RIDBC Summer 2015 Quarterly

The RIDBC

uarterly

Music helps Lila learn Vincent is ready for high school Greg is thriving with his cochlear implant

Summer 2015

From the Chief Executive A look at Royal Institute for Deaf and Blind Children (RIDBC) this quarter.

With the end of the year fast approaching there is so much going on at RIDBC! We are busy developing the next five year strategic plan, including increasing access to RIDBC's services in local communities across Australia and showcasing best practice through the development of centres of excellence. These centres will ensure that RIDBC and other industry organisations can achieve the best outcomes for children and adults with vision or hearing loss.

Our new site in Canberra is now open, with renowned ENT surgeons, Dr Peter Chapman and Dr Tim Makeham, joining us at this new location. We welcome the seamlessness that this ‘total’ approach to hearing services will provide.

Canberra's new, state-ofthe-art facility will also allow RIDBC to expand our vision services in the region - so that those with vision loss receive the best care and achieve the best outcomes.

Of course, none of this would be possible without our wonderful donors and supporters. With this Quarterly we congratulate Rita Barnett on her recent OAM and thank her for her wonderful foresight as a future bequestor, providing a lasting gift to RIDBC in her will.

An exciting new initiative is the RIDBC oneCOMMUNITY alumni program, designed to reach out to those of you who have a personal connection to RIDBC. Join the program to hear about our latest news, events and opportunities.

To find out more, visit: ridbc.org.au/alumni In November, the Qantas Pathfinders Revue celebrates its 40th Anniversary! Talented Qantas staff will again deliver five incredible performances and we thank Pathfinders and Qantas for their wonderful support.

I would like to take this opportunity to personally thank all of you for your ongoing support of RIDBC. Your commitment has made 2015 another successful year. I wish you the very best for the festive season and a healthy, safe and prosperous 2016.

Chris Rehn RIDBC Chief Executive

(l-r) Joel Griffiths; RIDBC Chief Executive, Chris Rehn; Richard Owens AM; and Michael Bridges, at Hunter's Sight & Sound for Kids lunch in August.

The Sight & Sound Committee and major sponsors, C S Civil and Bristol Paints, joined supporters to help raise over $50,000 for RIDBC.

(l-r) Natalie, Lila and RIDBC Speech Pathologist, Caren, use fun activities to help Lila learn language - like bathing her toy animals and making the water sounds 'splish, splash, splosh'!

Music helps Lila learn When Natalie was pregnant with Lila a scan at 26 weeks picked up two heart issues.

Just 19 hours after Lila was born, she had her first heart operation. Lila was later diagnosed with CHARGE syndrome and her parents turned to RIDBC for support.

Lila is now two years old and is developing new skills with support from RIDBC. “By the age of seven months Lila had already had 186 medical appointments," said her mother, Natalie.

"She has significant hearing loss in both ears and the structure of her ear impacts her balance - so she's only just started crawling. We also know that her field of vision has been impacted."

Lila attends RIDBC Matilda Rose Centre, which provides services to families looking to access the expert advice and support that will allow their child to develop relationships, communication and language.

"Lila recently received her

second cochlear implant through RIDBC," said Natalie.

"Within a week of being 'switched on' at RIDBC Matilda Rose Centre she was turning towards me when I said her name!

"Lila's vision is also improving with support from her RIDBC Vision Consultant, and she is receiving physiotherapy and occupational therapy to support her range of needs."

Music therapy has been incorporated into Lila's program.

"Lila learns well with music, so Caren, her RIDBC Speech Pathologist, decided to put together a music therapy group with other families," said Natalie.

"Lila absolutely loves it!

To see her progress with this social interaction is incredible. She said 'hello' for the first time in one of these sessions.

"When you have a child with multiple needs you can feel very isolated. Chatting with other mums in the group you know you aren't alone."

Lila's future is looking bright.

"From the time Lila was born I was always told by doctors that it was the worst case scenario," said Natalie.

"Now that's changed. Lila's success is purely down to the approach RIDBC takes.

Lila nearly jumps out of my arms with excitement when she sees the steps at RIDBC Matilda Rose Centre."

Greg is thriving with his cochlear implant For 56 year old retired motor mechanic, Greg, recent cochlear implant surgery through SCIC Cochlear Implant Program, an RIDBC service, is proving to be life changing.

Twenty years ago Greg began to notice his hearing was deteriorating.

"At first I did nothing about it, but it just got worse. Four years went by and I stopped realising the sounds I was missing out on," said Greg.

"When you lose your hearing it becomes exhausting asking people to repeat themselves, so you end up withdrawing. It's isolating. I received hearing aids but they just weren't helping."

Greg was referred to SCIC Cochlear Implant Program in Penrith.

"I thought a cochlear implant wouldn't be possible, because of the cost, but that's not the case," said Greg.

"Life after switch on has been brilliant. I just haven't looked back. I can hear rain hitting the ground. I can't remember the last time I heard that.

"From the moment my implant was 'switched on' I could hear people speaking. I no longer have to lip read to get by, it's astounding."

Unlike hearing aids, cochlear implants don't just make sounds louder. They are a complex device that can mimic the hearing function of the inner ear.

"If you wear hearing aids, but you still struggle to hear in crowded places, find it difficult to hear on the phone or are no longer

With his new cochlear implant, Greg can now hear his cat, Ruffnutt, walking over glass! able to hear children's voices clearly, then a cochlear implant could be for you," said RIDBC Clinical Operations Manager, Eleanor McKendrick.

"At SCIC Cochlear Implant Program, we see many people who thought that hearing aids were the only option. However with implantable technology like the cochlear implant, that isn't the case.”

Greg is now looking forward to getting back to the things he enjoys.

"I can't wait to get back to spending time with mates and going out into the city," said Greg. "I think anyone struggling with their hearing needs to just get onto it - go get some help."

For more information about cochlear implants or SCIC Cochlear Implant Program, visit ridbc.org.au/scic.

You can also read an extended interview with Greg and his sister, Lesley, in the latest SCIC Cochlear Implant Program newsletter at ridbc.org.au/scic-staytuned

Rita Barnett OAM, who has dedicated herself to charitable causes, has been supporting RIDBC for forty years.

Rita's tireless support continues Rita Barnett OAM, who received a Medal of the Order of Australia for her tireless work in the charitable sector, has been supporting RIDBC since 1975. Rita recently decided to continue this support by leaving a bequest to RIDBC in her will.

When Rita married her husband, Kenneth, 14 years ago, Ken was worried that all Rita's work supporting Australian charities would leave little time for their relationship!

"At the time I was supporting 22 organisations," said Rita.

"He worried I wouldn’t have time for him – so I cut it down to 16!"

Rita had always enjoyed sports such as sailing, as well as working as a stock car driver and a navigator in car rallies. Then, in 1969, a serious car accident saw her leave the workforce – and that is when her work with the charitable sector began.

"In 1975 I joined the RIDBC Lantern Club in Gosford, one

of a number of community fundraising groups set up in support of RIDBC," said Rita.

"I was a member of the club for more than twenty years.

"When I left the club that didn't stop me from supporting RIDBC – I helped with stalls and raffles and anything else that was needed. I was keen to stay involved as I saw that the children supported by RIDBC needed the help of the community."

Recently, Rita made the decision to leave a gift to RIDBC in her will.

"I've now been connected to RIDBC for forty years and I just want that support to continue into the future," said Rita.

"The children are the next generation and they need the best support and the latest technological advancements to succeed. We've gone a long way in this generation but it's our future generations that will need a little bit more again.

"I also find it personally satisfying to know that I am helping others. I feel that I have been blessed – I am 86 years old and I have been blessed with reasonably good health. I suppose that I feel that I have the time to think of others."

For more information about leaving a bequest to RIDBC in your will, contact RIDBC Bequest Development Officer, Sharon Dove, on 02 9872 0325.

Vincent is ready for high school 12 year old Vincent, who has vision loss, is preparing to start high school in 2016 with support from RIDBC School Support Service (Vision Impairment).

When Vincent was a baby his parents, Sharon and Paul, noticed something was wrong with his eyes.

"At 10 weeks of age we saw an ophthalmologist who noticed that Vincent wasn’t following light," said Sharon. tbc

Vincent was diagnosed with nystagmus, a fast, repetitive, and involuntary movement of the eyes.

"In grade three Vincent started attending Newington College in Sydney and we began accessing RIDBC for support," said Sharon.

"Vincent's RIDBC School Support Teacher, Pranitha, visits him twice a week and is just wonderful. The program is always tailored to Vincent, rather than trying to make Vincent fit into the program."

As part of RIDBC School Support Service, Vincent receives support from Pranitha, a specialist teacher of vision impairment, as well as a range of other professionals, such as orthoptists, access technology consultants and large print transcribers.

RIDBC is now supporting Vincent to transition to high school with a range of low vision aids.

"Low vision aids mean he can participate fully in class," said Sharon. "These adjustments give him the access he needs to gain confidence – he doesn’t feel

With RIDBC's specialist support, and access to low vision aids, Vincent is able to participate in class alongside his peers. like the odd one out.

"Vincent needs larger print for exams, screen magnification software to enlarge text, and an iPad to read PDF documents. Pranitha has been working with Vincent and the school to prepare him for using an interactive whiteboard next year."

Vincent is thriving with the right support.

"In terms of the future, I just hope that Vincent achieves to his potential," said Sharon.

"Due to all the support we get he has a great chance of studying, pursuing his music or going for whatever job he wants. He recently took a lead role in the school musical and he is hoping to be part of the school's flute choir next year. His vision loss doesn't limit him."

Thank Y ou

RIDBC wants to say thank you to all the generous donors and community fundraisers who supported our work throughout 2015.

It is thanks to your ongoing support that RIDBC can continue to change the lives of thousands of children and adults with vision or hearing loss across Australia.

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