It’s their loss….

There’s sometimes a big difference between how Wade acts when he is at home and when he is out in public. I’m certain this is not unique, in fact I’m sure this is true for children everywhere. I understand why….he is comfortable at home. Home is familiar and it is where he is safe and happy. Same for all kids I imagine.

The problem is, being out and about is the perfect opportunity to change some attitudes about what Down syndrome is. Don’t get me wrong, I don’t run up to unsuspecting people and dangle my child in front of their eyeballs saying “Look! Isn’t he amazing???” I don’t set out of my house on a “hearts and minds” mission every time I go shopping but if the opportunity arises, I like to take advantage of it.

So, even though I know I shouldn’t, I can’t help feeling a little disappointed when Wade doesn’t act like Wade when I want him to. It’s always the way….I find myself with someone who is looking at Wade as though they need convincing of his worth in this world. I sit there hoping that he will turn on the charm offensive transforming this skeptical onlooker with a bout of impromptu giggles and waves. Maybe dazzle them with series of signs and gestures extolling the wonders of the world around him. Instead, he often sits silently ignoring me…and them…. throws something on the floor or something else that confirms every stereotype this onlooker suspects about us.

I shouldn’t feel this way and I’m not proud of it. It’s not up to Wade to prove his place in this world. He can act like a brat if he wants to or stare out the window without worrying if he is going to undermine the entire global Down syndrome advocacy movement but I would be lying if I said it doesn’t annoy me just a little bit.

The first thought that comes to mind after an encounter like this is a sort of self-appeasing mantra that I say a lot.

“Oh well…their loss”

I say it because deep down I know he is awesome and they just missed out on seeing it. I thought it was just Murphy’s Law but something happened this week that made me realise Wade knows more about people than I do sometimes.

….and maybe, there might be more to it than I thought. Continue reading

StepUp! For Down syndrome is on and my sister is going the extra mile(s)

I’m a bit of a stick in the mud when it comes to awareness campaigns.  There’s no denying the effectiveness of some of them for raising cold hard cash..ice-bucket challenges, no make-up selfies and odd socks campaigns spring to mind…but while the share-ability of them is useful, I am always wondering how much pouring a bucket of ice on your head translates into a real and effective understanding of the condition it is connected to. 

In the Down syndrome community in Australia and in other parts of the world, one of the biggest events for raising funds and awareness is the annual StepUp! walk.  Previously known in Australia as the Buddy Walk (as it is known overseas) this event is one that that we have really embraced in our family.  I like it because it actually gives people an opportunity to understand the positivity and connectedness of our community.  This year will be our third walk and I am really looking forward to it.  The money raised from these events help to fund the local Down syndrome organisations.  In our case it is Down Syndrome Victoria who were instrumental for me when I was pregnant with Wade and told he would almost certainly have Down syndrome.  The services they provide to new parents in the early days right through to schooling, entering the workforce, living independently and ageing is fundamental to health, wellbeing and resilience of people with Down syndrome and their families.

In the time since Wade was born I have stayed involved with DSV helping to support new families, co-presenting workshops and I am on the editorial committee for Voice, the national journal of Down Syndrome Australia, too.  I know how hard it is to provide the kind of support needed to families with little to no ongoing funding!

The reason I like StepUp! over other awareness campaigns is it shows our community doing things that large parts of society still believes is impossible or unlikely for people with Down syndrome…living happy, valuable, productive lives surrounded by people who love and support them.  50 years ago parents who gave birth to a child with Down syndrome were routinely advised to abandon their children to an institution and ‘get on with their lives’.  Parents were told that their babies would amount to nothing, be unlikely to live very long, live a life of suffering and health problems. They were told they would never learn to walk or talk.  In the 1980s the life expectancy for people with down syndrome was 25.  Today it is over 60 and rising.  People with Down syndrome are not only living longer lives, they are living better lives too.  Advancements in health, therapies and education have removed a lot of unnecessary barriers for people with Down syndrome but there is still a huge one in the way…..the curse of low expectations from the people around them.

My family has always been an enormous support for us.  From the time we were given the first indication that our baby would have Down syndrome right up until today, I have known that they are 100% behind us.  Every year for StepUp! my sister Sammy, has found some incredible way to get people behind this wonderful event.  The first year, we engaged in a little round of sibling rivalry…..who could raise the most money for our team Wade’s Waddlers.  It got intense with one of us edging ahead of the other then falling behind at different times.  In the end sanity prevailed and I raised the most money!!  I think we raised about $200 all up and we were pretty chuffed.

The next year, she wrote personal limericks to everyone who donated as a bit of a laugh.  A bit of a Laugh??? she single handedly raised over $2,000 in three days and wrote over a hundred poems and posted them on Facebook as people donated to the team.  It was mind-blowing.  

This year though she is doing something wonderful and I couldn’t be prouder.   Continue reading

What did I expect?

I’ve kind of missed the boat recently on some of the controversies swirling around in the media relating to Down syndrome. There has been no shortage of blogger fodder for me to sink my teeth into but we have been away on holidays and I haven’t been in the right frame of mind to weigh in heavily on the issues. I tried writing bits and pieces here and there but between intermittent wifi and holiday distractions I couldn’t get going. I did read the hoopla surrounding the comments made by Richard Dawkins and managed to fire off this tweet….

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……but as I was trying to craft an intelligent and witty rebuttal to one of the biggest clangers a man of his intelligence could make, it dawned on me…. I was waaaay too busy having fun hanging out in New Zealand as a family, catching up with relatives, going on road trips, kayaking, sight seeing and sledding in the snow. You know….doing all the things that apparently shouldn’t be possible if we let ourselves be swayed by the opinions of people who have no idea what they are talking about. (In fact, according to Dawkins, I should have spared myself the “suffering” of this wonderful holiday and would have been much happier if I hadn’t been so “immoral” as to have given birth to Wade 2 and a half years ago. Gah!)

There have been so many things I wanted to expand on about these kinds of attitudes but the one concept I keep returning to is that of low expectations. The idea being that the biggest hurdle facing people with Down syndrome is the low expectations society has about them. Continue reading