The Sandles Family

Maggie was diagnosed with deafness at eight months of age, after many months of her mother, Bronwyn, telling medical professionals that she believed Maggie was deaf.

Maggie is eighteen years old and finished high school in 2020. She loves sport and spending time with her friends. Maggie was diagnosed with deafness at eight months of age, after many months of her mother, Bronwyn, telling medical professionals that she believed Maggie was deaf. Maggie was then fitted with a cochlear implant at twelve months and, at six years old, she needed her first pair of glasses. However, it wasn’t until an optometrist referred Maggie to a specialist at fourteen years old, that she was diagnosed with Usher Syndrome.

Bronwyn described both the diagnosis process and medical support to be inadequate and frustrating. From the specialist who diagnosed Maggie without warning or support, to subsequent appointments with medical professionals, the family felt unsupported and uninformed. They were not told the impact the diagnosis may have on Maggie, with most of Bronwyn’s information about Usher Syndrome coming from the internet. The lack of integration between different medical professionals and services was also challenging to navigate.

“Always do your own research and you have to become the expert if you’re going be the best advocate”

Maggie said it took quite a while to come to terms with her diagnosis, and that she is unsure if she is yet to fully accepted it. From a young age, Maggie has found participating in sports to provide her with many opportunities, including making social connections. She is even trialling for the Paralympics in rowing and triathlon. Bronwyn agrees, saying sport has been an unexpectant positive and is the most organised of all activities aimed at children with deafness.

Bronwyn said she made a conscious effort to not treat Maggie any differently from her two siblings. They focussed on providing Maggie with many opportunities, from small things like travelling around the state and visiting the family farm with her extended family, to flying to Perth for a conference which allowed Maggie to meet others with Usher Syndrome. Maggie believes these experiences had a positive impact on her self-belief and assisted in the development on her language when she was younger.

Bronwyn recommends that all parents to do their own research and educate themselves on Usher Syndrome. She believes knowledge will greatly help parents be the best advocates for their children and ensure the kids get all the resources they need to succeed. Maggie encourages other kids and teens to be open and honest about what you need, saying ‘make it easier on yourself and ask for help’.

“They need to grab hold of something that they can excel in and direct them into a way that has social opportunities for them.”

“The kids need to have something that’s really positive in their lives so they need to have some outlet.”

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