Monday, 20 March 2017

Blog 83 - World Down Syndrome Day 2017

This blog has been sitting dormant, as my day-to-day life has gone on by...writing, studying, speaking engagements, being a wife and mother. You know how it is. Even though I've been writing an awful lot, I must admit I didn't think this blog needed updating. My children are growing up, I'm not having the same struggles as I was when they were younger, so my other blog has received my sole attention, But in fact that's wrong. In actual fact I do have many things I need to say - they've been accumulating into a giant heap of wriggling issues in my brain. So today being World Down Syndrome Day, I am going to start.

I wrote an article for Down Syndrome Australia for WDSD. It was featured today on their website and Facebook page.

This was the final article out of 21 which have been shared to the world from families and individuals. These articles are all worth reading, and I think they show extremely well that people who are born with Down syndrome, are leading ordinary lives which are fulfilling and exciting. Being born with Down syndrome, is not a negative thing, as doctors and the medical fraternity make it out to be. My blinded ignorant eyes were opened when I ventured into this world - a world I was terrified of - a world that society had told me was going to be awful and why would I want to go into it?
I am here now to stand tall and firm, and tell society off, for making judgements about the value of a human life. My daughter is a joy and IS valuable. She is just like any other child I know - she sings and plays and reads and writes and tells jokes and swims... My daughter has dreams, and hopes and plans for her future. She wants to get a job, get married and drive a car. All normal things. Am I going to stop her because she may be a bit slower than the average child? No way! I am going to support her and help her to achieve to her full potential, just like I do for her sister and brother.

So for today I will end here with my article, the media release from Down Syndrome Australia and a video created for World Down Syndrome Day #notspecialneeds:

Down Syndrome Doesn’t Define You

“I think your baby has Down syndrome. Why haven’t you been told already?” said the frank geneticist when we took our one-month-old daughter for diagnosis. Shock, like a cattle prod slammed to my forehead, shot through me. The vision of her slanted eyes I had noticed when she was born, zoomed around my brain. I felt numb. I had known there was something not quite right with Jessica – she slept way too much and had feeding problems – but no one we had seen for help had mentioned Down syndrome.
The paediatrician at her birth had directed us to the geneticist who we were seeing due to another family genetic syndrome. The wait to hear what the blood test revealed was excruciating. My reaction to the ‘positive to Trisomy 21’ news was horrific. I didn’t want to look at my baby or touch my baby. I spiralled down into post-natal depression and I was filled with fear. I couldn’t see a bright future for my daughter, and the “I’m sorry” from well-meaning friends didn’t help the situation.
My strong feelings made no sense to me. I knew absolutely no one with Down syndrome. Somehow, somewhere during my life, I had picked up that Down syndrome was a really terrible thing for my child to be born with, and for my family to have to deal with.
Now, nine years on, I wish I could go back in time and talk to the terrified mummy I was. I would softly tell myself – it is going to be okay. There is nothing to be scared of. Your daughter will develop her milestones, she will talk and sing, she will have friends, she will love swimming, she will go to mainstream school and be involved in extra-curricular activities, she will have her own personality and talents, she will have a vivid imagination, she will learn independent life skills, and she will bring much joy to your family and others around you. You will love her, cry over her achievements, advocate for her fiercely and she will be a light in the world. It will not always be easy, but that is a typical life. Your beautiful daughter will show the world that having Down syndrome is just one part of her, it does not define her.

#World Down Syndrome Day 2017 – World Down Syndrome Day 2017

21 March 2017
World Down Syndrome Day, the 21st of March, is an international awareness day to promote a better understanding of Down syndrome, the vital and active role that people with Down syndrome play in our communities and the actions needed to be taken to ensure that people with Down syndrome are able to realise their fundamental human rights. Down Syndrome Australia welcomes the opportunity to be part of this global celebration of people with Down syndrome and effort to combat stigma and misunderstanding about Down syndrome.
This year the theme for World Down Syndrome Day is “My Voice, My Community.”  As part of our celebrations for this day, Down Syndrome Australia with the support of the Parliamentary Friends of Down Syndrome are hosting a World Down Syndrome Day morning tea at Parliament House on 22 March.  This annual event is an opportunity to bring together politicians, key stakeholders and people with Down syndrome and their families  to celebrate this important day.
This year, we are pleased that we have two people with Down syndrome, our South Australian Member Ambassadors, James White and Zoe Kyriazopoulos who will be speaking at the event.  We will also be joined by Disability Discrimination Commissioner Alastair McEwin who will talk about the importance of community understanding of intellectual disabilities and the barriers to inclusion faced by people with Down Syndrome.
This event will also be an opportunity to showcase the latest international awareness film produced by CoorDown.  This film uses humour to address serious issues around the use of the terminology “special needs” and highlights that the fundamental needs of people with Down syndrome are the same as everyone else- the need for education, employment, access to health care, and the community.
Down Syndrome Australia CEO, Dr Ellen Skladzien said “It is vitally important that we address the stigma and lack of community understanding about Down syndrome.  A recent survey we conducted of more than 800 families of people with Down syndrome found that approximately a third of people with Down syndrome and their families had been discouraged from taking part in everyday community activities or education because of their disability.”
World Down Syndrome Day is an opportunity to dispel the myths that surround intellectual disability and to highlight the active potential of people with Down syndrome.  As part of our countdown to World Down Syndrome Day, Down Syndrome Australia has profiled 21 people over 21 days to highlight the many different ways that people with Down syndrome are involved in their community.  These stories can be found at:

NOT SPECIAL NEEDS | March 21 – World Down Syndrome Day | #NotSpecialNeeds by CoorDown

Happy World Down Syndrome Day. :)  

1 comment:

  1. Go Jenny,
    Fabulous idea to return to writing your Blog... Best wishes Karen Tyrrell author