Maggie determinedly completed her secondary schooling in 2020, and is now eighteen in her first year living independently whilst studying at University. She continues to love sport and spending time with her friends outside of school. 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.
Mum Bronwyn described both the diagnosis process and medical support to be inadequate and frustrating. From the Optometrist who blurted the diagnosis to 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.
'The kids need to have something that's really positive in their lives so they need to have some outlet."
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 provides her with many opportunities, including making social connections. Sport has been such an impactful power in her life on all levels, from playing Deaf Netball and Football to rowing at State level. She now has her sights set on trialling for the Paralympics in paratriathlon one day. Bronwyn agrees, saying sport has been an unexpected positive and is the most organised of all activities aimed at children with deafness.
“They need to grab hold of something that they can excel in and direct them into a way that has social opportunities for them.”
Bronwyn has 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 far and wide to increase language exposure and early life on the family farm with her extended family, to flying to Perth for a deafblind conference which allowed Maggie to meet others with Usher syndrome. Maggie believes these experiences had a positive impact on her self-determination and assisted in the development on her speech and language when she was younger.
Bronwyn recommends that all parents do their own research and educate themselves on Usher syndrome and make connections through social media. She believes knowledge will greatly help parents be the best advocates for their children and ensure their kids get all the resources they need to succeed. Maggie encourages other kids and teens to be open and honest about what they need, saying ‘make it easier on yourself and ask for help’.