Jodie - my story as a mum in Victoria

Hi

My name is Jodie and I would like to share my journey as a parent with a child who has mild to moderate hearing loss.

The Parent Mentor Program has been a fabulous source of support and information to us. I was not sure where to begin once we had the diagnosis confirmed and at first thought that POD and DCA was not for us as our child was hard of hearing not deaf.

The only people I knew that were deaf lived in England and as a primary teacher I had never taught a child with a significant loss of hearing or a known hearing loss. Glue ear I had worked with but this was a whole different ball game.

When we look back now as a family we see the signs, we sought professional help even early on but got told it was fine, it is probably glue ear again, go home she will just get over it. We trusted the experts and because she often got ear infections, croup and asthma we all dismissed it. She will grow out of it…which never happened.

A late diagnosis

As a parent there are moments where I feel parent guilt for not insisting on more tests, taking her to another specialist, not trusting my gut enough. That my child was nine and half years old when she finally got diagnosed and there were years where she could have had assistive technology and not had large gaps in her learning.

I sometimes wonder how many other parents have experienced this? Is it just us?

Thankfully we lived in an amazingly supportive country community for her initial primary schools years, small school, close friendships and families. Moving back to Melbourne, seeing an audiologist, ENT etc within weeks we had a diagnosis of bilateral sensorineural hearing loss, a Roger focus pen and receiver and a hearing aid in the other ear. She still had a lot of trouble when not at home or in the classroom. This was affecting her friendships and her mental well-being. Overall she is a great kid who loves to join in and had many wonderful friends in her previous school. Thankfully after lockdown this was reviewed and she now has hearing aids in both ears. This has made an immense difference.

This was an amazing change in our child and family dynamic. Our beautiful girl was now so much more engaged in our family conversations, car trips, walks, she could ride a bike, scooter and run around the quiet street with less fear that she would not hear a car or miss an instruction or conversation. She was able to join in birthday parties, some sporting events and her confidence blossomed.

DCA Parent Mentors

We were still very new to all this. I saw a FB post about the POD network and contacted Bianca our Parent Mentor. She has been wonderful from the beginning. I could chat to her for ages. She is a font of knowledge and shares her journey as well listening, supporting and making suggestions for our child. I am so grateful to have this support over the past 15 months! We have since received funding at her school and the school have trained the teaching staff and put in sound systems in her school.

The DCA Parent Mentor Program has been amazing. I first contacted Bianca via email (the POD mentor) during lockdown last year. She called me and was so supportive and understanding. She got it! She gave me tips, explained things to me and shared her own personal experiences and the journey her family has had with her own child. Whilst our daughter does not have a profound hearing loss even a mild to moderate loss is not normal. She can't do the things other kids do in the same way. It takes a huge amount of extra energy and concentration each day to get through school, social situations and even home. She has to rely heavily on visual cues and body language.

It was amazing to meet someone else who gets it. Who gets how hard it is for our kids no matter what degree they are hard of hearing and how important it is to continue to ask questions, share experiences and support groups, to advocate for our kids and to educate others.

As a teacher myself I have never taught a child who has had a hearing loss. I have not had to learn how to work with sound systems, Roger FM devices, strategies to support them in and out of the classroom in an educational setting or help support their parents. These are things that I feel are really important especially in primary school.

Support at school

Our new principal has been amazing. He has been great to talk with and has organised a set up that supports the HoH kids and other kids who can benefit from the sound system in our daughters school. It has made a big difference for her during the day. Her hearing aids just automatically work with the system when she starts each day which to her is brilliant. She does not feel she has to ask for support and there is no need to draw attention to her situation - in her words - ‘it all just works and I can get on with my day like the other kids.’ That said she still would rather not wear the aids. She wants to be a regular kid but she is a kid who needs devices? She can't cross a road, ride her bike etc without this technology. We wont always be there as she enters the teenage years.

The importance of networks

We hope with more networking to build a support group for these kids. We are very grateful for all the support so far and look forward to meeting more amazing people on this journey. We are supporting her in this journey. She is not fully part of the hearing world nor is she part of the Deaf community.

We worry for her self esteem, we hope she continues to find her people, that Year 7 is not one of loneliness and feeling ostracised but of self advocacy, confidence and making fabulous friends and amazing teachers who accept and support her.

I have found that as parents we need to really advocate for our children. If you do not ask what is available and who can help you just don't know where to begin. Specialists are great but they are just that - specialists in their field. Sadly they do not have the time or network to work together.

Our Parent Mentor was instrumental in finding another family who have a daughter of similar age and degree of hearing loss. They seem lovely and we are looking forward to meeting them in person soon. We have been in contact with them. They seem lovely and we had organised to meet up but due to a family situation we had to postponed it and are looking forward to meeting up properly soon. I know Amelie is really looking forward to meeting another girl who understands!