Brooke and Charles’ Story: Bridging the communication gaps

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Alana

    Deaf Children Australia (DCA) has been thrilled to be part of the VidKids Alliance which has been providing remote hearing and vision services and filling some of those gaps for the past two years. But as a pilot program, VidKids’ Commonwealth Social Services funding will end in June.

    Broke and Charles smiling together

    Brooke and Charles loved signing with everyone at the Talking Hands Camp

    Deaf Children Australia cannot give up on the children and young people, their families and their communities, that we have been helping. The VidKids pilot program has proven that through the sophisticated new video education technology we have been trialling, DCA has the capacity to reach out to children, young people and their families in the most remote communities across Australia. By being able to interact on screen, our team of dedicated support workers has helped children and young people develop their Australian Sign Language (Auslan) skills. We have helped them bridge the communication gaps so they can access allied health services. We have been there as mentors – to listen, understand and guide. Now we have the tools to remove the tyranny of distance and enable personalised support – and we want to continue to connect deaf children with other deaf children, and families to other families. Yet we are now challenged by the costs.

    “I still need this support because I am going to be deaf for life” – Brooke

    Thirteen year old Brooke was diagnosed at three years of age with a moderate to profound hearing loss. Her mum Tania says, “Brooke had a year of early intervention support but that stopped when she started school. Since then, we have struggled to access enough support because we live in a remote farming community.

    “We had a Visiting Teacher come to the school occasionally in the first couple of years and again in Grade 6 and this year. For years, there was no Visiting Teacher for our whole region so we haven’t had that consistent assistance at school.”

    Deb signing to Brooke

    Brooke and support worker Deb have connected online regularly to practise Auslan together

    When Tania asked Brooke how she feels about the possibility that her weekly connections with DCA’s support worker Debra Swann could end after 20 months of support, Brooke became emotional. She spoke through her tears: “I feel upset because I want to talk to Deb – she understands me because she is deaf too. VidKids has helped me learn sign language. It wouldn’t be the same if anyone else teaches me. Deb and I link up, learn new signs each week and talk about everything. Through VidKids, I get to meet new people and talk to them in sign language. We don’t have any other deaf kids out here and it’s helped me to talk to others. I don’t want to stop linking up with Deb and meeting new people and doing all the fun stuff like camps. Deb has helped me with her knowledge of school with learning plans too. I am scared that I will forget Auslan if I don’t get to talk to her any more. Then if I am with other deaf kids on camps, I won’t know anything and I will feel left out. And I want to grow up being connected to both the Deaf and hearing worlds. I still need this help because I am going to be deaf for life.”

    Tania adds, “I think Brooke feels like she doesn’t quite fit in anywhere. It is probably really common for young deaf girls to be confused with their identity and we just want Brooke to be comfortable in her own skin. It’s great for her to have someone to connect with outside the family who is deaf too. It gives her a sense of belonging. I just really hope DCA can continue this support for Brooke through this vulnerable time of adolescence.”

    “After spending most of his first five years in hospital, Charles really hasn’t had a language his whole life.” – Support Worker Vanessa Adzaip

    When Charles contracted bacterial meningitis at eight months of age, he was paralysed, experienced profound hearing loss and lost the ability to speak because his vocal folds were paralysed and his upper airways were partially blocked. Charles lived in a hospital as a little boy for four years. His life only turned around when foster mum Barb took him in. Barb is a mother of six, grandmother of 16 and foster mum to three other children and she gave Charles a loving home as well.

    Charles and his foster mum

    Charles and his devoted foster mum Barb

    Her commitment to care for Charles, with all his challenges, has been extraordinary and she deserves all the support she can get. He is no longer paralysed but at eighteen years of age, Charles still struggles with his mobility. Up until last year, he had a tracheostomy tube to allow him to breathe through an opening in the trachea. Charles has chronic lung disease but can now breathe more comfortably. Barb still feeds Charles through a gastrostomy button in his stomach.

    DCA’s Darwin based support worker Vanessa Adzaip explains, “With no speech, Charles had learned very basic signs and really hasn’t had a language his whole life. Through the VidKids program, Deaf Children Australia has been able to build upon his Auslan and his range of signs is expanding all the time.” Barb says, “It has helped Charles immensely. And socially, to have people signing along with him, means so much. It makes him not feel so bad. But if we lost this support, we would probably come to a standstill again. Charles needs a lot of help to build his language more.”

    Vanessa adds, “Charles has relied on his visual arts communication which is very unique. In my view, his art is a form of communication… and communication is a form of art. Charles often laughs when he is learning Auslan which is a fun way of communicating very visually and naturally. He can now express his needs and communicate with other people without feeling so anxious. On camp, Charles has been enjoying himself, signing with the other kids and joining in the activities. I want to help continue Charles’ education in Auslan in order to break his communication barriers and help him to have a better life. I feel that one day, Charles could be a famous artist.”

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