In this issue:
- From the Chief Executive
- Sky is the limit for young Hugh
- Lucas is learning braille with RIDBC
- Elise is gaining confidence with support from RIDBC
- Henry is thriving at RIDBC
- A brand new RIDBC website is coming soon
- Join the RIDBC conversation
It’s hard to believe that we are already in the final quarter of the year. For RIDBC it has been a busy year indeed! By the end of 2012, RIDBC will be working out of four new sites and we will be assisting more children and families than ever before.
I am delighted to report that RIDBC has received a large grant from Newcastle Permanent Charitable Foundation to launch ‘blended services’ in the Hunter, Gosford and Lismore areas. This grant will enable RIDBC to deliver face-to-face sessions along with in-home videoconferencing sessions to families in the region. I look forward to providing further updates on this exciting project soon.
Within this edition of The RIDBC Quarterly you will find a range of wonderful stories about children who were born with hearing or vision loss. Hugh, who lives in Ballarat, Victoria, is enrolled in RIDBC Teleschool and uses a cochlear implant and hearing aid to access sound. There is also Lucas, who has been advancing his braille skills with help from RIDBC. Like Hugh, Lucas commences school in 2013, and we will follow their progress with great interest!
In December we will farewell our long-serving Director of Children’s Services, Jan North, who is retiring. Jan has been instrumental in implementing so many of the signature services of RIDBC and will be greatly missed. Jan has been an outstanding leader, a highly talented educator in her own right, and has served on the RIDBC Executive and Board for over 20 years. We wish Jan well and thank her for her remarkable contribution to the development of RIDBC.
Can I take this opportunity to thank you for your ongoing interest and support of RIDBC and wish you the very best for the festive season and 2013.
Janet and Degen’s son, Hugh, is three and a half years old and has hearing loss. The family lives in Ballarat, Victoria, and accesses Royal Institute for Deaf and Blind Children (RIDBC) Teleschool which provides families in regional and remote Australia access to specialist support via high quality videoconferencing technology.
When Hugh was born with hearing loss it was a difficult time for the family.
“I lost those precious early weeks with my newborn to clinical appointments and a desperate search for information about hearing loss,” said Janet.
“In my determination to support Hugh, RIDBC Teleschool has been an incredible support for me, particularly as we are a country family and we struggle to find quality services close to home. RIDBC has taught me so many strategies to promote Hugh’s learning.
“I learned more in my first RIDBC Teleschool sessionthan I had read in any book or ascertained from any person. Accessing the service has been the best thing I’ve ever done.”
RIDBC Consultant/Speech Pathologist, Neryl Horn, continues to work to develop Hugh’s speech and language.
“I encourage very high expectations about the precision of Hugh’s speech and language, to help make maximum use of his hearing. When we are not sure what Hugh means, we say “I don’t understand” and let him take the challenge of clarifying what he said,” said Neryl.
“Hugh is using his hearing extremely well to develop spoken language which is above average for his age.” Janet is very hopeful about Hugh’s future.
“We are currently focusing on transitioning Hugh into a mainstream kindergarten in 2013, so we’re definitely thinking about that a lot,” said Janet.
“The fact is, though, the book isn’t written for Hugh. Children are now receiving specialist services, technologies and education programs at such a young age. So for Hugh, who was diagnosed with hearing loss by three weeks, received hearing aids by eight weeks, and has had the benefit of the expert early intervention services of RIDBC – the possibilities for his future really are endless!”
When Lucas was nine months old, parents Renae and Adam noticed a problem with one of his eyes. After a diagnosis of significant vision loss the family began on a difficult journey of appointments and assessments.
When Lucas was diagnosed with vision loss the family went through a challenging time.
“If Lucas wasn’t visiting an eye specialist he was in the hospital, because the condition that causes his vision loss also means he has brittle bones which break easily,” said Renae.
“We were referred to the Royal Institute for Deaf and Blind Children’s (RIDBC) Early Learning Program (Vision Impairment) for support and began receiving fortnightly home visits from our RIDBC Consultant, Maria Lupton. This early support has made such a huge difference.
“Lucas is also regularly assessed by specialists from the RIDBC Assessment Unit, including a psychologist, speech pathologist, orthoptist and technology consultant. Having these specialists in the one unit really streamlines Lucas’ therapy – they even organise their visits to coincide, lessening the timetabling burden on me. That’s an incredible help to me as a mum of three children, two of whom have additional needs.”
RIDBC Consultant, Maria Lupton, says that Lucas, who is now five, has made impressive progress.
“Lucas has come so far,” said Maria. “We are now working on early literacy, numeracy and school readiness skills.
As braille will be Lucas’ main form of literacy we’re also focusing on him learning how to use his Mountbatten Brailler, which he loves,” said Maria.
Lucas has made excellent progress with his language development, social skills and his ability to follow instructions however Renae recognises there will be more challenges ahead.
“I always feel like I am on highalert because Lucas is very active and we have to take extra precautions to prevent him from falling over. I have had to learn to relax and take a step back so that he can learn through his own experiences,” said Renae.
“I am so grateful for the support I have received from RIDBC. Maria is not just a consultant, she has become our friend. Lucas is always excited to see her and he asks me every day if she’s coming to visit!”
Julie and Gavin’s daughter, Elise, was diagnosed with hearing loss at birth. The family has been receiving support from the Royal Institute for Deaf and Blind Children’s (RIDBC) Early Learning Program (Hearing Impairment) since Elise was three months old.
After a diagnosis of hearing loss, Elise was fitted with hearing aids in both ears at just nine weeks of age.
“When Elise was born we were not aware of any genetic hearing loss in either family – so the diagnosis was completely unexpected,” said Julie. “After the initial shock we started looking for information about hearing loss and early intervention services. Thankfully we found RIDBC.
“The home visits offered by RIDBC were exceptionally convenient for me as a mum with a young family. Our RIDBC Teacher/Consultant, Lynne Richards, made my family aware of the multitude of small details that we needed to consider to give Elise the best chance.”
“That information is incredibly important when you are trying to communicate with a baby who cannot talk to you. It is just so difficult to know what they can and cannot hear.”
Elise is now four and attends RIDBC Nepean Preschool, a reverse integration preschool purpose built to cater for the needs of children with vision or hearing loss. Children from the community also attend and are excellent language and learning models for their peers.
“Elise is very independent and affectionate, yet she struggles to hear in a group environment. To prepare her for her transition to a mainstream school we are working hard on building her confidence and participation in group settings,” said Julie.
“Being in an environment like this where you can meet other parents of children with hearing loss, gives you such confidence – you don’t feel alone. When Elise was diagnosed it was so daunting, but RIDBC has given me the information and the resources and the reassurance I needed to know I was doing the right thing. It has been wonderful – I couldn’t have made it through this without RIDBC’s support!”
Soon after little Henry was born he was diagnosed with significant vision loss, and then a cognitive delay. Parents Michelle and Jonathan don’t know what caused Henry’s disabilities but he is now doing well with support from the Royal Institute for Deaf and Blind Children (RIDBC) Alice Betteridge School.
Henry is fourteen years old and in Year 8 at RIDBC Alice Betteridge School, which caters for school aged students with a significant vision or hearing loss, as well as a level of intellectual impairment.
“We don’t have a name for the syndrome that has caused Henry’s disabilities, despite going through all the genetic testing,” said Henry’s mum, Michelle. “Eventually my husband and I stopped asking ‘why?’ and started investigating ways to make sure Henry received the expert support he needed.”
Henry began his education in mainstream schools before enrolling in 2012 at RIDBC Alice Betteridge School, where he is thriving.
“Henry loves to talk and sing, he’s a bit of a joker,” said RIDBC Teacher, Leisa Hadley. “For Henry, learning activities need to be fun and motivating.
“Henry loves maths, so we focus on functional real life maths skills, and we are improving his literacy skills by using a computer with enlarged icons and font. Henry loves using the gym so that’s his reward for being motivated in class – he just loves using the balance beam. We’re also working hard to develop his clarity of speech.”
Michelle is grateful for the expert support Henry receives at RIDBC.
“Henry is so charismatic and funny, it’s such a joy to know he’s now in the right place to receive the best support and education,” said Michelle.
“Whilst he still has many challenges to face – including the possibility that his vision will deteriorate further – at RIDBC nothing seems to be a problem, nothing seems insurmountable. When you are caring for a child with significant additional needs it can be a huge challenge, but RIDBC has made our family feel so welcome.”
Our new website is launching in December. It will have lots of events and ideas for ways you can get involved. Be sure to come and check it out!
To subscribe to the new RIDBC e-newsletter go to www.ridbc.org.au/newsletter