The RIDBC
uarterly
Clive’s overcoming the obstacles
A new world of sound for Charlie
Summer 2014
New centre gives Azayliah the best start
From the Chief Executive A look at Royal Institute for Deaf and Blind Children (RIDBC) this quarter. It’s hard to believe it is November already! It has been a busy year for RIDBC, not least because of the recent integration of SCIC into RIDBC’s family of services. Whilst the cochlear implant is no longer a ‘new’ technology, it does facilitate excellent access to the sounds that are critical for speech and language development in children, as well as a return to the hearing world for those who develop hearing loss later in life. I hope that you enjoy reading this edition of the Quarterly. Within these pages you will read about Clive who has vision loss and lives in Canberra. Clive accesses RIDBC Teleschool, which supports over 190 families around Australia. With the integration of SCIC Cochlear
Implant Program into RIDBC, along with changes to the ACT Government’s delivery of services to children with a sensory impairment, we are now finalising plans for a new site in Canberra to improve access for those living in and around the ACT. 2014 was full of exciting milestones and achievements. Congratulations need to be extended to the RIDBC Lantern Clubs for reaching their 50th birthday in 2014. 50 years of fundraising for RIDBC is a significant accomplishment and we are indebted to these dedicated volunteers for their ongoing support. I would also like to acknowledge Professor Greg Leigh who was awarded the Order of Australia (AO) in
The Hon Jillian Skinner, MP (centre), officially launched the merger between RIDBC and SCIC, creating SCIC Cochlear Implant Program, an RIDBC service
this year’s Queen’s Birthday Honours List. Greg’s work with RIDBC has focused on significantly improving the lives of children who are deaf or blind. He has also contributed broadly to the sector, advancing the cause for children with vision or hearing loss, and the professionals who support them. Thank you for your ongoing commitment and support of RIDBC throughout 2014. Over 6000 lives are enhanced through our many high quality services, made possible only with your continued support.
Chris Rehn RIDBC Chief Executive
Clive and his mum, Emma, are being supported by RIDBC to ensure Clive is ready for ‘big school’
Clive’s overcoming the obstacles Complications during heart surgery led to Clive losing his vision. Now, three years on, Clive and his family receive support from RIDBC Teleschool from their home in Canberra. To look at Clive you might never suspect that he is legally blind. “Clive had heart surgery at two weeks of age and went into cardiac arrest,” said Clive’s mother, Emma. “Fluctuating blood pressure during surgery damaged his optic nerves, causing vision loss.” In October 2013, Clive started accessing RIDBC Teleschool, which supports families across Australia using high-quality videoconferencing technology.
“When you are from Canberra you get used to going to Sydney for appointments,” said Emma. “So finding RIDBC Teleschool was fantastic. “In April this year we attended an RIDBC residential vision week for families. We thought Clive’s vision was
OK as he could get around quite easily, so speaking with other parents was a real eye opener. We discovered our ‘he’ll be fine’ attitude wasn’t uncommon. Children who are young appear to cope quite well!” Clive is now learning braille with support from RIDBC. “When a child is young everything in their world is quite big, so they might cope with print with magnification – but this will eventually affect their reading speed and fluency,” said Clive’s RIDBC consultant, Kylie. “The smallest font Clive can read is size 24 and for him that’s like reading a phone book – it’s exhausting.” RIDBC is helping Clive develop his tactile skills. “We are giving Clive access
to braille, print and voiceover technologies so that he isn’t restricted by his disability. We’re getting him used to the idea that you can read with your fingers!” said Kylie. “Clive doesn’t yet have a braille machine so we’re using games like placing balls in a muffin tin to make braille code. We are also working on touch discrimination, placing toy animals in a pillow case and asking him to reach in to find a particular animal.” Clive’s parents are optimistic for his future. “We don’t want Clive’s identity to be ‘I’m vision impaired’. He is vision impaired, but he’s also a bright, engaging child who is capable of doing anything he sets his mind to,” said Emma. “RIDBC is giving him the skills he needs to achieve that.”
50 years of fundraising! In 2014, RIDBC Lantern Clubs celebrated their 50 year anniversary. Established in 1964, the clubs have together raised more than $14.5 million for RIDBC through their community fundraising initiatives. When RIDBC Lantern Clubs were first established their motto was ‘affording light to the blind and guidance to the deaf.’ Now, 50 years on, Lantern Clubs across NSW continue to raise funds in support of RIDBC. “Lantern Club members are enthusiastic and committed volunteers who have played a vital role in ensuring RIDBC can continue to make a difference in people’s lives,” said RIDBC Chief Executive, Chris Rehn. “The clubs work extremely hard raising funds through a variety of initiatives – anything from garage sales to raffles, opera concerts to fashion parades. Not only do the clubs support RIDBC through these considerable fundraising efforts, club members also act as important ambassadors for RIDBC in the community.”
Today, 21 Lantern Clubs with a volunteer base of 950 people, continue to raise funds for RIDBC. “RIDBC was pleased to hold a celebratory morning tea with past and present Lantern Club members to acknowledge the 50 year legacy of the clubs,” said Chris. “There were many familiar faces at the event, and it was fantastic to see the community of support that has been built over many years of service.”
RIDBC Chief Executive, Chris Rehn, with RIDBC Lantern Clubs President, Jan Bell, cutting a special Lantern Club light cake at the 50th anniversary celebrations Currently Lantern Clubs operate throughout NSW, from as far north as Camden Haven, as far south as Batemans Bay and as far west as Dubbo. Lantern Clubs offer members the chance
to provide vital support to people with vision or hearing loss in a fun, social setting. To join the Lantern Club community, contact RIDBC Lantern Club coordinator, Jennifer Muir, on 02 9872 0326.
RIDBC consultant, Moira Hickman (left), with Shantell and Charlie, who is learning to recognise the new sounds he hears
A new world of sound for Charlie Shantell and John welcomed their son, Charlie, into the world in January 2014. Then, a series of hearing screening tests revealed that Charlie was profoundly deaf in both ears. “We were shocked. I didn’t know anything about hearing loss – I didn’t even know what a cochlear implant was,” said Shantell. “A few days later I started to tell friends and family and they introduced me to other families they knew who had experience with hearing loss. I realised there was help out there and that’s when I found RIDBC.” Charlie was enrolled in RIDBC Early Learning Program and became the first child to receive cochlear implants through RIDBC Nepean under the new SCIC Cochlear Implant Program, an RIDBC service. “It was great having SCIC and RIDBC working together to integrate his
surgery with his early learning program,” said Shantell.
“Being able to see Charlie’s clinicians and therapists in the same place at the same time, and having them communicate on all his care needs, has been such a great help.” Charlie’s cochlear implants were switched on in July this year. “When he was first switched on you could tell he could hear. His eyes lit up and he looked around,” said Shantell. “I thought he would be able to look at me and hear me – but it’s not like that. There’s a lot of learning to do and he doesn’t yet know how to
localise where sounds are coming from. The switch on is really only the start of his journey.” With the right technology, and RIDBC’s ongoing support, Shantell is confident about Charlie’s future. “It’s fantastic having the support of RIDBC. It means I haven’t had to worry too much about the future - I know we’re going to be ok,” said Shantell. “I just hope that Charlie does whatever makes him happy. I hope he can inspire other people to embrace their individuality, that he loves himself for who he is and that he doesn’t let anything hold him back.”
New centre gives Azayliah the best start When RIDBC Liverpool was officially launched in July 2014, Christine and Sarkis jumped at the chance to begin accessing support for their daughter, Azayliah, who is one year old and has both vision and hearing loss. Azayliah was born with a rare syndrome called Branchio Occulo Facial Sydrome. “That’s when our family’s journey with RIDBC started,” said Sarkis. “Azayliah was diagnosed with a bilateral cleft lip and palate, hearing loss and a heart defect, at only a few weeks of age. “We wanted to access RIDBC’s services but hesitated because they weren’t in our local area. I work during the day and am the only one who drives as Christine has epilepsy.
“RIDBC Liverpool really changed everything. It’s so close to home and the staff are so flexible – which is very important. When your child has a disability you end up juggling so many appointments.” Sarkis said RIDBC’s team of specialists work together to streamline Azayliah’s therapy. “As parents you want a team of professionals working together to meet your child’s needs and that’s how RIDBC works,” said Sarkis. “It’s also great for Azayliah, seeing familiar faces all the time.” Sarkis has been overwhelmed by the significant progress Azayliah has made. “Before we started with RIDBC, Azayliah had trouble recognising and focusing on our faces,” said Sarkis. “Today, Azayliah recognises
Azayliah attends weekly sessions at RIDBC with her mum and dad, benefiting from RIDBC’s transdisciplinary early learning program not only our faces but her surroundings – she has even developed a great love of books. “When Azayliah was fitted with hearing aids at six weeks of age she struggled with identifying day to day sounds. Now, she is not only aware of her surrounding environment, she is also repeating sounds she hears!” Sarkis knows firsthand the impact of hearing loss.
“I actually have hearing loss as well and when I was growing up there weren’t really any services,” said Sarkis. “That’s why early intervention is such a big thing for us. With early intervention, the response we are getting from Azayliah is amazing – she recently said ‘mumma’ for the first time. I didn’t learn to speak until I was three years old. You just cannot put a price on what RIDBC provides.”
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