In the world of hearing

On January 12, 2022, I had the most amazing birth and labour possible, I arrived at the hospital with minutes to spare before baby George entered this world. It was fast and it was one of the best experiences of my life.

Within 4 hours of Georges birth, he had the national hearing screening test done by the audiologist, she told us that both ears failed although due to a fast birth it is probably just fluid, we didn’t care, we heard her but didn’t think a second beyond this. We continued to cuddle our perfect boy and just love him. 1 week later were at the hospital again for a second screening test the test showed that his left ear was responsive, and his right still wasn’t, so she explained again it’s probably fluid and sent a referral for the ENT as this is protocol.

The ENT completed An ABR when he was 6 weeks old, and it showed he has a normal hearing in 1 ear and a mild>moderate in the other.

The ENT was very blunt and asked me. “What do you expect to come out of today’s test?” I told him that the nurses at the hospital said it was fluid so I guess its fluid.

He said that no its not fluid and George has permanent hearing loss, he will need a hearing aid and Speech therapist. “I will see you in 6 months”.

A few days later I had Hearing Australia call me to book an appointment and at 12 weeks old he had his hearing aid “switched” on as it is worded. She also did the papers for NDIS. We were at HA every 2 weeks for new moulds as babies’ ears grow insanely fast, This was exhausting.

I had a call from NDIS, a meeting was set up and for a few hours I discussed my goals for my new baby around communication and family. I was a stuttering mess; I wasn’t sleeping and breastfeeding wasn’t working as I had hoped. At a few months old does any parent know what they want for their child in the form of communication? I mean my mind went to,

I want to be able to talk to my son, I want him to make friends and be a kid. My goals are in place and funding given.

Georges next hearing test at PCH was under sedation as babies need to be asleep or not moving for the test, George was at an age that he wouldn’t stay still enough to complete the ABR accurately. The sedation was so traumatic for both myself and baby George. As an infant he has only ever had breast milk and formula before so to have an oral medication that had an intense scent of mint it took his breath away. After the test it showed us that his hearing had declined further, and he now had bilateral Mild >Moderate.

We went back to HA and a hearing aid for his left ear,

It was turned on at 7 months.

Testing from here is now booth or behavioral testing.

which was recommended that George do every 3

months 1 ear at a time so each ear tested twice a year,

this is due to George not having the attention span to

complete the test in both ears at all frequencies.

It was at this time that Georges Audiologist had really

began to push me into contacting Telethon speech and hearing (TSH) as I hadn’t made any communication or engaged in any

early interventions. It took me a long time to process not just my son's hearing loss but all the voices around us and questions that everyone had. They voiced their concerns and suggestions which is so normal to do but for me as a mother I struggled deeply with this. I became very closed off to everyone and acted somewhat irrational and “emotional” as a word that people like to use, some would call it baby blues or PPD although I don’t think it was that I think I was taking on all the concerns and expectations around me and they became so loud that I just couldn’t think.

In my HA appointment I think the audiologists was getting a sense that I was struggling as we saw each other a lot during this time, she told me to contact Telethon speech and hearing while I was there and get the ball rolling which I did. She is amazing, one of my strongest supports.

While that was all in process, I reached out to an AV therapist who would come to my house and teach George AV therapy I guess, she would hand me a piece of paper and pen to write down all that we learnt and then quiz me on what I found informative etc. This was such hard work as I was so tired, George is a terrible sleeper.

I started to like the idea of exploring Auslan as George now had what was called progressive hearing loss. I mentioned this to the AV therapist, and she was quick to tell me that it's not recommended he won't develop his speech and it will confuse him etc “Ears before eyes” is what she absolutely drilled into me. I HATE this phrase so much, even typing it brings up strong emotions. I ended up cancelling all sessions with Georges AV therapist as we had clashing opinions and when she would come, I used to say to myself let her teach George what she knows and I will teach him what I believe when she is gone. This was never going to last.

I signed up and completed a small Auslan course and I introduced it to George in the form of key words that I was getting from sign bank and them phrases I would pick up from my class. It took a while for me to see that George was responding to it, but he started to and he took off with it. Speech at this stage is still severely lacking, he wasn’t babbling and generally a quiet baby unless he wanted something.

I started attending a support group for children with hearing loss which I loved, I loved the parents coming together and the children all having something in common with their hearing loss although I began to realise again that sign language was low key being excluded from these lessons and the children had exposure to signing at home but while here it was a voice only environment. I didn’t like this, but I was ok with it for now as he is young although I began to see that it did make a difference in his engagement.

I started seeing another AV therapist and she was so nice and I felt like I had a strong support in her, I quickly realised that this isn’t the case, again as She would say phrases such as “George is choosing the easier language” and “we must work harder in English now” this was in reference to him excelling is his signs and responding so beautifully which I was just amazed by and so proud of but when at a centre for speech this is not a place that will share in your joy unfortunately.

Having a child with differences can make those first months>years very lonely and they have been for me, I become reliant on the professionals I felt were supporting me probably more than I should although I am screaming out for help and guidance so when it doesn’t align or I hear/ feel judgement it hurts a lot especially when I’m out of my comfort zone and have had no education or exposure of how to raise a deaf child and to support them in the best way.

The AV therapist booked George in for an urgent hearing test as she had “red flagged him”. During the test the Audiologist did a few things that I wasn’t happy with and sitting in on the test I knew they weren’t right “I've done many of them now”. I won’t go into full detail as I feel I don’t want to put negativity onto an organization that I believe has every intention to help children and I believe that they do they just weren’t right for me.

The results from the test showed Georges hearing in his left ear was now at a sever loss although she verbally told me that she couldn’t get any reading above 70 at any frequencies in either ear, both ears were tested. The report shows only the single frequency which is due to her not being satisfied with the results, not enough to officially document. This is normal, babies have bad days.

She had suggested that Georges hearing loss was behavioral and not progressive. She requested another ABR and MRI.

We came out of that test and my mind went into a spiral, there is much more to this and what was said and done. I couldn’t sleep, eat, work, concentrate for 2 weeks. This really affected me. I called my audiologist and asked her to talk me through what had happened and emailed her the documents I had received. She wasn’t happy and told me to disregard everything from that day. Impossible!

I contacted the organization and expressed my concerns and cancelled all further appointments, I did it due to the clashing of spoken and sign language views and the growing feeling that they were not able to guide myself and George in the correct direction at this time.

While awaiting the next test I shared my concerns with the mums at playgroup and they very quickly dismissed my concerns and said support words toward the AV therapist and audiologist, I felt even more alone although I knew what I was told and I knew what was right and wrong ethically.

I had already started at a group called SSEN which from the first time I went I left saying wow that was great, and complimented the staff at how open hey were to communication and how they didn’t show any bias on languages or judgement just that they were there for the children. George also has a 1:1 session which he opened up very quickly to her and I believe it’s as she allowed him to use his hands and she also followed his lead; she got more out of George in that 1 hours than any other AV therapist did before her although she isn’t an AV therapist she is a teacher of the deaf (TOD) she teaches language; oral and sign (she is hearing).

I saw a Facebook post advertising a private TOD who would come to the home and I immediately contacted her and requested Auslan for families and sessions with George, this got put into place and I was excited. I knew nothing about her history, working or personal, “is she deaf” “is Auslan her first language” “will George like her”. These are questions among others that went through my head. I also don’t know if its polite or rude to ask “hey, are you deaf?” I mean it sounds strange and I don’t want it to be strange to want that to be a requirement either, so I was pleasantly surprised when I first met her that yes, she is deaf and she is highly skilled, owns a successful business, educated and just all-round beautiful person. Wow! George your future is bright, and you will achieve anything you put your mind to. These are the people I need around my family and my very influential baby, TOD!! Makes sense right, I mean it's in the name, Teacher of the deaf.

Georges next hearing test shows that he has moderate loss in both ears and all frequencies are still dropping but at their consistent rate that they have since birth, we don’t know what his hearing will do in the future although it looks like it will continue on the steady path down and this is ok, I have accepted it.

I mean it doesn’t make me happy as let’s face it, it’s easier for me and my family if he could and does talk but it’s not about us. He needs to know that with hearing loss he still has equal value, and opportunity.

Advocating for him has taken me by surprise as in 12 months I feel I have had to jump hurdles already and this is just the start.