Bianca - my story as a mum

I wish to share a little about our journey, I understand every family’s journey is different. I have 3 amazing children, my eldest child was born Deaf (Profound Loss).

When my child was born we lived in a country town. Because my pregnancy was healthy and my child was born full term, it was not mandatory for hearing tests to be done.

We attended all Maternal Child and Health Nurse Appointments. I remember one appointment when he was around 4-5 months old the nurse wriggled a set of keys to the side of his head, of course he turned to look because her saw her arm reach out that way, it was nothing to do with him being able to hear the keys.

Small signs

For the first few months we noticed small signs, but figured he was being a boy and too busy playing with toys. When he was playing with toys that have sounds and lights we had assumed he was enjoying the sound. We later learnt that his reactions would have been from the lights and vibrations of these toys. He did not like to sleep alone in his cot all night and once he had woken through the night I could not get him back to sleep unless he was by my side. There were no clear obvious signs for me to say he was unable to hear, and being a first time mum I wasn’t fully aware what to look for.

When he was around 10 months old, a front door was slammed, at the time his back was to the door and there was zero reaction to the slam of the front door. I expressed my concerns to close family and friends and we came to the conclusion he would just need grommets due to fluid and everything would be fine afterwards.

I went to the GP and got a referral for a hearing test. This wasn’t local, had to travel a two hour round trip. I don’t recall the time frame between the GP appointment and the hearing test, I’m certain it was a few weeks apart.

At the hearing test appointment, unknown to myself he had to be asleep to have the hearing test done. So after driving an hour in the car and already had napped this was going to be an inconvenience trying to get him to have another nap. We were still unsuccessful at getting an answer that day. We went back to GP and he stated he would need grommets as there appears to be a lot of fluid and while he is having the procedure done they would retest his hearing whilst under anaesthetic.

I recall in between appointments forever doing self hearing testing with toys or my voice in the hope that his hearing would just come back, and all our fears were not coming true.

Feeling helpless

A day before his 1st Birthday he had the grommets put in at our local hospital. It was this day it was confirmed, our concerns were true, he was identified with a Profound Hearing Loss. At the time I had no idea what they meant until they explained. I have never felt so helpless, lost for words, anger, sadness, the why us, what did I do wrong, and every other emotion possible hit all at once on that day in that moment. I remember going home to get some clothes to stay the night at the hospital and just bawling my eyes out and saying to family he has never heard me tell him “I love him!”

I cried every night for a long time after the formal diagnosis; it really came down to the unknown, what will his future look like? So many questions that no one could answer, or felt they were unable to answer because they have never been in my situation. At the time we didn’t know anyone who had a hearing loss or who was deaf. We didn’t even know what was available except for the information we were given by the professionals and what our next appointment was. They couldn’t answer the real life questions and concerns I had.

The next day he was released and that’s when the mayhem of appointments began. It is all a bit of a blurred time line as it all was just happening so quick and it was so long ago now.

First we attended Hearing Australia, of course this was not local either so we had to travel an hour to get there. He was fitted with 2 hearing aids, which did not make any noticeable difference. We joined early intervention and they would visit the house once a fortnight. Early Intervention would travel three hours just to visit us for approximately an hour or two then drive 3 hours back to Melbourne. I was still finding it all so hard to come to terms with my child being deaf, mum guilt, the grief, the isolation, why me?, why my child?, what about his future?, what will he do for work?, every parents concerns for their child as they grow, I was already questioning these while he was still a baby, whilst I should have been enjoying the baby stage.

I was completely unaware at the time he will be perfectly fine and can do anything he wants, being deaf won’t stop you!

We started visiting the Eye and Ear Hospital to see if he was a candidate for Cochlear Implants. It was a 6 hour round trip. My parents would come to many of these appointments for that extra assistance in listening and understanding what the professionals were saying regarding the Cochlear. Travelling that far in a day with a 1 year old and each year got harder, what child wants to sit in the car that long?

Decisions, decisions.

It was a huge decision and not one taken lightly, we considered holding off on the procedure, but what changed our minds was someone saying to me and explaining the earlier the access to sound the better.

Cochlear Implant Surgery 28/03/2008, he went in to be Bilaterally Implanted, they were only successful on left side as they found the right had an inner ear infection, that was the longest day, he was away from me all day. We went back 2 months later and had the right side implanted. After surgery he bounced back so quickly, the next day he was running around with this big bandage on his head, keeping me on my toes to prevent him from bumping his head. Four weeks after surgery we received the external part of the CI and switched on. Every Friday for the next 8 months or so I would make the 6 hour round trip to Melbourne to see the specialist at the Cochlear Implant Clinic. The appointments consisted of mapping (checking the sound level), slowly turning them up each week, speech therapy, we also were seen by other allied health services at times. It was exhausting travelling, receiving all the new information, the extra appointments.

13 years ago cochlear implants were much bigger than they are now and babies had to have the battery pack clipped to the back of their shirts. Shirts were forever getting wrecked, it was hard for him to roll around and have fun on the floor because of the battery pack. We came across some horrible moments as well, and I’d have to say they were mainly from adults and their stares and comments that I could hear. Children would just come up and ask “what are they on his head?” and once explained they’d be happy with that and play. But adults were a totally different story. There is a lot more awareness about Cochlear Implants now with them being on the news and kids tv shows.

Over the years especially the earlier ones we had misplaced, lost them, they’d been thrown out the car window, one fell off into a duck pond never to be seen again. The hours spent searching for them at day care at pick ups. At one stage we would search kinder to find he had put them in his pockets. Running in the parks they would falls off in the tall grass and trying to find them was so hard. How many times we would say they needed a tracking tag we would be rich by now.

The first few years were very busy with many appointments, it all slowed down when he started 4 yr old kinder, then that was another big learning curve for myself as well as the educators as they had never worked with a deaf child before so we were all learning as time went on.

Primary School was amazing in our country town, a lot of the children were either my friends' children or some cousins so they all knew about Calvin.

Grade 2 we relocated to Melbourne to be with my new partner (who has been amazing in all the support he gives us both and the role he has taken on) and started at a new school, this just did not work for him, the school was too big the funding was not being used to his needs, nor was he getting the support he required the teachers were not using the FM, he definitely got lost in the system that year and we also lost the confident cheeky outgoing boy he was.

I will never forget the day I picked him up from school, he got in the car and said to me “mum can you take me to the hospital and get me fixed so I don’t have to wear these anymore” (talking about his Cochlear Implants) he was crying I was crying and I just knew we had to do something about it now.

The next day I spoke to the visiting teacher of the deaf who only visited once a fortnight which was not enough for my child. She advised not far from me was a school that is mainstream with deaf facility. Why did I not know about these schools before and the benefits behind them?

Getting involved

After that day in the car we also reached out to the Deaf Community, got involved in Deaf sports, which we were never aware of either. We have some amazing friendships with adults who have educated us and supported us along our journey. I love seeing my son being able to communicate using Auslan with other members of the Deaf community.

We went and visited this school and straight away we enrolled him and never looked back. My son came back to me the child I knew he was. The school taught Auslan as their LOTE, attended deaf school sports carnivals with other similar schools in Victoria (they were great days). He learnt about the Deaf Community, met other deaf and hard of hearing peers in the school and they were very welcoming. I could never thank the teachers, the Teachers of the deaf and the Auslan Interpreter enough for those 4 years my son was at this school. He would not be where he is today without the support.

We have now hit teen years and all that comes along with being a teen. I feel very confident we have the best support network for my child to thrive- no matter what the future holds.