Social Etiquette and Special Needs

‘I think we all have empathy. We may not have enough courage to display it’ – Maya Angelou

We’ve all been there in that situation where you simply don’t know what to say. It’s something you’ve never experienced personally and so don’t know how to go about showing that you care. Every day we’re hearing of people close to us going through hard times – the loss of a loved one, cancer, divorce, the list goes on.

If someone has lost a loved one, often the appropriate statement is ‘I am sorry for your loss’ or ‘I am thinking of you’. When it comes to a celebration, be it an engagement, marriage or birth of a baby, ‘congratulations’ is usually the order of the day.

But what happens when the birth of a baby doesn’t go according to plan and the baby is born with special needs? It was a tricky one with the arrival of our Nicholas. I felt that as more and more people came to hear of the news, they were torn between ‘congratulations’ and ‘my condolences’. It was as if they were divided between congratulating us on bringing our third son into the world and consoling us for him having Down syndrome.

As word spread about Nicholas and he finally came home, we then had to deal with strangers and their input. My favourite is ‘special children are born to special parents’. I don’t feel any more special than the mom raising her ‘typical’ children. I simply do the best I can and every day is a learning curve. Is Nicholas special? Without a doubt, but then again, I consider all my children to be special. I know people are trying to find something nice to say, to somehow justify the diagnosis, but it does get extremely annoying constantly being given the generic response.

I really do believe that people inherently mean well and to this day, I have never had someone say anything maliciously negative to my face about Nicholas. In fact I often deal with people almost forgetting that Nicholas has special needs and say the most ridiculous things. My husband thinks I’m a bit odd, but I almost see it as a compliment. I want to be portrayed as a ‘normal’ family going about things just like everyone else. We don’t hide Nicholas, nor his diagnosis, but the fact that people can see past all that, is a small triumph for me. We must be doing something right!

That being said, it irritates me when I receive comments such as ‘they’re always so happy’, ‘you get to have a baby for longer’ and ‘so they actually can live past their teens?’ I’m always willing to answer others’ questions as I think awareness is so important. But discussing my child’s life expectancy and seeing the incredulous look on their faces when I explain that Nicholas could very well live to his 60’s, does seriously get to me. You’ve only missed the mark by about 50 years!!

My advice to anyone who has a family member or friend with a child with special needs, is to do your homework. The parents will really appreciate your effort of trying to understand and you don’t run the risk of offending them with a comment you deem completely innocent. The last thing you’d want is to imply that something happened during the pregnancy to cause it, when in fact the diagnosis is a result of a completely random genetic abnormality.

Believe me, having a child with special needs does not make me an expert, not even close. I’m merely living the journey along with countless others, all taking it day by day. I’ve always prided myself though on having an above average emotional intelligence and thinking before I open my mouth (often what I think and what I say, are vastly different!). They say that sometimes you only truly understand what a person’s going through when you walk a mile in their shoes. And I’ve had my fair share of heartbreak in the past, which I think has made me more empathetic and a stronger person overall – two miscarriages, the loss of two parents, close family members that have battled cancer and I am now the mom to a child with special needs.

From day one, we saw Nicholas as a baby first and one with Down syndrome second. I am a firm believer that that is how it should be for him and all children with the same diagnosis. However, recently it was pointed out to me, that in my articles and on my website, I was writing ‘Down syndrome children’ as opposed to the correct term, ‘children with Down syndrome’. I was preaching one thing and writing another. I didn’t want the diagnosis of Down syndrome to define Nicholas, yet I was describing him as such. I’ve since made the changes and am making a conscious effort going forward, to not make that mistake again. It is absolutely vital to portray people for who they are as a person and not for their disability.

Some people thrive on the dramatic, others know exactly what to say and when to say it and then there are those who simply take the avoidance route. They shy away from the situation, for fear of saying something inappropriate. That child however, is part of their lives and that family member or friend needs all the support they can get. Actions really do speak louder than words. If you are at a loss of how to show you care, simply drop off a meal for dinner. It will really mean a lot to the family and who knows, your lasagne might just be the comfort they need after a really bad day fielding insensitive questions.