New articles are published every month under the headings below.

Hearing loss surgery sounds great for 16 children from Yarrabah

Jan 2018 Cairns Post

The sounds of their tropical home will become much clearer for 16 children from Yarrabah who have gone under the knife to improve their hearing. Several health organisations united to assist the indigenous children with day surgery in Cairns under the federally funded Eye and Ear Surgical Support Services program. Children ranging from 2-15 years of age were treated for a series of hearing impairments, including perforated eardrums and middle-ear infections.

Aboriginal and Torres Strait Islander children experience some of the highest levels of ear disease and hearing loss in the world. Rates are up to 10 times more than those for non-indigenous Australians. Gurriny Yealamucka Health Service Aboriginal Corporation nurse Dannielle Gillespie said, due to Yarrabah’s relatively remote location, it was difficult for parents to get their children to doctors. She said an initial list of 200 children needing hearing loss surgery had to be whittled down to the list treated at Cairns Day Surgery.

Karen Leeman Registered Nurse Karen Leeman prepares 7 year old Dallas Sands for surgery on a perforated eardrum.

“Hearing loss in Yarrabah is right across all kids,” she said. “Basically, if the perforations in the ear are not fixed, then that has a future roll-on effect with their speech, their education, their learning abilities – even their social skills, it starts affecting that, too.” Yarrabah mum Zoe-Ann Sands’ daughter Dallas, 7, had surgery yesterday. Ms Sands said she was thankful her daughter would finally have better hearing. Funding for the surgery was provided to health advocacy group CheckUP by the Commonwealth Government.

Horsley boy Koby Butterfield ready for Kindy thanks to The Shepherd Centre

Jan 2018 Illawarra Mercury

Bedtime stories were once a struggle for Horsley mum Ashleigh Butterfield, with her little boy Koby seemingly unwilling to lie still and listen. It wasn’t until Koby was four, that she discovered that he had never been able to properly hear those stories due to bilateral hearing loss. Now fitted with a cochlear implant in his left ear – and a hearing aid in his right – he’s more than ready to listen and to learn when he starts ‘big school’.

The five-year-old is one of 43 deaf or hearing impaired children who will join their hearing peers in mainstream Kindergarten classrooms this year thanks to the support of The Shepherd Centre.
For Mrs. Butterfield, and husband Daniel, the Wollongong centre has been their “lifeline” since Koby’s diagnosis. “Without The Shepherd Centre, we would have no idea what to do next,” she says. “They have been an incredible help in understanding Koby’s diagnosis and how we help him grow and reach his full potential.”

Mrs. Butterfield said Koby’s diagnosis had come as a complete shock, with no family history of hearing impairment. ‘’Koby had had grommets inserted as it was thought he had middle ear problems, but we didn’t know the extent of his hearing loss until he was diagnosed last February,’’ Mrs. Butterfield said. “It had affected his behaviour and his willingness to learn – I couldn’t even read a book to him at night.

Koby Butterfield Now his interest in reading is growing and he’s so excited about starting school – he put on his uniform this week and wouldn’t even take it off when we went shopping.’’

Koby will continue to work hard on his growing speech and language skills with The Shepherd Centre, while attending mainstream classes at Hayes Park Public School with the assistance of an itinerant teacher.

Centre CEO Dr Jim Hungerford said the first day of school was a ‘’special milestone’’ for children who were deaf or hearing impaired. “For many of these families, they’ve really been preparing for the first day of school for almost their entire lives,’’ he said. “The majority were diagnosed with hearing loss shortly after birth, and they’ve since received regular speech and language therapy from us –  some with help from hearing devices such as cochlear implants –  since they were just a few months old.’’

How gaming is bringing new sounds to new ears

Jan 2018 Telstra Exchange

There’s a reason why the Remarkable Accelerator has such a bold name. In part it’s the remarkable ideas behind each of the program’s tech4good startups. But mostly, it’s the remarkable people making these ideas a reality. With applications closing soon for the 2018 program, we want to share these Remarkable Stories. This is Elliot’s - “I’ve never seen being deaf as a bad thing.”
Elliot Miller explains: “It really taught me to view, articulate and interact with the world in a different, open-minded and often unique way.” He’s right. The 30-year-old Brisbanite has unique view of the world. Growing up deaf in a hearing world, also meant he’s had a unique experience of it. It was one particular unique experience in 2013 that inspired an idea which would set his life in a new direction.

“I’ll always remember the day I first went running after I received a cochlear implant,” Elliot said. “I could hear a jingling noise. When I stopped running to focus on this unfamiliar sound, the jingling also stopped. I wasn’t sure what it was and kept wondering what it could be. It wasn’t until I got home that I realised the noise was coming from the coins in my pocket.”

At two, Elliot was diagnosed with severe hearing loss in his right ear and profound loss in his left. Twenty-four years later he received a life-changing cochlear implant. However this ‘fix’ wasn’t as simple as ‘switching on the sound’. In fact, learning to understand new sounds has been one of the biggest challenges Elliot has ever faced. But this experience led him to combine his skills in graphic design and game design to create Games 4 Hearoes, which uses gamification to help people with hearing impairments transform the way they hear.

Games 4 Hearoes“Games 4 Hearoes is a digital auditory training platform to help track, adapt and empower those with hearing loss, specifically those with a cochlear implant, learn new sounds,” Elliot said.

“When someone receives a cochlear implant it’s a common misconception that they will automatically gain normal hearing. However it’s quite a different experience for everyone who goes through the journey.” After someone receives a cochlear implant, what they mostly hear is almost like vibration feedback while the brain tries to identify the pitch and tone of the sound. Over time it steadies to ‘white noise’ until their brain is able to identify what the auditory feedback is and understand it. Recipients often need to relearn or learn how to hear – from environmental sounds through to understanding vocabulary. “I hadn’t been prepared for how much work was needed in the rehabilitation process,” Elliot explained. “In theory, the cochlear speech processor is a more powerful, sharper device compared to the hearing aid that I was used to. Although I am able to hear more of the world around me, especially the soft or high pitched sounds which I had never heard before, it took a lot of practice and stamina to make sense of it all.”

So he set himself on a new path to use technology to make this process quicker, easier – and even fun. And it’s through serious games – computer games with a purpose to train, rather than simply entertain us. But as Elliot explains, serious games can do both. “Games 4 Hearoes has a range of modules, starting with environmental sounds progressing to understanding sentences and dialogue,” Elliot said. “In each module, there is a library of gamified activities, which have been designed for everyone, from children to adults, to create an entertaining and immersive experience, rewarding participants as they progress.”

Games 4 HearoesIn developing Games 4 Hearoes, Elliot has drawn on his own experiences, as well as others.

“Even the small things in life, from the fridge alarm beeping to taps dripping – which had never been noticeable before a cochlear implant – can be easy to misunderstand in our noisy world,” Elliot said. “Using real life experiences and scenarios has helped the development of Games 4 Hearoes. Everyone we speak to brings new insights and ideas.”

Games 4 Hearoes was one of eight social change businesses using technology to change the lives people with disabilities, that took part in the 2017 Remarkable Accelerator. A partnership between the Telstra Foundation and Cerebral Palsy Alliance, the 16-week program has been tailored for early stage startups looking to build sustainable enterprises that have a big social impact. It does so by connecting them with the tools, skills and networks they need to succeed.
Elliot credits the program with helping him take the next step in making his niggling, ‘jiggling’ idea, a reality.

Elliot Miller“We’re continuing to develop Games 4 Hearoes and to date we’ve had incredible feedback, not only from those with hearing impairments, but also audiologists who have validated what we’re trying to do,” Elliot said. “We’re currently looking for people who have had cochlear implants, as well as audiologists to join us on our journey. Through the Remarkable program, I’ve gained the skills to now take the next step in launching this as a business.”

Elliot is passionate about the potential of technology to break down barriers for people with a whole range of disabilities – but especially for the hearing impaired. “As hearing aid hardware has moved from analogue to digital – the possibilities of new technology are almost endless,” he said. “Addressing an issue that is so close to my heart with something I experience every day, is essentially how this all started.”

Hearing loss didn't stop Kyle Cloete following his passion for making films

Dec 2017 Stuff.co.nz

Despite experiencing hearing loss a child, 16-year-old Kyle Cloete is a passionate film-maker, and has already won awards for his short films. He shares his story as part of Disability Pride week, to inspire other young people living with disability. I have two worlds – the hearing side and the deaf side. When I was born, my mum knew something was wrong but the doctor repeatedly assured her "Oh no, your baby is fine, don't worry about it”. I wasn't fine. After we moved to New Zealand, doctors found a tumour in my right ear. I needed surgery, and subsequently I was left with one completely deaf ear and moderate hearing loss in the other. I am forever in my parents' debt. They have always supported me and believed that I can achieve whatever I want to do.
Kyle Cloete says if you believe in yourself, you might end up doing what you love for the rest of your life.

Kyle CloeteAs a child, mum wanted to expose me to as many different languages as possible, both visual and oral. My mother is deaf herself so she communicated with me using sign language. My first signs at 6 months were mummy, moon and light. Sign language is so visual, which is why I also love comic books. I was also exposed to the oral world through music, and at seven I was fitted with a cochlear implant which gave me more access to the hearing world.

School was sometimes challenging, as I would miss out on the teacher's instructions, but otherwise I was much the same as other students. I feel lucky to live in New Zealand -compared with other countries in the world, it's very diverse and I have never felt that people judged me because of my disability. Sign language became an official language in New Zealand in 2006, and as more people learn it, our society becomes more inclusive, which is awesome. The deaf community is like a family. If you ever go to a deaf club, you'll be amazed at how quickly people can pick up signs because it is visual language.

I want to show people my world, and share other people's stories too. I think that's why I am so passionate about directing and screenwriting. I know it will be a long road, but I'll do whatever it takes to get there because that's all I want to do. My all-time favourite movie is an old film The Good, The Bad and The Ugly - I just love how Blondie is a silent character. I may be hard of hearing, but I never saw that as an excuse not to make films. You can't let your disability define who you are. You need to believe in yourself when nobody else believes in you. You need to imagine yourself in the future going "hey, I want that". The next thing you know, you might be doing what you love for the rest of your life too.

Queensland’s Senior of the Year Dr Dimity Dornan of Hear and Say helps improve deaf children’s lives

Dec 2017 Our Mail

Dr Dimity Dornan, has dedicated decades of her life to bringing sound to the lives of deaf children. If the senior years of life are supposed to be about doing nothing much except ticking off everything on your bucket list, Dr Dimity Dornan did not get the memo. There’ll be no lying back with a margarita on some exotic faraway beach for her. Instead, it’s business as usual for Queensland ­Senior of the Year 2018, the state’s entrant in Australian Senior of the Year, to be announced on January 25. Recognised worldwide for her groundbreaking work changing the lives of thousands of deaf children by helping them learn to listen and speak, Dornan was Queenslander of the Year in 2010, but admits to being slightly taken aback when approached to be Queensland’s Senior.

Pip Russell etc(left-right) Queensland Local Hero winner Pip Russell, Queensland Australian of the Year winner Johnathan Thurston, Queensland Senior Australian of the Year winner Dr Dimity Dornan, and Queensland Young Australian of the Year winner Phillip Thompson

“I suppose it’s really quite funny, I’ve now moved up to the senior section!” she says in our interview in one of the beautifully designed rooms at Hear and Say’s premises in Brisbane’s inner-west Ashgrove, which opened in 2015. “The Senior Australian of the Year people rang and asked if I’d like to accept it and I said, yes, I’d love to, but then I had second thoughts later on. (I told them) if I had to be Queensland’s ­Senior Australian of the Year, I’d really like it if you didn’t use my age if you can possibly do it.” But isn’t there a certain irony here? A person of senior years being feted for her achievements not wishing to mention her age? “I prefer to be treated as a professional, rather than have age define me,” she says. “I just feel that it’s such a competitive world, it’s much better to compete on your merits, rather than your age.”

Let’s just say then that Dimity Dornan, PhD, AO, ­author, speech pathologist of more than 50 years’ standing, inspirational promoter of the largest paediatric cochlear implant program in Queensland, which has used Auditory-Verbal Therapy (AVT) to empower some 10,000 children to fulfil their potential in life, is older than 60 but younger than 100.

Hear and Say – the private, not-for-profit organisation she ­established in 1992, treating six young ­patients from rooms she shared with her physiotherapist husband Peter Dornan in the inner-western Brisbane suburb of Toowong – has just celebrated its 25th birthday. A new book cele­brating the history of the centre, Sounds of Hope: The Hear and Say Story written by Brisbane author Madonna King and published by University of Queensland Press, was launched by Governor Paul de Jersey.

Hear and Say now has six centres around Queensland, treating children and their families here, as well as around the world, using new telecommunications technology that allows face-to-face interaction. The acclaimed facility ­offers its services to any deaf baby or child no matter where they live. Currently two in every 1000 babies are born deaf in Australia each year and it is the most common disability in newborns. Hear and Say ­relies largely on fundraising on top of ­government grants, and part of Dornan’s job as its executive director is being its tireless advocate, a lobbyist par ­excellence, a passionate and moving speaker whose eyes still fill with tears when she speaks of her life’s work, or the moment – which never ­becomes stale – a child first hears the sounds of the world. Dornan was born Dimity Crist (pronounced as in “crisp”), the eldest of four girls and a boy born to Richard “Dick” Crist, a Shell sales rep, and his wife Marjorie, a full-time mother. Dick Crist was a World War II veteran and, before their marriage, Marjorie worked in US General Douglas MacArthur’s mapping department.

The Crists were of German descent (the name was spelt “Christ” but along the way the “h” disappeared) and were pioneers of the Toowoomba region. Dick’s mother, Alice Guerin, was of Irish origin. Alice died before Dimity was born but she was always intrigued by the mystery of her grandmother’s portrait, and by the fact that she was a ­writer. But it was her grandmother’s work as a teacher that lit up her impressionable granddaughter. “She came from Ireland with her parents in the early vanguard of teachers who were meant to upgrade the quality of education in Queensland … she travelled with her father to different state schools, eventually became a pupil teacher and then a teacher herself at a very young age.”

Dornan’s parents believed in the value of education, too. The family lived on a large block at Corinda in Brisbane’s southwest, and Dornan and her sisters attended Our Lady of the Sacred Heart Convent there. From an early age, Dornan knew she wanted some kind of career that involved helping people. The family knew a professor of psychology from UQ who lived nearby, who told her about a new speech pathology course. Dornan would become one of the first graduates in speech therapy at UQ.

Dr Dimity DormanDr Dimity Dornan of the Hear and Say Centre with Edward Mewing (2)

Her first jobs involved working with patients with head injuries. “It was wonderful work, but then I got the opportunity to work with children with hearing loss. I said to my prospective employer, ‘but I don’t know anything about hearing loss!’ And she said something that changed my life, something I like to pass on to other people. She said: ‘No, but you have the ability to find out’. So I’ve been finding out ever since – I’ve become a lifelong learner and that’s what I’ve been up to. People think they’ve got their qualifications, and then they sit back, but I’ll tell you what, life’s not like that.”

Which is why, besides her work as Hear and Say’s executive director, the fundraising and the meet-and-greets she ceaselessly undertakes every day, Dornan is ­increasingly absorbed in the area of bionics, founding ­Bionics Queensland and the Human Bionics ­Interface, an Australian research collaboration project to grow the ­bionics ­industry. She has also ­secured a manufacturer for a cutting-edge invention, a hearing aid that allows people to hear in noisy restaurants.
This is a woman who is constantly learning.

As if her days aren’t busy enough, there are now four grandchildren she enjoys with her husband whom she married in 1967. The couple has two children – Brisbane-based Melissa, 49, who runs a business helping mothers get over traumatic births, and Melbourne-based Roderick, 47, known as Rod, who works in IT for IBM.

“I came late to my career,” Dornan says. “I was always a speech pathologist but I didn’t start doing Hear and Say until my own kids were in uni, so I’m sort of a late starter, if you like, in that area.” She began working with deaf children when she had to learn sign language to work with hearing-impaired children at Zillmere North Special Education Unit. She became frustrated that parents weren’t involved in reinforcing their children’s learning, and eventually found her way to the Shepherd Centre in Sydney, which in turn led to a Churchill Fellowship to Canada to study AVT.

Research shows that the critical brain period for learning to speak is within the first three years of life, therefore early diagnosis is essential. Once a baby or child has been fitted with a cochlear implant, AVT successfully develops the listening and spoken language of kids with hearing loss by stimulating auditory brain development. The input of parents is critical to reinforce learning.
When Dornan speaks of giving the gift of sound, her eyes fill. “I feel very strongly that I have a purpose in life,” she says.

Dornan mentions the Future Hear Project, which she is working on with Queensland University of Technology, which aims to build ears for children born without them. It involves the 3D printing of a prosthetic ear and a bio­degradable scaffold built from a child’s cartilage and skin cells that will allow an ear to grow. It’s nothing short of ­miraculous. It’s also nothing short of all the little miracles ­Dornan has guided along the way, from teaching a child to distinguish an “f” sound from an “s” sound, to getting ­citizens to part with their money to help a deaf child. Do we care if Dr Dimity Dornan is classified as a senior, junior or middle-aged Australian? My guess is we care more that people like her keep doing what they’re doing, while the rest of us keep being grateful.

Sounds of hope: the story of the cochlear implant

ABC Local Radio with Rebecca Levingston

Have you ever seen one of those videos where a child is fitted with a hearing aid and they hear their parents voice for the first time? Their little face lights up and the parents tear up. It's the magic of a bionic ear that changes lives. Wally Lewis remembers the moment that happened to him and his daughter, but the woman responsible for that magic is Dr Dimity Dornan. Dimity is the founder of the Hear and Say Centre and this year marks 25 years of her transforming lives. Dimity and Wally chat with Rebecca Levingston.

This link will go to the page where you can listen.

Duration: 20min 50sec Download MP3 9.54MB Broadcast: Sat 2 Dec 2017

Grace's gaze opens up world

Dec 2017 Bundaberg News Mail

Grace Lukan

 Grace Lukan and her mum Liz thank Queensland's Hear and Say Centre for improving her life immeasurably

Little Grace Lukan will one day be able to advocate for herself thanks to Queensland's Hear and Say Centre. Through Grace's parents, Dan and Lucy Lukan's words, this heart-warming story shares just how important even the most limited communication can make to a child and a family.
Dan Lukan said when Grace was born, she was like any other child; her cerebral palsy came later.

"Grace lost her hearing, her sight and her teeth and she's got no head or body control,” Mr Lukan said. "Her type of cerebral palsy means she can't communicate with the outside world. She wants to, and she can understand, but up to now she hasn't been able to communicate back.”

The years of early intervention and hard work has paid off. Grace, 6, is now able to interact, express herself, and over time, will learn to advocate for herself. For her parents, it was a dream come true when Grace learnt to communicate through eye gaze software and her cochlear implant, thanks to the work from the Hear and Say Centre. They are just one of many families who rely on the support and advocacy for a child born with hearing loss.

Cochlear implants the best choice for Harper Rollinson

Dec 2017 Illawarra Mercury

Harper Rollinson

Three-year-old Bulli girl Harper whose face (inset) said it all when her cochlear implants were turned on

Luke and Katie Rollinson had no choice but to start their baby daughter Harper on chemotherapy at just 12 days old to treat aggressive eye cancer. It saved Harper’s life, however three years on the little girl lives with some of the side effects of the cancer treatment – the most serious being severe to profound hearing loss. So recently the Bulli couple was faced with another heartbreaking choice – should she continue with hearing aids or should she undergo cochlear implant surgery.

Their decision to do the latter was validated – when Harper’s face lit up with joy and astonishment when the bilateral implants were switched on. ‘’We didn’t have to make a decision with the chemo – it was the only option – so this was harder in a way,’’ Mr Rollinson said. ‘’Because when you have a cochlear implant you can’t reverse it, so it’s a big decision to make for a three-year-old little girl.
‘But while her hearing aids were giving her the volume, they weren’t giving her the clarity she needed. And while her speech was improving with therapy from The Shepherd Centre, it was behind that of other three-year-olds and that gap would only grow. So we decided to go ahead and she had the five-hour long surgery at Prince of Wales Hospital.

The couple knew there was every chance Harper would develop retinoblastoma, after genetic testing in utero revealed she had the RB1 gene. Mr Rollinson carries the gene, and had his right eye removed due to a tumour at 18 months old, and replaced with a glass eye. The couple’s first-born, son Eli, was tested when he was six months old and a small tumour was discovered on his retina, which has been successfully treated with laser and cryotherapy. But Harper’s tumour required stronger treatment, and while prognosis is positive, it’s been a rough ride. ‘’She started chemo at just 12 days, and had six rounds over the next six months,’’ Mr Rollinson said. ‘’The treatment was successful but both her and Eli have to be examined under anaesthetic every 12 weeks – up until they’re about six or seven. Eli’s vision is not affected at all but we’ve been told Harper will only have peripheral vision in her right eye. But it’s absolutely inspirational to see how resilient she has been and it amazes me – she’s such a strong individual with a heart of gold.’’

Harper & parents

 

Harper, pictured with parents Luke and Katie, is getting used to the implants.

Harper Rollinson

 

With her parents and brother Eli, 4

The Shepherd Centre spokeswoman Jo Wallace said chemo-induced hearing loss was relatively common for children. ‘’A number of children come through our services undergoing treatment for cancer,’’ she said. ‘’I really feel for them, as going through cancer is big enough and they then have to deal with the aftermath of treatment, such as hearing loss.’’ Ms Wallace said early intervention was key for kids with hearing loss. ‘’Giving children access to sound as soon as possible is essential to their development,’’ she said. ‘’If that is via implants, we help the whole family through the process, and offer ongoing support, therapy and mapping services.’’

Mr. Rollinson praised the centre, and Australian Hearing, for their support. The Rollinsons’ have also helped raised awareness and funding for the many other organisations which have helped them with their journey – including the Children’s Cancer Institute and Camp Quality.

Events Coming Up

22 Apr 2018;
10:30AM - 02:00PM
Illawarra Cochlear Implant Support Group
03 May 2018;
10:30AM - 12:00PM
Thursday Social Gatherings
20 May 2018;
11:00AM - 03:00PM
Sunday BBQ - May

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