We were out with Heidi the other week, and met a family who had a little girl, a couple of years older. As is often the case, she came straight over and had a good old look.
“What’s that?” she said, pointing to Heidi’s tracheostomy.
I could see her mum look a little unsure, but I encouraged more questions, explaining each one in the most straight-forward way I could; her trachi is a little plastic tube that helps her breathe, and no it doesn’t hurt; her feeding tube is like a special straw that goes straight in to her tummy to give her milk ‘cos she can’t eat like we can, isn’t it amazing?; yes she can see you, even though can’t talk back she loves it when people chat to her.
And that was that, very simple, all she needed to know, and she carried on with her day!
Kids seem to have this great ability of accepting others for who they are. Yes Heidi is different, but not it a bad way – in their eyes that just means that they tailor their behaviour to suit her needs, often making a fuss of her, bringing her toys, and tickling her to raise a smile.
They don’t judge her for what she can’t do, they don’t see her diagnosis, and more often than not they see her equipment as being “cool”… especially the hoists, I mean, who wouldn’t want a giant swing in their living room?!
I think as we grow older, we sometimes lose the innocence that children have, and worry about asking questions, so we stay silent.
I can’t speak on behalf of other SN parents, but I know I would much rather get a smile and some questions, rather than feel that someone is just looking at us.
The best encounters have been when strangers have simply asked what Heidi’s name is – no need for anything more than that, it starts the conversation, breaks down the barriers, and I’m more than happy to chat away.
People do sometimes get it wrong though, and I’m not surprised – it’s a minefield of political correctness these days. A couple of hints though for anyone who may want them…
Try not to start a conversation with “what’s wrong with…?”.
The first chap who said this to me threw me off-guard completely, possibly as he said “what’s wrong with him” as Heidi was sitting there in a pink top and clip in her hair.
It upset me (not the boy bit, I found that quite amusing). There’s nothing “wrong” with our children – yes, they have extra needs, yes they have challenges, but they aren’t faulty.
They are amazing.
If you’re unsure what a piece of equipment is, just ask, it’s better than guessing.
In a rather busy hospital waiting room, Heidi needed suction – now there’s no being discreet when it comes to switching the suction machine on, and whilst it used to make me feel self-conscious in the early days, I now couldn’t give two hoots.
Heidi needs it, so we use it.
Anyway, I could sense that we were being watched, and when I had finished suctioning, a nearby gentleman piped up with “is that one of them defibrillator things?” in a pretty loud voice.
Erm, nope! I tried to explain what it was, but couldn’t really get a word in over his comments of “poor thing, poor thing”…!
Which leads me to another hint – don’t feel sorry for us.
Life can be challenging, sometimes we are tired beyond belief, not sure how we’ll make it through the day, but we (again I don’t want to speak on behalf of everyone else) don’t want pity.
A little empathy yes, but please try not to do the head tilt (you know what I mean!) and feel sorry for us.
Instead, offer to make us a brew and tell us we’re doing great!
So, let’s try and learn from our children, all of them, whether with or without additional needs. They keep life simple, see the good in things, and accept everyone for just being themselves.
Oh, and my favourite question so far from a little person – “can Heidi have beer through her tube?”. No sweetheart, babies (she was 1 at the time) don’t drink beer. But maybe when she’s older…