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Mixxx

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I have a 10 year old boy who I have just discovered, 2 days ago is hearing impaired. This has come as both a great shock and somewhat of a relief, as I have known for a long time something's not quite right with him, but couldn't put my finger on what.

School has (naturally) been a nightmare, his behaviour difficult. He is a very determined person (I love that about him) which means he can be draining and persistently so. Most people run out of complete patience with him.

He was diagnosed with ASD when he was 5, which is very early, and which I never completely believed, because he is extremely social and chatty, and craves spontaneity and variety (not something you would associated in general with someone who has Aspergers). He is creative - incredibly so - and loves the challenge associated with maths ... hates reading, writing and anything to do with language, but if he is given an opportunity to write and not regard spelling, he does extremely well with stories.

Anyway, that's him. What do you do when you find out at 10 that your child has a 60% hearing loss?

Any advice is most welcome!
 
Give him support????

Encourage talents???

All I can come up with at the minute....

Will come back if I think of any more....
 
That goes without saying... :)

I'm a very supportive Mum. He LOVES music, and has just moved schools (before we knew what was happening - so that's been interesting) and they are very supportive of the news they received today. He has just taken up the trumpet and put himself in the choir he loves music so much.

He has always enjoyed TV excessively, I think he likes to watch the social interactions, colours and movement. He's not one for computer games much, but kind of likes the Ipod. Writing and Art is something he's also good at.

He's afraid of the journey ahead, but excited. As am I.
 
That's good though if you are supporting him (of course I state the obvious but I'm naturally stupid) :).....

That's brilliant if he's taken up something he loves....He's finding the lesson that just because your deaf doesn't mean you can't do what you love....

I'd love to be able to hear music but i'm profoundly deaf.....I also love writting and art....

I think we all get scared of what's ahead but if he's excited as well who knows what may come.....
 
We have been called back to take the test again... the test was done twice on Saturday, twice I witnessed the same results (pretty conclusive). Not sure why we are being asked back again...but what I saw is a little boy who heard nothing (which I heard loud as day of course - through the headphones and out into the room!). If he did hear it, it took time to register. There appears to be no cochlear or middle ear issues going by the pressure tests done... so weird, and obviously very concerning too :(.

I have so many questions: is it perm, hereditary; what caused it, will it get worse, has it always been there or is it something we've just noticed. He had Shingles at age 5. I read something last night that said that this could have caused it... all new, all weird.
 
I believe you're a great mom, but don't call it "hearing impaired" 'cause being Deaf is awesome and he will learn that if you teach him that this is a culture and there's nothing wrong with it.

Welcome :)
 
First and formost listen to your Doctors and specialists. Find out what they recommend. It may be that hearing aids will work for quite some time and then again maybe not. Also there is the CI which seems to have proven advantagious with many people. Again it's not the end of the world, just the beggining of a new experience for you and him. Support and understanding are what you both need now. His problems with language are most certanly due to lack of comprehension. Hears but does not comprehend.When his teachers and he, realize that, I'm sure more can and will be done. Most likely he will learn to enjoy reading and writing as you said when he does not worry about spelling ( so what, not a big deal as we know the first and last letter most likely give the meaning of the word) he enjoys writing. I am a lousy speller and have to have a dictionary at hand all the time and when I'm writing like this I sometimes just let it go. I'm a retired teacher, high school and no not english, I've worn hearing aids for over 50 years and now to the point of getting my CI turned on in the morning. Cant wait to see if/what I might hear. Got a new HA in my left ear and hearing all sorts of things that I'm trying to identify so it's going to be an interesting journey. We were down in your wonderfull country several years ago, Very friendly people and we enjoyed the visit and will always remember our wonderfull time there. Love the little Joeys and was supprised at the kawala ?fur?? not sure what one would call it but more like a pigs bristles to me. :) I hope maybe I've been a little help and will try and watch this thread incase I can be of any help. Lots of great people on this site.
Best Regards and luck R
 
Mixxx said:
We have been called back to take the test again... the test was done twice on Saturday, twice I witnessed the same results (pretty conclusive). Not sure why we are being asked back again...but what I saw is a little boy who heard nothing (which I heard loud as day of course - through the headphones and out into the room!). If he did hear it, it took time to register. There appears to be no cochlear or middle ear issues going by the pressure tests done... so weird, and obviously very concerning too :(.

I have so many questions: is it perm, hereditary; what caused it, will it get worse, has it always been there or is it something we've just noticed. He had Shingles at age 5. I read something last night that said that this could have caused it... all new, all weird.
Click to expand...

THey may be checking to see if it is auditory processing disorder instead of deafness.

And Asperger's people are often extremely outgoing. Just not good at reading other people emotions. This makes it hard to maintain friendship if you are always saying or doing the wrong thing.
 
Hi everyone, thanks for your kind words. Sorry if I am being PIC (politically incorrect).
I had a girlfriend who was profoundly deaf, and you didn't say deaf back then, you said hearing impaired! LOL... it goes in a bit of a cycle, so thanks for your patience with me.

Yes, I did wonder about CAPD, and naturally am very confused what with this and then the Aspergers (paed agreed with me that Aspergers is probably not likely). My son is VERY empathic, again not a trait you see with Aspergers people - there is a lot of questionmarks around the accuracy of that diagnosis. It's very 'chicken-and-egg'... and I will just have to be guided, I gather.

It's ok though, I'm not sad. I did cry and cry, but only because of the HORRIBLE start we have had and what he has been through in the past 4 years. Every time he has ever been yelled out, and shouted at, and mistreated, and bullied over the years - it has all happened to him. We started at a new school last year, due to the mistreatment at his last school, and they promptly phoned me at work and told me to take him away because 'there was something wrong'. We were aghast as this was a catholic school. I ended up taking that one up separately through the Human Rights Commission - and we won (of course). But in the meantime, we had to send him back to his old school, which was awful, and we waited there until an opening came up in the school he is currently at, where he started 3 weeks ago. There are no problems there, it is very nuturing and supportive, a total 'boys heaven' as it were.

He has been manhandled, punched, kicked, locked in a classroom on his own. He has retaliated in anger (so would I!!!), but he is a very sweet boy overall. When the teachers have complained, this has shocked me over the years. They look at me like I am an alien, and I look at them in much the same way. Who knew that all this confusion was due to his inability to hear.

From my pov, it is all good. I am not ashamed, or angry, or even grieving, other than perhaps some small level of regret that this could not have been picked up a lot earlier to make life a lot easier for him.

At night we talk, and chat quietly in the dark (I do this with both my kids) as I work full time, and have very little uninterrupted time. This is their time to offload. He told me weeks ago "Mummy you need to understand, everything is difficult for me, when it is easy for others, and people don't seem to get that". I told him I understood, all the time thinking "but WHY is it so hard?".... he has said for years "Mummy, you know I am deaf don't you?" and for so long we have disregarded his thoughts about himself. Such an insightful, amazing little boy.

Oh I think that once we nail this for him, and get the supports he needs (whether it be deafness due to CAPD or other things), I honestly think he will fly. The great thing is that everyone will stop being so angry at him.
 
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Hello Mixx,
Welcome to AD. I hope you'll find this forum helpful.

How is your son coping with the recent diagnosis?

Yes, you all will have to make certain adjustment in regards to his need. Such as caption on TV or DVD everytime he uses it. Face to face communication so he can lipread and read expressions.

You might consider enroling him into a high school with deaf unit so he can get support such as notetaking and whatnot.

Would he be interested in learning Auslan?

Hope all is good for you.

PS: if you have any questions or help you can contact http://www.deafservicesqld.org.au/

PPS: a list of schools that caters to the need of deaf kids in Brisbane and surroundings http://www.aussiedeafkids.org.au/qld.html
 
Hi!

I hope everything will works out for you. Anytime you have a question about deafness, we are all ears and ready to answer you.

My husband's cousin's son is Autistic and we see him frequently. He is a wonderful guy like your little boy.
 
I agree with Miss Delectable...have your child learn Auslan and contact the Deaf community in your area? That way your son can meet others who are like him and wont feel so lonely.

:welcome: to AD!
 
Mixxx said:
Hi everyone, thanks for your kind words. Sorry if I am being PIC (politically incorrect).
I had a girlfriend who was profoundly deaf, and you didn't say deaf back then, you said hearing impaired! LOL... it goes in a bit of a cycle, so thanks for your patience with me.

Yes, I did wonder about CAPD, and naturally am very confused what with this and then the Aspergers (paed agreed with me that Aspergers is probably not likely). My son is VERY empathic, again not a trait you see with Aspergers people - there is a lot of questionmarks around the accuracy of that diagnosis. It's very 'chicken-and-egg'... and I will just have to be guided, I gather.

It's ok though, I'm not sad. I did cry and cry, but only because of the HORRIBLE start we have had and what he has been through in the past 4 years. Every time he has ever been yelled out, and shouted at, and mistreated, and bullied over the years - it has all happened to him. We started at a new school last year, due to the mistreatment at his last school, and they promptly phoned me at work and told me to take him away because 'there was something wrong'. We were aghast as this was a catholic school. I ended up taking that one up separately through the Human Rights Commission - and we won (of course). But in the meantime, we had to send him back to his old school, which was awful, and we waited there until an opening came up in the school he is currently at, where he started 3 weeks ago. There are no problems there, it is very nuturing and supportive, a total 'boys heaven' as it were.

He has been manhandled, punched, kicked, locked in a classroom on his own. He has retaliated in anger (so would I!!!), but he is a very sweet boy overall. When the teachers have complained, this has shocked me over the years. They look at me like I am an alien, and I look at them in much the same way. Who knew that all this confusion was due to his inability to hear.

From my pov, it is all good. I am not ashamed, or angry, or even grieving, other than perhaps some small level of regret that this could not have been picked up a lot earlier to make life a lot easier for him.

At night we talk, and chat quietly in the dark (I do this with both my kids) as I work full time, and have very little uninterrupted time. This is their time to offload. He told me weeks ago "Mummy you need to understand, everything is difficult for me, when it is easy for others, and people don't seem to get that". I told him I understood, all the time thinking "but WHY is it so hard?".... he has said for years "Mummy, you know I am deaf don't you?" and for so long we have disregarded his thoughts about himself. Such an insightful, amazing little boy.

Oh I think that once we nail this for him, and get the supports he needs (whether it be deafness due to CAPD or other things), I honestly think he will fly. The great thing is that everyone will stop being so angry at him.
Click to expand...

:welcome: to AllDeaf forum. The bold is to let you know that you need to have the lights on for your son to read your face (for expressions) and to try to understand what you are saying. Like other Aders, it is better to sign with Auslan so he will understand you and family siblings if you all can sign. Just be supportive. Don't make him left out and be isolated if he does not understand what is being said. As for now, have fun browsing around in all the threads and posting any topic that interest you and discuss or debate with us. See you around here. :wave:
 
Miss-Delectable said:
Hello Mixx,
Welcome to AD. I hope you'll find this forum helpful.

How is your son coping with the recent diagnosis?

Yes, you all will have to make certain adjustment in regards to his need. Such as caption on TV or DVD everytime he uses it. Face to face communication so he can lipread and read expressions.

You might consider enroling him into a high school with deaf unit so he can get support such as notetaking and whatnot.

Would he be interested in learning Auslan?

Hope all is good for you.

PS: if you have any questions or help you can contact Deaf Services Queensland

PPS: a list of schools that caters to the need of deaf kids in Brisbane and surroundings Find a school - Queensland
Click to expand...
Should've said some of these, Miss Delectable but you have come to the rescue ;)
 
Well, it's good to hear that you are not sad about it anymore. There is a great community here for deaf people and like many people we have regular lives. My best wishes to you and your son. I hope nobody will tease him about it and I hope he does not feel ashamed. Who cares who has a hearing aid because look at everyone wearing that bluetooth thing(I have never used it lol, don't really know how it even works). Although his life will be greatly changed, it does not mean he can't do everything hearing people can do.
 
Ah good point about the lights - I might bring that up with him as a suggestion.
He responds well to my voice, and finds it soothing - I maintain a moderate tone when I talk. He has issues with my husband's voice, but that's because its naturally very loud (ie booming). Hubby has started to moderate it somewhat though, and is making a bit of an effort.

A lot of you have suggested Auslan, but he can speak - he's quite articulate and loves a chat. Will conversation not be possible? Oh wow you can see how confused I am.

Thanks for the info miss-delectable. I went to that Aussiekids site before I came here but there didn't appear to be any recent activity there, which is why I came here. We've only just started at a new school - and they are awesome. I'm hopeful for him that we won't have to move him yet again...
 
Mixxx said:
Ah good point about the lights - I might bring that up with him as a suggestion.
He responds well to my voice, and finds it soothing - I maintain a moderate tone when I talk. He has issues with my husband's voice, but that's because its naturally very loud (ie booming). Hubby has started to moderate it somewhat though, and is making a bit of an effort.

A lot of you have suggested Auslan, but he can speak - he's quite articulate and loves a chat. Will conversation not be possible? Oh wow you can see how confused I am.

Thanks for the info miss-delectable. I went to that Aussiekids site before I came here but there didn't appear to be any recent activity there, which is why I came here. We've only just started at a new school - and they are awesome. I'm hopeful for him that we won't have to move him yet again...
Click to expand...



I am deaf and can speak but I still need sign language because I miss out on spoken conversations due to not being able to catch what everyone is saying. Also, lipreading is very very difficult and tiresome especially in the educational setting. I grew up being left out 24/7 at school and out of school until I learned sign language at 25 years old. My life has improved since then because I didnt have to deal with playing with guesswork, misunderstandings, headaches from trying to lipread everyone, and best of all, no more feelings of being left out nor isolation.

Just a heads up because too often too many people make that mistake of being able to speak means the deaf person doesnt need sign language.
 
Ok - wow this is very interesting.
It's late here now, and I put him to bed.
He asked me to lay down and chat.
I said to him 'where? Here or over there' (pointing to the darker part of the bed).
'Nope, here' he said - right under his bedside light.
He gave me a hug and then shared concerns about the next day.
Told me that the lunch hour is totally confusing, and never really gets where everyone sits and what they do at lunch time (this has been an issue since he started school). The library would be an option but its only a few metres squared, and is jammed at lunch time. Plus he likes to be active.

So the tips given so far are good.

We got the audiologist's report tonight:

Bilateral moderate-severe sensorineural hearing loss. DPOAE showed normal inner ear functions. I have looked up CAPD - doesn't sound like him, but I'm not a medic, nor a scientist. I'll be guided by specialists and see what happens from here. He is very advanced in terms of language and understanding for CAPD based on what I have read.
 
shel90 said:
I am deaf and can speak but I still need sign language because I miss out on spoken conversations due to not being able to catch what everyone is saying. Also, lipreading is very very difficult and tiresome especially in the educational setting. I grew up being left out 24/7 at school and out of school until I learned sign language at 25 years old. My life has improved since then because I didnt have to deal with playing with guesswork, misunderstandings, headaches from trying to lipread everyone, and best of all, no more feelings of being left out nor isolation.

Just a heads up because too often too many people make that mistake of being able to speak means the deaf person doesnt need sign language.
Click to expand...
Same here, only that I am 22 going on 23, I am profoundly deaf and I speak too otherwise I need sign language to communicate within the conversations. I am in the similar boat in this partof from shel90
 
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