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There is something thrilling about getting up at one in the morning to do a 3am interview with the US.

On 13 October 2010, I did an interview with the lovely Deb Bailey of Power Women Magazine who is based in Arkansas.

We spoke about Breaking the Sound Barriers: 9 Deaf Success Stories.

Click here to listen to the interview.

Breaking the Sound Barriers was recently reviewed by assistant editor Alice Lagnado in the July 2010 edition of One in Seven magazine published by RNID.

RNID, or Royal National Institute for the Deaf, is a charitable organisation working on behalf of the 9 million deaf and hard of hearing people in the UK.  This is what Alice wrote:

Breaking the Sound Barriers: Nine Deaf Success Stories is a fascinating book consisting of nine in-depth interviews with parents of deaf children and adults who are deaf or hard of hearing.  Particularly striking are the chapters on film director Sofya Gollan and sportsman and business manager, David Brady.  Other chapters focus on how parents had to fight with absolute determination in order to access education for their deaf children.”

*****************************************************************

Felicity Bleckly, Deafness Editor of BellaOnline (the second largest website on the internet) recently published a fantastic review of Breaking the Sound Barriers at www.bellaonline.com This is what Felicity wrote:

Your child is deaf
“Your child is deaf” – words parents of a newborn or toddler definitely never expect to hear. Their reaction, whether they themselves are Deaf or hearing, is usually one of shock, anger, fear, grief and confusion. So many questions. ‘Will my child have a normal life?’ ‘How will I communication with them?’ ‘How will they learn to communicate, speak and read?’ ‘Will hearing aids help them?’ ‘What about a Cochlear Implant?’ ‘Should they learn sign language?’ ‘What school will they go to?’ ‘Will they get a job?’ ‘Will they get married?’

After the initial shock, the most common reaction is where do I turn? Who can help me? Who knows what is best for my child? Since deafness is outside most people’s experience parents confronted by their child’s deafness feel so alone and confused about what to do, let alone the options available.

Who better to help answer these questions than those who have already found the answers. “Breaking the Sound Barriers”* is a book containing nine inspirational Deaf Success stories put together by Julie Postance of Deaf Children Australia. Julie compiled this book to fill the gaps; to tell the stories of deaf children and their parents, the struggles they encountered and how they overcame them. While the stories are Australian the experiences are universal the world over.

Even in the 21st century deafness is still misunderstood. A common theme throughout all the stories is the incredible, seemingly impenetrable, barriers encountered by parents trying to get the best support. Discrimination abounds and many of the parents had to fight hard to get equal rights for their deaf child. Yet these stories show that with the right support, deaf children achieve at levels consistent with their hearing peers.

The book is honest and clearly talks about the struggles, discrimination and difficulties these parents and deaf children encountered throughout their life. In addition, each story contains hints, tips and recommendations (all from personal experience) about the best way to approach situations, educationalists and government to make sure deaf children are not disadvantaged.

From where to get information and help, early childhood communication difficulties, education barriers, through the agonising years of teenage-hood where being different often means being ostracised, through to successful adulthood and careers, these stories show that being deaf is not the end of the world. This book is a value resource for parents of deaf and hard of hearing children giving them hope and inspiration to raise their child to achieve and become self-sufficient adults.

*Postance, Julie 2009; Breaking the Sound Barriers; Published by Deaf Children Australia (deafchildrenaustralia.org.au) Also available on-line from Amazon.com

Please click here to read the full article at www.bellaonline.com

To buy the book at Amazon.com, click here.  To download the ebook version, click here.

Hear For You 1

Olivia Andersen, CEO of Hear for You, an organisation that mentors young deaf people

Olivia Andersen is the founder / Director of Hear For You, a mentoring organisation which assists young deaf people to achieve anything they want in life.  Profoundly deaf herself, Olivia’s motto in life is ‘With the right mindset, anything is possible.  Deafness is a learning opportunity, not a disability.’ Olivia’s achievements include degrees in Design and Business, working for marie claire magazine, backpacking through Europe, Central America and Africa, and winning a Sir Winston Churchill Fellowship.  She lives in Sydney with her husband Thomas who is hearing and their newborn daughter, Camilla.

Julie: Olivia, thank you for agreeing to share your story for the Breaking the Sound Barriers book and blog.

Olivia: No problem, Julie, it’s an absolute pleasure!

Julie:  In order for our readers to understand a little bit of background about you, we should start at the very beginning.  Were you born profoundly deaf?

Olivia: I was diagnosed as profoundly deaf at eight months old. My parents had an ABO blood incompatibility and I became jaundiced after I was born, which required a blood exchange when I was three days old.  It was always assumed that the jaundice caused my deafness, although recent tests, despite being inconclusive, suggest that it could be genetic.

Julie:  Your parents were both hearing so what did they do?

Specialist doctors told my parents that I’d never be able to speak or go to a mainstream school. Thankfully Mum and Dad had the attitude that anything could be achieved with the right support. Immediately they enrolled me at an auditory verbal early intervention program for deaf children.  I also had weekly speech therapy at a hearing centre.

Julie:  You are profoundly deaf, but wear hearing aids.  Do they help you hear everything?

Olivia: People often ask how and what it is I actually hear. That’s not easy to say because I don’t know what ‘normal’ hearing is.  I do know however that I find it difficult to follow conversations in a big group. I can’t use the telephone normally. It is tough following television and movies without subtitles. I can’t hear the words to songs or naturally appreciate music. I would find it difficult to take part in debates or public discussions.  And without my hearing aids, I hear no sound at all.

Julie: So what’s that been like for you?

Despite all of those things, I have learned to make my deafness a learning opportunity rather than a disability. I have developed ways to compensate by challenging myself to do things in creative and different ways.  The skills I have developed as a deaf person have taught me to turn almost any negative into a positive.  In many ways, my hearing loss has made me a far stronger person.

Julie: Did you attend mainstream schools growing up?

Olivia: I spent my prep and junior school years at a private girls school I received first-rate support from an auditory verbal centre as well as the staff who taught me.  But their senior school was highly competitive and with 240 girls in each year, my parents felt it would not be suitable for me.  So I moved to a smaller Catholic Girls school, where I had the support of an itinerant teacher of the deaf.

Julie: How did you find it being the only deaf student there?

Olivia: I was very happy. I played lots of team sports which helped me make friends.   I also did lots of extra-curricular activities including four day adventure camps which helped me gain confidence, use my initiative, face hurdles and accept responsibility for things in my life.

Julie:  Did you ever experience any bullying at school?

I had a couple of experiences during my senior school years – more bitchiness rather than physical bullying.

Julie: How did you handle it?

The benefit of life experience is a wonderful thing.  I realise now that I should never have let these things upset me. I should have challenged the perpetrators and realised that bullying and bitchiness are merely signs of cowardice.  I realise now that the only way to deal with bullies is by questioning, reasoning, standing firm and confronting them without being aggressive.  Difficult to do, I know, when you’re a teenager.  But it’s worth giving it a go!

Julie: Your pronunciation is flawless.  How did you achieve that?

Olivia: The speech therapy helped.  Throughout my school life, I also had speech and drama lessons, which helped improve the tone and animation in my voice. I also made an effort to write using correct grammar so that I could learn to enjoy expressing myself through the written word.  I tried to talk to as many people as possible, to read newspapers and to watch the daily news, which fortunately by then had subtitles. I knew that the more information I could acquire, the more confidence I would gain in forming and expressing my own opinions which could only improve my school work and many other areas of my life.

Julie: What was university like for you?

Olivia: In 1999 I began studying Business at the Australian Catholic University, but suffered terribly from a lack of specialist support.  When my mother rang to express concern about the fact that I didn’t even have a notetaker, she was told rather dismissively, ‘We prefer our students to be autonomous.’

Without support, it became increasingly difficult and halfway through the year, I transferred to the University of New South Wales to study my Bachelor of Design.  Again, I was faced with the same predicament.  But this time, I wasn’t going to let them win that easily. Four years of perseverance later I went on to get my degree.  In hindsight, now that I know that universities receive special government grants to support disabled students, I should have been stronger in pressing for a notetaker. In fact, I should have threatened to take the issue to the Equal Opportunities Tribunal. If only I’d known then what I know now…

Julie: You worked for marie claire magazine.  Do you know how many girls would die to get a job like that?

Olivia: Yes, I was very fortunate!  My job was to design layouts for their Lifestyle, Travel and Fashion Insiders, set up their monthly layout board, and participate in the decision making of the magazine’s structure.  It certainly set me up really well in terms of my career.

Julie: What would your advice be to deaf children and teenagers?

Oliva: I would say to them, learn to be bold in your actions and ask for cooperation.  You may be surprised at how others respond.  Having a sense of humour definitely helps. If you can lighten up, laugh at yourself and your mistakes, and see the funny side of your deafness without belittling yourself, you will become someone others enjoy being around.

Julie: You went to live in London for a while, didn’t you?

Olivia: Yes, I have always felt it important to take myself out of my square.  So at 23, I left home to explore the world, live independently and let my spirit roam free.   But I received a nasty shock when I first moved to London and began applying for jobs. As soon as I mentioned that I was deaf, my applications resulted in no further response.  The problem was, I couldn’t use the phone to make appointments.

Julie: So what did you do?

Olivia: It didn’t take long to grasp that if I wanted a job, I was going to have to challenge people’s preconceptions as to what deafness was. So I began the process of travelling to job agencies on the London underground, presenting myself in person so that people could judge me face to face.

Julie: Did it work?

Olivia: Yes, it certainly did! My luck changed and I got a great job offer.  During my three-year stint in London, I worked as a features contributor, photographer and designer for the lifestyle and fitness magazine, Shape Up.  My role involved coming up with a story idea, putting in a proposal to the editor, then carrying out all the artwork and photo shoots in order to bring it to press.  Some of my assignments took me to New York, Norway and all over England.  It was one of the most exhilarating periods of my career.

Julie: You grew up in a hearing family and went to a hearing school.  What was that like for you?

Olivia: Growing up, I always felt that I was different. I did not belong to the Deaf community because I did not know sign language.  I was a deaf person living in the hearing world relying on spoken language and hearing aids.  I always felt in between two worlds because I was neither ‘hearing’ nor ‘signing’.

Because of this I wanted to further explore and develop my own identity.  One way of doing this, I believed, was to travel alone with international strangers who spoke English as their second language, and would therefore feel a little different themselves in foreign environments.  So after travelling through Europe and Central America with friends from London, I decided to backpack through Africa.  In Nairobi I joined a group of international backpackers and embarked on a six-week truck camping trip through Kenya, Tanzania, Zanzibar, Malawi, Zambia and Zimbabwe.

Julie:   Was that challenging?

Olivia: It was one of the most challenging periods of my life.  At times, I found it really difficult trying to get my message across, but I was always quietly assertive in asking the others for their consideration in things.  For example, when we sat around the campfire chatting, I asked the group to pass a torch around to each person who spoke to enable me to lipread.  The trip helped develop my strength of character and to be my own person. I must confess to switching my hearing aids off the night I heard a group of hyenas howling outside the tent!

Julie: Can you tell us some of the other things you have done like this in order to assist you in work and social situations?

In work and social situations I always try, whenever necessary, to choose a seating position with less background noise and the best possible lighting. In my mind, assertiveness is being neither aggressive nor submissive.  I may not always get what I want but I always feel a sense of satisfaction in letting the other person know how I am feeling. I do not expect hearing people to accommodate my needs but I feel it is my responsibility to show them that I am capable of doing anything requested of me and to dispel any other concerns they have about my hearing loss.

Julie:  Have you ever experienced any difficulties in work situations?

At times, I have experienced being dismissed by people who, because of my hearing loss, tend to question my intelligence, abilities and skills. Despite that, I will never allow others to get me down. Instead, I have always said to myself, ‘I am running my own race.  I will not compete, nor will I compare myself with others.’ Accepting who I am has helped me move forward and be very happy and successful in my life.

Julie:  Do you think there are advantages in being deaf?

Olivia: As a deaf person, I am very aware of body language and am able to ‘read’ people which enables me to decide whether or not it is worthwhile giving energy to the person. With this skill, I have learnt how to choose friends who have empathy and who respect me as a person.  I have found that deaf people tend to make friends with genuine, special and worthwhile people. Somehow a deaf person often attracts the right people. As friendships are so important, this can go a long way towards living a happy life.

This was certainly the case with meeting Thomas, a very special man, who is now my husband. He has since told me that he was initially interested in me because of my strength of character.

Julie:  Your husband Thomas is hearing.  You mentioned that he was very considerate towards your hearing loss.  What do you mean by that?

When I am unable to communicate by email or SMS, Thomas will make a phone call on my behalf. He will also relay telephone conversations so I can communicate with the person on the other end. When he wants to get my attention, he has a form of a ‘cooee’ call that is pitched at the right level for me to hear and respond. While I’m very fortunate to have his support, I still highly value my independence.  I feel empowered when I challenge and assert myself.

What was your motivation in setting up Hear for You?

One of my greatest sources of inspiration came several years ago from an encounter I had with a mother of a deaf baby in a waiting room at a hearing centre in Sydney.  The mother had just learned that her baby’s hearing was impaired.  Just as I was walking out of a hearing test appointment, she must have noticed my hearing aids because she approached me with tears in her eyes.

She said, ‘Please help me.  My baby is deaf.  I need to know, will she lead a normal life?’  It was clear that she’d never spoken to anyone with a hearing loss before and desperately needed reassurance that things would be okay.  All I could say was:  ‘Yes.  It will be okay.  You will pull through just like my mother and I did.’  It seemed to have a profound effect because she seemed much calmer and more relieved. The incident always remained deeply ingrained in me. I would have liked to have helped her more.

Julie: Can you tell us more about Hear For You?

Sure! Hear For You is a not for profit mentoring organisation for deaf teenagers.  My research revealed that when a child is diagnosed as deaf, the primary concerns of most parents are: will my child hold their own in mainstream society? Will my child have a normal career? Will my child be happy in life and have normal relationships?  Experiences internationally show that involvement with a deaf adult mentor can alleviate these concerns and enable parents to work more effectively with their child, which has long-term benefits for the child.

A deaf mentor, who has experienced life’s ups and downs, can instil in a young deaf person the desire to believe – ‘If he or she can, so can I!’  A hearing person, even with the best of intentions, cannot provide such an example.

Julie: What sort of things do you do at Hear For You?

Olivia: We provide e-mentoring (online communication) and workshops aimed at helping young deaf people to engage fully in life and realise their potential.  Some of the workshops’ topics include identity, social and conversational skills, assertiveness, leadership, positive thinking and future prospects. The workshops deal with ways to break down the barriers of people’s preconceptions about deafness, how to handle group discussions and to learn confidence in expressing opinions.  Feelings of not belonging in the community and lack of self-worth are discussed, along with tactics to overcome these. We also do role-playing scenarios to help deal with difficult situations.  The workshops encourage better vocational aspirations and have a positive effect on the adolescents’ motivation and confidence and thus help equip them with the skills to lead happy and fulfilled social and working lives.

Julie:  What has been the feedback so far?  Have you had much positive feedback from teenagers?

In fact, one of the teenagers even went back to school and approached his sports master about becoming a team captain! It confirmed our view that there is a real need for something like this for young deaf people.

Also, two past “graduates” of our program, Adrian and Daniel (both in their final year of school), say they felt inspired after attending our “Leadership Enrichment” workshop to put themselves forward as 2010 prefects at their mainstream schools.  We are proud to say they were both successful! Adrian has shared his story in the hope of encouraging other young deaf people to have a goal – his new motto now is – “nothing is impossible!”

Julie: Olivia, thank you so much for being so generous with your time today.  How do deaf and hard of hearing teenagers and their families get more information on Hear For You?

Olivia:  Our website is www.hearforyou.com.au

If you would like to read more about Olivia’s story, click here to buy a copy of the book Breaking the Sound Barriers on Amazon.com or for the ebook version, click here

When Estelle was diagnosed as severely deaf when she was 18 months old, Estelle’s mum, Joanna was devastated. 

“All I wanted was to speak to another parent of a deaf child who could tell me that Estelle would be okay,” she says.  “Instead I was given a ‘showbag’ full of dry medical brochures and send home to deal with my child’s hearing loss.  I sat on my bed and cried for days.”

Joanna’s story isn’t an isolated one.  More than 90% of deaf children are born to hearing families who have little or no experience of deafness.  For many of these parents, their child is often the first deaf person they have ever met.  No wonder so many report feeling isolated and confused following the diagnosis. 

Parents of deaf children can feel overwhelmed by the choices that have to be made as to how to best support their child.  Without being fully informed of all the options, they may begin to feel pressure to adopt one communication approach over another.  As a result, they may end up making rash decisions. 

The support of parents who have been through these experiences can often be an invaluable source of comfort and inspiration.  Family to family support is one of the best ways parents can gather knowledge and skills they need to navigate the world of deafness. 

Joanna’s desperate need to speak to another parent who had gone through a similar experience motivated her to set up a parent support group which has since become one of the largest parents of deaf children support networks in the country.  She has since shared her story in Breaking the Sound Barriers: 9 Deaf Success Stories so that other families of newly diagnosed deaf children can know that they are not alone. 

If you are a parent of a newly diagnosed deaf child, then one of the best things you could do for yourself is find a parent support group in your area.  These groups are a terrific way of  exchanging ideas and obtaining encouragement to face some of the challenges of raising your deaf child.  And if you have been on the journey for some time now, then why not offer your own experiences and guidance to someone who is new in the world of hearing loss?   You could significantly reduce their stress levels and even change their life…

Read more about the benefit of parent support groups in Breaking the Sound Barriers: 9 Deaf Success Stories.   You can buy the book on this website or click here to buy it Amazon.

Your deaf child may be oral, signing, or bilingual.  These tips will improve the communication with your child, regardless of whether they speak, sign or do both. 

  • Get your child’s attention before you speak to them, by a gentle touch on the arm
  • Establish eye contact.
  • Face your child directly so they can lip-read what you are saying. Do not speak with your back to your child or from a distance. 
  • If your child can hear better with one ear, stand on the ‘better’ side.
  • Speak as clearly as possible in a natural way and at a moderate pace. Don’t over exaggerate mouth movements as this will make lip-reading more difficult.
  • Don’t shout!
  • Make sure your mouth is visible. If your mouth is covered, your child will be unable to lipread what you are saying.
  • Reduce background noise.
  • Use short and grammatically simple sentences, give instructions one step at a time, avoid abrupt topic changes, and explain when you are changing the topic.
  • If your child does not understand what you said, rephrase it using simple words or signs. 
  • Use lots of gestures, visual cues, facial expressions and body language to support what you have said
  • If necessary, write the message down in simple language.
  • Check comprehension by asking for feedback.
  • Recognise that your child can hear and understand less when they are tired or ill.
  • Be patient, positive and relaxed when speaking to your child. 

Joanna Fricot is mother to ten year old Estelle, who is severely deaf. Estelle uses mainly oral language to communicate, attends a mainstream school with her hearing brothers, and plans to run her own hairdressing salon one day.  Joanna is the creator of the Parents of the South East Region support group in Melbourne, aimed at parents of deaf and hard of hearing children.  She is also the brainchild of the support booklet, Where do we go from hear? – a collection of stories written by parents of deaf children.  This is her story…

No one can prepare you for when you first hear the news your child is deaf.  I remember the moment like it was yesterday.  I can still see the audiologist – her cherry red shirt and trendy thick black-framed glasses, looming over us, test results in hand. 

‘Your daughter is severely deaf,’ she said coldly.

I felt a slab of concrete cement my heart.

‘My daughter is deaf…,’ I repeated slowly. 

‘Yes, and it is permanent.’

Tears rolled down my husband Albert’s cheeks while I held our 22-month-old daughter tightly on my lap. ‘She has never heard us say “I love you”,’ I whispered.  We sat in stunned silence.  Then my tears joined Albert’s.  

In the haze that was the next few hours, the trendy lady spoke coolly about ‘next steps’ but I couldn’t take in a word.  Inside I raged, desperately wanting her to go away so that I could pretend this wasn’t happening to our family.  I hated how she’d stripped away any hope for my daughter’s future – such was my ignorance of deafness at that time – and replaced it with a show bag full of medical mumbo-jumbo and a new child I wasn’t sure I could raise. 

I’d always known that something was different about Estelle. Having often been unwell with infections, I’d been continually anxious about the baby’s health.  I hadn’t enjoyed the pregnancy as I had my first two.  When Estelle was born by caesarean on 30 July 1999, I’d felt strange, unsure.

‘I’m worried that something’s wrong with Estelle,’ I had told the nurse, but she’d assured me that I was suffering from the ‘third day blues’ and had given me a sleeping tablet.  The niggling feeling in my gut remained, however, and simply wouldn’t let me rest. 

The day I brought Estelle home from the hospital, I whispered into her tiny ears, ‘Welcome to your new home.  I love you.’  Little did I know she couldn’t hear me.  Over the next few months, I sang her songs, but she didn’t respond to them in the same way her two older brothers had.  Nor did she react to sounds and games, like when we played peek-a-boo or hide-n-seek. Instead, she became frightened and would burst into tears when you jumped out from behind the door. 

I found it difficult to connect with her in the way I had with the boys.  It felt like there was an invisible glass between us.  I hated this feeling.  I was stricken with guilt and desperate for answers.  When I mentioned this to the doctors, they labelled it ‘sleep deprivation’.  Yet two visits to sleep clinics did nothing to resolve the problem.  She had passed hearing tests conducted by my health nurse, our local GP and an ENT specialist so why was I so worried? they said.  I knew though that she was only passing the tests because she was responding to the movements she was seeing.  My family began to question my health and all of a sudden, it became my issue, not Estelle’s.

With no speech at 14 months, not even ‘mama’ or ‘dada’, she was developing far slower than her peers.  She became frustrated when other kids came to visit and she began to smack her brothers when they talked to her. 

Tired of receiving no reaction from doctors, I decided to take on the role of doctor myself.  Placing ear plugs in my ears one day, all of a sudden, the source of all Estelle’s angry frustration became blazingly obvious.  I began to get down on the ground at her level to play.  I stopped calling out her name from a distance, made sure that she could always see my face and lips, used lots of facial expressions and played the Wiggles video really loud.  And then it was like magic.  I had a much happier child.  The invisible glass between us began to collapse. My suspicions about her deafness were confirmed.

After, I begged doctors to test her hearing, but my requests fell flat.  Instead, we were referred to a paediatrician who diagnosed her with a behavioural problem. I steadfastly refused to accept this. 

Finally, at the age of 22 months, after carting her from one specialist to another, we found one who permitted Estelle to be tested by an audiologist.  And then there it was.  At last, she was confirmed deaf. 

As soon as she was diagnosed, the shock and relief were huge.  Shock, because I knew almost nothing about deafness (there was no family history and I didn’t know anyone who was deaf) and I prayed that it was only grommets.  And relief, because they had finally confirmed what I had suspected since she was six months old, despite no one believing me.  With my severely limited knowledge of deafness, I assumed that treatment would fix whatever Estelle had.  How naïve my thinking was …

For the first few weeks, the grief was immense.  My deceased grandmother had always told me ‘Jo, cry hard when you receive bad news because this is how you will make way for tears of joy.’  So that is what I did.  I cried and cried on our bed for days and nights, repeatedly asking myself what I’d done wrong for this to happen to us. Most of all, I cried from the guilt, always my greatest hurdle.  Guilt that for so many months, my baby hadn’t heard my (nor any one else’s) voices; that she’d been submerged in soundless loneliness. 

With each cry, I became tougher and the grief gradually transformed to relief and determination. It was time, I decided, to make up for all the lost time with my daughter.  It was time this invisible glass came down, once and for all. Now that we’d identified the issue, I had a ton of work to do, not the least of which was changing my parenting methods and learning new skills. 

 The ‘show bag’ full of detailed brochures on hearing aids, hearing equipment and early intervention centres presented to me at Estelle’s diagnosis did nothing to alleviate my anxiety.  In fact, its sombre medical contents only served to bewilder me further until I was reduced to a blubbering wreck. 

All I wanted to do was to speak to another mum who had experience in raising a deaf child.  I craved to hear her tell me with confidence, that everything would be okay. But I could find no parenting booklets nor contact details of other parents of deaf children and there was no one in my family or community who was deaf. 

I called one of the early intervention centres begging them to put me in touch with a mother of a deaf child of primary school age.  Several weeks later, I was given the name and number of a mother in Brighton whom I contacted immediately. 

Speaking to her was the tonic I needed.  She gave me hope and made me see that all the dreams she’d initially had for her daughter were still achievable, regardless of her hearing loss. I still regard her as my angel of hope.  I could see the light after that which created the first step to regaining my confidence in parenting. 

Since that call, I have been able to accept Estelle’s disability. I focus instead on finding the gifts in having a child with hearing loss. And indeed, in searching for those gifts, I have found them. I was able to begin working on our bond which has since become as strong as even the most tightly-knit mother-daughter relationship.  Every day, I remind myself that all I want for my daughter is for her to meet her highest destiny.  All we have is this lifetime to make that all possible.

So desperate were we to make up for lost time that we did whatever it took to help Estelle communicate.  On her second birthday she was fitted with hearing aids.  While we sang ‘Happy Birthday’ to her, her big brown eyes grew wide in amazement at the first sounds of our voices.  Then, in a tiny voice, she sang back, ‘I bid day’!

She is a candidate for a cochlear implant, but there’s a chance she could lose what little hearing she has.  So we have left the decision in her hands for when she’s older.  Right now, she’s doing really well with her hearing aids. 

At any rate, she could make some sounds so, with speech therapy and home practice, we worked on those so that they gradually became words.  We learned everything we could about the hard of hearing world and its role in today’s society.  Our family learned to sign because we were told that Estelle may not be oral. But we always spoke to her while signing, leaving the choice in her hands as to how she preferred to communicate.

Having her two older brothers to play with helped her interaction no end, but she clearly needed to socialise with other children of her own age. From the age of three, we sent her four days a week to a bilingual program at the early intervention centre for the deaf in Burwood.  To see her little legs board a bus at 7.30am, her tiny frame weighed down by a backpack far larger than she was, would bring tears to my eyes.  It also – surprise, surprise – elicited a mountain of guilt.  But if our little girl was ever to catch up with her peers, this was absolutely fundamental.  It certainly paid off – for everyday we noticed she had more and more language.

Gradually she dropped her signing and became increasingly oral.  ‘I like talking because sign language is hard and my hands get tired,’ she told me.  ‘I keep forgetting the signs, but I never forget the words!’

In order to spend as much time with her as I could, I volunteered my time at the school as a creative dance instructor.  This provided me with the opportunity to regularly observe how she interacted with her teachers and peers and identify what needed reinforcing at home.  It also allowed me to witness her strengths and achievements which helped lessen the guilt and intensify my pride. 

Having a deaf child, you are always recommended so many different methods by so many different experts.  Despite holding a huge respect for them, I have never let them nor others dictate to me about what they think is best for my child.  It is vital not to doubt one’s own instinct.  After all we, as parents, know our children and their capabilities best. 

When Estelle was five, we faced the agonising decision of whether to keep her at the early intervention school for the deaf or place her in mainstream education.  In her two and a half years at the deaf school, she had done so well and was so content and comfortable there.  But it had always been our vision to see her attend mainstream school with her brothers.  It was time to test not only whether she could cope in the hearing world, but also how the hearing world would cope with her. 

I had no illusions about how tough it was going to be for her.  When she began Prep at the local Catholic school, I had to brace myself for her deluge of questions that would come once her classmates began interrogating her about her deafness.   

‘Mum, why am I the only one wearing hearing aids in the family?’ she asked me one day.  I knew that this question would eventually crop up, but I never knew quite how I was going to answer it.  Without thinking, I found myself looking at her class photo. 

‘Do all the kids in your class look and sound the same?’ I asked.

‘No,’ she replied unhesitatingly.

 ‘See.  Every one of you is different.  Look – different hair, different eyes, different sizes, different colours of skin.  Each one of you is different and this is what makes you all special.’

She seemed to accept it for a moment, then asked: ‘But why my hearing?’

 I should have known.  She was such a bright little thing and couldn’t help always being one step ahead of me.  I took a deep breath and silently prayed for help. 

 ‘Pregnancy is like opening a Christmas gift from God or Santa.  All year you look forward to Christmas day because you know you will open up a gift that will be special.  It may not be exactly what you wanted, but then that gift finds a special place in your life and becomes part of who you are.  Your hearing loss is what makes you, Estelle.  You were my gift to unwrap and discover.’ I do not know where my answer came from, but it seemed to work because she smiled and changed the subject. 

There have been times, however, when she has walked through the door and the look on her face has broken my heart.  Her biggest challenge has not been inside the classroom, but in the social interaction outside it.  She is unable to hear what the kids are saying in the playground when several are speaking at the same time, or when they are speaking some distance away from her.  Sometimes they’ll say things like ‘Estelle, you can’t play this game because you can’t hear us.’  Kids will be kids and I’ve had to teach her to stand up for herself. 

Estelle was given a baby doll for her birthday and I noticed to my surprise that she’d used a black marker to draw two hearing aids on the doll’s ears.  Most kids would have drawn make up, but she clearly needed the doll to resemble her.  I asked her why she’d done this. 

‘This is my baby,’ she replied earnestly.  ‘And babies look like their mums.’

I was amazed. 

I decided to spend the afternoon making proper hearing aids moulds for the doll, which she then proudly took to her ‘show and tell’ at playgroup. While all the hearing kids gathered around intrigued, we introduced her deaf baby and answered their questions about its deafness. 

There surely couldn’t have been a more wonderful way to educate her classmates and increase their awareness about her aids being an integral part of her life. The doll was then happily placed in the play corner so that each time someone dressed the doll, its aids would go on.  It made Estelle feel accepted and confident enough to wear them not only at the deaf school, but at the mainstream one too. 

Each of these steps helped Estelle’s transition into the world of the hearing. It also assisted me as her mother to know that her self-esteem around accepting her hearing loss was growing.

As a parent you try to do your best to teach life skills and having a child with a hearing loss has only made me more determined to do my best. Sometimes I want to protect Estelle from the pain that goes with not hearing, but the reality is: she is who she is.  I can’t protect her from that. The sooner I accepted her hearing loss then the better it would be for her to cope and understand herself in this hearing world.

We’ve even had situations where parents have told their kids not to play with Estelle because ‘she might not be able to understand.’  It is sad that people simply don’t know how to react to deafness, but I believe it’s up to parents of deaf children to educate them.  You simply have to go out there and tell people to speak directly to your child’s face, slow down and be clear.  Then it’s fine. 

Despite the hardship, we know that placing Estelle in a mainstream school has been the right thing for her. We’ve been fortunate that her school has been so supportive of her needs.  Along with a visiting teacher twice a week, she receives a teacher’s aide and specialised equipment, including a soundproofed classroom. All of her teachers are accepting and approachable and wear RF units which transmit their voice directly to Estelle’s hearing aids. 

She is now in Grade 4, has learned to hold her own with her hearing peers, is confident, happy and has loads of friends.  At ten, she loves to learn and has dreams to own her own hairdressing salon.  The sky is the limit for her. When Estelle was younger, she was convinced that when she grew up she would no longer need her hearing aids.  But now she accepts that they are an integral part of who she is.  She is who she is and she is proud of that.

I have had to teach the family to adapt to Estelle’s needs.  At home, Albert and I don’t treat her any differently to her brothers.  At the dining table we will always make every effort to ensure she is heard and will often stop the conversation to make sure this happens.  This is not always easy to do as I never want to spoil Estelle or mislead her into thinking she is always going to get our (or any-one else’s) special attention. 

During family discussions we consulted Estelle about what would best suit her communication needs. In the early days we used her RF unit at home, but it gradually became redundant. Estelle’s brothers have learned to speak in plain view of her where she can see their lips.  We eliminate background noise so she can clearly hear them.  Our house has floorboards so that she can hear the vibrations of noise and music. 

The boys have become skilled at including Estelle in their discussions, at repeating questions without getting annoyed and not simply assuming she has heard or understood.  More and more we have become aware that spending quiet time with her without having any disruptions in the background greatly enhances her wellbeing. 

My own initial feelings of isolation and desperate need for support made me think about all the other families out there who must feel similarly when their children are diagnosed. This led me to start up the Parents of the South East Region (POSER) group in Melbourne in November 2004 with the help of Deaf Children Australia.  Now with around 25 members, this group has a primary aim of providing friendship, inspiration and support to families of deaf and hard of hearing children in Victoria’s south-eastern suburbs.  It now meets regularly to swap ideas about parenting strategies. 

My goal has always been to replace the ‘show bag’ with a booklet containing real life stories of parents with deaf children and of the deaf children themselves.  I wanted others in the same situation to have access to their contact details so that they would have the chance to get in touch with them.  In July 2007, together with guidance and funding from Deaf Children Australia, the Where Do We Go From Hear? booklet was launched and is now available nationwide. 

Since its launch, many families of newly diagnosed deaf children have told me that the booklet has given them hope and brought them answers. In the last few years, I have given many interviews and shared my story with many magazines, newspapers, radio stations and TV programs. While at times, I have been criticised for my willingness to appear in the public eye, I believe this is crucial if we want to better educate the hearing public about the best ways to interact with deaf people. As a parent of a deaf child, I see it as my natural duty to promote more understanding and awareness of deafness out in the community. Who else is going to do it if we don’t?

If testing had been compulsory (or if the health professionals had listened to a mother’s instinct), Estelle would have been diagnosed at three months old.  The fact is, testing is still not enforced in every state – just with babies who are premature and/or with a history of hearing loss. A child who is diagnosed before they are six months old still has the chance, with speech therapy, to have normal speech. 

Estelle’s speech is very good purely because I interacted with her as though she were deaf, way before her official diagnosis.  Please, if you suspect your child is deaf, never take no for an answer.  Persistence is the key.  Never, never, never give up!

Parenting a child with hearing loss was a journey I never thought I would have to undertake.  But it came into my life in a bundle wrapped in pink.  Since travelling this road of deafness with my daughter, I have always been grateful for the love and support of my husband, Albert, my boys, Adam and Shaun, my extended family and my friends.  I have also sought and relied upon the support of Deaf Children Australia and the support of my local community.  I hope Estelle will one day stand proud knowing that she never journeyed alone. 

Despite never having attended university, Estelle has been my degree.  Through her, I have learned about patience and resilience, tolerance and perseverance.  Together we have attained so many things I never thought were possible.  She has been a deep joy in my life.  I am so grateful to God that He brought her to me.

Please share your story of hearing loss with us.  Or do you have tips and strategies that have worked in your own journey with hearing loss that would be useful for others?  Email us at breakingthesoundbarriers@gmail.com

This story comes from the book, Breaking the Sound Barriers: 9 Deaf Success Stories.  If you would like to read others, why not buy the book on Amazon.

Joanna and Estelle

Joanna and Estelle

It seemed the obvious thing to do, the natural next step.  The Breaking the Sound Barriers book has been so well received in Australia, not only by families of deaf children for whom it was originally intended, but also by deaf people many of whom have commented that they wished that they had had read something like this many years ago.  It just felt right to take this resource overseas where more people could benefit from it. 

So on 6 May 2010, I boarded a flight for the US with the aim of spreading the word about Breaking the Sound Barriers to families of deaf and hard of hearing children and deaf and hard of hearing people over there. 

Since being here, I’ve had the pleasure of visiting some of the best facilities for the deaf and hard of hearing in the world. 

DePaul School for Hearing & Speech, Pittsburgh

On 11 May 2010, I met with Lillian Lippencott and John Krysinsky at the DePaul School for Hearing and Speech in Pittsburgh, Pennsylvania. 

Established in 1908, DePaul is a beautiful state approved private school serving auditory education to approximately 70 deaf and hard of hearing children.  DePaul’s mission is ‘to prepare these children, from birth to age 14, to fully participate in our hearing and speaking world.’   Their extensive services include paediatric cochlear implant habilitation, speech, physical and occupational therapy and parent education. It is not-for-profit institution and their programs are offered tuition-free to parents and caregivers of approved students. 

As part of its end of school year festivities, DePaul will be hosting an evening called ‘Breaking Sound Barriers’ on Wednesday 2 June from 6.30pm to 8.30pm.  There I will be speaking about the book, Breaking the Sound Barriers as part of a panel of deaf and hard of hearing DePaul alums and family members who will be sharing their own personal accounts of success. This is sure to be an inspiring event.  Please contact De Paul School for Hearing and Speech (412) 924-1012 or visit www.speakmiracles.org  if you wish to attend. 

Center for Hearing & Deaf Services, Pittsburgh

 On 14 May 2010, I met with Jessica Knoche at the Center for Hearing & Deaf Services (HDS) on 1945 Fifth Avenue, Pittsburgh who gave me a tour of the Center and introduced me to all the wonderful staff who work there. 

HDS’ mission is ‘to provide a diverse and affordable program of quality diagnostic, rehabilitative and supportive services designed to address problems experienced by children and adults who are deaf or hard of hearing and serve as an information and referral source for this population and the general public.’

HDS’ professional staff have developed innovative programs, including the first Chemical Dependency Program for the deaf and hard of hearing population in the tri-state area, an assistive listening and signaling device demonstration and sale centre, a program providing activities for deaf and hard of hearing youth, and a Hearing Aid Recycling Program.

On 4 June 2010, the Center for Hearing and Deaf Services will be taking part in the the 2010 Disability Awareness Celebration hosted by the Pittsburgh Pirates at the ballpark on Federal Street, Pittsburgh.  Starting at 4.30pm, there will be a pre-game fair with vendors, service agencies and more.  I will be there at the Centre for Hearing & Deaf Services stand so please come and say hello!

 A Night of Remarkable Women, No Limits for Deaf Children, Los Angeles

On Tuesday 18 May 2010, I had the privilege of being invited to speak to families of deaf and hard of hearing children about Breaking the Sound Barriers: 9 deaf success stories.  The event, “A Night of Remarkable Women’ was hosted by the wonderful organisation, No Limits for Deaf Children, in Culver City, Los Angeles. 

The mission of No Limits is ‘to meet the auditory, speech and language needs of deaf children and enhance their confidence through the theatrical arts and individual therapy as well as provide family support and community awareness on the needs and talents of deaf children who are learning to speak.’

Founded in 1996, No Limits is the only theatre group in the nation for children with a hearing loss who speak and listen. The children of No Limits have performed in over 55 productions in over 10 states, reaching an audience, to date, of over 30,000 people. Their work has been featured in the New York Times, Newsday and Oprah.

Michelle Christie-Adams is the Founder, Director and Playwright of No Limits. Michelle is a highly inspiring individual.  Herself a qualified teacher, she combines her love of teaching children with over 18 years of experience in the entertainment industry. Michelle has received numerous awards and honours for her work with the No Limits organisation, including “Top 100 Heroes” award from Volvo for Life, and The George Washington Medal of Honor from the Freedom Foundation.

The Night of Remarkable Women included the acclaimed Kathy Buckley, America’s first Hard of Hearing Comedienne, and 5 time American Comedy Awards Nominee for ‘Best Stand up Female Comedienne’.  Kathy has been featured on The Tonight Show, CNN, EXTRA, the Today Show and numerous other media. 

Kathy is a truly amazing woman.  Her hearing loss was undiagnosed until she was eight years old, she was incorrectly labelled ‘retarded’ as a child, had cervical cancer when she was 27 and was run over by a jeep while lying on a beach becoming bedridden for five years. 

She uses humour to educate people about hearing loss.  “My comedy disarms people,” says Kathy. “I love to make people laugh, but I love it even more if I can teach them something at the same time.” 

Kathy asked families of deaf and hard of hearing children to become advocates for their children and that has become her mission in life. 

Australia would definitely benefit from inviting this wonderful woman to speak.  Everyone could learn a lot from her.  She has you laughing and crying in the same moment. 

Another ‘remarkable woman’ invited to speak at the No Limits event was Rhianon Gutierrez, a 22 year old filmmaker with hearing loss.  After overcoming many challenges in her youth, this incredible young woman went on to become a star filmmaker at Chapman University where she received a ten-minute standing ovation for her film, “When I’m Alone.” Since then, her film has gone on to win numerous awards on the international film circuit. 

The last on the panel was the delightful Enid Wizig, 87, who shared her story of what it was like growing up with hearing loss during the great depression before modern technology.  Despite having to wear bulky body hearing aids, Enid went on to enjoy a successful career as an animator, becoming the first deaf artist of Looney Tunes in the 1940s. 

These are examples of women, who despite numerous obstacles, have never given up and have gone on to incredible success.  Everyone who attended had an uplifting and, for many, life-changing, experience. 

A huge thank you to Michelle Christie-Adams, the director of No Limits, to Kara Navin, Project Coordinator and to Richard Martinez, Director of Development at No Limits for putting on the event.  Check their website www.kidswithnolimits.org for more information on their future events and programs.

Welcome to the Breaking the Sound Barriers blog!

My name is Julie Postance and I am the author of the new book, Breaking the Sound Barriers: 9 deaf success stories (published by Deaf Children Australia in May 2009).  This book is a collection of real life interviews which captures the highs and lows, struggles and achievements of parents of deaf and hard of hearing children, and deaf and hard of hearing adults.

First let me explain why I wrote Breaking the Sound Barriers.

I am a trained journalist, author, ghostwriter and marketing professional.  I have worked for Deaf Children Australia – a national not for profit representing the needs of 16,000 deaf and hard of hearing children across Australia – since 2005.  My job has been to increase awareness of deaf children through feature stories in the media, newsletters, direct mail appeals and events.

While working at Deaf Children Australia, I discovered that 95% of deaf and hard of hearing children are born to hearing parents who have little or no experience of deafness.  I witnessed numerous parents of deaf and hard of hearing children calling the Deaf Children Australia Helpline saying, “My child has a hearing loss.  Will they ever lead a happy, normal life?  Will they cope at school?  Will they make friends?  Will they ever drive?  Will they get married?”

Having worked with many deaf and hard of hearing people who were leading very active, full, happy, successful lives, I knew the answer was a giant resounding “YES!”, but these parents clearly didn’t!

I went home and started searching the internet for any books that would show these families that deaf children could be, do and have whatever they wanted in this world with the right knowledge and support.  But what I discovered instead were countless books packed with nothing but dry medical jargon.

In my job, I spoke to many parents of deaf children who complained about the lack of support following the diagnosis of their children.  Others reported being propelled into a highly politicised world of deafness where different organizations pushed their own agendas.

Some parents went so far as to tell me that they had been discouraged by some authorities from using sign language with their children!  Other parents revealed that they had taken heat from the Deaf community for using hearing aids or cochlear implants.  No wonder these parents were feeling frustrated and confused!

I realised what was missing (and what was much needed) was a simple, comprehensive, easy to understand, user-friendly, non-intimidating and positive book about how to raise a child with hearing loss that was easy to apply.  Something that would REALLY help and empower families of deaf children.

So I decided to interview with some of the most successful families of deaf children I knew of who had ‘broken barriers’ in terms of raising their deaf child.  I also interviewed happy, successful deaf adults who had achieved remarkable things in their lives.

The need became increasingly apparent on my behalf to share these inspiring stories so that others could benefit from them and incorporate some of the winning strategies they have used into their own lives.

The result is “Breaking the Sound Barriers: 9 deaf success stories, which captures the highs and lows, struggles and achievements of five amazing families of deaf children and four deaf adults.

This book is jam packed with invaluable tips and information to ensure deaf children fulfil their potential in life.  This book respects the fact that there are many ways to successfully raise a deaf child and that parents should make their own decisions, based on what is right for their family and for their children.

Each person in the book has chosen a different path.  Some have chosen the signing route; others the auditory verbal route and others, the bilingual route.  By reading their stories, you will get a glimpse into the likely implications of taking one direction or the other.  It gives you some fundamental information foundations for making difficult decisions necessary when choosing the best path for your child.

And let’s face it.  Who better to offer a parent practical, hands on advice than those parents who have navigated the journey before?  Or a deaf adult who has come up against and overcome many of the barriers associated with hearing loss?  All this information is tried and tested by people who have walked the path before.  These parents of deaf children and deaf adults address all the questions you have had and more in a book that is easy-to-read and in plain English with no jargon!

The five families of deaf children in this book are incredible.  Let’s take Joanna, for example, who is the mother of ten year Estelle, who was diagnosed as severely deaf at 22 months old.  Joanna talks candidly about the lack of support by professionals up to and following the diagnosis. “All I wanted to do was speak to another parent of a deaf child who would tell me that everything would be okay.” Joanna’s feelings of isolation and need for support led her to create a support group for other parents of deaf and hard of hearing children.  She also created a free support booklet written by parents of deaf children, which is now inserted into the ‘showbag of medical mumbo-jumbo’ that parents receive following diagnosis.  Estelle mainly uses oral language to communicate, attends a mainstream school with her hearing brothers, and plans to run her own hairdressing salon one day.

This book would never be complete without stories of deaf and hard of hearing adults…

Which is why I interviewed some of five of Australia’s most inspiring deaf adults who share with you their battles and victories, obstacles and opportunities, pressures and lessons.  Each speaks about the barriers they came up against being deaf in a hearing world.  Some speak about the feelings of isolation being born into a hearing family, or with being the only deaf student at school.  Others tell about the shortage of specialist support in the classroom and with having to prove to potential employers that they can do the job just as well as a hearing person.

They reveal the skills they have developed to compensate for a lack of hearing, the mindset they needed to cultivate, to cope and flourish, and the beliefs they have had to nurture when barriers have sometimes seemed insurmountable.  The insights they reveal is not found in medical journals.  These are gems that cannot be found anywhere else.

These five incredibly generous deaf and hard of hearing adults I had the privilege of interviewing have undergone challenge after challenge in the hearing world, yet they have gone on to become highly successful sportspeople, businessmen and women, CEOs of large organisations, teachers, wives, husbands, mothers and friends.

For example, you will read how David, who is profoundly deaf, came from a small country town with virtually no specialist support.  He speaks about what it was like being the only one in his school, his family and virtually his whole town who was deaf – and how despite numerous setbacks, he succeeded in becoming the National Business Operations Manager of a sports organisation, representing Australia in the 2005 Deaflympic Games in water polo, and climbing three of Britain’s highest mountains in less than 24 hours! He says, “Being deaf is a huge challenge.  There is nothing I love more than embarking on new adventures and showing others that being deaf doesn’t hold you back.  It is simply about finding a way to achieve whatever it is you want in life.”

Since its launch in May 2009, Breaking the Sound Barriers has been met with huge success around Australia including being featured on Channel 7 and in many magazines and newspapers.  I have loved receiving emails and calls from parents saying how much the book has helped them.  My aim is to get it into the hands of every family with a deaf child around the world and this year, I plan to take it to the UK, the US and China.

You can read what others thought of it in the Testimonials section, but what I can tell you is what this ground-breaking book will give you:

  • You’ll be able to take away with you practical solutions to help you enrich your deaf child’s life and in doing so, improve your own.
  • You’ll discover that deaf and hard of hearing people can BE, DO and HAVE anything they want in this world.
  • You’ll feel less alone in your journey of raising your deaf child.
  • You’ll get a candid insight into the world of deafness – the tears and the joys.
  • You’ll connect with, and learn from, those who have travelled a similar path so that you may become the best parent you can be to your deaf child.
  • Gain specific strategies others have used to tackle barriers related to early intervention services, education, communication within the family and in the community, employment and adulthood.
  • Get a wealth of practical advice about navigating the highs and lows, drawing out the best in your deaf child and keeping your child’s self-esteem high.
  • Glean valuable tips and ideas from deaf adults as to what works and what doesn’t in regards to being deaf in a hearing world.
  • You’ll get a totally new perspective on hearing loss…

While this book was originally written for parents and families of deaf or hard of hearing children, it is also valuable for deaf and hard of hearing teenagers, deaf and hard of hearing adults, and professionals interested in deaf perspectives. Schools and universities will also find it a useful resource for subjects dealing with deafness.

The book is currently available on Amazon and from Deaf Children Australia for $24.95.  If you buy it directly from Deaf Children Australia, they will receive 50% of the profits of the book so you will be making a greater difference to deaf children if you buy it from there.  Otherwise, if you buy it from Amazon, Deaf Children Australia will still receive 10% of the profits.

I’d love to hear your thoughts and feedback about the book.  Please use the contact page to contact me.