Early intervention for hearing issues proves sound success
There were tears when James and Marta Rogers were told their tiny first-born daughter was deaf and there will probably be tears again when she starts Prep at a mainstream school later this month.
It has been a remarkable first five years for Lucia, who'll start school ahead of her age milestones thanks to a Queensland program that is a world leader in providing services and support to deaf children and their families.
It was a standard screening test for newborns that picked up a problem with Lucia's hearing.
At first her failure to respond was thought to be linked to her small size - she was 2.5kg at birth.
Her diagnosis was confirmed at just two months old, setting the Rogers family on a journey they never imagined they'd be taking.
"You don't know what the future holds,” Marta says. "For me, it was will she be able to hear me say I love you? Will she be able to speak properly?”
For many parents, it's the unknown that magnifies their fears - so it's comforting to hear a story of a well-oiled system that provides a clear pathway for children and their families to access the services they need.
Within a fortnight Lucia was fitted with hearing aids. It's now known sound should be introduced as soon as possible to babies to allow the crucial early wiring of auditory processing pathways in their developing brains.
James shows the moving video of Lucia experiencing sound for the first time in an audiologist's rooms.
Her eyes open wide in wonder and delight, she smiles and gurgles, her arms and legs jolt with excitement. It is, quite simply, beautiful to watch.
Two weeks later, the family were at the Hear and Say Centre at Varsity Lakes, one of five in Queensland dedicated to helping deaf children access sound through technology and equipping them with the gift of language.
In 2017, the centres recorded an incredible 100 per cent success rate in preparing children to enter mainstream schools through their Early Intervention Program.
In a world where so much attention is given to services that aren't working, Hear and Say has been quietly getting on with its mission.
The centres were founded by Brisbane speech pathologist Dimity Dornan who was inspired by the progress of auditory-verbal programs in teaching deaf children to speak in other parts of the world and started working with six children in her husband's physio rooms in 1992.
Through centres in Brisbane, the Gold Coast, Sunshine Coast, Townsville and Toowomba, Hear and Say programs have helped more than 9000 children.
In the past, many deaf children were taught sign language which effectively restricted much of their communication to those who also knew signing.
The Hear and Say philosophy is to teach children - and their families - the skills that will help them not only to talk but to flourish in the real world.
The centre's clinical manager Jessica Balfour-Ogilvy is one of only a handful of certified listening and speaking speech pathologists in Australia. The Varsity facility has two.
"We work in partnership with families,” she says. "We teach them the skills and guide them so they can work at home with their children every day.
"For the work we do here, the families do it times 10 because they play such a big role in developing the listening and language skills.”
For Marta and James, it meant starting "radio commentating”, the habit of describing to Lucia everything around her.
"She can't hear what's far away so when you see a truck, you say 'That truck goes brmmm brmmm' so you can establish that connection for her,” James says.
"We got into the habit of talking about everything. It's just part of our life now.”
It's also led to some amusing encounters.
"We went to Mount Tamborine for a drive one day and next to us was a girl eating chips. I said to Lucia, 'That girl's got chips. When she eats them, they go crunch, crunch, crunch.' You forget people hear you too. The girl stopped, gave me a bit of a funny look and turned the other way.”
The Hear and Say techniques also reward children for making sound.
"She went through a stage where she wanted to point at things,” Marta says. "You have to encourage her to speak, to make any sound to start with, then to turn it into a meaningful sound.”
The chatty home environment has had the added benefit of advancing their second-born Daley's verbal skills.
The two-year-old is just as much at home at the Hear and Say Centre as his sister, with it having been part of his life as well.
"He understands Lucia needs her hearing aids,” James says.
"Even from a young age, if he ever grabbed them, he would never put them in his mouth. He would always give them to his sister.”
Marta and James later learned Lucia's hearing impairment is genetic, with both James and Marta carriers of a set of genes linked to hearing impairment in female children.
"The geneticist was quite amazed,” James says. "I'm from Australia and Marta comes from El Salvador (she migrated to Australia with her family when she was five).
"He was pretty excited, saying 'What are the chances you would both have this when you're from other sides of the world'?”
It's not a question they dwell on. Their focus has been on giving Lucia a normal childhood experience.
Hear and Say has been there to provide support and advisory services to others in Lucia's life as well, including her day carer and later her kindergarten.
Last year, Lucia's kindy took part in Hear and Say's annual fundraising initiative Loud Shirt Day that also aims to boost awareness of people with impaired hearing.
"They explained to the class how the teacher wears an FM (a microphone device that transmits directly to hearing aids) that helps Lucia to listen to what the teacher says,” Marta says.
"They said how important it was for everyone to try to be quiet when the teacher is speaking because it helps Lucia to understand better.
"When I picked her up that afternoon, the teachers said it was the best day they'd ever had because the kids spoke in whispers all day. It was the quietest day ever.”
"It's funny,” James adds. "The FM has a red light and green light to show when it's on and when the light's red, the whole class calls out straight away.”
The next step for Lucia is what's called the Rocket program, designed for children entering Prep to help them advocate for themselves at school and take ownership of their situations.
"We teach them the technology belongs to them, it's their responsibility, and that they have to speak up for themselves,” Jessica says.
"It's about promoting resilience and confidence. School is a new listening environment. Sometimes hearing-impaired children can be like floating ducks. Everything looks calm on the surface but deep down they are paddling hard every day.”
The path through school will no doubt present its challenges, as it does for all children, but James and Marta are heartened Lucia's Prep teacher at Hillcrest Christian College has already accessed Hear and Say training off her own to bat to better equip her to help Lucia in the classroom this year.
The centres are also welcoming the National Disability Insurance Scheme rollout that will enable them to continue providing services to their graduates throughout Prep and perhaps beyond.
Since opening its doors at Varsity Lakes in 2005, the centre has had a spike in enrolments, with 34 new children on its books this year. Population growth has played its part but no doubt Hear and Say's reputation in the sector is also a contributor.
"We're very fortunate to have the system we do in Queensland where the services are streamlined, there's government funding and we work with each other,” Jessica says.
"I go to conferences and other places around the world are so envious to hear what we have here.”
That said, only 40 per cent of Hear and Say funding comes from the government.
The centres must rely on philanthropy and their own fundraising to continue their work, which includes ongoing research, access for rural and remote children, hearing screening programs for school-aged children and advocacy work.
For families like Lucia's the centre has been the guiding light for their journey.
"Hear and Say has been involved from the start,” Marta says. "Once you're in the system, it feels like everything is taken care of. It's such a weight off your shoulders.
"It's not just coming in for therapy - it's coming to playgroup and having the parent to parent support you get through the centre. It's one big community.”