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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

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