The story of Aussie Deaf Kids is inextricably linked to my story and our family’s experiences with our youngest daughter, Bonny. Bruce and I have three daughters - Lauren, Ally and Bonny. By the time Bonny was 12 months old, I was pretty sure there was something wrong with her hearing but it wasn’t until she turned 4 and a half that she was diagnosed with a profound unilateral hearing loss. While I had suspected for some years that there was something wrong, I felt like the carpet had been pulled from under me. We were told she would be fine. She just needed to sit in the front of the class when she started school the following year. I felt very alone.
Then on 23 September 1996 she hopped into the car after school and said, “Mum everyone sounds like aliens” and our lives took a further U-turn. She had developed a perilymphatic fistula and lost most of the hearing in her other ear that night.
The seeds of Aussie Deaf Kids were sown in those early bewildering and frustrating days of our journey. I just could not find the information or support I needed to make decisions about Bonny’s future. And then I found other parents and it made a world of difference. Finding other parents who could offer guidance and support allowed us to look to the future with more confidence.
I became involved in a couple of parent support groups. I was on the Management Committee of Parent Council for Deaf Education, now called Parents of Deaf Children, and was investigating ways of supporting parents in rural and regional areas when in February 2001, I was flicking through the Sydney Morning Herald when this headline caught my eye – “Let’s stick together: Somewhere out there is a discussion group tailor-made for you.”
It was perfect timing. Newborn hearing screening programs were starting and parents were looking for support from other parents. And the Internet was becoming a powerful force in our lives. The online group took off.
There has been support from many people along the way but there have been some key people who have been a considerable assistance. Kathy Skehan and Donna O’Mara were two of the first mums to join the group and they continue to be a sounding board and help me to keep things running smoothly.
Leonie Smith, another mum, designed our first website and came up with the name Aussie Deaf Kids. She felt the name of the Yahoo group, Parents of Hearing Impaired and Deaf Children in Australia or PHIDCOZ was a mouthful and we needed an easier name to remember.
The web site grew rapidly as I added links to various articles I found on the Internet while researching information for parents in the online group.
In 2003, a dad in our group, David Appleby, offered his services and designed our fabulous logo and the next iteration of the web site. This website was easier to navigate with links to articles on the World Wide Web filed into a Resource Directory for easier browsing.
So at this stage, I am running an online group for parents and a website with considerable resource directory. It is costing time but not much else. But was I doing the right thing by parents? I am an occupational therapist by training. I had worked in acute psychiatry as well as in paediatrics. When parents wrote to the online group they disclosed a lot about themselves, their children and how they were feeling and I wondered whether it was right to provide online support to parents. Was I doing more harm than good?
So while it was very apparent to me that the Internet had remarkable potential to make a difference in the lives of our families, it was obvious that I needed to know more about the whole issue of online support and information and I enrolled in a Masters of eHealthcare through the University of Queensland, which I completed in 2005.
For my dissertation, I looked at how Australian parents of deaf children used the Internet for information. The results of this study were published in the Journal of Deaf Studies and Deaf Education in 2007 and were to send Aussie Deaf Kids in a new direction and inform the next iteration of the website.
The number of changing links was making the website increasingly difficult to maintain. I now knew a lot more about what constituted reliable information on the Internet as well as the issue of usability - the need to make information easy to find and websites easy to navigate.
I decided parents with deaf kids in Australia needed a more comprehensive online source of information, which provided relevant and meaningful information for Australian families. The information needed to be parent-friendly and the website needed to be easy to use and navigate. I wanted ALL families, irrespective of where they lived to have access to the information they needed to help them to make informed decisions throughout the growing years of their child.
Up to this point, Bruce and I had funded Aussie Deaf Kids ourselves. However, running the site and ensuring my knowledge was up-to-date was becoming costly. As an individual, I could not access any grants and as I was doing this on a voluntary basis, we received no tax rebate.
So with the help of some of friends, we registered Aussie Deaf Kids as a public company limited by guarantee. Our main aims were to provide a comprehensive online information resource for families and continue providing online parent-to-parent support.
We were fortunate to receive deductible gift recipient status from the Australian Taxation Office. This meant that we could apply for grants and any donations made to Aussie Deaf Kids would be tax deductible. We had our first Board meeting in October 2007.
Founding board members and CEO launching the new website in 2008
Bruce Porter, Ann Porter, Talal Yassine, Nicole Lawder and John Oliver.
Absent: Berenice Ferguson
We continue to rely on organisations and authors to provide us with content free of charge and we do not generate sufficient income to employ anyone. Aussie Deaf Kids remains a group for parents run by parents who volunteer their time and expertise to support families following in their footsteps.
Bonny is now an adult – leading a full and independent life. Bruce and I have decided to move away from Sydney and focus on some of our other interests.
Aussie Deaf Kids will continue to be part of our family but not the focus. The groups have moderators who are experienced parents with younger children – on a similar journey to many of our members.
The board and I will be working on a new website to assist parents to make informed decisions over the next few years. And we will be working on a succession plan so I can quietly move over and leave Aussie Deaf Kids in capable hands.
Ann Porter AM
2001 - Designed by Leonie Bretthauer
07-Dec-2015 9:08 PM (AEST)