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

Finding the right words

One of the unexpected joys of being a parent is that you always have something to talk about when you are stuck for chit-chat topics in social situations. Usually you will find yourself talking to another parent and conversation flows readily about each other’s kids. The rules of small talk between parents who are strangers strictly dictate that you must, without fail, compare notes on when each other’s child started crawling/walking/clapping/toilet training. If your child is not doing those things at the appropriate time then conversation usually turns to tips/techniques/advice/anecdotes about how to get there.

I can only endure so much of this before I feel obliged to mention that Wade has Down Syndrome and will do things more slowly than a typical child. I also feel obliged to mention it before the poor unsuspecting stranger in front of me really puts their foot in their mouth, I mean, I’d want someone to tell me! I feel ridiculous standing there keeping this highly relevant piece of information to myself but I always hesitate bringing it up because on the one hand, Wade is so much more than his diagnosis and I don’t want him to be defined by it. On the other hand, it’s still a huge part of who he is and a huge part of who I have become as a parent.

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How a film can pull the rug out from under you.

The early months with Wade had their ups and downs but most of that was due to fact that we were new parents and were working this thing out as best we could. Down Syndrome played its part but only in the practical hiccups that we had along the way. There were more doctors appointments than usual, more information to understand and more time spent working on his physicality to help with his development. The thoughts I’d had during pregnancy about what it would mean to raise a child with DS didn’t change after he was born. Wade was happy and healthy and Down Syndrome was not much of an issue for us, luckily. I felt validated that all of the research and mental preparation I had done had paid off and I was already realising that Wade was capable of surprising things…

Then….

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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. Continue reading

Part 4. The new normal

During my pregnancy, I was working as a waiter at Marios’, a cafe in Fitzroy. The cafe has been there for 27 years and has many regular customers who have been going there for years. It’s the kind of place where you need to get along with the customers as well as the staff and owners, as they are as much a part of the furniture. It’s one of the things that I loved about the job. I had returned to hospitality after 5 years away from the industry and I was really enjoying it. I had worked at Marios from 2001 to 2005 when I left to go and find a career. I’d had a quarter-life crisis and after racking up 10 years as a waiter, I decided I needed to do something meaningful with my life. Whatever I did, it had to be noble and worthy. That is something that has always been important to me. I have always shied away from the corporate world of money, ambition and power. I have never wanted to be defined by my job.

I left Marios’ to join the police force. (Bad choice if you don’t like issues of ambition, power and being defined by your job!!) After 2.5 years of stress, heartache and anxiety which was mainly due to the size of my IN tray of paperwork and less to do with the horrors out on the street, I resigned. It wasn’t for me. Yes, I was earning slightly more money than waiting tables but I was drowning in paperwork and the job was consuming every waking hour of mind and most of the sleeping ones too. I couldn’t find a reason to stay so I left.

Then I worked as a sub contractor for a company installing eftpos machines. The money was fantastic, I worked for a great company but again, the work was taking over my life. I worked long hours on the road only to come home and spend a lot of the night preparing for the next day and doing all my own paperwork. After that job ended, I discovered that I crave the simple life.
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