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?
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.
In February 2010 my daughter Kaitlyn was diagnosed with progressive hearing loss, and I cried. She was two years old, a bright beautiful girl and I didn't want her to wear hearing aids or a cochlear implant; I didn't want her to be excluded from play because of a disability; I didn't want her to talk differently or not at all. I didn't want her to be deaf.
After the diagnosis, we were overwhelmed with appointments €”there was speech therapy, hearing tests, diagnostic tests in hospitals and appointments with the ENT. For the first six months there were an average of two appointments a week and I had to stop working just to fit it all in. The focus in all of these appointments was to try to fix my daughter. Everyone was trying to squeeze Kaitlyn into a box. A big focus was on acquiring clear speech and we were advised not to use any gestures or signs, as they believed that this interfered with Kaitlyn's ability to learn spoken English.
At the place where we received speech therapy, they brought in a Deaf teenager with cochlear implants and had her speak to us. Listen, listen to her voice the counsellor said, Isn't it beautiful? The girl did have a lovely clear voice, but she also spoke of how much she hated one of her cochlear implants, of how she wasn't going to wear it as soon as she turned 18. And she said she still had trouble hearing in many situations. It was then that I began to wonder if this was the only path for my daughter.
My husband and I started Sign Language I at Sydney Community College in October of last year. We walked into a crowded class unsure of what to expect. When the pretty young woman next to me asked why I was learning Sign Language and I explained that our daughter was Deaf, she said, Oh! in an excited voice. I had never had that reaction before. Sometimes people flinch when I tell them about Kaitlyn's deafness, sometimes they say they're sorry; occasionally they cry; they are never excited. It was refreshing to see the look on this girl's face. Then class began and we started signing, and we haven't stopped since.
We didn't just learn basic Auslan in our class €”we also learned about the Deaf Community and Deaf Culture. We were introduced to a whole new world, where Deafness was not a disability, but an identity. Now I'm taking Certificate II Auslan at DEN. It's not easy. I'm 36; my brain is not set up to learn a new language quickly, but with the support of the Deaf Community I do believe we will get there.
When I found out about the only bilingual pre-school for Deaf kids in Sydney, Roberta Reid Preschool, I went to visit with Kaitlyn; we both loved it. I have since taken her out of the mainstream pre-school, which she never enjoyed. Kaitlyn prefers Roberta Reid, where the kids wear hearing aids like her and they sign and speak English.
There is little support for hearing parents who want to teach their kids to sign in NSW and I have to admit that there are moments when it all feels too daunting. There are times when I break down and think I will never become fluent in Auslan, but I receive much support from my teachers and classmates at DEN, from the teachers at Roberta Reid and from the Deaf Community. There are no playgroups for kids that sign, but I would like to start one. There is still no Auslan in schools in New South Wales, but I'm determined that the primary school where Kaitlyn goes will offer Auslan as a second language to the students in her class.
This is where PODC comes into play. The organisation supports all kinds of education for Deaf kids. They are a place where we can go to make contacts, find out about resources for our children and receive support. For a long time, Kaitlyn asked me why we sign. At first, I was reluctant to tell her that she was Deaf. It has such negative connotations in the hearing world. But then I started to spend time with other Deaf people €”I started to learn their culture and their language and I saw the advantage of being bilingual and bicultural. When I meet a Deaf person and tell them that my daughter's Deaf, they smile, or they make the sign for 'beautiful'.
The other morning at breakfast, Kaitlyn asked over her oatmeal, 'Mama, why we sign?'
I took a deep breath and said, 'Because there's something very special about you, Kaitlyn. You're Deaf and that is a beautiful thing. You are part of the Deaf world, which means you have a whole community, a whole culture that is open to you, but you have to learn to sign in order to be a part of it.' She seemed satisfied with this answer. And we resumed our conversation in Auslan.
My son, Joel, was diagnosed with profound hearing loss at 18months of age after months of speculation by specialists (one even told us that all he needed was grommets) family and friends.
Fortunately for my husband and I, Joel is not our first child and as such we were aware that something was not quite right. Mind you, we thought he was an angel sleeping through constant loud noises (our eldest son was in a rock band and the four girls danced - but not to the same music!!) We first thought that he had acclimatised to noise whilst in the womb and nothing fazed him. It was New Year Eve when I became convinced that all was not right.
We adopted our first child when she was 2 months old. We did not know she was deaf and we thought all those sorts of tests were done before the adoption took place. I asked our GP if she might be deaf when she was 12 months old and he said she was too bright to be deaf. She was diagnosed as deaf in England in 1961 at two and a half years of age and we were sent to a speech therapist for lessons. Julie was fitted with 2 bodyworn hearing aids and we started to practise auditory training with her also lipreading as well as teaching vocabulary. This was a new method called the Auditory Oral Method which meant fitting hearing aids as soon as diagnosis and using an Auditory Trainer machine for lessons. Our Speech Therapist had worked with a research group at Reading University using this new method so we came into this sort of teaching early. It also meant that I had to be taught to do the teaching which was good and she guided me in what to do. Julie's hearing loss was described as severe to profound.
We arrived back in Australia in February 1963 and she started in the Opportunity Deaf Class at Chatswood School in June that year. The Education Department started deaf children at 4 and a half in order to teach them more vocabulary as quickly as possible. We found the preschool deaf children only had one Education Department teacher and she was based in York Street in Sydney. The children were fitted with one hearing aid in Australia going to one ear. When I complained that we had two in England, Julie was given a y-cord so it divided to go to both ears but lost some power by doing this.
The Opportunity Deaf Class at Chatswood had 10 deaf children in one room with 2 Teachers of the Deaf and all ages between Kindergarten and Sixth Class. There were other OD Classes around New South Wales . This was so they could have some integration and there were also some Catholic Deaf Schools such as St Gabriels and Waratah in Newcastle. There was also the Royal Institute for Deaf and Blind Children recently moved to North Rocks from Darlington. Signing Classes were taught at North Rocks but the big emphasis in Deaf Education was on learning to listen and lipread and to talk.
This new method was being used by teachers of the deaf who were trained at the Sydney Teachers College. In 1954, 5 new teachers were trained to teach the oral method and as more demand came, there were more teachers of the deaf trained. The parents were all keen to have their children taught to speak so there was a lot of interest in what needed to be done to achieve this.
My husband John and I heard about other parents wanting to form a NSW Parents of Deaf Children Association and so it all came about that the Federation for Junior Deaf Education was started in 1963 . There were members from all over the State who set up branches around where an OD class was based in a hearing school .We tried to get funding from the State Government to pay for administration help but the Royal Institute said that they were the Deaf Organisation which looked after deaf children so we didn't get funding.
At first we called our local Parent Group 'The Chatswood Deaf Children's Association' but as we started lobbying for more assistance for deaf children, we were able to get much better conditions for their tuition .We were able to divide the children at Chatswood into 2 classes each having a separate room and then starting other OD classes on the North Shore such as Roseville, Brookvale and then Chatswood High . Later St Ives High was added too. So we changed our name to the North Shore Deaf Children's Parent Group. The other Parent Groups were also doing these sorts of things and would appeal to the FJDE for support in their requests. My husband became the first President of the North Shore Deaf and I was on the Committee, John also was on the Committee of the FJDE later was President and I was Vice-President too.
At all times the Federation for Junior Deaf Education was the moving force and because it represented deaf children all over the State, it carried much more weight. The Committee would request meetings with the State Government Minister for Education and pressure him/her to improve services and the local Parent Group would add its voice too. They would try to get local MPs involved and hopefully the local press. We all raised money for our local groups to buy necessary items for the classes.
One early success was getting taxi pickups to drive the children from home to the OD classes. When Julie started at Chatswood OD, we were living at North Sydney. We didn't have a car so Julie ,my younger daughter Victoria and I got a train up to Chatswood to take Julie to school and then we went home. We did the same in reverse in the afternoon. It was very time and energy consuming. One mother who had no car had to come from the beach area to Chatswood and it was too far to go home and back again later so she stayed at school the whole day becoming an unofficial aide to the class. Other children came from Mount Colah so that was very difficult as well.
Well the Federation made requests to the NSW Government for taxi pickups and we were the first disability to achieve this benefit for our families. Once the children reached a certain age, the taxi pickup was stopped and they came to school under their own steam. As you will have seen on the news at the beginning of this school year, the taxi or bus pickups for the disabled had great problems as new contracts were negotiated with the drivers and in some cases the payment was cut so some disabled children were left waiting without pickups . It has all been sorted out now.
Early on ,the situation about the few teachers for preschool deaf children was very much on my mind and as I was a trained preschool teacher, I asked if I could do the Teacher of the Deaf Course, only to find out because of having to take Julie to School and Victoria to Preschool and pick them up, I could not get to Sydney University in time. However because
I had been given so much tuition in England by Julie's Speech Therapist , the Education Department decided as they needed preschool teachers of the deaf so badly , to employ me and I started in 1968 in a tiny room at Chatswood Primary School to teach deaf babies and pre-schoolers , the first one outside Sydney apart from the Catholic or North Rocks ones. After a short time, the National Acoustic Laboratories set up Chatswood Hearing Centre and I was offered a teaching room there which was wonderful as I could work with the Audiologists testing the babies and they could get repairs , new moulds and batteries at the same time. I had children coming from Gosford , the beaches, out west and Eastern Suburbs , each having individual lessons and a parent or relative there too. We worked out a daily Program for the child and daily lessons planned. I had an Auditory Trainer and the child put on the earphones and the Mike was on the table in front. This gave a much better auditory input than the body aids which peaked at 18oo frequency and then dropped which meant the high frequencies which carried the softer consonants were not picked up. The Education Department started some Nursery OD Classes too in the Western Suburbs and The Shepherd Centre was set up in the late 60's. The RIDBC had some Preschools and the Catholic Deaf Education had Preschool Teachers of the Deaf. The Shepherd Centre also started with services for preschool deaf children.
These improvements were not just locally lobbied for. The FJDE was involved in all these campaigns. One popular decision we made was to have our meetings in different places where the Parent Groups were. We went to Bathurst, Newcastle , Tamworth, Penshurst, Wollongong , Outer Western Districts etc and met many parents as well. FJDE organised Conferences every year with visiting speakers , some from overseas. We had volunteers to look after the children so their parents could come to listen to the speakers. The FJDE also organised camps each year for the children to meet other deaf children
Another area where we continuously lobbied was with the Federal Government about their Hearing Services. We started at once to request 2 hearing aids and that came reasonably quickly. We organised talks with the Audiologists so we all knew how to read audiograms and to understand what an aided audiogram was , about such things as feedback, batteries running down, blowers to clean out wax in the tubing or moisture from the humidity in hard acrylic moulds. We had to have harnesses to put under shirts or dresses to hold the 2 body hearing aids or pockets in shirts or dresses. Sometimes the cords became bent or damaged and this caused intermittent sound.
In the 70's, we had a visit from Leahea Grammatico who was a famous Teacher or the Deaf from a San Francisco school called Peninsula Oral School She inspired us with her talk about individually fitted behind the ear hearing aids and Auditory Verbal Tuition. I was one of 17 specialist hearing professionals who went to San Francisco and Phoenix Arizona for a 5 week information tour . A machine was used by the teacher of the deaf to help to assess what individual hearing graph was necessary for each ear which would then be transferred to the earlevel hearing aid. This was used for each ear. We had lectures about earmoulds, tubing
and the hearing aids themselves as they were adamant aids must be kept in peak condition. The Hearing Aid Company gave us these lectures. We bought a Hearing Aid test box home with us and the hearing aids were regularly tested to make sure there was no distortion , intermittent sound or other problems. Each teacher had a personal earmould made so we could listen to each pupil's hearing aid and each parent was encouraged to have one made too.
All this pressure from parents and their own research encouraged National Hearing Services to move into producing behind the ear hearing aids such as those in the USA and our children were extremely lucky to get all these services for free. This is not so in most other countries.
These were the sort of involvements the FJDE had as it was the Organisation which was used by the parents as the troubleshooter. It kept in touch with the Governments and responded quickly if needed.
Some more I can mention was the Sound News Magazine which has a long history and lectures from abroad on teaching speech to deaf children, As the education and services of deaf children improved, they were gradually integrated into classes in the hearing school and later into their own local school or a private school. The Education Department set up the Itinerant Teacher of the Deaf Service and later the RIDBC set up the Garfield Barwick which amongst other things ,supplies the VTD for Private Schools. Also Consultants for the Deaf were set up in TAFE Colleges to help deaf students enrolled in various courses. Preschoolers were able to be taught by teachers installed a t various Australian Hearing Centres around NSW, the only state to have them but this seems to have stopped.
In the 80's I was Vice President of FJDE and I initiated 6 monthly meetings with Australian Hearing Services to discuss any problems . The Cochlear Implants had been used with some children mainly teenagers. As Australian Hearing looked after children wearing hearing aids free, we asked if they would also look after the children with Cochlear Implants free. I remember the excitement amongst the Audiologists who we were meeting. So that is what happened and those children tested for hearing loss at birth can be fitted with Implants now close to birth. Of course the Swish program was pushed very much by PCDE and came about because of this and other professionals' dedication . Unbeknown to parents of the new generations who have their babies hearing tested at birth, this was a wonderful win for those who had battled for it.
At some stage in the early 90's I think, the FJDE changed into Parent Council for Deaf Education and moved into rooms at RIDBC.
I retired close to this time. However, 3 parents from the North Shore Deaf in 1997 started a group called 'Let Us Hear' to lobby the Federal Parliament to allow previous child clients of Australian Hearing to still access Australian Hearing Services over the age of 21 as their hearing aids and Cochlear Implants are so costly to replace or repair, it was too expensive for many deaf people to afford. Some became depressed if they could not replace them and I even heard of some suicides. After years of meetings with Ministers in the Howard Government achieved nothing, I was rung up on Budget night in May last year by the Minister, Mark Butler's Adviser to say the AH Services would be pushed back to 26 years. This started on 1st January this year. We are very grateful for this extension but of course we want it to be a service for life for this particular group of deaf people.
At the time of my retirement, I was looking after 28 families,--14 (50%) were premature babies and 50% of those 14 (7) suffered from Cerebral Palsy. Most were multidisabled and there then became a problem which disabled class they were placed in eg deaf, cerebral palsy or intellectually delayed. My last victory was to get the Education Department to agree that if the deaf child was in a class for another disability, he/she would still receive a weekly lesson from an Itinerant Teacher of the Deaf who could also advise the other teacher in matters to do with deafness.
In 1997, I was asked to join a small group of North Shore Mothers Noelene Hiron and Barbara Fisher who wanted to lobby the Federal Government to allow previous child clients of Australian Hearing to continue to access Australian hearing over the age of 21 years which was the age when it ceased. We called ourselves 'Let Us Hear' This group found that buying new hearing aids or new speech processors for Cochlear Implants, was so costly to replace or repair, it was too expensive for many deaf people to afford. Some became very depressed and I was told, some had even committed suicide. This was obviously becoming very serious so Let Us Hear lobbied the Minister for Ageing, Mental Health and Hearing Services , Mark Butler and in last year's Budget, the Government gave Hearing Services an extra amount of funding part of which gave child clients of Australian Hearing an extension of 5 years to continue to access their services. It now ceases at the 26th birthday.
I cannot emphasize enough to parents of deaf children to take notice of the National Disabilities Insurance Scheme as this is hoped to cover the disabled for life. It is being discussed by the Federal and State Governments at this moment. You need to have meetings with your local members of parliament to make sure the needs of the deaf are looked after. You need to always be alert to what is happening . Join the 'Count Me In' Disabilities movement which is officially taking notice of the Government's plan for the National Disability Insurance Scheme (NDIS)