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

Tuesday, 16 June 2015

9 Years a Superhero

The lead up to Imogen's birthday always involves lots of planning on her behalf, counting down of sleeps and plenty of excitement. So of the pre-birthday conversations went like this.

Via Facebook from her Grandpa
To Immy from Pa. What would you like for your birthday?
I Wold. Like A. Cape. Plecs. From imm

 A conversation during school drop off
Family friend: What do you want for your birthday Imogen?
Imogen: Superpowers.
(Wait for it. It gets better!)
Friend's child: You can't just wish for superpowers and then get them.
Imogen: I can make my own decisions.

I knew that I wanted to blog on the anniversary of my life irrevocably changing,  but I didn't know what to say that I haven't said before.  Imogen gave me the answer. Her superhero theme inspired me.

While her self chosen alter ego is 'The Boss of the Books' Imogen is without a doubt a super hero. She changes lives. When I started this blog and the Facebook page it was a bit self indulgent. I've come to realise that by sharing our story, and noramlising disability and chronic illness, Imogen is without a doubt changing the way people think.  I am grateful to all the people who leave comments on our page, and even more touched by the private messages I receive from people either touched by the honesty of our story, or who identify with it in some way.

I always knew that Imogen would have an impact on the other kids in her class, but to have students from other grades, across the school come to know, accept and embrace Imogen is something I could never have imagined. Imagine my surprise when Imogen's birthday plans took an unexpected turn.

There was a time that we were terrified of sending Imogen to school. Our own schooling taught us that those with disabilities were shunned & ridiculed. We still worry about Imogen's eccentricities and how that impacts on her ability to make & maintain friendships. Never in a million years did we ever think that our daughter would have such amazing friendships that she would be the recipient of a surprise birthday party. Never did I imagine that I would have such incredible people to call my friends.

Imogen saves lives. She has saved my life from the banality I had planned for myself, and raised me up to something incredible.

Happy birthday, my perfect Imogen.

I got a text in the middle of the day inviting us to an 'afternoon tea'.
Unconditional friendship is the greatest gift.

A surprise birthday party feast is what we got.

Tuesday, 9 June 2015

A date worth remembering.

Our journey with disability has been filled with many memorable dates, moments and phases. Those places on a calendar than forever change your life. They become burnt into your memory, your flesh, and your soul. While we have quite a few, the biggest of course are Imogen’s two diagnoses. However, there are periods of remission, moments of defying Down syndrome stereotypes and finding our identity within the world of disability.

Our journey has been littered with good years and dysfunctional years.  For me professionally I worked for a number of years building my knowledge base and experience in working with students with disabilities. Then in 2014 I was given a blessing in disguise and stepped back from having to constantly bring work home and giving more of myself to my job than I had any right to give. I have had 18 months to support my girls, focus on home (renovations are fun!), find a new professional direction and the blessing has come again 10 fold. 

Today is one of those dates that I will forever remember as it's the day I'm submitting my proposal for my doctorate. I will officially be a Doctoral student. 

For about 6 years I've had this idea floating around in my head and the jobs I've had in the meantime have all given me bits here and there to contribute to it's growth. The teachers that I have worked with have confirmed time and time again that my idea is valid and that there is a need to change the way teachers think about students with learning difficulties and disabilities.

I thought my idea was not much chop honestly, but now that I have 5 university staff vying to be my supervisors I'm starting to think that maybe there is something truly unique in my proposal. One supervisor is already talking about where to publish and which international conference to present at. To say that this thought terrifies and exhilarates me would not really encompass the range of emotions I'm experiencing.

I can't begin to think of where this is going, without being filled with gratitude for my big girl. Without her, I wouldn't be here. Without her my eyes would not have been opened to this world. Without her, today wouldn't be a date worth remembering, and not soon to be forgotten!