t use the absurdly large pushchair – attach him to yourself at all times instead, that’s going to help him become a well- rounded individual.

She must be one of those.  All about ‘attachment’.  One who thinks she can change the world through ‘the power of hugs.’

Oh god, now the boy’s crying again.  He cries a lot that one.  Well, I guess it’s to be expected – his dad’s an absent businessman and his mum’s a megalomaniac hippy.  I’d cry too.

They’re getting off.  Phew.  Those poor old ladies can finally park their shopping. I mean, if you’re going to be that inconsiderate, at least don’t do it in rush hour.

Yeah.  I probably would’ve judged her too.  I’d like to think nowhere near as harshly as this, which I promise is written from a tongue in cheek perspective, not a state of deranged paranoia about the musings of others.  But you get the point.

I’m sure I would’ve mentally questioned something about her actions.  As I was battling to get to or from work, trying to squeeze on the packed bus or tube. And at the route of my judgement would have been a huge misconception.  The belief that her actions were based upon choice.

I mean, if it was anything else, something more serious, it would be obvious, right?

It wouldn’t have occurred to me that she was desperately trying to get home from a hospital appointment.  That beneath her little boy’s clothes were the blood specked marks that lie testament to yet another failed attempt at vital blood tests. That she was tired, harassed and feeling every single eye-roll as yet another person tried to get past the pushchair whilst she clung onto a screaming, flailing child.

I probably wouldn’t have wondered if she was ok as we were crammed closer together, as no one offered her a seat. I wouldn’t have thought to hang back and check if she was alright getting such a big, heavy pushchair and a 23lb child up the stairs.

It wouldn’t have occurred to me, not from prejudice but from lack of knowledge.  Actually, lack of basic logic.  When I thought ‘disabled’, the first image that entered my head would be of an adult.  I wouldn’t have asked myself what that person looked like when they were still in their mother’s arms.

I wouldn’t have realised that one day I would know what that looked like so acutely.  That we would be so camouflaged, yet in plain sight.  Living an occasional lie…just for a little bit longer.

So I am telling you.  So that now you know.  So that now you will wonder just a little bit differently.

'If I just stay really still, I'll blend right in...'