"The Talk" part 2

So, it’s late in the evening and the boys and I are chilling on the floor in the lounge. They’re both calm and happy, so I take this as my opportunity to have ‘the talk’ with them. Out of habit I talk to Harlan first, asking him if he wants to know why his brother struggles to talk and his tummy doesn’t listen to him (code for: Malakai still wears a nappy at the age of 5 years)?

Harlan says ‘yes’ and I internally kick myself; speak to Malakai first fool, he’s the one with the Down syndrome! So I turn to Malakai and say, “Hey babe, you know how we visit Karien, Susan and Nadine every week (his therapists)? And you know how you sometimes struggle to speak clearly?” Malakai nods.

So I jump in with both feet and pull out my iphone – yes, you heard me. I follow a number of Down syndrome organisations on Facebook, so open them up and show Malakai and Harlan some pictures of the young kids, “Kai!” says Malakai as he looks at the first child, obviously thinking he’s looking at himself. I take this and run with it, “Yes, you see, there is a little boy that looks like you babe; see Harley? This little boy looks like Malakai a little bit?” Harlan nods. So I go through a few more pictures and show the boys, explaining that there are many little children who look a little bit like Malakai.

“This is because Malakai has Down syndrome,” I say as nonchalantly as I can muster. “You see guys? And this is the reason why Malakai needs help to talk clearly and his tummy doesn’t listen to him. Because he has Down syndrome. But there are many little kids with Down syndrome, see?”

”Like my brother?” Harley asks? “Yes angel, like your brother. And there are many brothers and sisters in world who are like you, with a brother or sister with Down syndrome.” This, I think flies over his head a little…

“So,” I soldier on while I still have their attention, “This is why Malakai is a little different, because he has Down syndrome. Can you say Down syndrome?” Harlan says it and Malakai tries. “And, this also means that Malakai has a different set of rules to us Harlan. You, me and daddy – we don’t have Down syndrome and we have a set of rules. And Malakai and other children with Down syndrome – they have another set of rules…” But by now the kids have both lost interest and my words are pointless.

So, we’ve taken a step towards naming Malakai’s learning difficulties, and I will have to talk about it often and in passing so that it becomes part of our family’s (and the kids’) understanding of who we are.

I am trying to tread carefully between defining ourselves as a family touched by special needs – it is an integral part of our lives, of course – and also carrying on as normal, because although Malakai has Down syndrome, it is not the be all and end all of our lives. Not at all.

So it’s kinda like wearing glasses – you know you need them, you can’t function optimally without them, but they don’t make you who you are. You have them on every day, they go everywhere you go, you never really stop ‘seeing’ them, but they aren’t uncomfortable or embarrassing or horrible or anything – they just are.

That is the balance I am trying to strike between the fact that yes, Down syndrome is a big part of our lives and almost everything we do includes it in some way, but that it’s really very run of the mill, okey-dokey, seriously not a laboured and horrible and sad thing at all. Like a pair of glasses, once they’re on, you don’t think about them anymore. They’re just there.

Get it? Got it!