Seven year old Arden attended DCA’s Family Camp in October with her mum Tanya, step-dad Billy and ten year old brother DJ, along with 21 other families. Tanya said, “There were so many children and families from all walks of life. We found it really brilliant and reassuring in so many ways. When the wonderful young women on the Youth Panel spoke about how they overcame their challenges, it blew my new partner Billy and I away. I was in tears listening to their experiences of bullying but each young woman was just so inspiring. We worry that there might not be as many opportunities for our children who are deaf but the youth panel proved that with the right resources, they can get there. They made Billy and I feel confident that no matter what Arden comes up against in life, she will be able to defeat it. She never has to miss out on anything because she is deaf.”
“However she lost her hearing, the most important thing was they saved her life.”
Tanya explained that Arden has a progressive hearing loss from a life threatening illness she suffered as a tiny baby: “Arden contracted RSV (Respiratory Syncytial Virus) – which was like acute bronchitis – at just eight weeks of age. Symptoms closely replicated meningitis so she was treated for meningitis for 48 hours until they got a clear diagnosis. Arden had to be resuscitated three times and was a very unwell little girl.
Her hearing loss was progressive from then. I noticed issues around six months of age, and was certain there was something wrong by eight months. Specialists were unsure if the hearing loss was related to the meningitis antibiotics, lack of oxygen or too much oxygen as Arden was on a ventilator for ten days. But however she lost her hearing, the most important thing was they saved her life.
Arden’s father had some difficulty accepting the diagnosis of profound deafness but the audiologist showed us how much Arden was missing by beating a drum behind her. Arden didn’t even flinch. She got cochlear implants at 18 months of age but I realised she needed a lot more support to help her reach developmental goals.
We lived just out of Darwin and there were so few supports for her in the Northern Territory at that time. Thankfully, DeafNT became part of DCA when Arden was three years old and we were able to access their VidKids video outreach program. We started learning Auslan as a family and received much needed advice, all through the video connections. Arden then started pre-school and the Teacher of the Deaf explained it would be difficult to access the additional assistance she would need in the classroom. When I explained I was originally from Melbourne, she said it would change Arden’s life if we would consider moving back to Victoria with her.
I sought advice from DCA’s National Helpline Coordinator Greg who was able to pass on his experience as a parent of deaf children from a regional area himself. I realised there was so much I didn’t know about the supports available in Victoria. I had no idea that schools with deaf facilities existed, or that some schools taught Auslan as a language to all students.
Without the guidance of Deaf Children Australia, our audiologist and the Teacher of the Deaf, I wouldn’t have known that there were more supports out there for Arden. I am so very grateful.
Relocating to Melbourne has definitely been the best for Arden’s future, even though the children’s father decided not to follow us. It has been worth all the pain and tears to give Arden the best opportunities in life. All the opportunities for Arden have flowed on from those connections we made through DCA and those early conversations in the NT.
When we moved down, Arden attended the Early Learning Centre at a deaf school and now attends a deaf facility at a school where DJ also attends. It’s fantastic that all the kids learn Auslan at school there. DJ is Arden’s greatest advocate and they are best mates. They had developed their own form of sign language before they learned Auslan and they still sign to each other in their own language. They have such a strong bond.
Arden is doing well at school now but she has had a speech delay and experienced some difficulty learning to read. Some of the sounds in her speech weren’t necessarily the same and higher frequency sounds like ‘s’ and ‘th’ were particularly challenging. So Arden’s teacher sat with her in front of a mirror and taught her how to position her tongue and produce those sounds. They knew all those strategies to help with her speech and her reading. We are so excited that Arden recently reached her end of year reading goal a term early, and she loves to write and draw. I am sure she wouldn’t be progressing so well if we didn’t have that specialist expertise.
I feel it’s important for me to learn Auslan together with Arden and DJ so we started attending DCA’s Auslan for Families classes two years ago. We met a volunteer there who provides Auslan swimming classes so we travel across town for swimming each weekend too. I feel it’s so important to give Arden the opportunity to learn Auslan. Right now, she is doing well with hearing and deaf friends. She isn’t left out and she does get invited to parties.
Yet as Arden gets older, she may increasingly start to notice the differences with her hearing peers and then, it may be important to be able to develop a network of culturally deaf peers. We want her to have the best of both hearing and deaf worlds because Arden will always be deaf. Implants certainly aren’t a cure.”