Tilly Linturn is a delightful, energetic preschooler full of curiosity and a million questions.
But unlike other five-year-olds, she can't ask them. And if she could, she wouldn't be able to hear the answers.
Tilly is profoundly deaf and will rely on sign language to communicate for the rest of her life.
Twelve months ago, when Tilly's NDIS funding was approved, Jane Linturn was hopeful that her daughter would finally get the help she needed to learn Auslan.
But the Illawarra mother-of-four quickly found that accessing an Auslan tutor who would be able to provide the individualised lessons Tilly required would not be simple. Now, she says, she is "getting desperate".
On this day in 1989 the first Auslan dictionary was published, initiating Auslan Day on April 13, a day to reflect on the physical language used by deaf Australians to communicate.
Decades later we know the benefits of learning sign language but access to tutors, as Ms Linturn has found, is still a barrier for many deaf and hearing-impaired children.
An unexpected diagnosis
When she was born, Tilly, who is now a preschooler, failed the SWISH (Statewide Infant Screening – Hearing) test in her right ear, but Ms Linturn and her husband Andrew were told that was probably caused by fluid in their daughter's ear.
"We were sent to Sydney's Children's Hospital for testing, and it turned out her right ear is profoundly deaf," Ms Linturn said.
"It's a sensory neural hearing loss with auditory neuropathy and she has an enlarged facilia aqueduct in that ear diagnosed through MRI."
Tilly was a "surprise baby", coming into the Linturn family decades after her siblings, some of whom have children of their own.
"On the day she was diagnosed we were expecting them to say, 'The fluid has cleared and she's all good', but when they came back in the room the lady had a folder which read, 'So your child has a disability'," Ms Linturn said.
"Thankfully my husband is optimistic, and he said whatever the issue, we can face it together. He's the Yin to my Yang."
Their next stop was Australian Hearing, which gave Tilly a hearing aid and a referral to the Shepherd Centre which is a world-leading, child-safe NDIS service provider specialising in helping children with hearing loss.
"The Shepherd Centre were fantastic," Ms Linturn said.
"They were the greatest support, helping us to understand the diagnosis and setting us up with speech therapy and support groups with other parents plus music classes."
When she turned three, Tilly underwent surgery to have a cochlear implant placed in her right ear but gradually the hearing in her left ear also deteriorated and the family found it increasingly difficult to communicate with her.
"We've had some terrible times," Ms Linturn said.
Deaf tutors signal the way forward
As everyone in the family was keen to learn Auslan, the Linturns reached out to the Deaf Society looking for a tutor.
"They will only tutor for a minimum of two hours [a day] in your home and there was no way I was going to put a three-year-old through two hours of face-to-face tuition," Ms Linturn said.
In order to care for their daughter, both parents now work part-time, which means finances are tight.
And while they appreciate the help they get from the NDIS, Ms Linturn says if all the money is spent on learning Auslan, there will be none left for other aids that Tilly needs.
They have been trying to find a tutor to come to their home to teach them and Tilly Auslan face-to-face for one hour, which they feel is an appropriate length of time to expect a young child to be able to concentrate for. But their efforts have so far proved futile.
At Cedars Christian College Prep Program in Farmborough Heights, the school has embraced Tilly initiating an inclusivity program in which her classmates are encouraged to learn the names of fruit in Auslan. Tilly, too, now recognises these words.
"They do Auslan at afternoon tea-time," Ms Linturn said.
"And Tilly often stands with the teacher and she signs back and forth with the children handing out their choice. It's really lovely and she is very happy there."
Face-to-face or online learning?
When the pandemic started, a lot of Auslan programs went online.
Ms Linturn took the opportunity to purchase the Lisa Mills program and has been learning sign language herself so she can teach Tilly simple words like "please" and "thankyou", but she has concerns.
Brett Casey, chief executive officer of Deaf Connect, says knowing the right approach to raising any child is a difficult and confusing prospect for any parent — and has added complexities for parents of deaf children, particularly hearing parents who have not been exposed to the deaf community previously.
He says that access and exposure to other deaf people and the broader community is important but that communication pathways for children do not have to be black-and-white choices.
"Learning from a deaf Auslan user, ideally in a face-to-face setting, allows for an authentic introduction to the language, but also [an understanding of] the cultural and historical significance of Auslan to the deaf community," he said.
