Alexander and Lincoln gave a talk at school just recently about Hope having Down syndrome. Some of the kindy kids were asking questions, so the teachers thought it would be a great way to share about Hope and about what Down syndrome is. It went really well, the boys spoke well and the kids responded really well. The teachers have said there’s been a change in the kids since the talk in feeling like they can include Hope more. What I wasn’t expecting came in a trip home from school not long after their presentation. Alexander, in the back of the car, said to me “Mum, I’m lucky I wasn’t born with Down syndrome.”

I’ll be honest. It caught me so much by surprise, that I didn’t really even respond. It just stayed there as something he said. But I haven’t stopped thinking about it. What was it that he was thinking at the time and how should I have responded?

The thing is, I understand what he’s saying. Having Down syndrome is more difficult for Hope. She has had to work extremely hard to get where she is and Alexander has seen it all. He’s seen the hours of therapies. He’s seen all the work that goes on at home. He sees her every day trying to communicate and not being able to do it the way he does. He’s seen her throughout her days in daycare struggling to keep up with her peers, and now he sees it at school. He sees the kids not know how to respond to her. He sees them sometimes run off to play, leaving Hope behind. So to say he’s lucky, I completely get it. He, more than anyone, can understand it because he has seen it day in, day out. He’s always known he could do more than her. Even as newborns, he was home 5 weeks earlier than Hope (not that he would remember that). But in saying that he is lucky, I wonder, does that mean he thinks Hope is unlucky?

I’m not saying that we are “lucky” to have a child with Down syndrome but I don’t think we’re unlucky for having Hope and I don’t think she is unlucky. But is that how the kids see it? Unlucky?

So what should I have done at that moment? I probably should have asked Alexander why he thinks not having Down syndrome is lucky. I should have explained to him that it’s not unlucky to have Down syndrome but also told him that I understood what he meant. He is only 5 still so I wouldn’t want him to think what he is saying is “wrong” necessarily, but hopefully, it’ll help him to see that Hope isn’t unlucky. This is the reason why we are doing what we’re doing. We don’t want others to see Down syndrome as something bad, or unlucky. We want them to see her as an equal and accept her as she is. Yes, she’s had to work extra hard to do what she does, but that doesn’t make her unlucky, it makes her strong! I wonder if this is language we use often around the kids and I wonder should we use this more. Should we be talking more to the kids about Down syndrome? I have mixed feelings about it. I want them to understand, but Alexander is still young and there’s only so much he will understand. I also think if we talk too much about it, will they start to see her differently. I don’t know that I have all the answers right now, so we’ll keep doing what we’re doing but next time Alexander makes a statement like “I’m lucky I wasn’t born with Down syndrome”, I’m going to talk to him about it. Being silent is not the way to change perspectives.