This series is designed to help parents manage specific aspects of bringing up a child with a different learning path. This month we’ll be looking at what parents and specialists have to say on raising children who are deaf or are hard-of-hearing. The following article on hearing loss and sports can be found here.
Studies show that over nine out of ten deaf and hard of hearing children are born to hearing parents. This makes identifying hearing loss and adapting very difficult for families. We spoke to two mothers of deaf children who are happy to share some advice.
The Silent Handicap
Hearing loss is invisible. Many children can go years without ever being diagnosed. Bianca Birdsey, medical doctor and mother to deaf twins, recalls being politely hushed when she expressed her concerns. When she noticed oddities in her children, “people would say “it’s their normal!“” she recalls. “They would think I was paranoid because I worked in paediatrics.” Bianca even asked a day care teacher if they noticed anything unusual about the twins, “and at the end of the day, she said “there’s nothing wrong with them”!
It took a dramatic scene in a public setting, with one twin crying for her mother, who was standing a few feet behind her, for Bianca and her husband to confirm their intuition: the girls just couldn’t hear. Stories like these are apparently quite frequent in South Africa. Bianca says many children there aren’t diagnosed until as late as five or even later.
Of course, diagnosis can differ greatly from one country to another. Tara Teo, founder of Irisada, gave birth to her daughter in Norway, where children are automatically screened. However, after the first check the nurses told them to come back two weeks later, as there might simply be “water in the ears.” The next test was also inconclusive, mainly because her daughter was too agitated to get good readings. It took an additional two months to finally get consistent readings of one ear and discover Heidi was profoundly deaf.
The Language Barrier
Why is an early diagnosis so important? The first two reasons are linked to how the human brain develops at that early age. Firstly, the early months and years of a child’s life are those where the brain learns how to structure language. If they are diagnosed too late, they may have missed this critical phase and be left with learning difficulties.
Why? Because deaf children can only access language via visual aides until they are taught sign language or have hearing devices (if their family chooses to). Most families don’t sign at home unless there is already a deaf family member. This means that until a child is diagnosed, they often have absolutely no means of communicating and structuring thought with others.
The second very important factor, is that a child’s brains learns early on how to differentiate frequencies, especially to pick out human voices from other sounds. Tara’s daughter was given hearing aids and cochlear implants at a young age, but she needed lots of additional speech therapy to learn what to listen to in a sound. She’s also working hard to reproduce speech sounds, as she wasn’t exposed to them as early on in the belly as other babies.
Follow Your Child’s Lead
Both parents stress the amount of pressure they were under. “You’re making all these decisions for them” says Bianca, and some people have very set opinions on what is best for deaf children. Some of these decisions can be expensive in many countries, which can make it even harder. There can also be an impression that once your child has aids or implants, things will just miraculously get easier. In fact, the operation or “switch-on” is often just the beginning.
The mothers both laughed when they recalled their children’s reactions as the implants were turned on: pure horror! Bianca even jokes that there’s no point spending hours thinking up the first sentence you’ll speak to your child, as they won’t have a clue what the sounds mean! Imagine coming from a world of silence into a world of continuous noise. A great deal of energy goes into adapting to hearing.
Mothers with a Mission
Bianca’s advice is to “trust yourself”. Don’t let yourself get caught up in the politics around deafness, just follow your child’s lead. “There’s no right or wrong choice”, she says “as long as your child is progressing”. In Bianca’s case, meeting and socialising with deaf adults broke the spiral of grief. In part because she came to terms with a realigned vision for her twins’ future, and also because she was able to master sign language faster. Learning to sign, as a family, allowed them to bond like they never had before.
Tara, meanwhile, was frustrated with how difficult it was to get adapted headbands for her daughter as Heidi’s ears were simply too small to keep the devices in place. She spent hours online, searching for something that would keep the implants in place. She realised there was a gap in the market, and how useful it would be to be able to provide a small solution that could have a potentially huge impact. She felt how wonderful it would be if parents free up time they were spending sussing out where to find special products, to spend with their children instead. With this conviction and simple goal in mind, she founded Irisada, the very platform you’re reading on now.
Some additional links for parents looking for more information. Please also suggest more to us, which we can add to the list.