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The story of our five children, four of whom are hearing impaired
Told by their mother, Annie
My husband and I have five children who keep us very busy. The fact that four of them are hearing impaired to some degree just makes us a little bit more busy. Our eldest child Rosie, is ten, Jacob is eight, Joseph is six, Charlotte is five and Noah is three.
When my husband were married, I was aware that there was a hereditary hearing impairment in his family. My husband is hearing impaired, as are many of his relatives. They are all very successful people and I falsely assumed that having hearing impaired children would be an easy path to tread.
After Rosie was born we soon realised that she was a very intelligent child. She was speaking clear sentences at 18 months of age! I assumed that her hearing was normal and life moved on.
Jacob was born 17 months later. I was a very busy young mum and hadn't noticed anything different about Jacob until the day of his first birthday. We were sitting on the floor at my parent's house. Dad wanted to take a photo of Jacob and so I was calling him to turn around. He didn't. I kept calling - louder and louder. He still didn't turn. I started to cry. We made an appointment to see an audiologist at Australian Hearing. They told us he possibly had a mild to moderate hearing loss and to come back when he was a bit older so they could do a more thorough test. We took him back at aged 2 and he was diagnosed with a bilateral moderate hearing impairment. The day after that he was diagnosed with an astigmatism, a turned eye and severe long-sightedness. So his hearing took a back seat for a while as we had to adjust to his frequent trips to an opthalmologist, wearing glasses and wearing a patch on his left eye for the next two years. He was finally fitted with behind the ear hearing aids at the age of five.
When Joseph, our second son was 17 months old I began to get concerned that he was only saying a few words. I took him to Australian Hearing and we were told that he possibly had a mild to moderate loss (just like Jacob) and to come back in six months for further evaluation. Charlotte was born that month and Joseph's speech very slowly improved. However he became more and more difficult to handle. His temper was out of control. It was a very trying time. When Joseph was 3 years old his hearing seemed to deteriorate quite rapidly. One day when we were playing outside he just could not hear me at all. We phoned Australian Hearing, however the next available appointment was not for several months. We asked our doctor what to do and he referred us to a paediatrician. The paediatrician felt that the behavioural difficulties were due to his deteriorating hearing and that we needed to have an Auditory Brainstem Response (ABR) test immediately.
An ABR is an automatic test that looks at the response of the hearing nerve. It can be performed on a child of any age. We wished this had been performed earlier. The ABR showed Joseph to have severe to profound deafness in both ears. We were told this was the worse case scenario as he had fluid in his middle ears at the time of the test. We didn't know what the best case might be. I went home and cried for three weeks. I was pregnant, emotional and didn't know what was ahead for my little boy. I felt no one would understand and so I couldn't talk to anyone about it. My husband was offended as though by my being upset I was saying that there was something wrong with being deaf, that there was something wrong with him. But I was crying for all the times Joseph had heard me yell but missed my whispers of love in his ear. It was heartbreaking.
Three weeks later the fluid in his ears had cleared and we had two days of intense hearing testing. I will never forget sitting in that soundproof room, watching his beautiful smiling face as they played sounds through the microphone that I could hear 'loud and clear' but he was completely unaware of. It was so hard not to break down in front of him. The final diagnosis was profound deafness in the left ear and moderate to severe in the right. So it was not as bad as it could have been, but it wasn't great.
When we got back home I went outside and cried for an hour. Then I picked myself up and tried to decide what to do. The first step was an Ear Nose and Throat specialist. He gave the go ahead for the hearing aid (it was decided he would derive no benefit from a hearing aid in his left ear).
We then met with a geneticist who was finally able to explain to us the genetic reason behind our family hearing impairment. At last we had our answers. Yes, we could have children with hearing worse than my husbands. It didn't matter that my hearing was perfect. We had a one in two chance of each child being hearing impaired, and the impairment could be mild to total. Their hearing loss was nothing I had done or hadn't done, and that was a load off my mind.
We had Rosie tested, to find that she is mild to moderately impaired in one ear (something we would never have guessed) and we had Charlotte tested to find that she is our one normal hearing child, and the only who will not carry on the gene to her children.
Our next big appointment was when Noah was five weeks old. Noah had an ABR test to find that he has a mild to moderate bilateral hearing impairment.
I first heard of the Hear and Say Centre through our Advisory Visiting Teacher for the Hearing Impaired, who suggested I ring seeking advice about speech therapy. The first time I phoned I spoke to the founder, Dimity Dornan. She was so lovely and understanding and let me pour out my whole story. She told us to come down for an appointment. She greeted us at the door and we sat in her office for two hours discussing our case. We were given a tour of the facilities which are just beautiful. There are state of the art audiology rooms, therapy rooms, conference rooms and a playgroup room. We were given appointments for all our children to have their speech, language and hearing extensively tested later that month and Dimity hugged me 'goodbye' at the door. It was so healing to have someone understand and care. Someone we could talk to who knew the lingo and knew what it was like to live with hearing impaired kids. My isolation began to fade.
The children's speech and language test results were found to be well above the average for normal hearing children their age. So everything we had done from the moment we became aware of their deafness was working. We had spoken to their faces, loudly and clearly. We had read them books, lots of books, and we had answered every question they had as fully as we could. It had been hard work but it had been worth it.
Dimity told me that normally we would have to travel to Brisbane for therapy but that there was an internationally trained teacher of the deaf in our small town! So we now have Wendy, who is an incredibly wonderful, caring therapist. We love the Auditory-Verbal Therapy approach, which fits right in with what we had been doing with the children at home. All in all, we have been incredibly blessed by the support and help from the Hear and Say Centre. They are doing something amazing for us and so many other families struggling with hearing impairment.
To finish up our story, Rosie is in year six and at the top of her class. She enjoys ballet and piano. Jacob is in grade four and is also extremely intelligent. He loves to read, play soccer and has just started piano. Joseph is in grade two. School is going really well for him as he is very bright but he very much needs my help, and that of his wonderful teacher to keep succeeding. Charlotte loves ballet and preschool and doesn't yet realise that she is different to her siblings. Noah was fitted with a hearing aid at 15 months and is developing very well. I hope and pray that their hearing doesn't deteriorate, and I hope that they can lead a normal and happy life. It is a much harder road than I thought it would be, but they are beautiful, intelligent kids and I wouldn't change a thing.
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