Five year olds Sebastian and Colby were born two months early and spent five days in Intensive Care in the Royal Women’s Hospital. No one knew at the time – or for the next few years – that they were both deaf.
“Now, their mum Bree and dad Jamie wonder if it was possible something was missed or simply not communicated to them as their tiny little boys were treated for other complications and transferred across three hospitals in their first month.
Their mum Bree shared their journey with us:
“After the initial anxious time in Intensive Care, Sebastian and Colby seemed to be doing well. No one told us about the high risk of hearing loss when babies are born prematurely. We still don’t know the exact cause of the hearing loss – whether it was because they were born so early or whether there may be a genetic link. They both also have mild vision loss and need glasses, and Sebastian has astigmatism as well.
Colby struggled with his breathing more and still has some issues with his lungs. Sebastian thrived despite being premature. He crawled and walked early while Colby’s development was slower. The occupational therapist told us that at three, Colby had poor core muscle strength and was just clumsy. It turned out to be more complicated, and he is still really accident prone.
The maternal child health nurse and the paediatrician told us not to worry about their delay in speech, reassuring us that it was because they had been premature and were twins, and they would catch up. But when they had their two year old check-up, I expressed concern that they were just babbling still. The maternal child health nurse suggested hearing tests. Colby wasn’t cooperating so they missed his hearing loss – and focussed on Sebastian’s more obvious loss. I guess we hadn’t noticed their deafness so much because Colby’s hearing was a little better and when we spoke to them, Colby would respond and Sebastian would tend to just copy Colby.”
Three different experiences of hearing loss
“In those early days after Sebastian’s diagnosis of a moderate hearing loss, we were searching everywhere for guidance and some sort of validation for what we were feeling. It really helped both Jamie and I to access Deaf Children Australia’s resources and read the stories of other families who had been through similar experiences.
Soon after diagnosis, Sebastian received bilateral hearing aids and early intervention support that really benefitted him. When he started at the early intervention kinder at four, he was practically non-verbal with only a few words like “mum”, “dad”, “ta” and “ball”. He wasn’t pausing to try to listen to what other people were saying to him. But after beginning kinder, he started talking a lot more and learning to sign. Now Sebastian is a real social butterfly and a jokester. He has so many little friends and it’s been fantastic to see his confidence and language skills grow.
Colby is more shy and reserved with others but he can also be very loud. He struggles with a lot of anxiety and doesn’t have the same network of friends at this stage. He has some challenging behaviours and is currently being assessed for autism spectrum disorder.
After Sebastian was diagnosed as deaf, Colby and their younger sister Stevie were assessed. Again, Colby’s hearing test results were inconclusive and they told us to test again in another six months. This happened a few times so he unfortunately missed out on early intervention support.
Stevie was diagnosed at 18 months with a hearing loss caused by chronic middle ear infection and fluid in her ears. She had a bone-anchored hearing aid for a year and had grommets inserted six weeks ago. Before the grommets, she kept getting perforated ear drums and would wake up screaming in the middle of night. The grommets have helped reduce the fluid levels and improve her hearing, but we are still hoping for more improvements. Her pronunciation was really bad so like her brothers, Stevie has benefitted from speech therapy.
When Colby’s hearing loss was finally diagnosed last October, he was assessed as being just on the cusp for eligibility to attend the deaf facility where Sebastian is now attending Prep. It wasn’t until halfway through Term One that the Department of Education provided funding for Colby to start, so it’s been more challenging for him in many ways.
The original plan was for Colby to start at the deaf facility, then transfer into mainstream schooling. However, it has been fantastic for both the boys so we want to keep them at the deaf facility where they have a small class and a support teacher with the class full time.”
“We never imagined we would be where we are today”
“We have been attending Auslan for Families classes over the past twelve months, and while it’s been challenging for us as adults to pick up another language, it’s been really fun. Sebastian’s comprehension of sign is phenomenal and he uses a combination of sign and speech. We are all at different levels but all improving.
Colby is more verbal and doesn’t understand as many signs yet – but he is learning Auslan at school as well. Signing has helped with Colby’s anxiety because when he is feeling anxious and refusing to speak, he sometimes signs to us. It was fantastic to see Sebastian, Colby and Stevie all signing to each other while colouring in together recently.
We have really appreciated DCA’s support, and we are looking forward to meeting more deaf and hard of hearing children and their families through their recreation events and the family camp next year. It will be great to get some guidance from the Family Support team on how to navigate our way through the National Disability Insurance Scheme as well.”