When our son was little, we were in this space where it’s either/or: you are either signing or speaking – you had a cochlear implant, or you were Deaf. Nowadays, it’s nice to see the younger generation of Deaf people coming through and saying, I can have both. There should not be any limits on what is possible.
Our son was born with bilateral sensorineural hearing loss. The diagnosis of mild to moderate hearing loss was confirmed when he was six weeks old, and further tests identified the Connexin 26 gene as the cause. He had his first hearing aids when he was three months old. It was always a struggle to keep them on. As soon as he figured out how to manipulate his hands, he would pull them off. We would find them pulled apart or hidden at the bottom of his toy boxes. We could hear that whining noise but couldn’t find them. We chose our battles and picked the important moments as it was so distressing for him to have them on.
As his hearing loss progressed to profound loss in both ears, we faced the tough decision of whether to proceed with a cochlear implant – a choice complicated by our growing involvement in the Deaf community. The cochlear implant option niggled away at us. We spent the next 12 months talking to different people and doing our homework. Despite our initial reluctance and influenced by the struggles of maintaining communication within our hearing family, we opted for a cochlear implant when he was two years and four months old.
We did a lot of speech therapy supporting our son’s development of spoken language. He was also signing. We received advice from professionals to pull back on the signing and allow the cochlear implant to do its job. We followed their advice and stopped signing. Our son also stopped signing, but he never developed speech. We questioned this, but they just kept telling us to keep going, keep going. We reached the point when he was about three and a half, nearly four years old, and he had no sign or spoken language. It was very stressful!
We soon realised we needed to immerse him in Auslan. We just needed to throw our whole weight and everything behind him developing a language, and for us, that was Auslan. As he has matured, we have given him the option of getting a second implant, but he’s decided against it at this point. Everyone needs to make the decision that’s right for them.
Many people and opportunities have helped along the way. We have had a fantastic paediatrician. We also had a parent support group, and the parents in that support group became my friends. That’s what probably kept me going – having people around who understood. On the hard days, if I were upset, they would be there without question, and I didn’t have to say anything or explain why I was upset, which was lovely.
But ultimately, visiting a bilingual preschool changed everything for us. The kids were all around his age and were signing at him, as were the teachers. He turned around and looked at my husband and me. I always get a bit teary when I tell this story. The look on his face—he was home!
For so long, we’d been listening to the medical and other professionals and trying to do the right thing and do what they say. But from that day, we started asking, ” What is right for our son?” We took all the information in, but we needed to follow his lead at the end of the day. It’s not about what we want or what anyone else wants. What does he want? What is going to make him happy? And Auslan made him happy! That community made him happy! So, from that day forward, every decision was about him accessing his community. And that made things so much easier for us. That lifted the stress that we had carried around. Tap into what brings your child joy, what makes them happy, and what puts a smile on their face.
Sarah – December 2021
Sarah’s story emphasises the importance of following the child’s lead and focusing on what makes them happy rather than solely adhering to medical or professional advice. Over time, their son developed a robust Deaf identity and became well-connected with the Deaf community. The family learned to trust their intuition, avoid limiting their child’s potential, and adopt a holistic, strength-based approach to their son’s growth and development.