After her husband's cancer battle and six IVF attempts, Prudence Betros was thrilled to give birth to her beautiful baby boy. But that euphoria turned to shock just hours after he was born when she discovered that he was blind.
Henry, now six, was born with microphthalmia - a condition in which one or both eyeballs are abnormally small, and sclerocornea - a congenital malformation disorder in which the cornea and other aspects of the front part of the eye do not develop normally.
"My emotions were all over the place – the high of seeing your first child for the first time and then the low of coming down quite quickly off your pedestal and being told that he is blind," Prudence says. "He doesn't have pupils so you could tell straight away. In the beginning we didn't know what to do. I don't like to think about those days a lot. Facing the future of having a blind child was on my mind the whole time. We were expecting to parent in the same way everyone else does but we have learned to parent in a different way. It's taken a long time to accept it and move on… We have had to adapt and now I feel like we can face any challenge."
While he is too young for a guide dog yet, an orientation and mobility specialist from Guide Dogs Victoria has been helping Henry develop skills to use his cane – which he affectionately calls 'Bobby' - for the past three years. "They have come to his house and kindergarten and helped him getting up and down stairs," Prudence says.
Before he started school at St Joseph's Primary in Hawthorn this year, the specialist also helped orientate him so he was confident he could find the toilet and knew where to put his bag on his first day. She and his parents also had several meetings at the school, where he is the only blind student. During one she suggested his teacher visit Guide Dogs Victoria's Dialogue in the Dark - an immersive sensory experience in Melbourne in which participants are led through a pitch-black room set to mimic the city's iconic locations and streetscapes by a person who is blind or vision impaired. The concept was founded in Germany in 1989 by Dr. Andreas Heinecke after he was asked to develop work training for a young journalist who had lost his eyesight in a car accident at a radio station he was working at. There are now similar experiences in more than 41 countries.
Prudence, who had done Dialogue in the Dark with her husband Christiaan a couple of years ago, was delighted to learn that more than 30 staff from St Joseph's went, including the principal and office staff. "I was really surprised by that," she says. "It was really nice and comforting. It cemented in my mind that we have chosen the right school. They raved about it."
Henry's teacher, Deanne Vessey, said the experience had helped her adapt the classroom for Henry, including giving her the idea to place a coiled mat on the edge of the class mat so he knows where to sit.
"I obviously knew that touch would be one of the main senses that Henry would use to navigate around the room but it really made it obvious to me," she says. "It made me think I really need to set up my classroom so it's very tactile. It also made me realise how explicit you need to be with instructions or directions."
Guide Dogs Victoria CEO Karen Hayes says around 18,000 people have visited Dialogue in the Dark since it opened in 2017 and it was popular for school excursions and with families and corporate groups.
"You go through gardens and markets and hear different things," she says. "When your primary sense is removed your secondary senses kick in in a major way. Henry is a really smart, capable young boy and Dialogue in the Dark highlighted for his teachers how he goes about navigating his life and how they can best support him and his personal goals. He's a very active little boy and very smart and he wants to be included in things like every child. It's a fact of life that kids can be quite cruel sometimes so teaching these kids about diversity and the experience of those kids who do have a disability really helps them to build that sense of inclusiveness. By the time they come out the end they say: 'This has changed my world – it's changed how I will interact with someone who's blind or has low vision'. It gives them a completely different perspective."
Karen says a social impact survey found nine out of ten people who had done Dialogue in the Dark agreed they were more open to relationships with people who are blind or have low vision. "They came out the other end saying that their level of pity had completely reduced and see that these people aren't victims, that they're part of the community," she says. "It's an amazing experience and we're very proud of it."
Prudence says Henry is loving school. He is helped by a teacher's aid in class and another who comes to teach him braille each week. "I'm so proud," she says.