Wednesday, 15 February 2012

What's wrong with him?

The man who served me today at the McDonald’s drive-through (No, my healthy eating plan isn’t going so well!), leant out of the window, into my car and asked;

“What’s wrong with the baby?”

Initially I pretended not to hear him, but insistently he asked again:

“What’s wrong with the baby?”

How exactly am I supposed to answer that?  This is the point at which a diagnosis would really help; a simple one word answer that summed everything up and ended the rather inappropriate conversation there and then.  

In reality, what did he really want to know?  That Little H has an unusual rearrangement of his chromosomes? That he has a severe cortical visual impairment that effectively leaves him nearly blind?  That he is severely globally developmentally delayed and functioning at about the age of a 6 week old baby despite being nearly two?  I doubt it.  His real question, was ‘Why does he have that tube up his nose?’ as the myriad of other difficulties H has are not immediately obvious.  In the end I said “Epilepsy” which explains nothing really, as NG tubes aren’t a given in children with epilepsy, although it is in part responsible, since H lost his ability to swallow safely after a particularly bad run of seizures requiring heavy sedation for a couple of weeks.

Anyway.  My point is – I hate that question: ‘What is wrong with him?’  It’s not, as you might imagine, that I am insulted that someone is implying there is something wrong with my son, that he is somehow less than perfect. I know that that isn’t really their intention.  It may be out of kindness, concern or pure nosiness and it is a clumsy way of wording it I suppose, but the real reason I hate that question is because I genuinely never know how to reply. 

I was asked the same question, in a more polite way, later in the day when visiting a potential school for H; “What’s his diagnosis?”  and “What are his educational and medical needs?” It all means the same thing.

What’s wrong with him?

And I find myself listing medical issues, missed developmental milestones, impairments and difficulties; all the things that are ‘wrong’ with Little H and all the things he can’t do.  It’s horrible and what’s worse is how I detach myself from the whole situation and I simply reel off a list of words.  Those words don’t sum up how his beautiful smile lights up the room or how he laughs to music; they tell nothing about how he loves his feet being played with and enjoys flashing lights.

There was a time, about a year ago, when I was obsessed by getting a diagnosis, but I don’t worry about it that much anymore.  It is at times like this, however, when I am required to focus on all the negatives, that I think a diagnosis would help:  A neat little label that the Head Teacher could put on his form; a one word summary that explained it all. 

And I could instead tell them all about H’s infectious laugh and how much he loves swimming.