There seems to be a lot of do's and don'ts when it comes to talking about Down syndrome. But Carin Bevan has only one rule: Don't be scared to ask her about her son.
I've had my share of awkward conversations about Jamie. From people getting embarrassed when they say "Down syndrome" to somebody calling him a mongoloid. In his first swimming lesson, at 18 months old, the instructor called him "clueless".
I could have corrected them. I could have hit back with a sarcastic comment. Haven't they read those lists of "things you should never say about Down syndrome"?
If they had, they'd know that Down's is not something my son is, it's something he has. They'd know that it's not something he "suffers" from and that they should never-ever call him a mongoloid, retard or even a "Down's child". They'd realise that people with Down's aren't always joyful, and they'd stop believing that the parents have special gifts. (All parents with toddlers have superpowers!)
These do's and don'ts aren't necessarily wrong. But I suspect the only people who pay attention to them are other parents of children with Down syndrome. And it's completely understandable. It hurts to find out your child has special needs. It hurts to get reminded of his differences, and it hurts when people don't understand your loneliness. So we build walls around ourselves to protect our (and our children's) feelings.
Or so we think. What really happens is that we isolate ourselves even more. We try to control how other people think and speak, instead of managing the way we think and feel.
Some of the best advice I received came from the amazing Sheri Brynard's mother. Don't give words too much power over you, she told me. Don't let words hurt you.
Instead of building walls, grow a thicker skin.
It doesn't mean I'm completely immune to people's opinions. But I'm slowly learning that, unless they're incredibly insensitive (or internet trolls), people don't deliberately set out to offend me and my son.
That lovely old lady who tried to console me by saying that only special parents "get one of those"? There was no malice there. Ignorance, maybe, but mostly love and compassion. The people who ask whether I knew Jamie had Down's before he was born? They're not actually insinuating that I should have killed him when I had the chance. Perhaps they're wondering what they would have done in my shoes?
Of course you do get those really hurtful and stupid comments. Like that swimming instructor who reckoned Jamie wouldn't notice if somebody tossed him into a pool. There's no cure for such foolishness, really, and my snarky comment certainly wouldn't have done the trick.
Yes, I've had my share of weird comments and awkward questions. But I wish I've had more. More people who have the courage to come up and ask me about my son without worrying about my fragile feelings.
Ask away: maybe you'll learn something, while I get to do something I absolutely love. Because Jamie is awesome, and there's nothing I'd love more than to talk about my little man.