I am a new mum with two little boys, Hayden and Marcus. My eldest, Hayden, is two years old and had a rough start to life. Hayden was born prematurely at 27 weeks and spent the first three months of his life in the NICU at Mater Mothers. Shortly after leaving hospital, Hayden was diagnosed with a bilateral, moderate, sensorineural hearing loss, likely caused by how sick he was when he was first born and the lifesaving treatment he received.
Our reactions to the diagnosis.
My husband and I had quite different reactions to the initial diagnosis. For me, a hearing loss didn’t seem a big deal compared to almost not bringing a baby home at all. However, I didn’t know anyone who was deaf and I wasn’t sure how this was going to impact my son’s life. I was at a loss for how to help my little baby moving forward.
A Parent Mentor - at the right time for me
I was very lucky to have met a DCA Parent Mentor, Stacey, at one of our early hospital appointments at the Childhood Hearing Clinic (CHC). Stacey was a wonderful counterpoint to the highly medicalised journey we had been on with Hayden to that point. She made me feel simply like a mum, with a depth of understanding of my situation that only comes from being the parent of a premature baby with a hearing loss. Through her funny stories, Stacey helped me understand what parenting a hard of hearing child might be like and gave me suggestions about things I could do now to help my baby, like seeking out an early intervention program and meeting other parents of deaf and hard of hearing children through groups such as POD.
For my husband, he was more focused on the fact that the hearing loss diagnosis was the first permanent impact of our son’s early birth. Everything else that had happened in hospital, Hayden was expected to recover from. At the time, my husband had just started a new job and rather fortuitously was working with another DCA Mentor, Julian, who is profoundly deaf and has cochlear implants. Julian was kind enough to take my husband out for many coffees and be quizzed extensively about what life was like growing up deaf and how he felt about it now as an adult. Julian also shared his passion for music and helped dispel many of the assumptions my husband had about what was possible for a child with a hearing loss.
Our early supports
The support we have received through our early intervention providers, Yeerongpilly Early Childhood Development Program and Hear for Kids, has been amazing. They have not only supported Hayden through play-based therapies but also given me the skills to help Hayden develop and reach his milestones. I am most certainly a better parent because of all the support and guidance they have given me. It has also been great to meet other parents of deaf and hard of hearing children through these playgroups. It’s been important to us that Hayden grows up with people who either wear some form of hearing aid or talk with their hands instead of their voice.
And Early Intervention
We chose to attend an early intervention centre that supported children to learn Auslan alongside speech. Auslan is a fun language to learn and we have enjoyed incorporating it into our daily lives – hubby and I find we often communicate with each other better in Auslan now than in English! With NDIS support we have been able to have an Auslan tutor come to our home and teach us, and during COVID lockdown we were able to continue with our lessons online. Hayden has been fascinated by the notion of talking with his hands and it has been so rewarding to see him start to communicate with us using Auslan. Auslan has become even more important as Hayden has grown older and remained non-verbal, with an ASD component to his developmental delays.
How Auslan has helped us
Learning Auslan has given us the opportunity to meet and interact with the Deaf Community and has made us passionate about raising our son to be bilingual in both Auslan and English. We feel so privileged to have received all the help and support so far on our journey with Hayden. Something that started out daunting at first, seems so commonplace in our lives now. While we don’t know what the future holds for Hayden, I feel confident that the support team we have been able to collect around us will be able to help us overcome any new challenges moving forward … starting school already comes to mind!