Parent/children stories

Thomas' Story

Told by his mother, Simone

Our gorgeous son, Thomas, was born by emergency caesar six weeks earlier than expected, spending two weeks in a special care unit before coming home to see in the 2002 New Year. Thomas underwent a standard ABR hearing test whilst in the unit as he was considered 'at risk' for hearing impairment due to his prematurity. My husband, Norm, and I were extremely surprised when we were informed his results were abnormal but were told not to worry, as they were probably incorrect. The ABR was repeated when Thomas was six weeks old and I was devastated as I was watched Thomas fail test after test, I couldn't believe it when the audiologist started talking about hearing aids.

I felt so cheated and angry. We finally had the beautiful child we had dreamed of and the thought that he couldn't hear our voices was heartbreaking. The first few months were a blur. We seemed to be dragging Thomas to a different appointment every day. However, by eleven weeks of age Thomas was fitted with hearing aids and enrolled in the Auditory-Verbal early intervention program at the Hear and Say Centre.

Thomas is now 13 months old and I look back over the last year and wonder how we managed everything. We have had fantastic support through the Hear and Say Centre, which has provided us with opportunities to meet many beautiful, well-spoken, hearing impaired children and their parents, and helped us begin to accept Thomas' loss.

I can remember when Thomas' hearing aids were first turned on – we said hello to our little boy and his beautiful blue eyes opened wide. He had heard us and we felt such joy. I now think how lucky we are that Thomas's hearing loss was detected so early.

Thomas's hearing has deteriorated recently so we are currently preparing for him to receive a cochlear implant. Our hope is that Thomas will benefit from the implant and continue to develop into a sociable and confident little boy, who is not held back by his hearing impairment.

Thomas with his mother, Simone.

Thomas's hearing has deteriorated recently so he is currently being prepared to receive a cochlear implant.

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.

The children's speech and language test results were found to be well above the average for normal hearing children their age.

Carl's Story

Told by his mother Loretta

Carl was diagnosed at birth with a hearing problem, and after many hearing tests was fitted with hearing aids at 6-8 months of age. Trying to get Carl to keep his aids in was the hardest obstacle to overcome. We went for interviews at three different schools and the first one we went to made me want to run away and hide Carl from the world.

Then the Hear and Say Centre, with Dimity, helped me realise that these children with hearing problems can do anything any hearing child can do. They don't need sign language, they just have to learn how to listen. If ever I had questions or was worried about Carl, all I had to do was pick up the phone. How do you thank someone who is so dedicated to these children? The teachers at this Centre are so wonderful, patient, and understanding that Carl could never wait to go back!

Carl can now do anything and everything. Talk! Sometimes I just wish I could have five minutes of peace. It might seem that when first told of your child's hearing impairment that your world has just closed, but in reality it has just opened. You get to spend extra-quality time with your special child and when those first long awaited words come out, that world that was closed has just opened up to be so much brighter. This Centre teaches you as parents how to understand what lays ahead of you and how to teach your child to speak and listen. Your child who is hearing impaired can and will accomplish anything that is put in front of them.

Carl is now in grade three and doing very well. Carl has never been teased or picked on for wearing hearing aids or glasses. In fact all the kids have helped Carl. For example, if he hasn't heard the teacher out in the playground they will go up to Carl and tell him what the teacher has said. Also, if his hearing aid has popped out from behind his ear they will tell Carl "Your hearing aid is falling out" or try to put it back on for him. I was terrified that Carl would be bullied at school for being different, but the opposite has happened. Carl is extremely popular at school. To parents with children starting school don't fret about them like I did. It just means having a lot of sleepless nights for no reason. These children fit into school better than a lot of children.

To all parents, my best advice to you is to have no fears. Your child will cope with anything better than you will!

Thank you everyone from the bottom of our hearts.

Carl - a star in grade one!

Carl is now in grade three and doing very well. I was terrified that Carl would be bullied at school for being different, but the opposite has happened. Carl is extremely popular at school.

Hamish and Madeleine's Story

Told by their mother, Bronwen

Hi, my name is Bronwen. I have boy/girl twins, born in 1991, and both have a moderate-severe bilateral hearing loss. Hamish's loss has since progressed to a mixed sloping severe loss mainly due to chronic ear infections.

Hamish and Madeleine were born in Brisbane and their hearing loss was diagnosed at six weeks of age by an ABR test. We were fortunate that we found out early. The test was performed because of their father's family history of hearing impairment. However, at the time we were living in a remote area in Outback Queensland so hearing aids were not fitted until six months of age on a visit back to Brisbane.

I went through the process of grief less intensely at first, and felt it more as the children were growing and as I began to understand the implications of their hearing loss. At times in conversation, something would be said with pity or lack of knowledge about Hamish and Madeleine's hearing impairment, and the sadness and sense of loss would 'stab' at me. It was hard not to get caught up in this sadness and feeling of 'not doing enough for them'. After a while a sense of balance returned and an enormous self-growth occurred through grief, but also through the acquisition of knowledge.

I heard about Dimity Dornan's great work with deaf children using an Auditory-Verbal program. After a quick visit to see Dimity whilst 'traveling through' Brisbane, we became 'remote clients' of the Hear and Say Centre when it was established.
There were many wonderful things that the Centre 'gave' to my children and myself over the five years we were 'clients'. A sense of empowerment and direction came because of the vast amounts of quality information provided; a feeling of being supported and listened to; a 'gathering' of friends and a sense of community; and an enrichment and delight in the enjoyment of the 'product', that is, my children!

In the year 2003, Hamish and Madeleine are active and self-confident eleven-year-olds. They are in Scouts, in the school choir and percussion band, learn tennis, swimming, and highland dancing. Hamish plays soccer and learns archery and Maddie has taken up horseriding. It never stops! (Nor does the enjoyment of seeing your children interact verbally and hold their own in speaking competitions!)

Hamish and Madeleine are happy and well-adjusted children. They have integrated exceptionally well into their local primary school. Since Year Three, the children have used an FM system in their classroom, which assists their listening and learning in the noisy classroom environment.

And for Mum...Life is busy, tiring, but wonderfully full...of laughter, pleasure, joyfulness, and new experiences. Having children with a disability offers so many opportunities to 'rise' to the occasion and face new challenges. However, there have been times when I have felt overwhelmed with the workload and have had to learn to ask for support and help.

My advice to you all; is YES, it is hard work, but have fun, and 'live and love life' with your children. Remember it all goes so very quickly and the potential for you and your children to have a beautiful relationship is unlimited and so very rewarding.

Take each day as it comes, and never forget the 'magic' in your child.

All the very best, Bronwen.

Hamish and Madeleine are happy and well-adjusted children. They have integrated exceptionally well into their local primary school.

The Della Rosa Story

Told by her mother, Janelle

Della was born a beautiful, healthy baby and for her first ten months of life absolutely blossomed. Della contracted pneumococcal meningitis at the very vulnerable age of ten months, and came close to dying. After a slow recovery, Della was diagnosed as having a severe to profound hearing loss, caused by the bout of meningitis.

After my initial feelings of denial about the level of Della's hearing loss, I decided to get on with doing what was best for Della. I didn't want Della to miss out on anything.

She received her first hearing aids at 16 months of age, and was more fond of pulling them out of her ears than actually keeping them in! This was a frustrating and worrying time for me, as I desperately wanted Della to understand the benefit of keeping her hearing aids in. Looking back, it is hard to believe we ever had a problem, as they are now the first thing she asks for in the morning, and the last thing she takes out before she goes to sleep.

By the time Della was 17 months old, we were having our first lesson at the Hear and Say Centre. It did not take very long to decide which type of early intervention I wanted for Della. For me, there was absolutely no alternative, but to follow the Auditory-Verbal pathway. I wanted Della to learn to listen, speak, and communicate in the hearing world. I wanted her to have every opportunity, that she would have had, had she not lost her hearing through that dreadful disease.

What an incredible journey we have had. Della is now five years old and she is above average in her speech and comprehension. She attends a mainstream school full-time and absolutely loves it! Della is very popular with her 'hearing' peers and loves having her friends come over to play. Her little friends are quite fascinated by Della's 'special ear-rings' and her FM system which she wears every day at school.

Her favourite activities are drawing and writing, and she loves choosing which of her books she will take to school for 'show and tell'. Della loves to recite her favourite stories to her Nanna which invariably start with "Once upon a time..."

'Once upon a time there was a little girl named Della, she listens, she speaks, and most importantly, she lives!!!!'

Della is now five years old and she is above average in her speech and comprehension. She attends a mainstream school full-time and absolutely loves it!