Your Story – West Australian Foundation for Deaf Children
Your Story 2017-04-29T14:25:06+00:00

Your Story

Jenelle – A Mum’s Story

My name is Jenelle, and I have a profound hearing loss. I am also a mother of a profoundly deaf daughter, Lucia. When I was born I was hearing. It wasn’t until I was about 3 years old, that I was diagnosed as having a profound hearing loss. All the doctors & medical staff in the country region and in Perth, stated the reason for my hearing loss as having an allergic reaction to the latest immunisation needle. This was accepted as the cause of my deafness because I had my immunisation needle about 1 month before. We lived in a very small country town called Three Springs, which is situated about 4 hours north of Perth, just before Dongara. It is a very small farming community and unfortunately there were no medical professionals to deal with hearing loss. Mum took on the role of my mentor, my mother, my teacher and speech therapist, and we spent many hours together trying to get me to talk and listen. While growing up I never really had any close friends. I was more of a loner and would be quite happy to sit and read a book or catch up on my homework. I struggled with friendships, socialisation and just trying to keep up with my peers as I relied totally on lip reading and it was hard trying to keep up with everyone in conversation.

Most of my hearing appointments were based in Perth or in Geraldton, and back then I only had a visiting Teacher of the Deaf (TOD) maybe once a term. When she came, I used to run as far as I could to get away from these visits as I didn’t like to be taken out of the classroom because I didn’t like to classify myself as a deaf child or someone different. I wanted to be accepted like everyone else. Apart from Mum, I grew up with no help or support and being in the remote country town, I didn’t have access to facilities such as television subtitles, note takers, interpreters or anything like that through all my schooling years. I did 3 years of boarding school at Sacred Heart College in Sorrento, and unfortunately I did not enjoy these years. I struggled with keeping friends, not being able to fit in with everyone listening to music and being with groups of people. Unfortunately I spent a lot of time trying to convince Mum that I didn’t want to do high school anymore. We all moved to Perth when I was 17 and I studied at a business college for over 12 months to obtain my Business Studies Diploma. Unfortunately I spent the next 10 months unemployed. It was so devastating to see all my classmates getting jobs so easily but as I couldn’t use the phone I wasn’t offered any admin/office jobs. Finally I was given a trial and I worked for a superannuation company for 8 years but I was never once offered a promotion and continued working as a filing clerk. I was offered the chance to learn sign language and I thought why not. I learnt it at TAFE and this was one of the best decisions of my life. A new world opened up for me. It was so much easier for me to socialise with friends, at the park, at parties, in the night clubs, in pubs and relationships became so much easier. I had found my passion and it was communicating with my friends in Auslan – also known as sign language.

I am now married to a deaf husband, Mark and we have a 13 year old hearing son and a 7 year old daughter with a severe to profound hearing loss. Once again she was not diagnosed with a hearing loss until 3 years of age. Due to the all the struggles that I dealt with growing up, I taught her Auslan (sign language) from a young age. I have had my struggles with Lucia being diagnosed deaf. It was hard, because a lot of people thought she was just not talking because I was teaching her too much signing. After MRI and CT Scan’s, visits to WAIDE (now called SSENS), visits to Telethon Speech and Hearing (TSH), PMH, Early Intervention, and Australia Hearing, it was decided she would use hearing aids. Unfortunately they were accessing inadequate sounds for her and there was no improvement with her language.

She had her first Cochlear Implant at 4 years of age and her second cochlear implant recently at 6 years of age. I am very proud to give her these opportunities and hopefully it will give her a good start in her career and future. It was a very hard decision for me to make to get Lucia implanted, mainly because I don’t have cochlear implants myself and I didn’t want her to go through the operation when I hadn’t done so myself. I also felt I was going against the Deaf Community in getting her implanted but what everyone needs to know is “she is still deaf ”.

Having cochlear implants is not going to fix her ears. When she is swimming or in the bath or if her implants malfunction and break down, she will always have Auslan / Sign Language skills as a back-up. But since being implanted with her second cochlear, her language, her speech, and her auditory skills have improved dramatically, and she is now able to locate where the sound is coming from. She has a love of music and she is now slowly trying to learn music. It’s hard as this is something she has to learn on her own as I am unable to teach her but it’s something she can do with determination and encouragement. I hope Lucia sees me as her mentor as well as her Mum and her taxi driver to all her appointments. Because we are both deaf we have a bond that no one else can replace.

Written by Jenelle.

Lucia – A Child’s Story

Hello, my name is Lucia and I am 7 years old. My mum found out that I was deaf when I was 3 and I got hearing aids and they didn’t work for me. Mum decided to give me a cochlear implant when I was 4. When I was 6 years old, I asked Mum for a second implant as I was getting frustrated with not knowing where the sound was coming from especially when Mum was calling me.

I got my second cochlear implant when I was 6, almost 7 years old. My mum has hearing aids, and I hear a lot more than her. I was out the back one day with Mum and I tried to tell her that there was a frog but Mum didn’t believe me so she moved the pot plant and she was shocked there was a frog. Also Mum doesn’t hear the cooking timer so I am always telling her that the cooking is finished. I learnt sign language “Auslan” when I was a baby so when I found out I was deaf, I already had a language. I used sign language to communicate with my mum and dad, as they are deaf too, and also my brothers Tyler and Brandan who are both hearing.

Before I got my cochlear implants, Mum tells me that I was not talking. So we had to go to PMH every two weeks to do speech therapy with Katie and see Carl from audiology and look at where I am now thanks to my Mum. When I was younger I didn’t like going to PMH so Mum used to reward me with buying new baby dolls clothes at Kmart – they had to be under $4.00 or Mum wouldn’t buy them. I attend a mainstream school in Canning Vale, and I’m in Year 2. I have a full time interpreter with me so if I don’t understand the teacher, the interpreter will always back me up and help me out. I wish I had more friends at school that did sign language as it would be easier for me to understand. I am looking forward to attending Shenton College in Year 7 because there will be more deaf children there and I hope I will make some new deaf friends.

Written by Lucia.

Mack’s Story

My name is Natalie and I am the mother of a profoundly deaf child. His name is Mack he is 6 years old. Mack was born with congenital cytomegalovirus or CMV. CMV is experienced by only 1% of pregnant women. Mack was extremely sick at birth and the prognosis was not good. Mack had typical CMV symptoms having enlarged liver and spleen, small head circumference, under developed brain, low birth weight, seizures, haemophilia and hearing loss. Mack spent his first month in the neonatal unit at PMH. He failed the newborn hearing screening test which was done in hospital. I remember thinking if he only just had a hearing loss I’d be happy because things could have been so much worse. After copious amounts of testing at Australian Hearing and PMH, Mack had a right cochlear implant at 22 months.

After an implant a lot of work and time needs to be given to developing speech by both the speech therapist and the parents.

Mack and I had 4 very intensive and stressful years at Telethon Speech and Hearing (TSH) using the auditory verbal method – no visual cues and no gesture. This was difficult for me as I knew Mack needed those cues even when wearing his ears (right cochlear implant and a hearing aid in the left). Mack has never enjoyed wearing his CI. At first it was a behavioural issue where if you told him off, he would automatically knock his ears off as if to say “I don’t have to hear this”. Then he began burying it in the sandpit, throwing it out the car window and down a storm water drain.

Mack has sound awareness with his cochlear but has not developed speech. He has profound hearing loss in both right and left ears. I went against advice to implant the other ear. I have met many deaf and hard of hearing children. Some really enjoy the hearing world and enjoy using their hearing devices. Mack is not one of them. Mack is a true ‘deafie’ (term of endearment). He enjoys signing and is very visual. Mack is now in year 1 at Mosman Park School for Deaf children where he is with other Deaf children and Deaf role models. He is immersed in Auslan at school which is his first and only language. I am now a full time Auslan student at Tafe.

I have completed cert II and will be going into cert III next semester. I’m hoping to be accepted eventually into the interpreter course. On weekends a deaf role model comes to the house to teach my husband and daughter to sign. Mack still has days of frustration and is extremely physical (punching, kicking, biting etc.) but these days are becoming fewer as his communication and language is developing.

Written by Natalie, Mack’s mother.