Story from my friend

Our son Jack was born in July 2006. He was our 3rd child and brother to two older sisters Olivia and Sienna. He surprised us by failing the SWISH testing in hospital and an appointment was arranged to see an audiologist.
There is no history of hearing loss in the family so we definitely didn’t expect this result. We talked ourselves into believing that everything would be fine. He could hear us as he responded to banging doors, and loud clapping. The poor boy, we were constantly checking to see that he would respond to noises. At the time we thought you could either hear or you were deaf – who knew there was so much variation in between?

Four weeks later we were at the audiologist at Westmead Hospital. I remember looking at the posters, but not really reading anything as I was certain it wouldn’t apply to us. We weren’t particularly nervous or anxious at the time. It took a while for the audiologist to complete the testing, which started to worry me. Finally she had the result – mild to moderate hearing loss in the left ear and moderate to moderately severe in the right. I had no idea what that meant, except that it wasn’t the perfect hearing that I expected. She said that would mean hearing aids, but a cochlear implant wouldn’t be necessary and he would be able to attend a mainstream school. The fact that he wouldn’t need an implant and could attend school were the positive things we hung on to. We were shocked by the diagnosis, but she showed us the Frequency Chart as to what he could hear and we thought – well, it could have been much worse.
So we took all the positives we could from the situation, and then organised our next lot of appointments. The day arrived for our appointment at Australian Hearing to pick up his hearing aids. I was surprised at how upset I was. I couldn’t believe that he was actually going to have to wear hearing aids – it had been ok just talking about it, but the reality of it really shook me. To be honest, I was wondering how I was going to take him out into the world with the aids on. Wouldn’t people stare at him and ask me questions about them; would kids tease him? Looking back now, I can’t believe I was worried about these things, but at the time, I didn’t know if I was capable of handling these situations.

Despite the fact that we were concerned about using hearing aids, for us the choice was easy; we wanted our son to hear and to be part of our hearing world. We weren’t trying to ‘fix’ his hearing impairment/deafness, but we wanted him to be able to communicate with us, our family and friends in the only way we knew how – we wanted him to learn to listen and to speak. Perhaps when he is older, he will make different choices, but we could only do what we believed was best for him. Others make different choices for their children; that’s fine. There is no right or wrong answer. I believe that as parents of hearing impaired/deaf children we need to all support each other in the decisions we make for our children.

We settled into a routine for his early intervention, and attended firstly the Shepherd Centre, then after a year the Catherine Sullivan Centre as it was closer to home. We got used to the hearing tests too and it seemed to be fairly stable, but always at the lower end of what we expected.
Time passed by and his hearing impairment was just another part of life. His speech developed normally and unless you saw his aids, you wouldn’t know he was hearing impaired. He started preschool and settled in well, was achieving his milestones and life was good.
At the back of our minds though was always the worry that his hearing would deteriorate and or disappear. After fairly stable results for a few years, his hearing had settled at moderate/moderately severe and mod severe/severe, but then a hearing test at 3.5 years indicated his worse ear was now severe across all frequencies. We were disappointed, but he was coping well and with his better ear, he was still hearing most of the speech range.

When Jack was about 4 years old I noticed that he was very attached to the hearing aid in his worse ear. He wouldn’t mind if the other one was not on, but made a fuss for the other one. I spoke to his teacher at the Catherine Sullivan Centre and to the audiologist and we decided to have another hearing test. Jack was very attached to his aids and hated taking them off, especially for hearing test. We booked in two tests a week apart so that if he was upset at the first test, then the second test would be easier as he would have the process fresh in his mind.
I was surprised how anxious I was before the test; I guess I knew that something was not quite right. Jack was not in a happy mood especially when he found out where he was going. Anyway, somehow we got to do the unaided test. We started with his ‘better’ ear. There was no response at any frequency. I was watching him very closely and I could see that he was not playing up, he really didn’t hear anything. I was pretty calm actually – obviously in denial - but I thought, well if we adjust his hearing aid, he may get enough out of it to get by. So the next week we went back for an aided test with his adjusted aids. Still nothing. He had started at birth with mild to moderate and within 4 years he was profound. Technically my child was no longer hearing impaired, he was deaf and the change was very difficult to come to terms with.

I couldn’t believe how devastated I was at the loss of his hearing. I felt like we did at his initial diagnosis as a baby. The whole family was upset by the news – well, that’s everyone except for Jack. He had no idea what all the fuss was about. Life carried on as normal for him. I think I cried every day for over a week. I guess I was grieving for the loss of his hearing; he had some, now even that was gone. Why did it have to go? I knew that things could be a lot worse, and considering what some families go through, this was nothing. But I guess you have to allow yourself to go through the emotions, or else you can’t move on. For the sake of our son we did move on – and we moved on very quickly.
We knew the only option for him was an implant, as he couldn’t get enough hearing from one aid. We also thought that if the hearing in his other ear disappears, then at least he will have the implant to provide him with hearing. Fortunately, my husband and I both agreed that this was the best option for him, and within 3 months of his hearing test, he received his implant. . The words of the audiologist came back to me – ‘no implant’ – I couldn’t believe that this is what we were at. It was an emotional time, but after the surgery, we all felt relieved and ready to move on with the next stage.

The day of switch on arrived, and I suddenly realised that from now on, he would have to wear the processor every day. The same feelings I had when he received his hearing aids came back to me. I was worried about people staring at him and kids teasing him at school. But that anxiety subsided much faster this time. The implant has worked so incredibly well for Jack that it’s hard to believe he managed without it. He loves wearing it but it has been the increase in his confidence that has made such a huge difference to him – confidence that we didn’t even realise he was missing.
He had a bad fall on Australia day; he fell from about a metre, onto a concrete driveway and landed on his head, where his implant was. It was a terrible experience – he had a small fracture no internal bleeding and no other damage. But was his cochlear ok? We had to wait until the next day to have it tested, and thankfully it had survived. It wasn’t until then that we realised how lost he would be without it, even for a short time, and how much we had all come to rely on it.

We feel very blessed that we have had such opportunities for Jack. From an early diagnosis, wonderful support from the Catherine Sullivan Centre, audiologists, and the SCIC, and the constant love and encouragement from our family and friends, we can’t believe how lucky we are.
Jack is now 5.5 years and has started mainstream school. The school has been very supportive and Jack is a happy, engaged and social boy. He loves learning new things and is doing really well; we’re so proud of him. The FM makes a great difference for him in the classroom and he has been assigned a lovely itinerant teacher that helps him for an hour or so each week. Jack has made many friends: I have found that kids are curious and many have asked Jack what’s on his ears. He simply explains that it’s his hearing aid and his cochlear and it helps him to listen. Once kids have an answer they usually move on, and that’s what I have found with Jack so far.
If there’s one thing I’ve learnt over the past 5 or so years is that you need to love and accept your child for what they are, or are not, as only then they can have the confidence to go out into the world with their aids, implants or whatever else they may have to wear. For Jack, these tools are part of his life and he already understands how important they are to him. We may learn other tools, such as sign language for the times he doesn’t have his cochlear, but for now, we have our hands full.

Sometimes I see people looking at Jack then I realise that they’re looking at his aid/implant, but it doesn’t worry me at all, and I realise what a long way we have come.