New articles are published every month under the headings below.

Having wishes heard

April 2018 SunshineCoast Daily

When Penny Phillips and Sophy Wragnell met during a Pilates class, neither one knew it would lead to a partnership to help Sunshine Coast residents with hearing loss.

Having lived with severe hearing loss for most of her adult life, Mrs Phillips received a cochlear implant four years ago. She discovered CICADA shortly after the surgery to have her implant inserted. She said while it was the best thing she ever did, the journey after having the implant turned on was tough. "It can take a good two or three years for people to learn to decipher sounds and to talk,” she said. "It's important to support their journey and that's what CICADA does.” Mrs Phillips spends a great deal of time fundraising for CICADA, a volunteer-run, not-for-profit organisation that provides support to people to have received a cochlear implant.

Wishing Well SOUNDS GREAT: CICADA will benefit from a donation from Bellingham Maze's wishing well

Bellingham Maze owner Mrs Wrangell said CICADA seemed like the perfect organisation to donate a portion of the maze's wishing well money. "The original owner's son had hearing loss and so the wishing well has always provided money to Deaf Services Queensland,” MrsWrangell said. "So when Penny approached me and inquired about the possibility of donating some of the money to CICADA it seemed like a perfect fit because at the end of the day it's still helping people with hearing impairments.”

After cleaning out the well, nearly $4000 was collected, with $1000 being donated to CICADA.

Mrs Phillips said it's money that would help provide much-needed support and services on the Coast. "We plan on using some of this money to fund captioning at some events,” she said. "That's where someone comes in and types what is being said live so it's displayed on a big screen for people with hearing impairments. It doesn't come cheap, at about $250 per event, so this money is a huge help.”

Seven-year-old Lucy Masters raises awareness about World Hearing Day

March 2018 Yass Tribune

Meet Lucy Masters, a seven-year-old from Yass born with microtia who shared her story on World Hearing Day to help change the lives of others. Children born with microtia have a congenitally small, malformed or absent external ear. With one in six Australians currently affected by hearing loss, which is expected to rise to one in four by 2050, stories like Lucy’s are important to be shared.  Lucy and her proud parents are eager to share her story because of how much hearing loss impacted on her life, noting safety as a major concern.

Lucy Masters

Since receiving her MED-EL Bonebridge Implant, Lucy said she had found crossing the road a lot easier. “I can now hear cars coming up behind me,” she said. The first sounds she noticed when her device was activated were the sound of the cars driving past outside.  “It was the best feeling ever. Everything was so clear. It was a very happy moment. My mum cried and told me that she was so happy because it would change my life, and it really has,” she said.

Lucy’s mum, Michelle Lloyd, remembers the day Lucy was born. “The doctors told us she only had one normal ear. “Being first-time parents, we went into panic mode, not knowing what microtia was and more importantly, what future our little girl had. “But we looked down at her little ear and thought it was just beautiful and knew we would do whatever we could,” Ms Lloyd said.

It took a few trips down various paths before finding the road that would ultimately lead to the doors opening up for Lucy. It was a visit to Westmead Children’s Hospital and meeting Associate Professor Catherine Birman, a specialist adult and paediatric cochlear implant surgeon, otologist, and paediatric ENT surgeon. Lucy’s parents credit Professor Birman, as well Lucy’s audiologists at Australian Hearing Canberra, together with the support from other families that made them feel incredibly informed and supported on this journey.

Lucy said her schoolmates think she “looks cool”. “I am no different to anyone else. “I have a Bonebridge [implant] to help me hear. Some kids wear glasses to help them see. We all have something special about us,” she said. Lucy’s passion is dancing and she said she can now “keep in time with the music”. “I love music and dancing as you can express yourself. Hearing my fave songs is just the best,” she said. But more than a passion, dancing is part of Lucy’s hopes and dreams for the future, wanting to become a professional dance teacher and “be able to help other kids with hearing loss that they can live life to the fullest”.

Hunter Hero: Hearing advocate Sue Jenkins used willpower to get her life back

March 2018 Newcastle Herald

Sue Jenkins

It was Valentine’s Day, 2006, when Sue Jenkins lost the strongest link to staying connected.

“Our whole world is based on communication, speech and listening, and I just had none,” she said. “I went from being a hearing person to nothing.” The Cardiff woman went profoundly deaf on that day and was confronted with a $40,000 bill for a cochlear implant to treat her large vestibular aqueduct syndrome. It was a treatment she could not afford. At that time, patients were required to pay the full amount, and no adult had ever had the device surgically implanted in the Hunter. Mrs Jenkins would become the first woman to ever have a cochlear implant installed in Newcastle, but not without a struggle. 

The mother-of-four would need to learn how to communicate with only pen and paper. She would have to learn to lip read. Some days, she said, the impact of losing her hearing was so great she couldn’t get out of bed. “It was very dark,” she said. “Losing my hearing was absolutely devastating. I wasn’t myself and that was very hard to get used to.” With a determination to be there for her family, she knew she had to get out of the rut and “do something as quickly as I could”.

“I found the strength to raise the money [for the operation],” she said. “And because of all the amazing people around me I was able to.” Mrs Jenkins was a much-loved staff member at Charlton Christian College in Fassifern. The school community rallied around her. A little more than a year later and Mrs Jenkins had the money to receive the cochlear implant, which was provided by the newly opened Sydney Cochlear Implant Centre Newcastle, a service of the Royal Institute of Deaf and Blind Children.

“Two weeks later they switched it on … the first words I heard were my husband asking what was for dinner,” she joked. Mrs Jenkins said being able to hear again “gave back my life”.

She now works as a chaplain in aged care and uses her experience to help bring people out of dark places. “What I want to do is offer people hope,” she said. “People supported me and I want to support others. People go into dark places and that happens, but there is someone out there who cares for you.”

Mrs Jenkins is an advocate for healthy hearing and encourages people to get their ears regularly checked. “My message is to look after your hearing,” she said. “You don’t know how important it is until you’ve lost it.”

Loss leads to discovery of talent for speaking

March 2018 Kalgoorlie Miner

For International Women’s Day, professional speaker and story-teller Lisa Evans travelled to Kalgoorlie from Perth to speak at the Supper at Sunset event. “For me, it is a day of celebrating everything that is wonderful about women,” she said. “It’s also a time where we can reflect and think about those women who have gone before us and who have made great sacrifices towards equality.” She said her own success in life came after a long and challenging journey, having started out as a nurse and midwife.

Lisa Evans

Lisa Evans says losing her hearing forced her to re-invent herself at a later stage in life

“It was my dream job ... then 12 years ago, a virus destroyed a significant amount of my hearing,” she said. “It wasn’t therefore practical to work in my area. I’d specialised in neonatal intensive care, a very high-tech, challenging and demanding area of nursing.”

Her loss of hearing forced her to leave nursing, she said, but a cochlear implant led to an interest in speaking. “In losing my hearing, I sort of discovered my voice,” she said. “I’d gone through a period of feeling very isolated. I often describe deafness as an invisible disability because people don’t realise how debilitating it is.” She said she hoped her influence as a speaker could empower other women, and that women were silent achievers. “We often don’t take the time to stop and recognise or celebrate our achievements,” she said. “We simply just do what we do without any fanfare or without any expectation of any praise or recognition.”

Graeme Clark Scholarshi­p in 2017

March 2018 Cochlear

Aspirational mathematician and educator Hugh Entwistle wowed the jury panel last year and was unanimously selected as the 2017 Cochlear Graeme Clark Scholarship winner. The 20-year-old from Sydney is so passionate about mathematics and how it can be applied to the world that he is currently undergoing a Bachelor of Advanced Science Degree, majoring in Mathematics and Statistics, and will start a Degree of Actuarial Studies this year. “The glory of mathematics and how it can be applied in financial markets and probability was the main reason for my pursuit of a degree in Actuarial Studies, and I aim to finish university with a deep knowledge of how mathematical systems work and behave, and how to take advantage of them in my personal and professional life”, says Hugh.

Hugh Entwistle

Hugh has had his Cochlear™ implant for as long as he can remember, and lived life knowing that there may have been another reality where he wouldn’t hear sound. This acts as a constant motivator to push him further and succeed. “I applied for the 2017 Cochlear Graeme Clark scholarship to further build upon my life, to give back to the Cochlear community as a representative and, I would hope, a source of inspiration for others and for parents deciding which path they wish to pursue”.

It is apparent Hugh is an ambitious young man who not only wants to do something extraordinary with his life, but also be a mentor to others. He has managed to turn what should’ve been the daunting task of managing ambitions into sheer excitement and willpower.

“As an individual, profoundly deaf and with Usher’s syndrome, I am extraordinarily thankful for the opportunity that the Cochlear implant has given me, and I am dependent on it for the success that I have achieved. The Cochlear Graeme Clark Scholarship is the most humbling award that I have received. It embodies and acknowledges a more personal journey of hardship and disability and forces me to reflect on my roots – on how my current path of success has been fundamentally a result of the miracle of the Cochlear implant, and of the support that I have received from friends, family and inspirational teachers that I have been lucky enough to meet on the way. Both the financial support and endorsement that the scholarship provides will allow me to more boldly pursue my ambitions and advanced studies in mathematics, taking me steps closer to my dream of spreading and utilising the art of mathematics in education and business”.

Why the Shepherd Centre and IMB Bank is music to Matilda's ears

Feb 2018 Illawarra Mercury

When Matilda Linturn, 1, was born a test immediately showed she was not able to hear as well as other children. But not having complete hearing loss meant there was limited support available to help her integrate with other children and become ready for school. The Shepherd Centre is one not-for-profit organisation that has developed programs to help children such as Tilly. In 2017 it sought ways to do more of that. It succeeded when IMB Bank gave it enough funding to help 28 families like the Linturn’s in NSW.

Andrew and Jane Linturn expressed how grateful they were to find such support for their fourth child after being referred by Australian Hearing. “The Shepherd Centre has been an amazing blessing to our family,” Mrs Linturn said. “It was a traumatic time at the start to find out our baby had a hearing loss. To find such supportive and encouraging staff was just so reassuring. We can’t speak highly enough of the Shepherd Centre. We are so thankful.” Senior audiologist Shellie Lavery said without that funding IMB Bank’s community foundation is providing some children such as Tilly who would fall through the cracks. “At the Shepherd Centre we are a charity organisation. Even though we do obtain some support from the NDIS we still really do depend on support from others such as IMB Bank to allow us to run all the programs we have,” Ms Lavery said. “The programs aim to give children who have hearing loss or a hearing impairment a chance to reach their full potential. Children who do not receive such support may not.”

IMB Bank is presently helping prepare more than two dozen children such as Tilly to be able to attend a mainstream school and participate in classes with other children. The Halfway Hear program helps children with partial hearing loss (unilateral or mild bilateral) and may be ineligible for government support. The Shepherd Centre applied for IMB Bank funding last year to provide early intervention support programs to partially deaf children and their families.

Matilda LinternPhilanthropic help: Andrew, Matilda (Tilly) and Jane Linturn with Shepherd Centre audiologist Shellie Lavery.

Halfway Hear provides education, assessments, therapy and support through an online training program and face-to-face sessions. The first part of the program is called Talk Together. Families can access the online training modules at home and or come into the Shepherd Centre where they can be assessed and benefit from audiology and other services from the team working there. Matilda has done both.  

Children with more significant hearing loss are generally able to access more funded services than those with mild hearing loss. “Our aim is to enable the child to hear as best they can and increase their chance of integration. We want to offer the service to everyone,” Ms Lavery said. The whole program has been designed so it can be done online because the Shepherd Centre knows there are many children in regional and remote areas who may find it hard getting to one of its five centres in NSW. Mrs Linturn said the program was good for her and her husband as well.

Five families come to the Shepherd Centre in Wollongong for the program and they quickly met other parents of children with a hearing loss.  “That was really encouraging. You don’t feel so isolated,” she said. “Tilly immediately then joined playgroup and music time which she absolutely loves. She always gets really involved in music. We bought her some instruments for Christmas because that is something she is passionate about. She just loves coming here. The girls are so lovely. The big thing you are concerned about when you have a child with unilateral hearing loss is how is it going to affect their life. It can effect their speech. And of course you don’t want your child to be bullied at school which can happen. So having that early intervention and the ability to develop her speech early we hope she will be able to go to school and just be like everybody else. That is our goal.”

Tilly is already starting to say her first words. The first one was “dad”.

Deaf Coast woman can't be stopped

Feb 2018 Sunshine Coast Daily

Doctors said Erin Turner would never walk or talk when she was born, but the Coast woman now prides herself on a healthy, active lifestyle and teaches sign language. The 28-year-old had to be resuscitated at birth and was born with several health problems. At 16 months old she was diagnosed as profoundly deaf. Ms Turner also suffers from ataxic cerebral palsy. Every day Ms Turner uses Auslan sign language to communicate with people, but had to teach herself to lip read for those who don't use it. "Group situations are particularly hard as it's impossible to follow who is actually talking,” Ms Turner said. "The worst and cruellest thing is when people say things like 'it's not important' or 'it doesn't matter'.

Erin TurnerErin Turner is deaf and suffers from cerebral palsy, but living with disability won't stop the 28-year-old from living her best life

"I received a cochlear implant in 2011, and many people think I can hear well because of it. I can't - it mainly gives me access to environmental sounds. I still have absolutely no idea of which direction sounds come from.” Despite this, Ms Turner keeps herself busy working three part-time jobs and staying active. "It's really important for me to maintain fitness and muscle tone because this helps control and minimise how my cerebral palsy affects me,” she said. "I've been a disability support worker for over seven years, and have just started a couple of other totally different jobs, including teaching Auslan to a community class. "Sometimes people try to stop me doing things or think that I can't do things, but I am pretty stubborn and won't let people put me down because of my disabilities.”

Backpacker's $15,000 hearing aids stolen

Feb 2018 Otago Daily Times

A deaf backpacker's cochlear implant and hearing aids, worth about $15,000, have been stolen from the Hot and Cold Pools near Rotorua. Julia Ofele, a 23-year-old German futsal player, took off her devices to go swimming but the bag they were in was stolen about 8.30pm on February 7.
She was left with nothing but the bikini she was wearing, her towel and her GoPro, which had fallen out of her bag. "We had no keys, no money, no passport. Nothing," she said. The AA was called so Ofele and her friend could gain access to their car and get their clothes. The police were called and have GoPro footage of the thief and the number plate of his getaway car.

Julia OfeleOfele was born deaf and has been travelling in New Zealand since August.

Since arriving in New Zealand she has helped at a futsal championships in Wellington, has met and stayed with other deaf people, made repeat visits to Rotorua, walked the Tongariro Crossing and visited Abel Tasman National Park. "The nature is very beautiful in New Zealand and most people are very friendly," she said. "New Zealanders are more accepting of people who are different."

But this is the second time her belongings have been taken. With her hearing devices stolen Ofele cannot hear. The friend she was travelling with is not deaf and does not know sign language, so the pair had to write notes. "It was hard to communicate," she said. "It was fine for me because I was born deaf and I use sign language. Sign language is a beautiful language.” After eight days without sound she visited the Hearing House in Auckland, a charity for deaf children and adults with cochlear implants and hearing aids. She was able to borrow a cochlear implant until replacement devices can be arranged. Ofele has health insurance and is waiting to learn whether it covers her cochlear implant. "If they pay that's good, but if not ..."

Rotorua police area prevention manager Brendon Keenan said police regularly got reports of thefts from Hot and Cold and other tourist locations, particularly ones that were isolated. "Tourists may not know the dangers of a popular hotspot.” Keenan said the tourists got clear images of the licence plates in their GoPro footage of Ofele's theft. "We are still making inquiries and following up leads with some strong suspects."

Events Coming Up

28 Oct 2018;
10:30AM - 02:00PM
Illawarra Cochlear Implant Support Group
11 Nov 2018;
11:00AM - 03:00PM
Sunday BBQ - November AGM
20 Nov 2018;
06:30PM - 08:00PM
Preserving Residual Hearing Seminar

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Here is a link to Deafblindness support and information. They are based in Western Australia and supported by Senses Australia.

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