Mipla Binna - Kyleigh's story

Transcript

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.