Sandra (mother of 3 children, 1 with hearing impairment): From the first time he was diagnosed, there’s a local early intervention group, and I had pretty much rung them straight away, and I said ‘I think my child might have hearing loss, can I come and talk to somebody?’ So even in that time prior to getting his hearing aids, we started to get connected with other parents and connected with professionals to help get things started.
Professor Greg Leigh (Director, Renwick Centre, Royal Institute for Deaf and Blind Children): There is a wide range of professionals who will be involved. Certainly the early intervention workers and the people who are providing the early intervention programs, will be central in information provision, as will of course audiologists and speech pathologists and ear nose and throat surgeons, who are all involved in the process of engagement with families, providing information, answering those important questions
Michelle Disbery (Head of Early Childhood Services, Royal Institute for Deaf and Blind Children): When we’re working with families with newly diagnosed babies, we’re certainly spending a lot of time just on parent education and working with the family to help them understand what hearing loss means for their child, what they might be hearing with their hearing aid, little strategies to help them look after their hearing aid, keeping the hearing aids in, or the cochlear implant on. If they’re going for cochlear implant, what they might expect in terms of the surgery and moving forward with that.
Sandra: We got a letter from the ear, nose and throat specialist to say he needs to be fitted with hearing aids. We now had several tests that were proving that he had a hearing loss. So we went to Australian Hearing and he was fitted with hearing aids. So he was two years and nine months when he was fitted with the hearing aids for the first time.
Greg: All children, when diagnosed with a hearing loss will be fitted with a hearing aid. It’s important from the earliest possible stages that the auditory system is being stimulated, that the children are getting access to sound.
Sandra: The day he got his hearing aids – I’d been told that some kids will just rip their hearing aids out – so we planned for five minutes of hearing aids in. And he wouldn’t put them in in the city. And I thought, ‘Right, good start.’ And we came home, and we put his hearing aids in, and he walked into the playroom and he bumped this Wiggles guitar. And he started to laugh. And I realised he had thought this toy was useless because he’d never heard what it could do. And he pulled out his box of musical instruments and he grabbed and played each one, and he was just laughing. And it was really astonishing that within a really short space of time, how quickly he started getting sentences together.
Greg: How your child is ultimately going to communicate will often be a question that will arise. For the vast majority of children with hearing impairment now, the answer to that will be spoken language communication, without question. For some children of course there will be other reasons why an alternative mode of communication will be the most appropriate.
Sandra: We chose also to learn Auslan, because I didn’t know at that stage what was going to happen to Lachlan’s hearing loss. I also thought that it would help – anything that would get language into this child was important. And it’s also great because hearing aids only work for a metre in front of a person, in a sort of cone shape, so they can hear a conversation. So if your distance gets greater, if you aren’t wearing a specialised microphone – and most of the time, perhaps, you won’t be – your child is not going to hear you. So for us, in our family, having signs for ‘Come back here’ or ‘Stop that’, those kinds of things, can be really helpful to keep your child safe.
Michelle: The activities are primarily based o goals which are agreed upon by the teacher and therapist, and the parents, as being appropriate to that child’s age and stage of development. So typically the activities will be very child-centred and playbased. And it’ll be based around experiences that are really relevant for the child. So, it might be a cooking experience or it might be sharing stories. It might just be a simple turn-taking game. But all the activities are really targeted to foster communication and language development.
Sandra: He was having twice-weekly speech therapy and twice-weekly CHAT sessions. And they really helped to plug the holes in his knowledge. In the early days they would see that he was making two-word utterances. So we’d be modelling three-word sentences. Playing games with him, helping him to make sense of what he could hear.
Michelle: Certainly one thing we encourage parents to do is to draw children’s attention towards sounds. So really saying ‘Oh, did you hear that? I heard the doorbell.’ Or ‘I can hear the postman.’ Playing games with sounds and really drawing the child’s attention to it. So you’re really focusing in on learning to listen and paying attention to sounds in the environment.
Greg: What we now understand also, in particular for spoken language communication, is that we lay down the pathways for listening in our sensory systems and in our brain at very early ages. And it’s important that we stimulate those pathways and get those processes working from the earliest possible time. There are other sorts of support as well – parent support groups or in particular some support websites. The Aussie Deaf Kids website, for example, is a great source of information. Connecting with other families is always going to be a great source of support and information. Asking questions of whoever – whether it’s the medical professionals, the early intervention professionals that you’re working with, to ensure that you’ve got the best possible information that you need, to provide support for your child – is really an important part of the process.
Sandra: Lachlan is now six, he’s in prep, and he’s at our local primary school. He’s now doing beautifully. Academically he’s right on track, he’s making friends. So far, so good. We’re now at the beginning of term two, so still in the early days of school but so far it’s been a really good choice for him.
Michelle: My advice to parents of children with hearing impairments is ‘You’re not alone.’ There’s a lot of services out there for you to access. Get in touch with an organisation that can provide you with some early intervention, or at least try and steer you in the right direction.
Greg: I think you can feel well confident that the path ahead will be well supported by people who are there to provide the information, the support and the services that will be necessary, to ensure that the future will be a very positive one for your child.