Getting help early for hearing loss

Mipla Binna Provides information about early intervention services.

Babies learn to respond and express themselves through communication. Communication starts on the day a baby is born. The first five years of your child's life are the most important for development later in life.

Use your face, voice, and body to show your love and make your baby feel safe and aware that you are there.

During this time, your baby will learn about themselves, their surroundings, and the people around them.

It's important to communicate with a baby with hearing loss in the same way as a hearing baby. It is very important that you keep talking to your baby just as if they are hearing you perfectly, because even if they are only hearing bits of what you say or even nothing at all, they are still learning about conversation.

Even if only some sounds are heard, the listening part of their brain will be able to form stronger pathways to help them understand speech better. It doesn't matter that your baby can't yet understand what you were saying. Talking about their interests and reactions is important for their development.

Babies with hearing loss may also need extra support from specialist teachers and others to learn different ways to communicate.

If you need help with the webpage or would rather talk to someone on the phone, please call Queensland Hearing Loss, family Support Service on our TOLLFREE number 1800 352 075 or email us at QHLFSS@health.qld.gov.au.

Moana was diagnosed with a severe to a profound hearing loss. She has some sound coming in at 90 decibels which they've explained to me is the equivalent of a loud band playing or an air being next to an aircraft. So up until her cochlears, she had hearing aids, but it really didn't give her much access to sound.

How did you feel when you learnt your child had a hearing loss?

At first, when they said to me that she had a hearing loss, it took a couple of minutes for it to sink in, and then I'm like, "oh my God, she's not gonna be able to hear the birds. She's not gonna hear the ocean, the cars. What if she gets hit by a car?" And then it all hit me and I just cried and cried and cried. We were just like, " what happens now? What happens now?" And it was a lot of, self blame. All I could think of was, what did I eat wrong or what did I do wrong to have this hearing impaired child?

My husband just kept saying "They give babies like this to the stronger people", and I'm like, "oh my gosh, do we need any more challenges in our life?" but we've accepted it and I think we just accept everything as it comes. So now it's just a part educating people on what hearing loss is and what can be done about it.

What pathway did you decide to take for your child?

When we first had the options of the early intervention services, we went out to the playgroup, which focuses on sign language, and then the other option was, a service which focuses on the spoken and listening skills of the child. And for me, I think when I met the people out there, met other parents that were going through the same journey as us, and listening to their affirmations at how good the child has, how fast the child's progressed is what sort of influenced us in heading down that pathway.

We have a speech session and we know the audiologists, they're just all, all the people that can care for one under one roof.

What have been some of the challenges?

As I was working prior to having baby, I was looking at returning to work and the financial challenges were huge thinking "I was meant to go back to work in seven months. Now I'm not going back to work at all. What, what am I gonna do?" But accessing services Queensland hearing loss support group, and talking with other mums, that helped in a big way.

The challenges of the overwhelming amount of information that you get given in the beginning, but know that there is a bright light at the end of the tunnel.

When she had a "switch on day", which they call a switch and turn the devices on the whole new sound game was a new adjustment for her. So she reacted with a bit of a fright and cried but, ever since the cochlear devices have been turned on and the mapping, as they call it, like a fine tuning of the devices, she's had more reactions to outside sounds now.

So at home we have a lot of musical instruments, guitars and little drums and shakers and maracas, and she plays them in everything she sees or hears for the first time in the look in her faith and is just like, "what's that mum? What's that?" Yeah, it's beautiful.

What advice would you give to other families on this journey?

My advice for other families is to keep going, attend all of your appointments. Be a step ahead of the the specialist, have all your information at hand when you go to an appointment. Ask for a report for yourself. Get a copy of everything. When you go to your audiologist, have the copy of the reports.

Don't be shame to ask questions .On my experience with the hospital. I haven't had anyone make you feel silly, but don't be shy to ask a question and talk to people who have experienced the same journey and you will meet a lot of people that are going through the same thing.

What hopes and dreams do you have for your child?

For Moana, I just want her to be seen as normal and just know that whatever she wants to be, do or be in the future, that she has the same opportunity as anyone else. I've met people along within the last 12 months that have shared experience of other people. There's a pilot that's got a cochlear. There's a doctor that has a cochlear implant. Whatever she wants to do, just to give her that access. That's all I want for her. Just to know that it's normal and you can do the same as anyone else.

Margaret: Our granddaughter, she was born deaf. We went for screenings and we didn't know what the screening was all about. So we went for one, then we were called back to go for another. Then I started asking questions, " what's, what's going on here? What's the screening business?" That was new to me.

Well, she said, "there's something wrong with the baby's hearing." So that's okay, alright then. So they sent us to an audiologist. We went to the audiologist and then they said she was profoundly deaf.

Barry: That didn't stop us loving her, and her growing up to be what she is today and make us really happy.

If she's deaf, she's deaf, and, but we love her just the same.

How did you feel when you learnt your child had a hearing loss?

Margaret: It was most upsetting and for Laqueta to go through all these kind of things when she was a baby.

Barry: Okay it broke our hearts a bit as grandparents.

Margaret: But down the track, We got used to it. We took it under control like, as to say, "okay, she's deaf." So we just got to deal with it, you know, our way, and so we did. We just treated it like any other normal kid then.

Barry: It's frustrating for her too, I can see the frustration in her. She wants to hear, she wants to communicate. All that sadness when it first started, like, "oh no, we've got a deaf child." In a Murri way or an Indigenous context, we sort of put that aside and we surround her with a whole lot of L O V E and, I think that helps.

What have been some of the challenges?

Margaret: Traveling was a big challenge because I've never been that way before. I've never been to that Townsville Base Hospital before. First time for me so that was a big challenge.

Barry: One way we dealt with it was talking to other people who were down there, social workers, Jenny Harris was there. And, even going to this big place, I mean, what planet were on, so where's this big place?

But there were social workers there who helped us and "you go the third floor, blah, blah, blah. Turn right, turn left" and what happened was that being there for a couple of days now, about three or four days, we got used to people, used to the place and Laqueta got used to the environment and we got speaking to the audiologists and the doctors and all that and they were really helpful.

At the early stages of this journey, explaining a little bit more about Laqueta's condition and what options did they were offering at the time. So it was, it was a little bit daunting, a bit frustrated and Laqueta was, we had all these issues too, but as grandparents and we felt the concerns too.

We were there all the way with her and when this journey started and we're still looking for things to help Laqueta still.

What advice would you give to other families on this journey?

Margaret: Take it a day at a time, don't be so, it's sad, but you know, in the long run you'll have people there to help you.

Barry: Sit down as a family and discuss it, discuss your child's issue and concerns and their journey. Share it with the family and so it becomes a family responsibility and also extend that in the community. But certainly as a family unit we can all be supportive going to the appointments or going away on visitations.

Margaret: So don't do it yourself, you got a family. Get all the family together and get your help that way and from the services that our indigenous people have. There are a lot of services out there. We didn't know.

Barry: So many options, there are other people out there want to help. Explore avenues of funding or other support things that'll support your child. There are things available these days that wasn't in our day growing up and people are out there to help in a Murri way or or indigenous way, TSI away or whatever that cultural component must be at the heart of it, Laqueta's in the middle, then we just build this big campfire around her and all these journey parts go along there but it's joined to Laqueta, not us. And thanks to people out there who really helped us and who took time to sit us down and meeting people in the know, like the Alma's and the, the deaf services, we are all gonna be part of, Laqueta journey and just never give up.

What hopes and dreams do you have for your child?

Margaret: That Barry will get up dance when she, you know, "Popeye!".

Barry: I'd want her to also don't be excluded from anything from society and people with that type of if you like, disability hearing or deaf can live normal lives. Can go to school, can go to learn, can communicate and in later life, I'd like to see her show a little bit of independence and go for a job, apply for her on flat and live normal life as with everyone else in Australian society.

I can smile today because I know that down the track, my biggest hope and dream and aspiration is that Laqueta will communicate with us. And that'll be the day that we look forward to.

Margaret: Yeah. Big party.

Barry: She not won't be binnagurri (deaf) then she be good.