BROWN-EYED blonde four-year-old Abbi Keating of Shortland is part of a profound subculture. It is the culture of the Deaf.
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She’s a bouncy child who loves music and dancing, drawing and playing. She loves being with her mum, big brother and baby brother and hugs her pre-school mates every time she’s with them.
She also lives in the world of the hearing, thanks to a Cochlear implant she received in her right ear in September 2015 and a hearing aid in her left ear.
With intensive therapy Abbi talks to both worlds, the deaf and the hearing, through spoken language and Auslan sign language. Her support services – sign language lessons, hearing lessons, combination lessons – are giving her the best chance to lead a normal childhood and she is embracing it with both hands.
“Life’s changed a lot since finding out Abbi was deaf,” says her mum, Amy Keating. “The hardest thing was facing the obstacles, like people thinking she was broken when she’s not, thinking she needed to be fixed.
“We don’t feel she’s broken, we don’t feel she’s different in any way. It just makes her that little more special, and we want to fit into her world, not her fit into ours.”
Abbi was born at John Hunter Hospital to Amy and Paul Keating on January 25, 2012. She passed her newborn babies hearing test and was thriving, happy and healthy for the first six months of her life, just starting to taste pureed vegetables for the first time.
Then Abbi became ill. Very ill.
“She stopped feeding, which wasn’t normal for her,” her mum says. “She was breastfed and that’s all she wanted to do was feed, most of the day.
“Once she stopped feeding, I started getting very worried. And she became lethargic to the point where you couldn’t wake her, and her temperature skyrocketed. It happened over 48 hours and progressed really quickly. I knew something was wrong.”
Amy Keating took Abbi to John Hunter Hospital’s emergency department. It was diagnosed as a suspected ear infection, Keating says, and they were sent home with antibiotics and hyudration fluids. But the illness persisted and they returned to the hospital where she was admitted.
Five days later she was sent home, but a blood test after a follow-up with their local GP showed signs of trouble and she was readmitted to hospital.
“By the second time she was admitted she was completely limp,” Keating says. “She couldn’t raise her hand, she had no motor control. She had completely regressed to a newborn baby or worse."
The recovery process was long and stressful. Abbi was on antibiotics for six months. She had intense physiotherapy for several months to get moving again. And although she was attentive, she was not making baby noises.
“She really wasn’t making any noise at all,” Keating says. “She would sit there and occasionally scream if something was wrong. All that baby babbling she had been doing – it just completely stopped.”
The health professionals told Keating not to worry; the child was focusing all her energy on moving and language would come in due time.
“I thought, ‘Ok, I’ll listen to them, I will try not to stress out, because as a mother that’s all you do, stress, stress and worry.”
Eventually, it became enough of a concern that Keating got a referral to public speech pathology clinic, because the judgment was that Abbi’s problem was a “speech and language thing”.
“To be honest, I never said to anyone I don’t think she’s hearing me,” Keating reflects. “She loved to watch TV or play with us. She loved interacting with people, she just wasn’t making any noise.”
When the meeting date with the speech pathologist finally arrived, Abbi was set up on the floor to play while the Amy and the pathologist talked. “She asked ‘what is your major concern?’ and I said if my daughter can’t see my face she doesn’t know I am trying to communicate with her,” Amy recalls. On instruction, Amy called out Abbi’s name progressively. Her daughter’s back was turned and she didn’t move at all.
A hearing test two weeks later confirmed a diagnosis of moderate to severe hearing loss.
“I sat there for a good 20 minutes watching my daughter hear nothing,” Keating says. “Although it was sad, I wasn’t shocked.”
The hearing test was repeated two weeks later, with the same final result. Hearing aids was ordered and another test was given with the aids in her ears.
“Abbi screamed and ripped them out,” Keating says.
That response was gut-wrenching for mum. And the beginning of a new chapter, of gradual adjustment to the hearing aids. It was a constant battle for a few months, but eventually, Abbi accepted them.
An essential step in opening up the communication between Abbi and her family, especially her mum and maternal grandmother Nejla Parmaksiz, was following a friend’s recommendation they begin using key word signing. The advice, given while waiting for the visit to the speech pathologist, came from a friend of Parmaksiz.
The family could communicate basic needs and wants – food, drink, bath, more. It was simple, but effective.
“It was just basic things so she could get across what she wanted,” Keating says. “She was starting to be a very frustrated little girl.”
The next step on the journey was consideration of a permanent hearing solution – a Cochlear implant. The device was invented in Australia and has been implanted in more 200,000 people since 1982. It is an international success story.
But deciding on the implant was not an easy decision for the Keatings.
The positive experience with key word signing had led them to Auslan, the Australian sign language widely used in the Deaf community. Just as the success rate of the Cochlear implant is increased by having it installed at an early age, learning Auslan at a young age rapidly improves communication skills for deaf children.
Keating’s initial discussions with an ear nose and throat physician were one-direction: Cochlear is the solution. And she wasn’t convinced.
“I never, ever said it’s bad, I hate Cochlear implants,” Keating says. “I’m not saying one’s inferior to the other, I’m just questioning why aren’t parents being given the information to make an informed decision. I asked what other options there were and was told there weren’t any.”
The whole family had undertaken Auslan signing classes and it was helping. “For me, signing is fun and easy. We all enjoyed it. It brought us closer together as a family,” Keating says.
For me, signing is fun and easy. We all enjoyed it. It brought us closer together as a family.
- Amy Keating, mother of Abbi Keating
The Keatings were not alone in this crossroads of life decision.
David McQuiggin, acting CEO of Deaf Society of NSW, expresses the issue clearly:
“We know that 90 per cent of deaf children are born to hearing parents. Very early in their child’s development, parents need to choose between an oral or signing approach to communication, if they are given a choice at all. The decision-makers (medical professionals and parents) in the initial years of a child’s diagnosis of hearing loss are far removed from the results of their decisions. Early childhood intervention decisions can impact emotional, social, educational and employment outcomes for deaf adults. If the oral approach does not work for the child, they may have delayed language acquisition which will negatively affect these outcomes.
“Deaf education is hugely complex and different approaches work for different people. For a percentage, oral education does work well. However, we know that the oral approach does not work for all. And yet all are channelled into it, with sign language being seen as a “last resort” when it should ideally be part of the approach from the beginning.”
Eventually, Keating changed physicians, with Dr Kelvin Kong performing the operation to provide Abbi with a Cochlear implant in her right ear.
Keating met with Kong for year, until she was sure the implant was the best decision. She was concerned about the surgery and risk of complications, and the lifestyle limitations that can come with it, such no contact sports. But she overcame her fears and made the call based on early invention.
“If I don’t do it now, they say the window is zero to five for speech and language. So if I waited untili she got to 10, the chances of it being successful were a lot lower. If later she decided she didn’t want to live in the Deaf world and she wanted to live in the hearing world, I’d really let her down by not giving her as much opportunity as I could.”
Abbi’s world is full: Monday and Tuesday she has listening and reading lessons with a support teacher; Tuesday includes a private session with a sign language teacher; Wednesday she meets speech pathologist Aimee Robinson at the Hunter Cochlear Implant Centre to work on spoken language and awareness of sound and how to make sounds; Thursday and Friday she attends pre-school at the Royal Institute for Deaf and Blind Children’s centre in Tingira Heights.
The journey is far from over, but Amy Keating is confident Abbi’s life is on track.
“I think she’s going to go far. She’s a smart kid,” she says. “She recently had a developmental assessment. Cognitively, she came out as a five-and-half year old. Yes, she is delayed in her speech and language but she is making improvements every day. But the thing that I love, that puts a smile on my face constantly, Auslan is Abbi’s stepping stone. Abbi learns something in sign and it so quickly is followed by something in speech. And when I watch her sign, she’s got so much passion.
“It’s her language. It might not be her language forever, but right now it is. It’s her language and she loves it.”