The Carter Family

Oscar was diagnosed with hearing loss as a newborn and received cochlear implants at ten months old.

Oscar was diagnosed with hearing loss as a newborn and received cochlear implants at ten months old. Growing up, Tina described Oscar to be a strong and independent child, who was often clumsy and falling over. At nine years old, Oscar began to have difficulties seeing at night-time. After tests on his eyesight and some Googling at home, Tina suggested to a specialist that she thought Oscar may have Usher Syndrome. When Oscar was eleven years old, genetic testing confirmed that he has Usher Syndrome Type 1.

“I don’t think we would have gotten an further if we didn’t suggest it.”

Oscar didn’t necessarily find the diagnosis helpful because it was just a name for what he was going through. But for Tina and Daniel, receiving the diagnosis was challenging, and they wish they could have contacted another family who had gone through the same thing. At the same time, the diagnosis was useful to bring everything Oscar was experiencing together so they could get him well supported.

“So while you may not be able to participate in certain areas, you can have a full life, and potentially even fuller, because you can devote more of your attention to them.”

Oscar is now fifteen and enjoys playing the piano and making short films. He hopes to go to University to study Chemistry and Psychology. He encourages parents to not be too hard on their kids and to not expect them to be good at everything. Oscar wants others to know that it is not that he can’t do things, just that it may take him a little longer than others. He has found that even small things that provide him with a bit more independence have made large difference, like a vibrating alarm clock so he can wake up when he wants to.

Tina’s main message is to stay positive, reach out to other parents for support and focus on the amazing things your child can do, rather than the things they can’t.

“I think that’s something that parents need to realise or people that don’t have Ushers that, well, it might be something that they are very focussed on. It’s just normal life for Oscar. It’s no biggie”​

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