New articles are published every month under the headings below.

Rose Murfitt: Rotorua cochlear implant girl's story of determination

Sept 2018 New Zealand Herald

Rose Murfitt

Rotorua's Rose Murfitt, 12

Rotorua's Rose Murfitt and her family are living, breathing examples of the benefits of fighting for what you believe in.Ten years ago the Rotorua Daily Post highlighted the case of then 2-year-old Rose, whose family was expected to find $20,000 for speech therapy and audiology services because her cochlear implant operation was carried out in the United States. Rose became the face of a campaign by her grandmother Jennifer Minty for better public funding for all deaf children with cochlear implants.Minty's efforts were never just about her own granddaughter - the family turned down an offer to publicly fund some of Rose's treatment, because the Ministry of Health would not extend the offer to other children in the same situation. Their persistence paid off as the law around funding was changed and now included all children who received implants overseas.

"We took the Government to task over it and we won. We changed the law. I was thrilled, I really was. It was a big deal," Minty said.

Rose MurfittRose Murfitt (left) and grandmother Jennifer Minty pictured on Loud Shirt Day in 2008. Ten years later the pair continue to proudly support the cause. Being unable to hear can be a huge barrier to learning and socialising, but with her implants Rose, who is now 12, is excelling at school and enjoying a life of inclusion.

"Everything's going pretty good," Rose said - a modest answer from a girl who is in the accelerated programme at Kaitao Intermediate School.

Tiffany said her daughter "lived in both worlds”. "The implants make a huge difference. Even if she just takes off the external device, she's completely deaf. Without them, she wouldn't have been able to learn how to speak with clarity and she'd be reliant on sign language. "It's not a cure for deafness at all, but it's a tool. She's still part of the deaf community, but she's also part of the hearing community. She is fully integrated and mainstreamed, like every other kid her age, and we're looking at high schools for next year."

Cochlear implants help Maisy take on the world

Sept 2018 Manawatu Standard

Maisy Taylor loves her new ears so much her mum has to smuggle them off her at night to recharge them.The three-and-a-half year old was born profoundly deaf, and two years ago had two life-changing cochlear implants. Mum Katie Taylor said Maisy's hearing loss was picked up early, and she was initially fitted with hearing aids. But by the time she was 18 months old, it was clear to her she was not hearing. She was alert, drinking in information about the world through her eyes, but not responding to her name.

Maisy Taylor

Cochlear implants are no barrier to taking part in swimming lessons for Maisy Taylor, 3

Taylor said on the day she had her implants, her spoken language development was reset to that of a newborn. Two years later, she was closing the gap, hearing like a two year old and speaking like she was two-and-a-half or nearly three. "Our goal is for her to catch up by the time she starts school.” Taylor said it took time to help Maisy. "We talk a lot, and have to remember to speak slowly and clearly."

Maisy gets extra help from a teacher of the deaf when she goes to kindergarten in Bulls, and has things to do at home to help her understand some of the concepts people put into words.

"They say they do miss out on some things, like the things others overhear."

Noisy places, such as an indoor swimming pool, could be a challenge but on a quiet day at Feilding's Makino Aquatic Centre, Maisy is all ears for instructor Sara Kennard as she splashes like any other kid.

Signing or spoken language?

Sept 2018 RIDBC in Australian Hearing Hub

The parents of children who are deaf or hard of hearing can often feel like they need to make a choice whether to pursue spoken language or Australian Sign Language (Auslan) for their child, but as Callie’s family have shown, it doesn’t have to be either or.

 As a newborn, Callie was diagnosed with profound sensorineural bilateral hearing loss, meaning she has permanent hearing loss in both ears.  While it can be challenging for new parents to understand their next steps, Callie’s parents felt more prepared than most. Both of Callie’s parents are deaf, and so were able to call on their own experiences, as well as those of their own parents, to make decisions. 

Callie

Callie’s mum, Jordanna, grew up using sign language, and immediately knew that a combination of Australian Sign Language (Auslan) and spoken language were important goals for Callie’s future.  RIDBC Early Learning Program for hearing impaired children can incorporate both spoken English and Auslan in an integrated program – a feature that, Jordanna says, made her choice easy.  

“I met with RIDBC Early Learning Program Consultant, Katie, and I liked the fact that I could see she used both speech and Auslan – they were used interchangeably, and I knew that would really give Callie access to both worlds,” she said.

 Not all the decisions Callie’s parents would make were as easy as this one. The decision to get a cochlear implant was one of the hardest.  Jordanna doesn’t have a cochlear implant herself and is a proud member of the Deaf community.  “I don’t feel like I need to hear,” she explained. “I am proud of who I am and being deaf is part of that.”  In considering their options, Callie’s parents realised that a cochlear implant didn’t mean forgoing Auslan – Callie could, and would, have both.  “There is a mistaken belief that people have to choose sign language or a cochlear implant.  But that’s simply not the case – I want to give Callie every opportunity - I want to give her the whole world. A combination of speech and signing with a cochlear implant was, for us, the right way to go.

 “It wasn’t an instant decision, it was a process. I did a lot of research before coming to a conclusion – and it’s a decision I don’t regret.”

 RIDBC’s early learning program team work with each family to set goals and create individualised plans to achieve the outcomes that are important to them.   Callie began seeing the team at RIDBC as a young baby, when it was all about supporting her family to help her develop through play.  “Callie had amazing eye contact and I remember Jordanna signing ‘Incy Wincy Spider’ to her – there was a lot of really beautiful communication happening very naturally in the family,” said Katie.

 Katie worked with the family as Callie grew, identifying whether cochlear implants were an option, and then supporting the family in their decision.  Once the decision had been made, Katie and the team worked with Callie to develop both her Auslan and English skills.

Callie & Jordanna “It’s a unique situation as we are essentially supporting Callie to develop two languages. We work very closely with the family to do this.  For example, sometimes I will read a book to Callie and then Jordanna will talk to her about it in Auslan,” she explains.

At just three years of age, Callie is now bilingual, fluent in Auslan and English, in which she has reached equivalency with her hearing peers.  Callie is attending RIDBC Rockie Woofit Preschool, where the RIDBC early learning program team will continue to work with her to prepare her for the transition to school where Callie will be ready to take on the next challenge.

Kiwi kid born deaf, now speaks three languages

Sept 2018 Otago Daily Times

Cochlear implants were a game-changer for a 4-year-old Kiwi who was born deaf and now speaks three languages. At four weeks old, Matthias Berndt was found to have severe hearing loss in both ears. At just 2, the youngster's only shot at hearing was to undergo a 4-hour surgery for cochlear implants.

The surgery was a success and nearly two years later not only can Matthias hear sounds, he can speak three languages: German, Mandarin and English.

The youngster has learned from his Chinese mother Inga Wang and German father Clemens Berndt who speak in their native tongues as well as in English.

Matthias BerndtAt home in Auckland, Matthias speaks Mandarin and German, and when he's at kindergarten or communicating with friends he speaks English.

Wang said Matthias was a very sociable kid and he so desperately wanted to join in on conversations, he was keen to learn all three languages.

"He can turn his implants on and off and sometimes if I'm talking to his brother he feels like he is missing out so he asks me to 'get his ears'."

She said he was very fluent but his hearing problems created challenges - something Wang's oldest son didn't have to cope with.

"He learns from listening but with Matthias he has to make an effort. At least once a week I have to sit down with him for over an hour for Mandarin reading time and he really has to concentrate," she said.

Berndt said being deaf doesn't have to restrict kids from living a normal life.

"Because Matthias was able to get cochlear implants, he no longer has to miss out."

Wang said Matthias turned to her after the operation and said "I can hear the birds" - and that brought a tear to her eye.

"High frequencies like the sound of birds were usually hard for someone with cochlear implants to pick up but he did."

Shepherd Centre set to move to Campbelltown

Aug 2018 Campbelltown Macarthur Advertiser

Hearing is something that most of us take for granted. For Camden child Elliott Grech, it can be an everyday battle. Elliott, 2, was born with moderate hearing loss and started wearing two hearing aids when she was just six-weeks-old. The Grech family have been supported by the Shepherd Centre as they continue to support Elliott with her condition. However the nearest centre in Casula is an hour-round trip away. Soon that driving time will be slashed significantly. The Shepherd Centre is inching closer to building a facility in Campbelltown.

The centre was founded in 1970 to teach children born deaf or hearing impaired how to develop their spoken language. Elliott’s father Brendon Grech said the centre had provided invaluable support and encouragement for his daughter. “Elliott has done amazingly well and her need [for help] has dropped off considerably,” he said.

grech family

Kye, Elliott and Brendon Grech relax in their Camden home

“Elliott needed early intervention at the Shepherd Centre and now she is speaking so well.

“My wife Kye and I were both carriers of the hearing loss gene, so Elliott was a one in four chance of being affected.”

The organisation announced the plans to build a centre locally in 2015 and organisers received a major boost the following year when Sargents Pies made a $950,000 donation. A block of land has been acquired in Moore Street, Campbelltown but close to $4 million needs to be raised before construction begins. The local centre will support families in the Campbelltown, Camden, Wollondilly and Southern Highlands. Mr Grech said the Campbelltown construction would benefit many local families. “I would recommend the Shepherd Centre to anyone who needs that would kind of support,” he said.

shepherd centreThe Shepherd Centre provides support for people who have hearing issues

Fundraising efforts will again ramp up next month when a dinner dance is held in Leumeah.

Macarthur’s Quota clubs have teamed up to organise the event at Wests Leagues Club. Ingleburn Quota club incumbent president Julie Percival said she was proud to fundraiser for the Shepherd Centre. Ms Pervival said Quota’s mandate included supporting people who were deaf or had hearing issues. “The Shepherd Centre does a great job working with babies and pre-school aged children to equip them to enter mainstream school,” she said.

Swinburne’s Get Talking App teaches hearing impaired infants to speak

Aug 2018 Swinburne University of Technology

swinburne

Student testing a child’s interaction with characters providing a sense of fun

Researchers at Swinburne School of Design are developing an app that teaches hearing-impaired infants to speak. They are collaborating across disciplines to create this world-first digital learning tool. The idea for the app started with Swinburne Senior Lecturer in Media and Communications Dr Belinda Barnet, who developed a way to teach her own child to speak using standard early intervention paediatric speech pathology exercises.

“A great change has swept deaf culture in the last six years. The change is most dramatic among babies who are born profoundly deaf. These children no longer grow up learning to sign or attend deaf schools,” Dr Barnet explains. “They are detected by sophisticated equipment within days of birth, given cochlear implants before 12 months of age, and learn to talk. “Babies have a critical window to acquire fluent speech post implant and it starts to close after 12 months of age,” she says.

Dr Barnet along with Department Chair, Health and Medical Sciences, Rachel McDonald; Emeritus Professor Leon Sterling; Director of Swinburne Baby Lab, Associate Professor Jordy Kaufman; and School of Design Associate Professors Simone Taffe and Carolyn Barnes are collaborating on the project.

In 2016 Swinburne PhD student Caroline Tjung started working with the team in an investigation involving four digital app designs. Her research focuses on how to translate paper-based speech therapy programs and face-to-face therapy into the digital environment. This year research began as a Swinburne collaborative design program with sixteen Master of Design students and two speech therapists in four research groups and prototypes designed for a children’s speech app.

swinburne app

Students with parent and child working on ideas for the app

The apps feature stories and games requiring speech recognition with parents and children interacting and working together. They are designed as interactive teaching tools for hearing impaired infants from six months to three years.

Ms Tjung is investigating the role of design, languages and the number of words needed for the apps. Using mood boards that six-month-old babies to three-year-olds like to look at, she is researching how they translate to digital. She is using rhyming, stories and repetition, testing for entertainment and distraction values. She is working on four app designs to test in the Swinburne BabyLab. Based on her findings a prototype design will be developed by August 2019.

swinburne appOne of many app design layouts - Storyland with conceptual characters and worlds

Design has a pivotal role in steering through the complex formative stages. Visualising the process and prompting discussion through prototypes. The role of colour, rhyming, and repetition in storytelling and how they are activated in a digital environment is an essential element to the research. “We want to understand how to capture a baby’s attention. How much screen time a baby should have is a debatable issue and we are drawing on the Swinburne Babylab’s research and advice on this,” explains Ms Tjung.

How a kid with 'profound deafness' made it all the way to the Magpies

Aug 2018 The Roar

I fell in love with footy at a young age – my dad was a pretty mad keen supporter, so it was only natural to follow in his footsteps. Playing it at school, the challenge of competing against everyone, was really enjoyable, and, as a Geelong supporter, going down to Kardinia Park was a highlight. I always harboured the dream of playing AFL.  It’s a long journey to make it to the top level though and everyone has their different challenges. For me, there was one particular hurdle to jump over that not many others have had to face.

I was born with profound deafness. Basically what that means is that I was born without any hearing whatsoever. When you’re talking, I hear nothing. I require a cochlear implant to hear. I only have one, which is on my right side. It has made things a little different – I’ve probably had to display more resilience than other people – but it has been that way my whole life, so it’s all I really know. I can’t compare it to anything else.

It was a lot more noticeable in my early years and, as a kid, you look around and wonder why you are different, and what being different might mean. As I’ve grown older, I’ve got used to it. Honestly, the worst thing that happens these days is I might have to ask someone to repeat themselves.

People often see the funny side of it. They’ll go “Sam, I only had to call your name six times!” or something like that, and we share a laugh over it. It’s not something to take too seriously any more.

Part of the appeal in playing footy as a kid was the chance to prove to myself that I could pretty much do everything anyone else can. I played a few other sports too – tennis, cricket, basketball. I also did swimming but that didn’t work out too well. I was always finishing near the end, not because I was a slow swimmer, but because I couldn’t hear the starter gun!

I always dreamt of making it to the top level in footy and honestly never thought deafness would prevent me from getting there. It was something that was built into me at a very young age by my parents – they always told me I could be whatever I wanted to be, whether it was a footballer or a rocket scientist. I’m very thankful to them for instilling some mental strength and resilience in me. Because of that, I always backed myself to make it on my own merits and never saw my deafness as something that would hold me back in any facet of my life.

collingwood

Sam McLarty is getting closer and closer to making his AFL dream a reality

It did provide challenges along the way. Obviously, footy is a very vocal sport and it’s not possible to rely on my teammates to tell me what to do, because I can’t hear them. When you’re learning footy it’s very see-ball-get-ball, but coming into the top level it’s been more of a challenge, and my ability to overcome that is something that’s still evolving. That forces me to rely on my eyesight a lot more, but that’s become a strength. My ability to read the ball in flight and pluck it out of the air, along with my competitiveness, is what got me drafted.

I had a lot of great support along the way from my school Yarra Valley Grammar and the Oakleigh Charger as well as my mates and family. They were fantastic, I can’t thank them enough. Dealing with many sceptics wasn’t something I ever really had to do – if they were out there, they never really told me. But drafting a player is an investment and I’m sure there were questions asked. Fortunately, Collingwood never saw my deafness as something that could jeopardise my career.

It was a similar case last year with Jaidyn Stephenson – who the club drafted despite concerns over a heart condition – and look how he is playing. It’s a credit to the professionalism of the club’s doctors. You do hear whispers before the draft but nothing is set in stone. Andy McGrath didn’t know he was going to go No.1 until the day, and if Andy doesn’t know then who does? In the end, it was a relief and – having had a bit of a shoulder injury during my draft year – it was a surprise to go at pick 30 in the end. I had family and friends around and it was an awesome night, a really special moment.

Being in and around Collingwood feels great. A lot of the boys are saying it’s as inclusive and fun as it’s ever been. The mood’s very positive here and the best part is that’s translating onto the field – it’s a great place to come to work every day. My dream of becoming an AFL player hasn’t been achieved just yet, but I’m so focused on getting that first game. When I do, I can’t wait to be wearing black and white.

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