Passing the Baton on…the importance of sharing the lived experience of raising a child with Down syndrome

This week, as I was scrolling through my newsfeed on Facebook I noticed a screen shot posted by a friend of mine in America. His name is John and he is dad to the very adorable Owen, who has the coolest flop of wavy hair and also happens to have Down syndrome. After I read this screen shot, I was taken over by a moment of lovely clarity and enormous pride. My mind was cast back to when I first met John online and the enormous impact he had on me when he got in touch.

John and Owen – photo provided by John

I started this blog back in March 2013. Wade was 14 months old and I was just starting to find my way in this new world.
Having an unconfirmed prenatal diagnosis for Down syndrome meant 9 months of complete unknown. Life consisted of percentage chances of this or that and a long list of maybes that may or may not be relevant.
I remember being consumed by wanting to know what my future would look like. On the whole I was comfortable with the idea of raising a child with Down syndrome but it was a process to go through all the ifs, buts and maybes about what that would entail. Some days were easier than others and some days were harder but when I looked at the roller coaster of emotions I had been on during my pregnancy, I realised that I had come out the other side relatively unscathed and with a positive outlook for my future.
I was probably a bit naive to some of the challenges ahead of me but once I met Wade, I knew I had been through an experience that you could only understand once you had done it yourself.

Once I came out the other side, I wanted to pass that information along so that other people might find a story they could connect to as well. While I expected that family and friends would be curious and want to know a bit more about my story, I was really hoping to reach other parents who had received a prenatal diagnosis like me and were looking for a story they could relate to.

Why I heart Down Syndrome Victoria

The first few weeks were were certainly anxiety ridden but joining a mother’s group and getting involved with Down Syndrome Victoria programs like the My Time mothers group saved me from myself. Meeting new people in a group setting has never been my forte, though. I’m usually badly behaved in group settings as I find them unnatural and formula driven. I can’t stand groups where you have to do trust building exercises or turn to the person next to you and think of three things nice to say about them. Ice breaking exercises designed by someone with a Public Relations degree but no idea how actual people actually talk to each other. If I find myself in these things against my will, I usually leave my “appropriate tone and comment” filter in the car. Therefore I was skeptical as to whether I would get past the first week but I knew it would be a great benefit for Wade to have some social networks and I hoped I would get some benefit out of it too. It was important to me that he formed friendships with the local kids who didn’t have DS as well as the ones that did.