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.