A perspective on the world of disability from a mother and an educator. Follow my blog!

Sunday, 19 October 2014

Why blog?

A wonderful friend of mine is a million things wrapped into one. She a mother, an educator, an administrator, a photographer, a business woman, a mentor. She's committed to her faith, she seeks out best practice in her parenting, even if it is 'alternative'. In many ways she is my inspiration. I know she is to many of her friends.

I love reading her blog because it makes me feel like I have company of this crazy journey. In moments of difficulty I take solace that I am not alone and in moments of joy I feel a part of that happiness. This wonderful mum is currently raising money for The Junior Diabetes Research Fund by selling some of her fantastic photographs on canvas.  She is so eloquent about why she is doing this and it made me wonder, why do I blog? Why do I have a Facebook page all about my daughter based solely on the fact that she has a diagnosis?

With October being World Down Syndrome month it's a good time to reflect on what I'm actually achieving. When Imogen was just a baby we had so many negative experiences of people saying 'What's wrong with that?', 'Don't worry, all kids with DS are happy' or 'She'll love music'. There have been so many negative expectations of her - her ability to achieve milestones, her ability to participate in regular schooling, her ability to do pretty much anything.

We knew that no daughter of ours would be limited by social restraints, particularly when they are based on stereotypes. I promise you all of my daughters will be able to change a tyre, mow the lawn and use power tools before they move out into the world. But here I am applying stereotypes now.

Initially I blogged because I needed a way to vent the frustrations I felt because of the limiting stereotypes forced upon us and Imogen. Now I blog because I feel we have been blessed with a wonderful opportunity to debunk those misconceptions and also to explain that yes, things might be a little more difficult, but never impossible.

Putting our lives out their has made me a much more reflective and contemplative person and I feel better for it. It has brought new friends into our lives and new understanding into theirs. It is amazing to see so many people from our little country town following us on Facebook and here is the reason it thrills me. Next time they meet Imogen in town they will have better expectations. They will know what it has taken to get her to that point in her life. They will understand how hard she has worked to achieve what she has and how her health impacts. In short, sharing now, means a better world for her tomorrow.

Even if you are reading this on the other side of the world (as many of you do!), then perhaps you wont feel alone in your travels, the difficulties and the joys. Perhaps next time you see a child with a disability, you'll know its more important to know their name than their diagnosis. Maybe you only just learnt that October is Down Syndrome Awareness Month. Possibly this post made you more aware.

What I would like to do with our family is to wrap them up and build a protective wall around us. To create a screen that allows them to experience life in privacy. To shield them from any negativity that is thrown at us.  It's silly but I feel like we are literally doing that by building a new front fence and arbour. A beautiful but functional little motte and bailey. It will never stop every bad thing though. The only way to combat negativity is to face it head on with love and understanding. I know that not everyone who reads will agree. And I'm ok with that.

Not quite finished yet and a path being started this week.

One of only a few PINK wisterias in town! Just a twig now but give it a few years!

There's no reason the girls can't make their own fun while the building is going on.

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