Experience can empower parents raising children with hearing loss

Roseanne Frendin and her mum, Julie who is part of the Parents of Deaf Children Taree support group.

Roseanne Frendin and her mum, Julie who is part of the Parents of Deaf Children Taree support group.

WHEN Roseanne Frendin was born in 2000 there was no sign of the challenges to come.

At the time the newborn hearing screening had not yet become mandatory so it wasn't until she was three-years-old that she was diagnosed with moderate to severe hearing loss.

"At that time, in rural NSW it was a five hour round trip to the nearest Australian Hearing Centre," said her mum, Julie.

"It took her a long time to get used to her hearing aids and FM system.

"We have learnt much about the difficulties children experience growing up with hearing impairment.

"One of the most significant things we learnt was that putting on a pair of hearing aids is not the same as getting a new pair of glasses. There is so much more to be considered in communication, such as eye contact, good lighting over the speaker's face, purposefully working on vocabulary knowledge and providing structured opportunities for development in auditory comprehension.

"Roseanne loves one to one conversations and she loves to read."

Julie, who is a committee member of the Parents of Deaf Children (PODC), encourages families who have children with hearing loss to come along to the roadshow.

"It's a real honour to have these ladies (Leonie Jackson and Kate Kennedy) come and make themselves available and make contact with parents."

Both have firsthand experience raising children with hearing loss.

"If you can get along to the drop in centre and talk to the ladies they can give advice and because they have been through it themselves they can help you devise a plan of attack.

"When parents walk away with concrete strategies in their hands they feel more empowered and feel they have more knowledge".

Julie knows how challenging it can be living in regional and rural areas and not having as much access to services as those living in metropolitan areas.

"There's a need in regional areas for greater access."

This is one reason she is thrilled the roadshow will be visiting.

Julie is part of the Parents of Deaf Children Taree support group, which meets quarterly and where parents discuss a range of issues including how to speak to school personnel about problems their child is experiencing and how to explain it to teachers, social issues and ensuring young people don't feel isolated.

"Even though they have a hearing aid it doesn't automatically fix the communication issues."

Support from friends is important.

While Roseanne, now 14, is still finding her way socially, Julie says it is important for her to have friends who are really supportive of her hearing needs.

"When two adults have a conversation you give 50/50. With a child with a hearing impairment it might be that you have to give up to 90 per cent and they're happy to give 10 per cent," she explained.

"Most young people are self-taught lip readers but any kind of background noise can interfere."

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Julie said there is an excellent audiologist in Port Macquarie who is always "on the ball" with the latest technology in hearing aids, which has been a great help to her daughter.

She also highlights the value of itinerant hearing support teachers, who Roseanne has had access to since she was diagnosed.

"When she was diagnosed we had wonderful itinerant support. Although they work through the Department of Education they work with you from birth to 18.

"As preschoolers they do home visits and are very supportive of the whole family and taught us how to communicate with Roseanne."

Roseanne's hearing problems came as a "big surprise", said Julie.

"We didn't have the birth screening then that they do now."

Those newborn hearing screens means hearing problems can be diagnosed from birth and early intervention to support the child and families can start.

"It's so much more responsive and successful."

Access to the Australian Hearing Support Service is something free of charge to families and Julie said that with the new rollout of the NDIS (National Disability Insurance Scheme) funding, the goalposts are completely changing and it will impact on families more.

"How do we advocate for children who have these needs?"

At this stage funding stops when young people reach 18, said Julie, meaning there is no support is they choose to go on to higher education. The push is to get support for young people up to the age of 26.

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