Dave and Sonia Hardman admit to being “floored” when they were first told their oldest son Jack was diagnosed with ocular albinism.
Jack, now 10 years old was diagnosed at the age of eight weeks, a piece of news that shocked the family. That was repeated two years later, when Jack’s brothers, twins Noah and Thomas, were given the same diagnosis.
“Jack had no vision until he was about one and then slowly it started to develop. After Jack we thought we’d know what to look for with the twins,” Sonia says.
“When the twins were born we assumed they didn’t have the condition because they seemed a little more alert and then at about eight weeks we noticed they had nystagmus and then straight away we got goose bumps and realised what was happening,” she says.
As a result of their condition all three boys have reduced vision clarity and acuity and also struggle with glare.
With neither Dave or Sonia having any lived experience with low vision prior to Jack being diagnosed, the Hardmans said it took some time to come to terms with what that would mean for their children.
“When we found out about Jack we were floored. As a first time parent it I was just thinking ‘what is this.’ It was all a mystery to me, I’d never thought of that side of things before then,” Dave says
“As a parent you have all these hopes and wishes they’ll do what you do, but you find out very quickly that no kid does what you do, they all find their own paths in life. For me anyway I think it probably took three months to realise hang on it’s not about me, it’s about them,” he says.
For the Hardmans there was two main things that helped them to move past the confusion about what ocular albinism would mean for the three boys. They first made contact with a support network of parents of children with ocular albinism before they were directed to Vision Australia through Narbethong State Special School, which provides specialist teaching for students who live with vision loss and other disabilities.
“We went to Narbethong with all the boys when they were about eight weeks old and from there we were put in touch with Vision Australia,” Sonia says.
“After that the specialists started coming out to the school or doing home visits to provide services to the boys. The support [from Vision Australia] has been everything, things like speech therapy and occupational therapy have made a huge difference. Even just the advice about what the boys would be able to do has made a huge difference.”
Currently all three boys are in primary school and are receiving support from Vision Australia around assistive technology to support their learning, which the family is thankful for.
“Reading and writing has been a challenge for the boys. At school they can’t see the blackboard and they have problems reading text unless it’s really magnified and obviously that’s a big thing when it comes to education,” Sonya says.
“Things like magnifiers and some other technology have made a big difference for the boys. We’re at the point now where we want the boys to be confident with using the technology before they head to high school where there might not be that same level of support for them and everyone from VA has been great with helping us with that.”
While the boys’ condition has meant they’ve faced some challenges, learning about what ocular albinism is has meant Dave and Sonya haven’t held them back from taking part in the same sorts of things that other children their age are involved in.
“They haven’t used it as an excuse and neither have we. If they want to be a couch potato or a rocket scientist, then they’ll do that. The more you learn about things, the more you realise what’s available for them to do.
“We just went on a trip around Australia and went on hikes and treks, some pretty tough ones at that, and they did it all by themselves. They play soccer and touch football and play around like any other kids. Whatever they want to do they eventually figure out a way to do it.”