Hunter lost his hearing as he started Prep. This is his story, told by his mum Amelia.
“Hunter was always a really happy, outgoing little boy. He just couldn’t wait to start Prep last year. He loved his first days and weeks. He would run into the classroom so enthusiastic. Hunter wanted to start reading… he wanted to learn everything there was to learn.
Then one day, Hunter lost hearing in his right ear. Only a matter of weeks after starting school, his world as he knew it crashed down around him. We found out Hunter could hear a drum beat and he could hear high pitched noises but he couldn’t hear voices through that ear at all. He struggled to hear the teacher. He struggled to hear his friends in the playground where there were so many voices, laughter and yelling. And he just withdrew into himself.
Hunter stopped playing with his toys and he stopped playing with his friends. He cried all the time and started sucking his thumb again. He shrieked like a hyena, testing his hearing. Hunter refused to go to school or even leave my side. He stopped eating and he completely disengaged from almost everything and everyone. At the age of five, he had experienced an emotional breakdown. At the beginning, we got a lot of support from the Royal Institute for Deaf and Blind Children and we spent two days on site at their Sydney facility working with their psychologists and paediatrician. We were told Hunter was experiencing a major depressive episode. As a parent, how do you deal with that – knowing that your child is so completely devastated by something that felt beyond our control?
We had to wait six months before we could get an MRI to rule out the possibility that his hearing loss was caused by a brain tumour. Thankfully, the MRI was clear but those six months while we grappled with Hunter’s hearing loss and depression were so hard.
I was desperate for guidance. I got on to Roz at Deaf Children Australia’s Helpline. She reassured me and encouraged me to be an advocate for Hunter – so we could access the services that he needed. She referred us to Deb at DCA who has provided brilliant ongoing support to Hunter and my husband Brenton and I. Deb advised us on how to manage meetings with health service providers and the school. When we told the principal that Hunter had developed a hearing loss, she replied, ‘We have never had a deaf child at our school in 90 years’. We told her, ‘You do now – so we need to figure out together how we can support Hunter.’ We have learnt together.
Children like Hunter tend to fall between the cracks in the school system because he is not bi-laterally deaf.
He wasn’t technically eligible for a Teacher of the Deaf and he had no additional funding to support him but we lobbied for a Visiting Teacher to attend once a term and she comes in now. It was Deb who was instrumental in teaching us how to navigate the system and how to advocate for Hunter. Deb has also met with the school and is going to deliver hearing awareness training. Hunter now has a hearing aid and in Grade 1, is really fortunate to have a teacher trained in special needs. He has a sound field system in the class and he is now the best at reading and writing. Hunter was starting to lose the ability to decipher some letters and blends and was hesitant to speak so we realise he needs a speech therapist. As his genetic hearing loss progresses, Hunter will lose all the hearing in his right ear and he might lose the hearing in his left ear as well. I have been told I could also go deaf… but that is the least of my concerns at the moment.
The emotional journey has been the toughest part of Hunter’s hearing loss. We are trying to rebuild Hunter emotionally and that takes a long time. But after DCA’s family camp that we just attended, he has been extraordinarily much happier. It was great for him to be with other children with issues like himself for the whole weekend and it was good to get away as a family. We have seen a distinct change in Hunter’s character since then.
The team at Deaf Children Australia have become our advocates, our sounding board, and our information providers. They have provided the camp and other recreational activities. But most importantly, they made us feel we weren’t going to go mad on our own trying to deal with Hunter’s hearing loss and breakdown. They were always there for us when times were really tough.”