When Chevone Petersen’s son was diagnosed with hearing loss in 2011, she keenly felt a lack of support for parents.
But four years later, Petersen has been invited to speak about hearing-impaired children at the third International Family Centred Early Intervention Congress in Austria next year.
After her son’s diagnosis, Petersen felt isolated and wanted to connect with other parents, but “could not find information or support as a mother with a child who has been diagnosed with mild hearing loss initially, which then started fluctuating between mild and moderate across the frequencies,” she says.
“I found my support initially through a Yahoo group and then I was introduced to a Facebook group for parents of deaf and hard of hearing children. I also made it my business to understand hearing loss, best practice internationally and intervention offered and I started advocating for my child,” she says.
Realising that local parents aren’t empowered and often lack information to make informed decisions, Petersen started Decibels of Love, the first volunteer parent-to-parent support and advocacy organisation in South Africa that is activated by a parent for parents.
“We’ve reached 20 families through our family mornings, we’re reaching hundreds of people through our Facebook page globally – sharing information, encouraging parents with uplifting stories and we provide support after hours,” she says.
“Our focus is not only on empowering the family, but also pushing back and creating awareness at institutional level regarding the challenges families and their children face in their communities.”
Parents are at the core of their child’s success, Petersen believes.
“We need to empower parents to not sit back, but to stand up and speak up for their children and drive policy changes and implementation thereof. Also, parents must know that they are not alone, they do not have to navigate this journey in isolation. We can connect them with other parents who are willing to support,” she explains.
Attending this conference next year will give Decibels of Love an international platform to raise awareness, share experiences and network while learning, Petersen says.
“This is really a significant opportunity for me. I’ve really submerged myself in learning as much as possible about hearing loss, the impact it has on families and the need for a family-centred approach to diagnoses, intervention and support,” she says.
“This is also an opportunity for me to finally meet with international mentors whom I’ve been networking with via social media. It is an opportunity to also share the unique challenges we face here in South Africa.”
Petersen needs to raise R20000 to cover all her travel expenses before she can confirm her attendance early in January.