World of deaf children
“In wealthier countries early intervention for babies with hearing loss is standard therapy because it gives these kids such an advantage — an advantage South African babies were losing out on entirely,” she says.
She travelled to the United States’ Utah State University, which had one of the most reputable early intervention programmes for hearing loss in the world.
“I thought, why spend money developing an entirely new programme? Let’s rather replicate a successful existing one. And when I returned to South Africa in September 2006, Hi Hopes was born,” she says.
The nongovernmental organisation, based at the Centre for Deaf Studies, is a community outreach programme that gives home-based support and information to families of children with hearing loss.
Hi Hopes’ interventionists, of which there are more than a thousand across the country, support families with information about, for example, sign language and other communication skills to give these children “every opportunity to develop naturally and enjoy the same opportunities as their hearing peers”, she says.
To do this most effectively, she says, hard-of-hearing babies should be identified between three and six months of age. But, according to Storbeck’s research, more than 80% of babies with hearing loss are diagnosed after the age of two.
“This has profound developmental impacts — delaying cognitive, emotional and social development,” says Storbeck. “There is evidence that hearing babies can recognise their parents’ voices in the womb already, so even at birth deaf babies are at a disadvantage and have missed out on learning and on the emotional connection with their caregiver.”
In the US babies are screened for hearing loss at six weeks, three months and six months as a matter of national policy but in South Africa no such policy exists.
“Here we only refer to an audiologist at an individual doctor’s discretion and honestly many doctors are not aware of the signs to know when these referrals are appropriate,” she says. “I’ve heard countless stories from parents in Hi Hopes about paediatricians not referring these babies because they think the mother is being paranoid — delaying the process and setting the child back months and sometimes even years.”
Her research indicates that, even without a national screening programme, if doctors in the private and public sectors were more aware of the early signs of hearing loss “we would be identifying these babies in much higher numbers and much more quickly than we are doing now”.
Hi Hopes connects with families by word of mouth and the few medical professionals who consistently refer families with babies with hearing loss to them.
Since 2006 the organisation has assisted more than 1 700 families in four provinces (Gauteng, Western Cape, KwaZulu-Natal and Limpopo) with support and skills to cope with raising a small child who cannot hear adequately.
“The beauty of the programme is we come to you in the place you are most comfortable,” says Storbeck. “Our early interventionists have also been trained in dealing with the emotional trauma these families often go through.”
She says many families feel overwhelmed by the medical terminology and different options they are given and struggle to “know what the right choice is”.
“We’re unbiased, so we tell our families there is no right choice and we give them as much information and help as possible to make these decisions easier,” she says. “Imagine being told different and complicated things from an audiologist versus an ear, nose and throat specialist — many of our parents struggle to relate to doctors but we try to empower them with the information and skills to do this.”
Deafness, unlike blindness or other disabilities, is invisible. “You can’t immediately see when someone is deaf and this is a large part of the reason why it’s so low on the agenda across the board,” says Storbeck.
“We are trying to raise this visibility and change the way families interact and think about their children with hearing loss — so they no longer feel like victims.”
Hi Hopes fundraises to support its work. Storbeck says their activities could be extended with more “regular and substantial” funding.
For Millicent, one of the greatest dilemmas was choosing between communicating with her son through sign language or cued speech.
Cued speech is a “visual mode of communication in which mouth movements of speech combine with physical cues which represent sounds of traditional spoken language”, according to the National Cued Speech Association.
Storbeck says that about 50% of the families in Hi Hopes choose to communicate with sign language and the other half choose cued speech, but “there is a growing number of families who choose to use both, so that their kids can decide for themselves which medium works best for them”.
The advantage with cued speech is it allows people with hearing loss to communicate in the languages of hearing people, whereas signing is a unique language for deaf people “that they can own”, says Storbeck.
“To a hearing person cued speech may look and sound strange but it has an advantage in the hearing world because you’re adapting the language already in use. With sign language, it is the deaf community’s own language, which has been in use for much longer, and requires learning on the part of a hearing person in order to communicate,” she explains.
Millicent learnt sign language and uses it — along with speech — to communicate with her son. “It was hard to learn a completely new language but it was worth it,” she says.
Tumisho, who is in his last year of primary school at St Vincent School for the Deaf in Rosebank, can transition easily between speaking and signing with the help of a hearing aid.
“But sign language suits him best a lot of the time – it’s how he talks with his school friends also,” she explains. Children stay in the programme until they are three or four years old, but the early interventionists are available to families for many years afterwards.
“Tumisho left years ago but I still ask Hi Hopes for advice all the time. “I can’t believe the change in my boy during our first years with them. I never thought my child who they told me was deaf would love to sing and dance the way he does.”
The young mother pauses to reflect. “He is going to school. I mean, when I first found out about his hearing I wondered if I would be supporting him for the rest of my life. But each year he graduates a year of school I send a picture of him to Hi Hopes, and I’m sure now that I’ll be sending them one every year until he passes his matric.”