Deaf Children Australia’s Board of Directors is comprised of individuals with lived experience of deafness, sector professionals, parents and family members of deaf children.
Each member brings a unique perspective and helps to provide diverse governance to the organisation, working closely with the Executive Team.
Stacey is a Parent Mentor for Deaf Children Australia. Her daughter Grace is a twin, and one of three children.
“At 2 years we noticed something was wrong. Grace was not talking, making noises, or interacting with anyone – she was generally living in her own little world. A lot of people that we raised our concerns with, including friends, family and medical professionals, seemed to think we were being over reactive and overly sensitive.”
“However, parental instinct is a strong thing – and after pushing and pushing, our daughter was given a hearing test.”
Following her hearing test, Grace was diagnosed at Mater Audiology with moderate to severe hearing loss bilaterally. For Stacey, receiving her daughter’s diagnosis came with a lot of mixed emotions.
“It’s hard to explain, but there was a slight feeling of relief, to have our suspicions confirmed that there was a problem. But more overwhelmingly, we felt great sadness, guilt, and fear. We felt sadness for Grace, and I felt a sense of guilt – feeling that I was to blame. All these strange and irrational thoughts constantly popped into my head. ‘What if I’d done this?’ I found myself asking. ‘What would the future hold for Grace, how would she cope, how would people treat her?’”
“Now, I feel more confident that Grace will be okay. She continually amazes me with her progress and her beautiful happy nature. Her joyful personality only draws people toward her, and everyone who meets Grace loves her.”
When Emma’s daughter Darcy was born, she had absolutely no risk factors for deafness. A referral for her daughter to the Victorian Infant Hearing Screening Program was eventually obtained and it was discovered that Darcy had profound bilateral hearing loss.
“Some people responded with how sorry they were to hear it and some of them were slightly taken aback by our response, which is always, but she’s only deaf!”
“For six months, Darcy and I attended Australian Hearing at Moonee Ponds where we were provided with lots and lots of information about deafness, the implications of Darcy’s type of hearing loss, language acquisition and perhaps most importantly the early intervention services.”
Emma decided to embrace a bilingual approach to language which was supported by the Early Intervention Service, Aurora. With Aurora’s support Darcy was introduced to both English and Auslan. Darcy is now an especially talkative young girl!
For Emma and Darcy, as they navigated the world of deafness, they also had to navigate the much-medicalised side of hearing loss.
“It was really important that we were very comfortable with our decisions, and able to be assertive in our choices. We recognised that these individuals were expert within their fields, but they were not experts in our family, community or child.”
“Every decision we have made has been done with the belief that it will improve an outcome for her, give her choices and allow her to be a complete child who is funny, wilful, stubborn, independent, slightly dirt encrusted and happy.”
