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

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.
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What’s worked for my son with Down syndrome…road safety.

Sometimes when you start out teaching your kids how to do things, you have no idea whether your approach will work or not. That worry can be amplified when your kid has developmental delay as the fruits of your labour can take a long time to ripen. Trying to balance sticking to a method to provide consistency and ditching something that doesn’t work before I have wasted too much time on it used to drive me crazy but as time passes, I am getting better at knowing what works for us and what doesn’t.
So, I thought I would write a little bit about things that have worked for us and why.

I thought I would start with road safety because this was one of the biggest fears I had early on. Like most parents starting this journey I’ve had so many people delight in giving me all the horror stories of uncontrollable kids or near death experiences as their kids belt out into oncoming traffic. This terrified me. What if I was never able to teach him to be safe near a road? What if he wrestled out of my grip suddenly one day and threw himself under a truck?

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I decided early on that I would try to teach him some road sense in the hope that he would learn to walk with me safely and listen to my instructions…and I decided to start from the moment he could walk. Partly because the earlier I started the better, but also because he would be pretty slow and I could catch him easily if I had to!

So here is a list of things I did that have actually worked.
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