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Rebekah's story

I am profoundly deaf, married to a deaf man who is from a deaf family  - deaf parents, deaf brother and a hearing sister.  She is an Interpreter and one of the best in Australia. I have 4 children and 3 of them are deaf. My last baby is very mild, at 30dB. We say he is 'hearing' because he is neither hearing nor deaf.

Rebekah and her childrenYes we are a bilingual family. We use both Auslan and speech in our home environment and educational setting. But our journey was not an easy one for both the deaf community AND the hearing community. We faced barriers, discrimination and so often 'intimidation' from many people. I have sat down so many times and cried my heart out. I wear a tattoo on my upper back saying, 'Born as I am, Deaf and Proud' to remind myself that being deaf isn't a disability nor an issue. I am proud of who I am and proud of my children and my family.

When my eldest daughter was born, I had a feeling she was deaf and half of me were excited. I was 21 when I had her and, at that time, I was so 'Deaf Power.' I was so full of it. I was one of those people who would march and lobby for deaf rights and often I went too far. My parents were ashamed of me. They used to hang their heads in shame because I would intimidate them about my deafness and my rights. I look back and I realise I did hurt them so much. It was not their fault I was born deaf. It was later discovered that I actually carry a deaf gene which I probably inherited from my father.

My oldest daughter 

My oldest daughter was diagnosed at 6 weeks old. It was in the 1990s and they did the test so early because she had deaf parents. I decided to encourage her to wear hearing aids and give her access to both hearing and deaf communities. It was easier back then because she could wear hearing aids without any difficulties and could develop speech/auditory skills quickly. She managed school with a Teacher of the Deaf and did very well. She sees herself as a deaf person without barriers and lives her life to the fullest in the hearing community. But this isn't the case with my other children.

My oldest son

I waited 14 years to have my second child. When my eldest son was born I believed he was hearing but my husband and his sister was sure he was deaf. He failed his newborn screening test 3 times in a funny way. His right ear passed but his left ear failed then the 2nd time his right ear failed and his left ear passed then the 3rd time it was opposite results again. I was told by the screening nurse he probably had fluid in his ears and he should be fine. This lent me to believe he was hearing. My husband didn't like how they stamped in the back of the blue health book 'FAILED.' He said it like working at a toy factory and stamping on the heads of the dolls saying this one FAILED and this one PASSED.  It was an awful feeling.

I used to cradle my baby boy in my arms and stare for hours wondering if he can hear me or not. Even though I am deaf, I still love to sing. So I sing when I am alone and I sang many songs to my son. He would look at me with his bright blue eyes and white hair - smiling. He made me wonder so often.  His diagnostic hearing test was booked for when he was 10 weeks old.  Then one day I took him to my local GP for a check-up and my GP said he suspected he was deaf. My heart sank. It was different with my daughter - I didn't mind she was deaf. I was a bit excited. But with my son, I didn't want him to be deaf. A lot had changed in 15 years with education.

I wanted the test to be done now so I could know for sure if my baby was deaf or not. When he was 10 weeks old, we went for the diagnostic appointment. I love the people at this centre. They are beautiful and warm - caring. It was hard to get my son to sleep calmly. It took me about an hour of rocking and feeding and finally he was sleepy. After the test, they confirmed he was deaf. He didn't have enough hearing to wear hearing aids. I sobbed. However, I walked out determined to make his life simple and happy.

I was referred to the early intervention program and was blessed with an amazing teacher.  She has been my 'rock' during my children's first few years. My son wore hearing aids and had access to speech via signing. I was strong. I said he could learn speech through signing. He had an interpreter for every session and every playgroup. I was never disadvantaged. We enrolled him in a bilingual preschool program and lobbied for about 8 months to get him into a program for children who listen and talk. They didn't want to take him because he came from a signing family and his first language was Auslan.  We told them if they do not accept him then it was discrimination. In the end, they let him into the program and it was the best choice I made.

He learned so much from both preschools but he did develop severe behaviour issues. I knew from the time he was a newborn that something wasn't right. It is not that he isn't perfect - he is perfect in every way. I couldn't believe how early he reached his milestones. He was toilet trained at 18 months in 3 days. Then he stopped wearing nappies at night when he was 22 months old. He could read and write his name at 3. He was doing things like a 5 year old. His language was so advanced there were suspicions he was ASD. When he was 2, he was diagnosed with ADHD. I refused medication and kept going till he was 8 when he started medication.

He went to a school for children with significant hearing loss using spoken language.  It was a great school but terrible attitude. It broke my heart to pick him up from school and watch him tell me, "My friend sat in the green chair today." I wondered about the green chair and then realised that every time he signed, his friends would sign back and they got into trouble for using signing at the school. It was an oral school but I didn't think this attitude still existed.

I wrote a letter to the principal who dismissed my letter and said I was expecting too much. I felt intimidated as a mother. I only wanted the best for my son. I was not allowed to have an opinion as a mother or defend those deaf children who have the right to sign language. That letter stuck in my mind for a very long time. I felt helpless, naughty and terrible for being a deaf mother who believes in her language.

Another girl...

During that time I had another baby. I wanted 5 or 6 children but my husband didn't. So we agreed to have one more. We had a baby girl - our youngest daughter. From the moment she was born, I knew deep down she was deaf. I don't know why. I just knew. She didn't pass her screening test and I told the screening nurse, "Don't patronise me. Just say it.'"But again, "Oh it's probably fluid in the ears because she was born in the shower.'" pfft... She had her proper test at 5 weeks old. My worst fear was that I would be told she was profoundly deaf... The audiologist said to me, "I am sorry. She is so deaf we cannot get any reading from her. The only way we can confirm how deaf she is by having the brain test." My mouth dropped... thoughts raced through my head.  "Can she hear with a hearing aid?"

Dad and the kidsStraight away on the same day we saw the ENT and my husband asked, "Can she have a cochlear implant?" I looked at my husband and said, "NO! NO WAY. I am not implanting my baby girl." The ENT is such an amazing doctor and if we didn't have her, I know she wouldn't be implanted today. She shared a mother's love and understood my grief. I told my husband I want to wait 6 months and try the hearing aids first. We got them and I put them on every single day. I was determined for her to 'hear' but she never heard one sound - not even the saucepan banging. I cried every night. I prayed to God,  "Please let her hear with those aids." I didn't want to implant her. I didn't want to resort to that technology because I was so afraid of losing her deaf identity. I was so afraid I would lose 'me' in her - she was like me. I am profoundly deaf. My life is limited because of my inability to communicate with hearing people. Even though I do have speech, I cannot hear anything. I became so protective.

My husband did all the research and we talked endlessly about what he found. She is his daughter too and he was entitled to his opinion too. I had to not be selfish. I had to listen to him and consider all the options. We spoke about the possibility of implanting one ear with our friends and his family. We didn't speak to my family because I knew they would encourage me to do it. I wanted this choice to be from my heart only. What we didn't expect is everyone to be against us. We didn't expect people to look at us and say, "How could you do that? That's cruel." What they didn't know was that she was also 'blind.' She had DVM - Delayed Visual Maturation and her vision didn't develop till later.

One day I said to myself,  "Is this my life I am living? Or is this my baby's life I am holding?" I realised many things - I realised she would resent me if I didn't give her all options. She might say to me when she is 12, "Why can my brother and sister talk and hear when I can't?" I couldn't answer that. She might say to me, "Why didn't you try?"  I couldn't answer that my selfishness meant that I didn't want her to be someone different. But I realised she would still be my baby - no matter what happened.

Our cochlear implant journey

When we went to the cochlear implant clinic for her first appointment it was really eerie. The receptionist had no idea of signing. No idea what an interpreter was. She gave us dirty looks. We felt so out of place. We sat in a room and had a meeting. We were told, "Why bother implanting her when you both can't teach her to 'hear' or 'talk'? You are wasting your and our time.  This won't work." I was furious - OK, as a deaf person I am used to being denied many things.  I am used to settling for second best or missing out.  I am used to being not 'important.' I got up and said, "We will find a way. We believe she will 'hear' and will talk. It is possible. It can happen." I was determined to make it successful but I also was testing myself too. 

She was implanted at 7.5 months old. On the day of her surgery I didn't want her to have it.  I was full of dread and fear. I was so scared and afterwards, when she woke up, I kept saying, "She looks so sad." I regretted it then. But when the switch on happened and she cried when she heard the sound,  I couldn't believe it! She heard it and she had not heard anything for 7.5 months.

I took her to speech therapy 3 times a week, registered in a hearing playgroup, and enrolled her in a child care centre 2 days a week. I gave up everything and focussed five years on both my son and my daughter. I wanted them to develop spoken language. I wanted to prove to the cochlear implant centre, professionals, teachers and the Deaf Community that it is POSSIBLE. My children can have both speech and signing.

It wasn't an easy ride. We hit so many humps and had so many tears. We have experienced so much negativity from both sides but we also had wonderful people from both sides on our side who have walked that long road with us. We made it because of their belief in us.

Our baby...

Then we had to think about schooling. NSW didn't have the option we wanted and my son was already experiencing negativity for being a signing/auditory person at an oral school. We wanted a school that all of our children could attend together. I had my last baby then - another boy.  Again I didn't know he also had a hearing loss. It wasn't until he was 3 that we were told he had a 30 dB  loss and could lose more over time.

I tried for one more baby but had a tumour so I couldn't have any more babies. I was devastated. I wanted one more baby - a hearing baby for my last son so he wouldn't feel 'left out.' He is the only 'hearing' person in our family.

On the move...

We decided to move to Queensland and settled on the Gold Coast with our three younger children. My oldest daughter  remains in Canberra. They all attend a Miami school where they are integrated in a mainstream class and have their own educational interpreter.  My son was finally diagnosed with ASD. I knew it. Those endless appointments with me telling the doctors, "Don't look at his deafness - look at him as a person." No-one wanted to confirm he had ASD because they were afraid of misdiagnosing him due to his deafness. It didn't matter how experienced I was as a mother or how many years I have worked in deaf education,  they were too scared. He is now on medication and has a better future. He is doing so well at school - he is brilliant and so intelligent. Even he sees himself as an odd child but he is still my beautiful blue eyes and white hair baby.

Christmas with the kidsMy daughter now has bilateral implants. She wanted the second implant when she was 5. She begged us to give it to her . She is 7 now and she loves her implants. She is in the school choir and does dancing twice a week. She is also a very beautiful native signer. She made me the proudest mother in the whole world with her languages. I have endless conversations with her.

My baby boy is now 5 and is still my baby boy. I try so hard to make sure he isn't left out and I try to make him feel loved equally by all of us. I find my biggest challenge is my baby boy. Because he isn't deaf and isn't hearing... he is stuck inbetween. He cannot get the advantages that deaf children can get in education yet he misses out a lot from a hearing perspective as well. I only hope he will never have to doubt himself or feel isolated. I grew up isolated. I know what it like and believe me, it isn't pleasant. I have no regrets. I am glad I did all this. I am a better mother because I gave my children both choices. I am neither wrong nor right because, at the end of the day, my children are little people and it their lives we are looking at.

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18-Feb-2022 8:31 AM (AEST)