Saturday, 16 November 2013

The speech of Ummms.

Introductions can be awkward at the best of times. Unless you're in the hands of a skilled social butterfly who seamlessly brings people together with charm and ease, there's always that little silent moment following an introduction where you wonder who might speak first after the flurry of 'lovely to meet you's' and 'how do you know so and so's'. Will you launch into laid-back conversation with your new acquaintance or will you both be scanning round the room in ten seconds flat looking for a rescue buddy, a passing canape tray or willing your phone to ring so you can make a polite exit?

As a natural-born introvert who somehow ended up in the world of PR (I know, don't ask...), oft surrounded by the gregarious and generous of voice and wit, I had to leap the pain barrier and force myself to get really good at filling that awkward little post-introduction moment. Knowing what to say and how to put people at ease in conversation is just all part of the day job, even if deep down I'd far rather be absorbed behind the covers of a good book, than making small talk with strangers. Over the years, it became easy. Second nature.

So it has come as something of a surprise that introducing Orange to new people is causing me a major conundrum. For a good long while he was still small enough that he was just like any other little baby in a pram, tucked up inside and usually asleep, it was hard to tell there was much different about him so there was no need to make any grand declarations other than 'this is Orange'. But now?

Now, Orange is two and a half. He's two and a half but he can't toddle about leaving a trail of destruction in his wake. He's two and a half but he can't interrupt a conversation with a pointed 'mummy, mummy, MUMMY!'. He's two and a half but give him a Brio train set and he'll bring each little wooden train right up to his face and examine it in great detail but he won't know to push it along the track. He's two and a half but he has no idea what to do with a bread stick or a chocolate button, nor could he chew them.

Orange is discernibly different. Not just in his delayed development but in himself. His quirky little 'knocking at the door' and 'milking a cow' hand movements, over-enthusiastic vocalisations, bendy, floppy little body and wacky little eyeballs mark him out instantly as a child definitively set on an atypical path in life.

When we meet new people who have no previous idea about Orange's differences, I am acutely aware of a need to fill that gap after the 'this is Orange'. Maybe I don't need to. I could, of course, leave people wondering. But stepping into their shoes I feel their questions rising and I want to counter them. I see their double-takes and I want to pre-empt any awkwardness they might feel by having to ask. I sense their concern and want to spare their feelings even if at the expense of my own.

If I don't provide a fitting suffix for introducing my son, I'm leaving open a huge elephant in the room that I don't want people to feel they have to ignore, pussy foot around, or avoid asking questions about. I want to talk about Orange and I want to talk about his difficulties, in as positive a light as I can. After all, if disability isn't talked about, it remains taboo. And once it has been talked about, the air is free to be filled with regular conversation, laughter, chat, and enjoyment of the personalities in the room, including Orange. Those who know him will tell you he is a really charming, cheeky and funny little chap and it is this I want you to see.

But knowing what to say to satisfy the immediate and natural curiosity peaked by Orange's idiosyncrasies is a puzzle I haven't solved yet. I've toyed around with a few things but none have yet seemed fitting and most end up in a pretty incoherent rambling speech of ummms:

'This is Orange, he's, ummm, he's two, but he's not, well ummm, what I mean is, he's two but he's developmentally delayed, because, well, ummmm, we don't really know why but he can't walk and, er, he's not talking yet, and he's really fine, yes, ummmm, he's fine but he also has epilepsy and he stops breathing and, ummm, sorry, you probably didn't want to know that, I didn't mean to scare you, yes, ummmm, this is Orange...'

It pretty much always goes something like that. I haven't yet found a graceful and easy way of introducing Orange. Certainly without saying 'ummm' a hell of a lot. I know I'm not the only parent of a child with additional needs to struggle with this. After all, we really just want people to get to know our child for who they are, their personalities, likes, dislikes, quirks and charms. Without a diagnosis it's even harder. I can't say 'Orange has autism' or 'Orange has cerebral palsy' to explain his differences.

I could brush over it and move on, but I want people to feel that it's ok to talk about differences and disabilities. It helps the world make sense of it. Understanding leads to acceptance. So to anyone I might meet one day with Orange in tow, I apologise in advance for the speech of ummms. I'm working on it :)


  1. Great post. I have similar with my son except he does have a named syndrome though so far people we have met generally have never heard of it. He is also completely Deaf so I find myself often having to say to the strangers trying to engage him in a conversation "he's completely Deaf", then the conversation could be " oh mr tumble is great" or "I know some makaton" ad infinitum......

  2. Lovely post and a topic I have been mulling for a while, that of obvious vs invisible disabilities. Natty has DS so everyone see immediately but by the same token they bring their own assumptions to the table. It's OK to umm and I think its good to talk. I love your attitude. H x

  3. Thank you both. It's a tough one isn't it? I know I probably over-compensate to account for the potential embarrassment or awkwardness of others, in that I'm worried they might be upset or unsettled on our behalf, and they needn't be, if that makes sense!