Georges journey

On January 12th last year I had my beautiful George, He had his newborn screening test, I was told to return for another as he didn’t pass it although not to worry, it was likely fluid. We returned and he had a pass and a fail in each ear

We were referred to the ENT who told us that George has unilateral hearing loss; a hearing aid was fitted at 2 months old.

A few months later a sedated ABR and MRI was performed the results showed us that Georges hearing changed to bilateral mild to moderate loss and an aid for his left ear was fitted.

The first 7 months of Georges life was overwhelmed with intensive interventions such as speech and AV therapy.

I went through the motions of it all as I thought it wasn’t a choice

More of an essential parenting duty that I had as a mother to a child with hearing loss

I would sit in on the AV and speech sessions and watch him not engaging as they wanted and week after week, they didn’t get anywhere with him, not at the speed they wanted at least. It always ended in we must push harder, then I was told to teach him if he wanted a book, he must wear his hearing aids, if he took them out the book went away. This was suggested as George loved books and would engage in them so it would become a reward for good behaviour kind of thing. I nod and smile as they are the professionals, I was just the naïve uneducated mum although I could never of done this and didn’t.

George continues to get all the books he wanted and if he didn’t want his aids, he was allowed to take them out. This did result in almost no use of aids from 11 months old until a month ago when he decided they’re not so bad.

Don’t get me wrong, it was frustrating and stressful, and I wanted him to wear them, but I wasn’t going to fight with a baby about what is put in his ears. Maybe I was in denial, maybe I didn’t care as much as I should of at the time, maybe I just didn’t have the correct support that aligned with my beliefs.

Looking at this slide is a representation of how I felt during those months of AV therapy. These are the notes that I was prompted to write during each session, I guess a form of homework in-between each sessions.

- If you want a book aids must go in

- House must be quiet at all times (under 40 DB)

- Download Db app to monitor sounds in environment

- Ling sounds

- Ears before eyes

George’s hearing was given the name of “slow progressive hearing loss” this sent me into a whirl wind of questions, thoughts and feeling. None of my questions could be answered which left me even more worried, anxious, and confused.

George also wasn’t hitting milestones and responding in the way I was told he should have been, what we are doing couldn’t be working I thought.

He wasn’t turning to the sound of our voices or recognising his name which were the two main points that the speech therapist became alarmed too. We must push more sound through them we were told.

I understand now based on what iv been told by people who have used hearing aids and still use them, that even with hearing aids it can be difficult to work out where the voice is coming from and recognise different voices and who they belong to. If I had known this at the time, I think I would have gained comfort from having an explanation rather than the perspective of “were not doing enough”.

I started to like the idea of exploring Auslan as I felt that if his hearing is progressive maybe I should provide a language he would be able to have full access to rather than rely on technology to give him access which he could still miss out on certain areas of oral language such as whispers, pitches in the voice and keeping up with conversation in busy environments.

My light bulb moment was when we were in swimming lessons and babies were to turn to their parents voice and chase a duck. There was no way he could have heard my voice in that environment with no devices and 3 swimming lessons on at the same time in the same pool in a room that also had 2 spas. After this I went home and I downloaded an app on my phone and found a few key words to introduce into the home.

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 saying it now brings up such strong emotions.

I ignored her advice and I put myself through a short course to learn basic Auslan as i felt that this is something George should have access to. I wanted to try and get the funding in Georges NDIS plan so I could get it introduced into my home for the family to learn. It was explained to me that it wouldn’t be easy for me to get this funding and was very doubtful I would be able to get it “George wasn’t deaf enough to need sign language” I was told. “Nonsense I will get it" I thought, its Georges human right to have access to a language that was designed for Deaf people. I immediately got on my phone and sent emails and calls to Georges ENT, audiologist and a company that teaches Auslan. I received supporting evidence to reflect why it would be beneficial for George and requested an early NDIS plan review which was accepted due to ‘change in circumstances. My request was accepted, and I was given 50% of the funds I requested for Auslan, “I was so pleased to have gotten anything to support the use of an accessible language”. My perspective of this has also changed.

I contacted the company I had done my short course through and started Auslan for families where they come to the house and teach. I was disappointed to learn that our teacher was hearing, this bothered me as I feel we should be learning from someone who is either Deaf themselves or someone who has grown up with Auslan as there first language. Why would anyone learn a new language from someone who uses it as their second? Was my rational.

Its what we had for now and I was thankful, so we did our sessions while I was on the hunt for someone who was a native Auslaner. Don’t get me wrong our teacher was very nice and we all enjoyed her company and teachings but that wasn’t enough, the language yes but we need to learn the culture and how to incorporate that into George’s life. We also needed to know how to best respect, understand and include George into his hearing family who had no previous experience with Auslan and deaf culture.

I truly feel that my biggest influence and support are those with the lived experience, I take a lot of time to try and understand and ask questions when I can.

I joined a FB group and asked questions that I couldn’t find the answers to such as “how do I sign apple or how do I differate grandmother and nanna?” I always deleted these when I got my answer as I felt it wasn’t my place to “invade” as I didn’t feel I fit although I wanted to make sure I asked someone who was native in Auslan as I felt it was important to learn from those who lived and breathed the language and culture. I want my son to get that, and I can’t provide it. I had already been using key word sign and started to introduce basic sentences to him as I learnt them, and he just took off with it and very quickly I realised that he needed sign language and wanted it, so I made it more accessible to him and actioned it fast.

Not an easy thing when your entire friend and family circle all use a single language of English.

By 11 months old he was using the signs yum, yuck, ball, more, food and milk. He was babbling “mum”.

The internet is an amazing thing. As soon as I started to type in “how to learn sign language” my social medias become flooded with Auslan and as I was curious, I clicked on every single link that popped up and read everything, I still do. I love learning the history and the culture. If I didn’t have the internet though maybe I wouldn’t have had the words to use and the resources to guide me into this direction.

December last year all my link clicking and joining groups lead me to find someone we didn’t know we were looking for or that existed. We found our teacher of the deaf, deaf mentor and our life saver, I guess the calm in the storm as another way to put it. We have received so much non bias support and guidance that has put the whole family at so much ease. We don’t go to bed worried and upset but instead content in our decisions. What I have found is there is no pressure!

There is no pressure to do or not do anything. Any personal opinions we don’t know of they are not expressed to us nor could I even try to guess what they are. The entire sessions are based around a small child and his needs at that time and near future, along with how we as a family can support his needs. They are enjoyable and relaxed.

I truly feel this support is given to my family for the pure intention of giving George access to full language, sign, oral and written.

I have so much respect and thanks to give for the support, time, knowledge, patience and guidance our teacher gives us.

Teacher of the Deaf! Why was this never mentioned to me? I mean it’s in the name. I feel she is more then that as she will help me navigate and explain the audiograms, put my mind at ease when they come back with changes and remind me how much language George does have along with how content, comfortable and confident he is within himself. Any question I have I will get answers to in a positive but productive way.

There is no trying to fix a broken baby but educating, reassuring, and giving us the perspective that he requires different needs and we as a family can adapt rather than trying to make hit fit into our world. He and our family can have a dynamic that suits everyone, so we all carry equal value. A deaf mentor again how was this not mentioned to us?

I reference 1 person tonight as she entered my home at a time where I was not in a good head space.

I was worried, tired, emotional and I had very little positive support. The first meeting we had I just cried.

I no longer cry over his hearing results; I have a lot of joy and excitement with each new sign and hand shape development.

That has now all been turned around and I feel nothing but positive and incredibly proud of my son.

I no longer feel I need to protect him from the world because he is deaf.

I was on the train earlier this year and a lady was trying to talk to George, and she asked me his name to which I told her and she was calling him by name although he wasn’t looking or acknowledging her. She noticed his hearing aids and asked if they work and I said that they do although George isn’t overly responsive to spoken language her first response was “when is he getting cochlea implants” this question stirred so many emotions I didn’t know I had around it.

The type of hearing device wasn’t my issue although the perspective that my child needed to be fixed and the first response was “when” as if it was an inevitable in his future. That I had many emotions around.

I don’t think he is broken, so I don’t think there is anything that needs to be fixed. I feel George has given my family an opportunity to learn and grow as people and adapt.

Hearing devices are fantastic, and the technology and science is amazing but they are a support not a fix.

I have come to realise that hearing devices and hearing loss is complex and everyone is different so not everyone can or want to have the same devices if any

I would have loved if she asked me how George communicates.

We went to our first event in February for deaf children and walking up I was so nervous as I could see many people signing but no one that I see was talking. Every part of me said to get in my car and go home, this fear was because I was now in a minority, I didn’t know Auslan well enough to be confident in a large circle of people signing. I could sign basic greeting signs and signs related to my home and things I use daily although to be the one who hasn’t got the language among those that do is so daunting and scary.

I forced myself to continue walking, Afterall it isn’t for me it’s for my child which will become for me later. He will experience this too in the hearing community so I must experience it now so that I can understand him and sympathise when those times come. It didn’t feel good, I felt inadequate.

We went over to the activity table and George wanted to glue the pom poms onto a plate, and the interpreter came over and started to interoperate for George while the Deaf person was signing. George was looking at the lady talking although not following any directions or doing the activity. I asked the interpreter to please stop interpreting and asked the Deaf lady to please sign directly to George to which she did and instantly George started to follow her directions and watch and engage. Amazing! How can sign language be discouraged for Deaf children I thought? Another moment of clarification that Auslan was right for George.

I am very excited for George and his future and my biggest worry to date is that he will take off with Auslan and we will forever be catching up, but I am ok with that as he has access to a full and complex language that we are able to share with him.

We have opened the door for him to have choice as to what he would like to use and how to communicate and be proud and confident in who he Is.

George has a Progressive hearing loss, we do not know why or what it will look like in the future.

What we do have is Auslan and that is completely accessible for him regardless of the location and devices, he is able to communicate to the family and we can communicate back for the most part. We are still very far from being proficient in Auslan although George has roughly 40 hours a week with different people and exposure to Auslan from those that are able to provide him with complex sign language while we learn.

Theres many people who have helped and supported me the last 8 months and every encounter I leave happy and content in my decisions every person who has influenced me unintentionally has come from the deaf community so I can’t say thank you enough for that as he is excelling in all areas. I feel I have been guided and supported from people who understand Georges needs in relation to his hearing and language requirements.

The change in our home is evident that we are in the right direction.

When George was a baby I was asked a question for the NDIS planning “what is my goal for George’ was my exact answer was “I want to be able to communicate with my child” Tick

My goal now is “that I want George to grow up knowing his worth and having a strong positive identity and be proud of who he is as a deaf child/teen/adult”.