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The_Stuarts View Drop Down
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    Posted: 18 January 2008 at 1:44pm
OMG my sister just got back from the specialist and found out her 6 yo has auditory neuropathy a hearing disorder in which sound enters the inner ear normally but the transmission of signals from the inner ear to the brain is impaired.

They've been to several doctors and specialists in the past 3 years because they thought he had hearing problems but this is the first time anyone has listened to them and actually done the tests and diagnosed him.

He's lucky he's so bright (that's not me just being a proud aunty, really he is) because part of the issues people with this disorder have is focussing on sounds and making out words from them when there are other noises around them - like in a class room.

He's always had difficulty with his speech - now we understand why - and if he was watching tv for instance we'd have to put it on mute before talking to him otherwise it's like we're not even there (and here I thought he just had selective hearing).

I can't believe it took this long and so many different doctors and specialists to pick up on something he's had since birth

Now my sister needs to figure out what to do about his schooling etc to ensure he gets the best education.

Anyone else know any children or adults with auditory neuropathy?
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caraMel View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote caraMel Quote  Post ReplyReply Direct Link To This Post Posted: 18 January 2008 at 3:12pm
Wow, what shocking news for your family! I'm sorry its been such a battle for them to get help and answers.

I don't know anything about auditory neuropathy sorry, but my father is profoundly deaf and has been for most of my life.
He now works as a social worker/advocate for deaf people, particularly children, in Wales.
He is a big fan of the Deaf Association here in NZ, they offer great practical support, advice and community for deaf people and their families. They also have social groups, events and clubs for deaf and hearing impaired kids. They'd be a great place for your sister to contact.

Hearing aids are awesome now and practically invisible so if he needs them they won't be obvious to the other kids.
Have they discussed whether a cochlear implant would help your nephew?
My father had one of these put in 2 years ago after 50 years of progressive hearing loss and he can hear almost everything we say now. I hope this is an option for your nephew

I hope at least some of this is helpful to you! Big
Mel, Mummy to E: 6, B: 4 and:

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sparkle View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote sparkle Quote  Post ReplyReply Direct Link To This Post Posted: 18 January 2008 at 3:19pm
I'm not too clued up on the terminology either. But DH's brother is deaf, as is his wife to be. They are very big into the deaf community and the Deaf association. From what I know it's a very supportive environment.
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The_Stuarts View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote The_Stuarts Quote  Post ReplyReply Direct Link To This Post Posted: 22 January 2008 at 9:27am
Hey thanks for your replies.

Debs is looking into hairing aids and the cohclear implant but it's a bit of a hit and miss with auditory neuropathy. Sometimes one or the other work brilliantly and at other times not at all.

She contacted the NZ Deaf association and is organising for us all to learn sign language.

Josh can still hear but sometimes can't process the sounds into words. He particularly has issues when there are background noises (tv/classroom/dinner table etc). It could get worse or could stay the same - we'll just have to wait and see.

He's been doing speech therapy for 18 months and when his mum asked him about how he knows what the tutor is saying he explained that he doesn't, instead he just watches her mouth and then does the same thing with his own - clever kid!

I'm pretty sure he's playing on it now though so we'll have to be careful about that. He only found out on Friday and has been getting by ok for the past 6 years. Yesterday he was at my house and when I asked for a hug he heard me and understood me but when he made my baby cry and I asked him what had happened suddenly he was deaf as a doorknob.
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Maya View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Maya Quote  Post ReplyReply Direct Link To This Post Posted: 22 January 2008 at 9:31am
I don't know much about auditory neuropathy but my stepdaughter has a "moderate to severe" level of hearing loss. She had grommets which fell out leaving her ear drums perforated and kept getting infections, she's had three operations to patch the holes but they've been unsuccessful so now they are just focussing on preserving what hearing she does have left. She can't use hearing aids as there is to much fluid in her ears so they wouldn't help.

We have found that Special Education Services (SES) have been great, they have access to all sorts of resources and support, the school referred us to them and they even provided Mona with a teacher aid to help with her learning as she had gotten behind coz of her hearing.

Best of luck to your nephew!
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