Our Stories

Misha's Story

When I found out Misha had a bilateral profound hearing loss I was shocked. A couple of days later, after I had gone through a box of tissues, I looked at my chubby, 10-month old, adorable angel, the picture of health, and thought – “this is only news to me”. Nothing for him had changed.

Very soon after diagnosis, I happened to visit my parents in Perth. My mother was very proactive, saying, “OK, we know he’s deaf, now we have to thoroughly educate ourselves as to the best path for him to take”. We researched dozens of sites on the internet and visited the library for all the books on deafness we could get our hands on.

One of my main concerns was language development, since I’d read that deaf children were generally 2-3 years behind their hearing counterparts. I also wanted to avoid the sad situation I found in my research, where some children who had grown up without signing at home had felt left out of family discussions because they couldn’t follow the conversation, and those who also felt like they had missed out on a lot of their childhood by spending inordinate amounts of time in speech therapy from a very young age.

My mum borrowed Oliver Sacks’ Seeing Voices from the local library, and it opened my eyes to an amazing world of deafness. I found it incredibly uplifting that through sign language, Misha would have an easily accessible language through which to communicate. We really wanted Misha to be like a normal kid and be able to communicate quickly and easily with his parents and siblings. I also didn’t want to be Misha’s teacher/speech pathologist all the time – I just wanted to be his mum.

Straightaway we learned a few signs and started using them all the time. It was as if a light bulb had lit up in his head. Within a week, Misha who had just turned one, was signing “light”, “food” and “drink”, and we enrolled in a TAFE course so we could continue to be language models for him. As Misha was our first child, we figured that any of our other subsequent children would pick up signing fairly easily from seeing us use it all the time. Our family were very supportive and six of our immediate family started the course with us, which was lots of fun and there was no written homework!

A year after Misha was diagnosed, we visited the Cochlear Implant Clinic, having done a lot of research into the relative success of the CI. When they told us they couldn’t guarantee an improvement greater than the equivalent of an aided severe hearing loss (even though a few children with a CI do better than that), we didn’t think it was worth the risk of implanting a foreign object into Misha’s head. It didn’t feel right for us - we felt that by implanting Misha we would effectively be saying “You aren’t good enough the way you are.”

Two years down the track, my husband and I are enrolled in a Graduate Diploma in Auslan at La Trobe University to further our skills and fine-tune our grammar. Misha has a good language base in Auslan and with his current cognitive and language skills he has shown a lot of interest in tackling speech. He is now old enough to spend a bit of time in speech therapy, and more importantly, understands the purpose of it. With his funky bright red hearing aids, Misha signs not-stop at home, at the play ground, everywhere... People often approach me because they are fascinated by seeing us sign in Auslan and express interest in learning it. Often I show them a few signs so they can sign with Misha and they love it when Misha signs back!

March 2005

Bella's Story

Scott & I waited years to have a baby. We wanted it just so. My pregnancy was as planned as these things can be and we had the nursery all set up in anticipation. I was careful during the pregnancy - no caffeine, alcohol, excessive or bad food and lots of gentle exercise. We read up on how to help baby’s development along quicker once born and played music to my belly to soothe the baby. We were determined our child would be reading and writing long before the “average” age. We had the usual tests and got an ‘A’ report card at our ultrasound. I remember the doctor saying, “Now you realise we can’t test for things like deafness?” Yeah, yeah.

In June 2003, Bella Bambino was born – beautiful baby. A girl – Isabella Mae and we were besotted. Everyone exclaimed how beautiful she was, right from day 1. At 2 weeks we took her for a routine SWISH test at the local country community health centre. They told us this was a new test that had only been around a year or so. The test was “negative”. My heart dropped to my stomach. I was speechless. Scott finished the conversation and we left with some pamphlets. It was a black day. We read that the test could be incorrect or she might be blocked up with a cold (well she did have the sniffles). I rang Bella’s doctor in tears and he said this had happened to other patients of his and further tests invariably came back OK.

We tried our own tests at home – banging doors and clapping but they were inconclusive as we knew babies are unreliable. We were appeased and although we both felt a knot of dread deep down we kept positive and got on with it. We did the same test again a week later with the same results but again Scott was able to allay our fears by saying, “Of course this test is negative again - as before…we need a second opinion.” They told us we would need to see a specialist but were vague on details. We assumed it would be at the big next town 40 minutes away. They rang to say it would be in Sydney – 10 hours away!!! I told the man, “You are really worrying me now – this must be serious.” He explained that baby’s hearing is very specialised and testing is only available in capital cities so it was nothing to worry about. (Its funny how, at the time, you keep believing the positive even though in hindsight it seems quite obvious something was wrong early on. We just didn’t see it as we were going through it). I argued that we would go to Brisbane – 2 hours away, but not Sydney – 10 hours away. We got an appointment in Brisbane.

I will never forget that day. Bella was 6 weeks old. We had done more noise tests at home and had some responses to slammed doors etc. so we were buoyed by this – hoped it was all a terrible mistake. We were shuffled into a yukky waiting room filled with deaf, cochlear implant and decibel charts on the walls but ignored all this as we wouldn’t be needing any of it. Thankfully Bella slept while they attached electrodes and fiddled for the longest one and a half hours of our lives – silent – watching screens we couldn’t interpret.

Finally the technician turned and said, “I’m getting nothing.” Wait…stop… back up a minute…what does that mean? She is profoundly deaf. What does that mean? The meeting was over. Everything a blur. I somehow managed to ask for some information to take home as we couldn’t assimilate anything right then. She was gone what seemed an age before returning embarrassed with a few photocopies about hearing aids?? She was very apologetic. (It wasn’t until weeks later that we received the Choices book. How I wish we had received it on that first day). We knew nothing and were sent off home with a sorry and a wave.

The two hour drive home was terrible. Silence for the first hour. Couldn’t take it in, couldn’t believe it or speak it. Someone had ripped out my heart at that hospital and taken it away. Could I swap my hearing for hers and make it all better? No. I was helpless. She would never hear my voice…I love you. What about her life? How would she cope in this tough world with such a huge disadvantage? Would she ever have a husband? Children? A job?

Scott and I started to talk. We tried to be rational and positive instead of emotional. We talked about what we could do – find out everything we could about deafness and do everything to make her life full. We decided to sell our home and go travelling because if she wasn’t going to hear then she was going to do everything else life had to offer. She would not miss out. It felt good to be positive and talk through our fears and sadness and this was the first step to overcoming this initial sad news.

At first we didn’t tell anyone except a few of our immediate family. I knew that to tell others would mean having lots of long, drawn out conversations about the whole thing and we just literally couldn’t talk about it without breaking down. We waited to tell people for a while until we felt stronger and ironically when we did eventually tell other family and friends we found ourselves comforting others as we told them the sad news.

The next few months were a flurry of activity as we empowered ourselves with knowledge. Days spent on internet sites, reading brochures and charts from Australian Hearing (AH) and the Deaf Society. We got Bell hearing aids. I was fine until they put them on her – she was only 12 weeks old and they were so big! I could not even bear to keep them on as we left AH. It was a few weeks before I could bring myself to put them on her but we slowly got used to it. It was hard with a baby as she lay down all day so the hearing aids constantly whistled and popped out. What a torment it seemed.

We started doing testing in Brisbane to find out why she was born deaf but they don’t know why (this is the result in 40% of cases). Then due to funding issues between the States we were told we would have to swap to Sydney. The threat of that ten hour drive loomed again. So we started the treks to Sydney. Bella’s tests showed her to be profound “plus” in both ears. Nothing repeatable up to 110 dBs. Even with the hearing aids she was only getting to around 95 dBs – still in the profound range and not good enough to hear speech. We started looking into the cochlear implant (CI). Back to the internet – weeks of reading, questioning.

This was when I joined Aussie Deaf Kids internet group for parents of deaf children. They were and still are one of the best resources I have. Talking to other parents who had been through similar experiences was invaluable. Asking the silliest questions and admitting the silliest fears – all lightened our load considerably and we were able to get some good, honest insight into this new world.

We drove down to Sydney a few times at the end of 2003 – Bell was 6 months old. We had meetings with Royal Institute for Deaf and Blind Children (RIDBC) and Sydney Cochlear Implant Centre (SCIC) - investigations. After much deliberating, we decided to start the evaluation process for a cochlear implant and leave our final decision until we had more information. The only stipulation – if we decided to get the cochlear implant, we wanted to get it as soon as possible to give Bella the best chances of learning to listen and speak. We started evaluation in February 2004. SCIC agreed to fast track Bella, but this meant a big commitment on our part over the next 12 months – fine, we would do whatever it took.

So we started the trips to Sydney in earnest. I was already off work on maternity leave so being in Sydney whenever they wanted wasn’t a problem but Scott made the hard decision to quit his job so he too could fully participate in all that was necessary. Constant trips to Sydney – how could we do it? Drive, fly, train? Back to the internet. The answer: IPTAAS – a government agency providing partial funding for medical related travel. Flying would have been ideal but alas IPTAAS would only partially fund one flight for me and we definitely couldn’t afford $200 a week to fly Scott. So it was driving, with IPTAAS reimbursing fuel & $47/night for accommodation (which doesn’t go far in Sydney).

A regular week – we would leave for Sydney on a Sunday afternoon and drive through the night while Bell slept, as she hated being strapped in the car for hours. Stop outside Sydney overnight and then drive through to her mid-morning appointment. Then over to RIDBC where we could stay in very basic accommodation, relatively cheaply. It was also better to drive so we had the car to get around the city for all the appointments, hospital visits etc. We would have several appointments and leave on the Wednesday usually driving straight back as we were desperate to be home. Thursday, Friday, Saturday at home and then it started again.

We did this for several months during the initial evaluation, surgery and switch on. We knew we couldn’t keep this up physically or financially. So once the crucial months were over, and Bell only required therapy and mapping once a week, Bella and I started to fly down weekly for the day and Scott went back to work.

The evaluation usually takes 3 months but we did it in 6 weeks. So Bell got the cochlear implant at 9 months of age – March 2004. In the end it was one of those big decisions - you can never feel 100 percent sure. Every child’s experience is different and no-one can see what the future might hold. But Scott and I were confident that we were making the right decisions and any risks of infection or it being unsuccessful now or in the future were small, calculated risks worth taking for the beneficial outcome. We had the utmost confidence in Bella’s doctor – Prof Gibson, who is at the forefront in the world in cochlear implant surgery. In the final meeting with SCIC, we spent hours going over every question and worry, no matter how small, so we could be sure our decision was made with all the facts - good and bad. Members of the meeting breathed a sigh of relief when I declared I had covered all 40 or so questions on my list!

Surgery went well although it was a long and horrible day and night spent in hospital. Bell’s head swelled the next day but she was up and racing around like she hadn’t just spent 4 hours in surgery. Little trooper. Switch on was a few weeks later – 13th April 2004. It went really well and was a momentous occasion. Bella didn’t freak out and was quite happy and normal hearing for the first time. I remember saying “Isabella! Hello! I love you!” We took her back to the motel and shared great joy as we showed her all the noises her toys made that she had never heard before. It was wonderful to watch her expression.

While all this was happening we had other things going on. Although we decided to do Auditory-verbal therapy for Bella’s cochlear implant, our real beliefs on communication methods were more steeped in Total Communication. We believe that Bella having the CI doesn’t change the fact that she is deaf so we want her to be a part of the hearing world and the Deaf community too, not separate as CI users sometimes are. So we started Signed English at TAFE one night/week with a fantastic teacher who taught us signing and deaf awareness - deaf communication, etiquette, humour and the deaf’s point of view. We practice our signing regularly and use it with Bella as much as possible. She knows about 40-50 signs already and we find it is great living near the beach that we can still communicate with her when her cochlear implant is off (beach, bath, bedtime). We feel very strongly about being able to communicate thoroughly with her at all times and not just with the aid of a listening device.

Another invaluable resource has been the services of the Dept of Education Itinerant Teacher (IT). This service is provided to country families from birth through school for deaf kids. Our IT comes to our house once a week to do therapy with Bell – a combination of auditory-verbal and signing (at our request). It is a great link that keeps us up to date with information, accessing services & other parents. Once Bella is in school the IT will go into her school regularly to monitor her progress and provide any extra help she needs.

It has now been 10 months since Bella got the CI and her progress is incredible. She is 20 months old and age appropriate in her speech and listening as compared to the “averages” for hearing children. She can say about 40-50 words and lots of sounds such as ball, mama, daddy, pretty, star, dog etc and also some sentences like, “What’s that?” "Bye-bye daddy” and “roll the ball.” She listens to music and nursery rhymes and dances to the beat as well as trying to sing along. In current VROA tests, her hearing has improved to around 30-35 dBs - well within speech range. This confirms that she is hearing most everyday sounds.

It has been an amazing journey. Loads of hard work and commitment. We have been flying to Sydney weekly for the past 10 months and are in the process currently of cutting that back as Bella excels. It has been tough but everything we have done has been so worthwhile. We now realise what we didn’t in the early stages of the journey – all our fears and sadness were unwarranted. Bella will grow up to be a healthy, happy, deaf, normal individual who can hear, talk and sign. She is being introduced to every facet of the Deaf world as well as the hearing world and this can only be to her advantage. We now know that no matter what “Choices” we would have made for her – cochlear implant, signing etc. - everything is fine.
(2005)

"It is really great to be able to express these feelings to people who understand. One of my best friends is working with children with terminal illness and reminded me how lucky I am that I have a healthy baby in every other respect. Absolutely true. However, having said that there is still an implication that deafness is 'not so bad'. Well it is certainly 'not so bad' when compared to something life threatening but it still cannot be dismissed. It is a condition that affects our children every day for the rest of their lives. No matter how much people try to empathise I don't think they can understand unless they experience it. It's too easy to say it will be ok when your own children have all their senses in tact. I know people mean well but I just can't tolerate those sorts of comments at the moment. I think this is probably the hardest time...constantly watching for reactions - or rather lack of - and making noises to test her...then feeling bad for having done so. Part of me just wants to get on with the testing and know the truth. But another part of me knows that until that test is done there is still hope that she is just a normal sleepy baby who happens not to stir to noises easily. The waiting is just so very hard."

"I am the mother of Alex (Alexandra), a beautiful, easy going and fun loving 3 year old, who happens to be hearing impaired. Alex has a moderate hearing loss (55-60 decibels across all frequencies). Up until she failed her first hearing test at 8 months with the health care nurse, we had no reason to suspect there was a problem. She startled easily at loud sounds as a newborn, she turned when we called her name and settled when I sang to her. We thought when she failed that first test she was just being uncooperative, but after 4 months of further tests including an ABR her hearing loss was diagnosed. After spending 12 months with a child who you think has ‘nothing wrong’ it came as quite a shock to learn of her hearing loss. I had no prior experience with hearing impairment and had the naïve impression that you were either deaf or you weren’t. The possibility of having a partial loss never crossed my mind and it took some time to accept that there really was a problem, and that Alex would need to wear hearing aids for the rest of her life. It was also difficult explaining the situation to family and friends who were convinced she didn’t need hearing aids, as she seemed to hear normally.

If routine newborn hearing tests were performed at the time of Alex’s birth, we would have learnt of her hearing loss much earlier. Alex could have been aided earlier and not spent her first twelve months missing out on those crucial speech sounds and softer environmental sounds. Luckily Alex’s speech has stayed on track despite losing those first 12 ‘hearing months’. So many children with a moderate hearing loss slip through the system and are not diagnosed until a delay in their speech becomes apparent. Every month counts and these children have to work very hard to catch up. We are fortunate that our health care nurse was thorough and referred us for further testing or Alex might have slipped through too.

Newborn screening would have helped Alex, but from a parent’s point of view, I’m not sure how I would have felt if I had known earlier. Even though her diagnosis came as such a shock, I got to enjoy those first 8 months innocently believing everything was fine. It was hard enough dealing with hearing aids from 12 months onwards. It wouldn’t have affected my bonding with Alex, but I believe the joyful experience of becoming a mother would have been somewhat spoilt. Instead of just enjoying motherhood, I would have had to deal with the associated grief and loss of my ‘normal’ child that much sooner. Obviously an earlier diagnosis is beneficial for the child and this is what a parent desires most, but from a parent’s point of view, sometimes ignorance can be bliss.

Six weeks ago I gave birth to our son, Daniel. Because of Alex’s history, I booked him in for an ABR hearing test one week after his birth. I tried not to think about it too much during the pregnancy, but became more anxious in that first week leading up to the appointment. On one hand, I had to know one way or the other if he too would be hearing impaired, but on the other hand, I just wanted to enjoy him and not have that joy taken from me. I actually found myself thinking that if Daniel’s results were good, that somehow Alex’s problems would be fixed too, and would then come crashing back to the reality that even if Daniel is ok, Alex is stuck with this deal for life.

Unfortunately he was very unsettled the morning of the test and they were only able to complete the test on his left ear. Although the left ear passed, the responses were delayed, which they said was most likely caused by middle ear fluid. I found the whole experience quite distressing – watching my tiny son covered with electrodes and wires and trying desperately to stop him crying and get him to sleep so the test could be completed. It also brought back the pain of Alex’s diagnosis and the ‘why me’ feelings because of the unfairness of having to put my baby through this.

Five weeks later we returned to test the right ear and thankfully he settled this time and the test was completed. He got one bad response in a lower frequency and the left ear still showed delayed responses, but on testing his middle ear function, it was confirmed he had ‘eustachian tube dysfunction’ and that his hearing is most probably normal. We need to return when Daniel is 6 months for further testing, but just for reassurance more than because they are concerned. We can already see differences in Daniel’s responses to sounds when comparing him to Alex as a baby and feel confident that he will be fine.

In the first few days after the second ABR, I found myself reluctant to celebrate Daniel’s results. I guess I didn’t want to let my guard down too much in case they somehow had it wrong. It’s also because the experience brought to the surface the pain and frustration about Alex’s hearing loss that I still struggle with at times. Now I just need to focus on the positives – we are so lucky to have our two beautiful children in our lives. Alex is such a kind and loving little girl and is just besotted with her new baby brother. Her hearing loss is just a small part of who she is and we know that it will never stop her from doing whatever she wants in life."

Our son Morgan, now 9, was born with a mild/moderate loss in both ears. This was confirmed when he was 13 months old after being picked up by screening at the Maternal Health Centre. Our next son Liam, now 7, was born with normal hearing. I was already pregnant with the second when the first was diagnosed - I was pleased that we didn't have to think about when to have the next child.

We looked into the reason for Morgan's hearing loss but found no answers. After doing lots of reading and looking at the results of his tests I decided it was probably genetic and due to a spontaneous genetic mutation! It is more likely that it is a recessive genetic loss inherited from both of us.

I can honestly say that during my pregnancies I didn't worry about any other children having a hearing loss. I think this is because I believe that what was meant to be will be; with Morgan's loss he was still doing really well; and so another child would be okay and that Morgan may have been a one-off.

With the arrival of our third child and with the knowledge that the local hospital had a newborn screening trial, I let the hospital know twice that there was a history of hearing loss in our family. Sadly/unfortunately the procedure for the newborn screening (a trial) didn't seem to take into account families who already had a family history of hearing loss. When Gabi's test was a "refer" the nurse said she could be tested again before she left the hospital to check the result and we would be advised of a hearing test in the next 12 weeks or so if it was still a "refer". I clearly felt a "refer" was a "fail".

This was wrong for me (Al wasn't there at the time) and it made me feel powerless. I wanted an answer sooner than later and the date was in somebody else's hands. This may not affect some parents of babies who have a "refer" result but it was important to us (particularly me) and probably to most other parents with hearing loss in the family. I think they should have helped us organise the date before we left the hospital (which is what we did anyway).

Luckily after 3 hours of feeling powerless our paediatrician called in and he reminded me that the reality was Gabi would have been fully tested anyway. I should have realised this but I had put myself into someone else's hands so that I didn't have to think of everything. I gave them all the information I thought they needed to do the best thing..

Gabi was tested at 2 weeks and a mild/moderate loss in both ears was confirmed. On the way back from the test we had to go straight past Australian Hearing as so dropped in to tell them the news. We all agreed that Gabi wouldn't need aids until she was about a year old but testing would start at 7 months. This was the longest 7-12 months in my life. On one hand I felt I wasn't doing enough but on the other I knew that with a mild/mod loss that there was not a need to aid early. We had the experience of Morgan, aided at 13 months and doing really well.

I think it is important that newborn screening needs to take into account as many different scenarios as possible and empower parents no matter the result of the tests. This is probably a big ask.

I don't think it was harder to bond but it did add extra stress to my life and at times I felt unempowered. Now that we are actively doing something I feel better."

"Well it was almost six years ago when Austin had his ABR. He was 5 days old. I was so scared but wanted it over with. I went through a tough pregnancy. We were having IVF testing and I fell naturally. We had genetic counselling as there was a 50/50 chance we could have another hearing impaired child.

Kristian was 3 and I knew what to expect if I had another profound child. Still I was so scared when I found out that he was a boy as it was mostly the boys with the hearing loss. I hated the feeling when he was born as I felt that I now had to share him. All I wanted to do was protect him from the big bad world. I had arranged his ABR before he was born through Cochlear Clinic and all I had to do was make a phone call when we got home from hospital.

Well that was the Wednesday and it was hot. My phone call was returned and they could fit us in on Friday morning. I felt it was good being soon and started to prepare for all outcomes. The test showed that Austin could hear."

"We are booked in for the ABR on the 25th of October. I can't really bring myself to think about it at the moment. If I do it just brings back that horrible day at the Children's Hospital when Jordi's hearing loss was confirmed and we seemed to fall into a black pit of depression for a while. I know if this baby is deaf it won't be so tragic as we have lots of support and the knowledge that Jordi is doing so well....but still I can't contemplate it and will have to deal with whatever happens when we get to that point."

Melanie "failed" (I hate that word) a rattle test.

We were given a brochure and said she would have a small test by her cot - this was done by a staff member who was being trained, so when she was referred downstairs to the bigger machine, I just thought they had got it wrong.

The first ABR was done by the senior audiologist on the brand new machine and it was the first time they had used it. So when they told us our daughter had a severe/ profound hearing loss we told them to do the test again – same result.

We were referred to the Children’s Hospital paediatric Deafness specialist who spent 2 hours with us. She told us about the Colorado model for newborn screening and explained about the differences between auditory-verbal and signing. When I look back on this first meeting, it was all a complete blur. I was trying very hard to get my head around all the different tests and the anatomy of the ear. We were given the ’Choices’ book but I felt sick every time I picked it up. I was also coping with travelling to the hospital 3 times a day to deliver breast milk, getting over the trauma of Melanie's heart surgery and worrying myself sick about her weight. We also had our 3 year old son to worry about (as it worked out he coped incredibly well) and had moved house 5 days before Melanie was born.

At 10 weeks, we had her first moulds done at Australian Hearing Parramatta. They were the smallest they had ever done and she has been having them done on average every 3-5 weeks. Australian Hearing treated us like royalty and admitted that they were still gearing up for handling babies like Melanie. This was evident when they didn't have a small enough plug to go in her ear to do the tympanogram. Babies do take more time. We have been there sometimes 2 1/2 hours at a time.

We were told by many professionals that we were extremely lucky that Melanie's hearing loss was picked up so early (we weren't feeling that lucky), and were under a lot of pressure to take advantage of that luck and felt each week of "non action" that went by was compromising Melanie's eventual ability to communicate. So we soldiered on and jumped into an early intervention programme and did cortical evoked testing (with hearing aids on). The jury is still out for us as to whether we will stick with the auditory verbal programme or whether we will start to introduce Melanie to some basic signing.

I can't believe that Melanie will be a year old in 6 weeks. She is doing really well, although still only weighs 4.8 kg. She has coped with 2 heart operations, the 2nd was open heart surgery to fix the large hole in the heart just before Christmas and has had 5 anaesthetics, 3 for heart and 2 for hearing MRI & ECOG.

The ECOG showed that Melanie has hearing in all the frequencies on the right ear with a threshold of 70-80 db (I'm starting  to sound like an expert now!) but the left ear is profound. As Melanie is still so small, we are going to leave the cochlear implant until she is more robust, but the important thing is she is vocalising well with her hearing aids and is reaching most of the fine motor milestones.

Anaesthetics are another issue for parents with newborn babies. The first 3 for Melanie were essential life saving procedures, but the ones for her hearing were a bit harder to agree to. Fortunately they are safer these days, but the important thing we have been told is to always have a paediatric anaesthestist. Hopefully all the hard yards we are doing now will pay off and we can be confident that we have provided Melanie with all the options available.

The hardest thing to cope with is trying to keep the Hearing Aids on a baby. We tried making headbands but then there was too much feedback. With a baby you are constantly taking them off and putting them back on - (feeding/sleeping/feeding/bath etc). I had to laugh at a recent seminar at SCIC about Newborn Screening and it was suggested that you put one hearing aid in at a time while breast feeding. This sounds great in theory, but feeding a newborn baby is hard enough without this added pressure. And pressure it is, to keep the Hearing Aids on as much as possible, to the point where we felt guilty if they weren’t on. I must say it is getting easier as the weeks go by, and her aids are now just part of Melanie’s daily routine.

One thing I did relate to in the ‘Choices’ book was the mention of how parents may grieve for the perfect "normal" baby they were expecting. This was very pertinent for me in those early few weeks. But then one day we basically said well this is what we've been dealt with, so let’s run with the ball and just try not to drop it too many times.

As I look back on the last 10 months I am not sure I would have wanted to be treated any differently. We were told we were coping brilliantly by everyone but they didn't see the buckets of tears at home. It's funny, I coped better earlier on, maybe I was numb, I don't know, but the last few months of all the testing have taken their toll and I could have done with a counsellor. Our early intervention teacher has been wonderful and has helped us emotionally but we also needed someone to help us with the medical jargon which has been very scary.

In closing I would say that although we have had a lot to cope with we have found time to love, appreciate and bond with Melanie. She has such a determined, bright little personality (her doctors call her “bright eyes”) which we’re sure will help her with the challenges ahead.  Brother Jack (3 1/2) has been absolutely wonderful. He is so proud of his little sister and enjoys helping with Melanie’s vocalizing exercises. He can often be heard saying to her “Mum Mum Mum, Argh, Argh, Argh, Ba Ba Ba in the other room while I am cooking dinner. He also carefully brings me her hearing aids if they fall out, which is a great help!

Thank you to everyone who has made this discussion group possible and for the hard work that goes on behind the scenes to keep it going. We have only been online for a couple of months and it has really helped us.

Regards Annette & Colin

(2003)

Andrew's Story

My sister has a profound hearing loss, she was the first hearing impaired audiologist to work for Australian Hearing. My other sister has a profound hearing loss, she works with her husband as the business manager, as they have started their own family business. My brother has a moderate/severe hearing loss he is a bus driver. My niece has a moderate/severe hearing loss, she has completed her degree in biology. My other niece has a moderate loss, and is loving infants school. My father has a profound hearing loss, and was very high up in the taxation department before he retired. Two other nieces have normal hearing. My mother, and both brother-in -laws have normal hearing.

My son, Peter, is in Year 6, with a moderate hearing loss. My daughter, Rebecca, is in Year 4, with a moderate hearing loss. Leanne, my wife, has normal hearing. I am the Technical manager of Printacall, with a severe/profound hearing loss.

My wife and I grieve over our children's hearing loss, and mine, as the family history is that our hearing will continue to degenerate. We have suffered the pain and agony of finding our that first Peter, and then nearly two years later, Rebecca, had to face the future with impaired hearing.

Yet each one of the nine people with hearing impairment I have listed above, myself and my children included, get on with life to it's fullest. We don't continually focus on how terrible life is because of our loss of hearing. We get out there and enjoy ourselves, and we make a future for our children and ourselves.

Yes, times are incredibly tough sometimes, and I occasionally do get really down about my own hearing, but the real fear is for our children. Yet as I look back at my extended family, I really don't need to worry, as we have all made it to make our own lives a success.

The one place we have found extra comfort and support has been our church, where our children are accepted as normal, without preconceptions. This was also my experience, as a child.

Also, as I look back on my childhood, I see the areas that caused me the greatest concern, are no longer an issue for my children. Regular itinerant teacher support, hearing aids that are behind the ear (rather than the out-of the ear that I had), teachers who are more aware, FMs all these make the future for our children even better than when I and my siblings grew up.

As parents, the challenge is not to worry, and to treat our children as normal, while giving them the extra care required by them as individuals.

We try to regularly have "dates" with our children, where we go out to do something that that child wants to do, (bowling, putt putt golf, McDonald's, bike riding etc.) and I recommend this for all parents/children, to make sure we don't lose touch with each other.

Having said all this, there are still times when Leanne and I feel quite down. Usually after a hearing test when the issues are once again thrust in our face. That's when we have to remember that our children will not only survive, but excel, despite the obstacles, and we will be there support them.

Have a great day, as you look forward to your children's future and see his/her potential overcome the obstacles to achieve the impossible.

Andrew

Blake's story

Last September in 2001, we went back for three consecutive visits to Australian Hearing, our son Blake was just three years old and unfortunately he wouldn't cooperate with the hearing tests, he didn't understand what he was suppose to do, and was too old for the puppet test. We thought he couldn't possibly have a hearing loss, just that his speech was delayed for some other reason.

After the third test the audiologist finally told me he had a significant hearing loss, a mild moderate loss in one ear and severe to profound in the other. This diagnoses sent me into a state of shock and disbelief, I felt like I had left my body and was watching it all being explained to someone else. I cried for the next 3 days, and nearly all day, but slowly the crying and fear and denial became less. Even a month ago I could not have been typing this without crying and couldn't talk about it to anyone without a lump in my throat. But as someone said to me, the kids, well they don't know anything is different so they just carry on being their happy little selves. That's what we learnt to  focus on, we watch them play and enjoy life and just being happy, they're not sitting around feeling sorry for themselves. But we parents grieve the loss of the hearing child we thought we had, and it takes time to heal and accept and move on.

I feel like I have just emerged after nearly 8 months, I am now feeling positive about Blake's future and have realised I'm a stronger person than I thought I was, because I'm coping, when months ago I thought at times, the challenge was too much to bear.

When I first wrote to this discussion group it was through tears that I typed a few thoughts about what I was going through. The responses I received back were supportive and so encouraging. We gain strength from others experiencing the same things and knowing we are not alone on this steep learning curve.
 

Blake is sooooooo much a normal happy, well adjusted and now nearly 4 years old, who happens to wear a hearing aid in his better hearing ear ( he won't wear the other one as he says it's funny). He has learnt quickly and is catching up to his peers. He has had his Hearing aid for nearly 7 months. It took ages for his aids, tests and moulds to be all worked out and we worried with every passing week( including everything being shut over Xmas) that he was falling further behind. We really felt for Blake, having his ears looked in by different people all the time, and being driven from appointment to appointment. Strange adults in his face all the time. But it has all settled down for now and it doesn't seem to have made any difference to him. He's still the sweet little boy he's always been though he's more confident now that he can hear what's going on in the world. So it all comes together eventually, hang in there.
 

Susan - mother of Blake
(2002)

Gabe's Story

Gabriel was born 9 weeks premmie, and spent 1 month in hospital. Except for a testicular hernia seemed normal in every other way, just tiny, only 3 pounds on discharge.

We first discovered Gabriel's hearing loss when his preschool teacher recommended I take him to a speech therapist at age 3, as she was struggling to understand anything he said. The therapist recommended a hearing test as a matter of course, and I took him along thinking that it was a complete waste of time, because I knew he could hear. (!!)

He failed the first test, and was diagnosed by the ENT we subsequently were referred to, with very bad glue ear. So bad, that one ear drum was being sucked in, a vacuum was being created by the glue ear, which he probably had since 10 months old when he first started getting ear infections (6 in one year). The GP's never picked up the glue ear? I felt terrible to think that he'd been suffering all this time unable to tell me about it, without never having been referred to an ear specialist, you'd think after so many ear infections……

The vacuum in his ear also caused Gabe to wake up screaming every afternoon after his sleep. He would scream and writhe on the floor for sometimes over an hour, but as soon as grommets were inserted the afternoon "tantrums" stopped!

His hearing improved immediately, and in my eagerness to convince myself that he couldn't possibly have a hearing problem, I was sure that the glue ear was all it was. I was not only in denial, but being my first child, came up with all sorts of reasons why he behaved the way he did. "He's a very focused child, that’s why it's hard to get his attention." "Very willful, that’s why he doesn't stop doing something naughty when we shout at him." "He talks "pingu" (babble) because he wants to talk so much but he's not old enough and so he has made up his own language" Any of this sound familiar? I had no one to compare him to, he was 9 weeks prem and all the kids in my mothers group were always ahead of him.

The computer graph test at the ENT showed that Gabe still had a significant loss, this was devastating to hear, but I still convinced myself that there were so may variables that the test could give a "false negative'. So off to Australian Hearing, where he was difficult to diagnose, not having much speech, or developed cognitive skills, to be able to understand to put the ball in the box when he heard the sound. The puppets were getting a little boring for a three-year-old after a while. It took some 6 months to get a consistent result, and both ears were completely different in loss.

Throughout the tests I kept hoping that the previous tests were flawed, and the next one would show he was fine, or had such a small loss that he would just have to sit up the front of the class. So when our Audiologist finally confirmed that the tests were consistent with a Mild Mod Severe loss, I had no idea what that meant. When she mentioned the hearing aids I almost couldn't speak, only enough to say, "will he just have to wear them at school?" when she said "no… all the time" I really couldn't speak. I felt she had slapped me in the face and sent me on my way with no support or any way to deal with it, what do I do? (always have to be able to fix everything)

The grief for my son was sometimes unbearable, he would no longer be just Gabriel, he would be "the deaf kid" "the kid with the hearing aids" I couldn't stand it. I screamed, I cried, and lost control some times at loved one's around me, not realizing sometimes, the cause of it. My family was great, but couldn't really comfort me, I kept hearing words like, "with technology today…" "at least he's got some hearing…" "he's such a handsome boy he will be fine" "so what? Hearing aids are just like glasses" "children are so much better at handling different people at school these days". None of which made me feel any better at all.

Luckily for me a close friend had an acquaintance who had a little boy Gabe's age, who was profoundly deaf and was attending the Shepherd Centre. She insisted that we come over to meet her and her son the next day after we made contact, we met and she became my mentor. She answered many of my questions, at any time of day or night, and finally was a great comfort to me. When I met her son, I was astounded at how good his speech was, he was so much more advanced than Gabe. there seemed to be a year difference between them, but they were the same age. And he had no hearing at all!

We then joined the Chatswood Shepherd Centre and early intervention service for children under school age. Just because this wonderful family had recommended it, and because the great results in her son were self-evident. When the Shepherd Centre teachers and Social Worker interviewed us, they were so lovely and the place had such a relaxed "normal" atmosphere about it, not like a clinic or anything, we didn't look at any other service.

Gabe struggled at the Shepherd Centre to start with, he wouldn't play with the other children in playgroup (we went every week, short of illness, I saw it as an extra lesson, which it was, and a great chance for Gabe to meet other kids with hearing aids). He hated the women there, unfortunately, except his new teacher, who he adored straight away. She was very good at appealing to his nature, and had a great sense of humour. Gabe is a very bright boy and keen to learn, so soon he would sit happily in his chair, and actually looked forward to his lessons.

After about 8 months, he really started to become more sociable. He stopped growling (literally) at all the woman at the Centre, and started playing with other children, at the centre and at preschool. He also started joining in at story time, and actually attempted to sing! And he began to join in with following movements, which up until then, he never had.

By the time we graduated end of 2002, Gabe had blossomed into a lovely, loving, verrrry social little boy. The teachers were using him as an example of what was possible in a child with his loss. We were obviously (and still are) very proud of him. His speech acceleration was quite extraordinary, and noted by many others, since his aids were fitted. The changes in his temperament and behavior were also amazing.

Now in 2002 Gabe is attending a Rudolf Steiner School. People often ask me why we chose this school? Well number 1, the philosophy of the school sits well with my husband and I, and number 2, it has to be one of the most nurturing and calming environment's for a child with hearing aids, where every sound has to be deciphered and sorted out from the others. Also he attended a Steiner preschool, so hoped the transition would be fairly smooth. Gabriel is their first hearing-impaired pupil, and although understandably cautious initially, not knowing how he would fit in, the teachers he has in Kindergarten, are now very impressed with how he going, both socially and in the class room. There is absolutely no issue about his aids or the FM, they took it all in their stride, read every little brochure I gave them, (and memorised some parts of it). The other children treat him as just one of their own. The Shepherd Centre has offered us their itinerant services for the next year, as he hasn't needed it this year at all. But feel he will be one of these kids who probably won't need it in the long term, we will see.

Gabe is a sometimes strange and wonderful boy, obsessive about certain things, like cleanliness, timeliness, justice and anything to do with space travel. He uses up at least 20 pages of paper a day in drawings, and draws like an eight-year-old. He knows all the names of the planets, and their moons, and what supernova's are, and black holes, (and so do we, now.) He is determined to be an Astronaut. Absolutely obsessive! He asks about 1,000.000 baffling questions a day! "Where does hair come from mum?" (At breakfast) "How did the big bang happen mum?" (In the car to school!) And without bias (yeah sure) He is one of the most popular boys at his school, with both boys and girls, and has the most amazing imagination for making up games. He is terribly bossy, and easily hurt. As far as his aids go they are "just like daddy's glasses" and wouldn't be without them. They are also not going to stop him doing anything, from soccer to snow skiing, to travelling in a rocket to the moon.

I do still wish he didn't have a hearing loss. I feel it most when we meet new people for the first time, and I so want them not to judge him, or ask him about his aids (it would be nice if they just treated him normally) . But if his loss has made him who he is today, I wouldn't change a thing. He is an extraordinary child, and will be an extraordinary Man.

And of course we love him so very much (obsessively!)

Leonie & Fred
(2002)

Mitchell was born naturally after a fairly uneventful pregnancy. He weighed in at 9lbs, so after having had two girls I was sure that now we also had a son I wasn't going to do that again! He had a problem with his feet that was noticeable immediately on his birth. In fact, the nurses kept saying "look at his feet" so much I was worried that maybe he didn't have any. When I finally saw him I was relieved to see he had five toes on each foot and I honestly couldn't see what the fuss was about. It turns out he had talipes or "club feet". I should have been devastated but I honestly was on such a high after his birth I couldn't cry about it. I was very worried and it broke my heart when the specialist came and put both of his legs in plaster from his toes to the top of his thigh. My nine-pound baby now felt like he weighed the equivalent of a 12 month old. We consoled ourselves with the thought that at least it was treatable and by the time he started school no-one would be any the wiser.

He was in plaster for four weeks and after that he had to wear special boots that were joined at the heels by a metal bar. He only took these off for a bath. He coped beautifully with this and learned to do all the normal things like roll over, crawl and even walk around furniture with his little feet joined at the heels. It was just what he was used to do.

When he was 7 months old I took him to our baby clinic for a hearing test. This was to be the beginning of a whole new journey for us. He didn't pass and we put it down to him having a cold so went back at 9 months. Still he didn't respond. We went on a waiting list for a proper hearing test. The wait was going to be 13 weeks. Something inside me knew I couldn't afford to wait that long and I knew there had to be somewhere else that could do the test. I didn't care about the cost - I just wanted that test. We were told about the Lions Hearing Centre and immediately rang them. They had us in for a test in 3 days. His test showed that he wasn't hearing much but the audiologist assured me that grommets would fix that and it was quite common.

We were referred to a specialist, who we felt was very uninterested in our son's case. He booked him in for grommets. I clearly remember this doctor making us feel like we were keeping him from something else and was rushing us through our appointment. We had a lot to learn about doctors! The grommet operation went fine and the doctor saw us afterwards and told us to take Mitchell home and we would see a difference that night. Well we tried to get a response from him. We banged pots and pans, we called his name and made lots of noise but we couldn't see any difference. He did, however, look up whenever we walked into the room. We still clung to the hope that maybe he could hear. We realized later that he looked up because having wooden floors in our house; he could feel us walk into the room.

At out appointment with the specialist the following week, he wouldn't believe there was no difference. He sent us across the hall were they could test to 60 db. Of course, there was no response from Mitchell. All of a sudden this doctor sat up and took notice of us. He sent us back to the Lions the next day for a full hearing test. I knew well before they told me that he heard very little.

I don't think any parent will ever forget the moment they are told that their child has a hearing loss. I just sat there and held him tight. I wanted to protect him, to not let him go. My world was crumbling around me. How does he know how much I love him? He has never heard me say, "I love you". It is strange how many mums I have spoken to since that day that say that was the first thing that they thought about.

Mitchell's loss at that stage was moderate to severe. So many things were going through my mind. I should have been asking so many questions but the one thing that was burning through my mind was would we all have to learn sign language. We would do anything we could to help him. I had never had anything to do with deaf people and about the only thing I knew was that they used sign language. We had so much to learn. By the time Mitchell was 11 months of age he had his first set of hearing aids. He was still wearing the special boots, so he has never in his whole life been without some sort of appliance to help him. We looked at the early intervention options that were available to us and enrolled him at WAIDE. Interestingly, at that time every professional that we talked to assumed that we wanted him in an oral program. We weren't even aware of the signing programs. He went to early intervention playgroup twice a week and had a one-on-one lesson with a teacher of the deaf each time. His audiograms seemed to fluctuate constantly but it was becoming obvious that slowly his hearing loss was getting worse. He could make some sounds but still had no words. We used a lot of gestures to communicate but he was a very frustrated little boy.

He was also very active and into everything. He had many accidents where he would fall or run into things and seemed to be constantly getting stitches, mainly on his head. I don't think that he was clumsy, just always on the go and didn't get one thing finished before he was off onto something else. And he loved to explore everything. I needed to always be within an arms distance of him to try and keep him out of trouble. When his hearing loss eventually dropped to profound we seriously considered both signing and the cochlear implant. We had already done a lot of research and talked to everybody we could, read every book and watched every TV show. I still think we got the best information from parents that had been there before us.

We decided to go for the implant and in March 1997 Mitchell was implanted with the Nucleus 22. He was in hospital 3 days and had a huge bandage on his head when he came out of surgery. I was glad that I had seen photos of another child after her operation so I had an idea of what to expect. He came home with the bandage still on his head, the stitches were dissolvable. Six weeks later the day we had been waiting for and worrying about came. Brian Fisher switched him on. I think Mitchell found the whole thing quite boring on the first day but he did respond to sound so we knew he could hear something. The next day was a lot more exciting when Brian turned up the volume and got him to yell stop when it got too loud. Mitchell found this game fun and was smiling from ear to ear when yelling "-toh '. We had regular mapping from then on and Mitchell never looked back. His speech took off quickly and we were constantly amazed by what he could hear.

About 3 months after his hook up, he was having his rice bubbles for breakfast when he stopped eating and had this amazed look on his face. He could hear them snap, crackle and pop! This was more than we ever dared hope for and I was on the phone spreading the news while refilling his bowl over and over so he could listen. He was like a little sponge soaking up all the sounds and we worked with him everyday - repeating things over and over. Getting a drink out of the fridge took forever while we went through "what do you want? Oh you want a drink Where is the drink? Is it in the cupboard? No, it's not in the cupboard. Is it on the bench? No it's not on the bench. Is it in the Fridge? Yes yes it is in the fridge. Open the door. Open. Open. Open. Is this the drink? No, this isn't the drink. This is the butter. Is this the drink? No, this isn't the drink. This is the jam. Is this the drink? Yes, this is the drink. What shall we put it in?" etc etc etc. I did have to be careful and make sure not to push it too far or he would get frustrated. (and very thirsty!) We also tried to encourage him to be independent, I guess. If we were at McDonald's and he wanted an ice cream, I would give him the 30c and follow him to the counter but he would ask for it himself. I was on hand to interpret if the cashier didn't understand but he was very proud of himself when he bought his own ice cream. I did homework with him every night and everything we did had some sort of speech lesson or listening experience. After a while the phrase "did you hear that? I heard that" became a natural part of our conversations and I even heard myself saying things like this to other children and sometimes other adults.

Looking back now I can see how all that paid off. Mitchell is fully integrated in our local school. He plays footy, does martial arts, rides his bike and plays with his friends just like we always wanted him to. Of course, there have been many hurdles along the way but if you just take things one day at a time things will work out. We have always tried not to treat him any differently just because of his hearing loss. It is part of what makes him who he is. He knows that he is deaf and if he asks us questions about it we answer them as well as we can but most of the time it is not a big issue. In some ways