March 2020 Mamamia
Parents Lisa and Mark Whyte have two sons: Sam, five, and Tom, seven. Sam is Deaf, and the way the Whytes see it, they simply communicate with him in a different language – Auslan. Apart from that, they view themselves as a typical Aussie family, which, of course, they are. The Whytes want to share their story so people can understand their experience of being a family who happen to have a Deaf child. “When the hospital first scheduled the four-month hearing test, I wasn’t going to go,” Lisa ssays. “My baby was responding to cues when on the change table and was laughing and babbling along. Everything with baby number two was the same as baby number one. But I decided to go last minute because I had that ‘what if’ thought. Four hours later, Sam was diagnosed with hearing loss in both ears.”
Lisa admits it was a diagnosis she wasn’t expecting, and she found difficult to cope with initially.
“I felt so alone. So powerless. The shock was indescribable,” Lisa remembers. “But only for a minute. I quickly recognised it for what it was. Sam may have hearing loss but he is healthy and he is safe. Relief! We had been gifted with the most important things any parent can ask for: A healthy child.” With that attitude, Lisa and Mark never looked back, and concentrated on investing their time and energy into Sam’s future. That eventually included moving areas to access better healthcare resources. Teaching Sam to communicate was tough in the earlier years,” she says. “We lived in The Grampians [in Victoria] and only had access to one-hour Auslan and speech therapy sessions on a fortnightly basis. Sam was one of two Deaf children in the whole of Northern Grampians Shire. It was not a real representation of the world we lived in.”
Without Auslan or words, Sam had limited means of communication that would often leave him misunderstood. “My heart used to break when I saw kids walk up to Sam, talk to him and walk away when he didn’t verbally respond. He would stand there alone, wanting to play but no one in the playground went near him,” she explains. “In those early years, we relied on our friends’ children to form friendships with Sam. We educated the kids and parents about hearing loss and explained why he wore the hearing aids. It is important for people to understand what hearing loss is and isn’t, but we had to give them that information ourselves. There were very minimal online resources available for the Deaf community, and I wish DeafNav had existed then.”
DeafNav is a new website designed to educate, inform and support all people who interact with Deaf and hard-of-hearing communities. It was developed in recognition that individuals, government departments, and healthcare workers were struggling to gain access to information and resources for Deaf and hard-of-hearing people. The information on the site is provided by a consortium of leading deaf organisations led by Expression Australia in partnership with Deaf Can:Do and Deaf Services Australia, to promote better understanding of Australia's Deaf and hard-of-hearing, and connect them with the mainstream community.
But without a resource like DeafNav, the Whytes had to move to Melbourne to access better support. It was with the help of Furlong Park School for Deaf Children that Sam was able to be a part of a Deaf community and really find the opportunities to communicate and express himself.
Lisa says it was one of the best decisions they ever made. “Within three months, Sam was using Auslan to communicate, his tantrums from his frustration about communicating had decreased to the point of non-existence, and his vocabulary had increased past Mum, Dad, and Tom,” Lisa shares. The family were also able to educate themselves in Sam’s language. “Mark and I have both completed certificates in Auslan. I have seen first-hand the difference communication makes to empowering my son to be equal and to live his best life,” Lisa says. “I want to understand what he has to say, and I want to talk to him every day.”
In October 2019, Sam had a cochlear implant placed. Lisa describes it as the next best decision they've made. “Sam started to talk, developing clarity along the way, and we couldn’t keep up with his questions and thirst for knowledge,” Lisa says proudly. “Within four months, his English vocabulary expanded from 30 to over 300 words. Finally, Sam’s intelligence can shine.” For the Whytes, the cochlear implant has been a “game changer”. “When Sam comes home from school, we sign and talk where we can. His older brother Tom has taken on the role of speech therapist and has started playing games with him that involve lots of words and repetition for rewards,” Lisa says. “It’s a lot of fun to watch them happily engage without rough playfights!”
Their journey is one which Lisa is immensely proud of. “Although Tom and I are not yet fluent in Auslan, all members of our family can communicate,” she adds. “This is what we believe equality in Australia should look like. Everyone deserves to be on the same playing field. Regardless of what our individual challenges are, with the support and love around us, we can all live our best life.”