This week brought with it some outstandingly cold weather, more turmoil in the global markets, a new England rugby captain (go on Steve) and what looks to be the next President of the United States, but most importantly it brought little Noah's first hearing examinations at Our Lady's Children's Hospital, Crumlin. I am writing this post in two parts, the first is written on the eve of Noah's appointment and the second shall be written post-op as it were.
The Day Before
I am sure it's going to be fine. Why do I think this I hear you probably not asking yourselves? Well, based on my restricted abilities in the field of audio-examination, I think Noah can hear just dandy. When I rattle Conor the Crab or Freddie the Frog, he seems to react to them, his eyes certainly follow them as they dance their merry jig around him. So what is this niggling doubt hibernating in a corner of my mind, what am I basing it on and how worried am I about it? There is one aspect that I cannot escape from at the moment in matters Noah and that is the exaggeration of anything other than perfection and the consequent attribution to Down Syndrome. Allow me to illustrate this for you, I rattle Freddie the Frog at Noah's right ear and he reacts, however I then move Mr Frog to the left ear and repeat the rattle, no reaction. My mind instantly divides like the Jedi force, the Obi Wan Kenobi Muse says that Noah is either bored or tired of this game or simply didn't react for any number of rational reasons whereas the Darth Vader Muse starts to panic that he can't hear in that ear because he has Down Syndrome. Similarly when he drops his toy to the floor (that inicidentally he has held impressively for a good minute or so in his tiny but fearsome grasp), the dark side overpower the rebel alliance by forcing me to wonder if his strength and muscle tone is ok because of the Down Syndrome. Having just re-read my words, I realise how senseless it appears. I like to consider myself a rational man and am not generally one to suffer paranoia, am not overly-reactionary and can usually be relied upon to make a measured decision when required so why are these thoughts allowed to creep in? I have been giving this some serious thought of late and I believe it can be boiled down to two very simplistic points.
1. I am a new Dad who is worried for his little boy.
2. I am assuming that Down Syndrome is a negative thing.
Allow me to expand on these points. Firstly, if the Doctor had told me at Noah's birth that he had a blocked nose or sore throat, I would have worried everytime he sneezed or coughed in case it was hurting him and causing him distress. Noah is still egglike in his baldness and as such, I worry every time the front door opens that the cold will be getting to him. If he hasn't brought up any burps after his bottle, I worry that he may have a pain in his tummy. If he hasn't wee'd on my arm during a nappy change for a while, I worry that the top to bottom highway is congested and traffic is not flowing freely through. Basically, I worry at the exact same level as all newbie parents about things that our own parent's would probably scoff at with a raised eyebrow and a "this generation" type remark. None of these worries are founded in Down Syndrome but I have found that this does cause an exaggeration of the worry where it is probably not warranted.
This brings me neatly around to my second point, that being the assumption that Down Syndrome is a negative thing that should be worried about instead of in fact being celebrated. Why are there such negative connotations attached to 'special needs' or so-called 'disabilities' in society? Is it stemming from looks? Within an image-obsessed society (don't believe me? check out the magazine shelf in your local shop next time you are in there) , the fact that our children look 'different' and don't conform to the 'norm', I truly believe frightens people and this manifests itself negatively into the attitudes of the masses. Does negativity stem from some sort of intellectual snobbery? Perhaps it does. Do the results of an IQ test make you less or more of a person, not a logical thinking machine mind, but a person? In the course of a regular day, it is more than likely that you will encounter people spanning the entire spectrum of intellectual ability, do you register this or only when the person has so called special-needs? When I look at Noah, I see the cutest little boy, not the cutest little 'down syndrome boy'. I don't see slanted eyes, I see Noah's eyes. It is amazing that only when I am away from him do I start thinking about Down Syndrome and the challenges that brings. Principally, the challenges we face are all medically-based and we of course wish we didnt have to go through these nerve-inducing tests but I wonder is it any different for any parent out there? I have never heard of the child who was never ill, who never had to go the doctor and who was able to excel in every facet of life so why are we always measured against an apparently mythical persona? Since Down Syndrome has become a part of my life, I have found myself swimming against the tide in terms of attitude and perceptions well it is time to change that and I am starting now. Any person who has Down Syndrome or any condition under the bracket of 'disability' should be celebrated for who they are and what they can bring to the table, not derided for what they will never achieve nor pitied for how they look or act. I personally see that we as a society have no right to make these kinds of judgement calls about others. I am worried about Noah's hearing exam, I hope he can hear perfectly but if it transpires that he does have some issues in that department then quite simply, so what? We will deal with it like every parent deals with grazed knees, bumped foreheads and streaming noses, we will deal with it because he is our little boy and we love him, we love him because he is himself and whatever else he brings with him is ours to revel in and celebrate. Take it away Ziggy...
This is Major Tom to ground control
I'm stepping through the door
And I'm floating in a most peculiar way
And the stars look very different today
For here
Am I sitting in a tin can
Far above the world
Planet earth is blue
And there's nothing I can do...
End of an Era (in more ways than one)
3 years ago
More Windows XP than X-Wing Fighters but a formidable outfit nonetheless.
