Deaf Children Australia’s Parent to Parent Mentoring and Life Stories Programs

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Alana

    Parent to Parent Mentoring

    Deaf Children Australia’s (DCA’s) Parent to Parent Mentoring programs complement Newborn Hearing Screening programs and provide vital support for families between diagnosis and engagement with early intervention services. Trained and experienced parent mentors with older children share their experiences, offer information and emotional support, and give advice on how to provide a supportive home environment.

    Phillipa Fuamatu has been a mentor for almost two years and she explained why she became involved: “I have four children, three of whom were born with a profound hearing loss. Jalawlin (10), Jeyvina (4) and Macgyver (17 months) were all diagnosed through the Newborn Hearing Screening. I was fortunate to have lots of support around me and I wanted other parents to feel that they are not alone, that others can understand.  I think it’s really important to provide that listening ear, to comfort parents that their children can do anything others kids can do like going to school, playing sports, having friends… and they can do all that without limitations.

    “I try to provide unbiased guidance to empower families to make their own choices and I encourage parents to understand the importance of early intervention, and developing language and communication skills. We also discuss all the support they will receive and the opportunities they have to meet other parents through Early Intervention, playgroups and the Parents of Deaf and Hard of Hearing Children Support Group (POD).”

    After Anissa Cavanagh’s second son Archer was diagnosed at the Newborn Hearing Screening with a profound bi-lateral hearing loss, Anissa said she felt “blessed with Archer” but she explained, “The diagnosis was such a confronting experience and we felt devastated at first. When Archer was four weeks old, we spent around three hours in the hospital struggling to comprehend all the information being relayed by a string of specialists. Then we met our mentor Phillipa at our last appointment of the day and for the first time since the diagnosis, I just broke down. I had been trying to take all the information in and then when Phillipa said straight up, ‘I understand exactly what you’re going through,’ I thought this is someone who really understands our heartbreak, and who knows how overwhelmed you can feel. Phillipa was beautiful – just so caring and compassionate.

    “On the way home, I said to my husband, ‘That appointment with Phillipa was the most important of all. We needed all that information and we appreciated how fortunate we are to have so much support and technology available now for children who are deaf. But it was just so important to talk with Phillipa to put it all into perspective, to help us feel much more positive about Archer’s future and to feel hope. Now, he is doing so well. He received cochlear implants last September and at 20 months of age, he is comprehending us well and saying around 30 words.”

    Life Stories Program

    DCA’s Life Stories Program offers Queensland families the opportunity to meet adults who are deaf or hard of hearing. The positive role models share their life experiences and help families feel more confident about what the future may hold for their child. They offer encouragement and support, and increase awareness of some of the challenges and possibilities of living with deafness.

    Julian with his gorgeous daughter Jasmine

    Julian Scharf explains he supports families through the Life Stories Program because, “My deafness runs deep in the tapestry of my personality. How I perceive myself, how I interact with others, how I live and learn, all of these things are shaped by my deafness in some way. However I have a very healthy attitude, I’m proud of who I am and the experiences that have shaped me. I want to show parents and teenagers how good life can be with a hearing impairment. I did have a very hard time in high school with bullying, but once those years were through, my life has been wonderful.

    “Since starting the program I have had a really close look at how my deafness has shaped me and made me who I am. I am a much stronger self-advocate for support for my deafness now. I am far more confident and comfortable in who I am as a deaf person than before.

    “With new parents of deaf children, I think I help fill the future with positive possibilities. Every parent has a dream of the future for their child. When they discover their child has a hearing impairment, that future dream is disrupted and uncertain. Often parents are grieving the loss of the future dreams that they had for their child. There is something very reassuring about meeting someone who is happy, confident and comfortable with their deafness. It takes some anxiety away about what the future might hold for their child and allows them to fill in the future picture of what being a deaf person is like.

    “The biggest message I share is always the same. When a parent contacts us, they have made an effort on behalf of their child to get information and support. I tell them that my mum and her efforts are the biggest defining element of getting me to where I am now.

    So I say: ‘As a parent, you are your child’s biggest advocate and you have picked up the phone and asked for help. They are so lucky to have you in their corner, fighting for support.’ (Because sometimes it really does feel like a fight for answers, acknowledgement etc.)

    “Parents might be really concerned about how socialising happens. I recently shared with some parents my experiences with girlfriends and dating, this had some fantastic feedback. Parents always want to know about bullying in school and ways to deal with it. (There are things that I share that offer possibilities to help with bullying). Some parents might be really concerned about whether deaf people can manage with university studies (of course they can!).”

    Support parents are available to meet with families at Childhood Hearing Clinics and hospitals, and at Early Childhood Development Program playgroups. They can also provide one on one support to families.  Mentors can meet with families at playgroups and provide one on one support as well. For more information and to access Deaf Children Australia’s programs, phone (07) 3607 0075 or 0424 782 027 or email helpline@deafchildren.org.au