News and Blogs EarGenie Blog EarGenie and Aussie Deaf Kids The EarGenie Team collaborates with specialist hearing organisations all over the world who are on a mission to improve the lives of people with hearing loss. Recently, we had the chance to connect with Ann Porter, CEO of Aussie Deaf Kids. She has a remarkable story to tell. . . What is Aussie Deaf Kids? Aussie Deaf Kids provides online support and information for families of deaf or hard of hearing children in Australia. We want families to feel confident and well-equipped to help their children and we do that through our website and with parent-to-parent support groups. Aussie Deaf Kids has a website of quality resources to help families make informed decisions. Aussie Deaf Kids also manages closed online support groups, with more than 3000 members. After a diagnosis, parents want to know what’s going to happen next, what the appointments will be like, and whether their baby will be okay. Getting information and support from other parents builds parents’ knowledge and confidence. Aussie Deaf Kids also works closely with other consumer organisations to advocate for services and supports for children who are deaf or hard of hearing and their families. How did it start? I set up Aussie Deaf Kids as a mother. When my daughter was born, she had a profound hearing loss in one ear and when she was seven, she lost the hearing on the other side too. It’s really hard to get your head around what that means for your child, and what her life is going to be like. I met another mother whose son had a hearing loss, and she put me in touch with a parents’ group. Meeting other parents changed everything for me. Aussie Deaf Kids began through my involvement with face-to-face parent support groups. I ran Aussie Deaf Kids in my own time and I did my masters in e-health at The University of Queensland, which was enormously helpful. We wanted the information and support to be free of charge for all families. Aussie Deaf Kids is now a registered charity, but funding is always a challenge. What do you hear from parents with babies who have recently been diagnosed? For most parents of babies diagnosed with hearing loss, it’s completely out of the blue—they don’t know anyone with a hearing loss, they have no experience with deafness and they’re overwhelmed. When a parent of a newly diagnosed baby joins one of the groups, there’s an outpouring of kind messages. The peer support helps parents feel less alone, just knowing other families have gotten through this time is helpful. Parents are really knowledgeable and they have a different perspective to clinicians. In the group, there’s lots of day-to-day tips like troubleshooting hearing aids, as well as bigger issues like advice about picking schools. There’s lots of “is this normal?” type questions. One key message that comes up again and again is for parents to celebrate their beautiful new baby. Like other social media groups, there’s lots of sharing photos and accomplishments and parents reminding each other to look beyond the hearing and enjoy this special time. One of Eargenie’s aims is to help babies with Auditory Neuropathy – what do you hear from parents with children who have Auditory Neuropathy? Parents often don’t understand the Auditory Neuropathy diagnosis. They want to know what it’s going to mean for their child, and mainly they want to hear they’re not the only person on the planet who has a baby with Auditory Neuropathy. The delay in diagnosis is hugely stressful for families because there’s this ongoing unknown. The stress affects parent-baby bonding and enjoyment of that time. The earlier diagnosis through Eargenie would be brilliant for families, to reduce that constant uncertainty and help them move forward. The Eargenie team is proud to be working with Aussie Deaf Kids. Head over to the Aussie Deaf Kids website to see the amazing work Ann is doing.