The Feller Family
Hollie and Dan found out that Harry, their third child, was profoundly deaf at birth through the newborn screening program.
Hollie and Dan found out that Harry, their third child, was profoundly deaf at birth through the newborn screening program. As Harry grew, he did not meet his gross motor milestones on time. After seeing Emily (co-founder of UsherKids Australia) and her son Louis in the paper, Dan began to suspect that Harry may also have Usher Syndrome. After a number of genetic tests and a lot of waiting, Harry was diagnosed with Usher Syndrome Type 1F at two and a half years old.
The diagnosis was a massive shock for both Hollie and Dan, but they were somewhat comforted by having connected with Emily and knowing there was another parent who had a similar experience. Hollie highly recommends reaching out to other parents, not only for emotional support, but so they can share helpful tips. She also found Facebook pages to be helpful some of the time.
“Every day you will wake up and the first thing you’ll think of is Usher syndrome. Every night you go to bed and the last thing you think of will be Usher syndrome. One day you’ll wake up and it won’t be the first thing you think of, and it won’t be the last thing you think of. You just need to make that happen as quickly as you can, so you don’t miss out on enjoying their childhood with them.”
Hollie and Dan chose not to discuss Harry’s diagnosis with him and his older sisters for three years. They feel that they needed to fully understand the diagnosis, what it meant for Harry and have a more positive outlook for him, before letting their kids know. This approach really worked for their family and the kids accepted the diagnosis well when they were told.
Hollie and Dan found early intervention services to be a huge help in improving Harry’s vestibular functioning. Physiotherapy, occupational therapy and gymnastics have all been beneficial. Hollie recommends searching for professionals who you trust and who work well with your kids. Having a network of other parents who can provide recommendations can be hugely beneficial in this process.
Hollie wishes others, particularly teachers, understood the impact dual sensory loss and balance dysfunction has on Harry day to day. Even though he may be doing extremely well, it does not mean that he doesn’t face additional challenges or isn’t trying hard to do well. She encourages parents to never second guess themselves when advocating for their children or feel that they are overemphasising the difficulties the kids may face. Hollie wants parents to remember that they are advocating for the hardest days the kids have, not the average or good days.
“The more you can talk about it with people, the more your network expands and the more opportunities that come to you because somebody already always knows somebody that knows somebody that has tried something that might work for you.”
“He never thinks that he can’t do something because he’s got Usher syndrome. He doesn’t see it as something that limits him.”
“Harry has a single mindedness and belief that he can do stuff”
The Doak Family
The Doak Family Bronwyn and Andrew’s boys, Eamon and Kealan, were diagnosed as being profoundly deaf as infants.Bronwyn and Andrew’s boys, Eamon and Kealan, were diagnosed as being profoundly deaf as infants. However, Bronwyn believed there was more going on, as Eamon...
The Cox Family
The Cox Family Vicki received confirmation that her daughter, India, had profound hearing loss when she was fifteen months old, the day before the birth of their second daughter Samira.Vicki received confirmation that her daughter, India, had profound hearing loss...
The Alderman Family
The Alderman Family Shelley and Will found out that their son, Noah, had moderate to severe hearing loss through the universal newborn screening program.Shelley and Will found out that their son, Noah, had moderate to severe hearing loss through the universal newborn...
The Carter Family
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...
The Shepard Family
The Shepard Family After bringing their second child, Louis, home from hospital, Emily and David knew something wasn't quite right.After bringing their second child, Louis, home from hospital, Emily and David knew something wasn’t quite right. His loud, two-year-old...