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Unread 05-02-2011, 12:35 PM   #1
AJWSmith
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Unhappy <waves hello> o/ I'm AJW and I'm struggling with my deafness

Salutations AllDeaf.com

I'm so pleased to have found this forum. It appears to be a very friendly and welcoming community. It could be the answer to my prayers as I am struggling with my deafness at the moment and I'm looking for people who can understand what I'm going through.

I was born with severe-profound hearing loss in both ears. My parents and wider family are all hearing and I was bought up to be oral and mainstreamed. With my HAs and lip reading skills, I was able to survive in the hearing world. I now have a hearing wife, hearing kids and hearing friends who I love and they love me in return.

But it has been a struggle to stay afloat in the hearing world. And recently my hearing has declined and I'm failing to follow conversations I used to be able to participate in, even though I'm using the latest technological hearing devices, along with 110% concentration. I can now only communicate with hearing friends on a 1-to-1 basis and being in a group makes me feel lonely and frustrated.

So I'm wondering "What's the best way to cope with this?". There are times when I'm extremely angry. I also get very depressed. How do I find peace and acceptance?

So here I am on AD looking for people who are/have been in a similiar situation and want to know their stories and coping strategies. I'm open to learning BSL, but I'm not very good at learning new languages. Could I end up feeling excluded by fluent BSL users in the same way I do by a group of "hearies"?

If you don't want to repeat yourself, then feel free to point me to the thread where you've already written and I'll go there. I'm looking forward to getting to know some of you better in the future.
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Unread 05-02-2011, 03:11 PM   #2
Bottesini
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Hello. I am sure you can find lots of help here as there are many in your situation . There is a thread for late deafened people and I will post the link below. :http://www.alldeaf.com/our-world-our...-deafness.html
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Unread 05-02-2011, 03:42 PM   #3
AJWSmith
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Originally Posted by Bottesini View Post
Hello. I am sure you can find lots of help here as there are many in your situation . There is a thread for late deafened people and I will post the link below. :http://www.alldeaf.com/our-world-our...-deafness.html
Thank you Bottesini. This thread was also mentioned following a post I made elsewhere. I've now starting reading it though it will take me a few days to finish as there are 34 pages on it! I've found some useful and moving stories on it. Thanks again
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Unread 05-02-2011, 06:02 PM   #4
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...welcome aboard!
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Unread 05-02-2011, 08:51 PM   #5
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to AD.

Went through the same struggles and feelings as you did until I learned ASL and got involved with the Deaf community.

Hope all goes well for you!
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Unread 05-02-2011, 09:06 PM   #6
Bebonang
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Quote:
Originally Posted by Bottesini View Post
Hello. I am sure you can find lots of help here as there are many in your situation . There is a thread for late deafened people and I will post the link below. :http://www.alldeaf.com/our-world-our...-deafness.html
He was born profoundly deaf like me.

I can understand his situation as I struggled trying to comprehend in the hearing world. Not as easy as ABC.
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Gegiibishedjig (Deaf Person)

You speak to me on lip..
I don't speak..
I sign with you..
You gesture..
I can't hear you..
You can hear me..
You can see and I can see..
-Smell, Sense, Taste, Feel and See-
Was born with broken ears..
I was not perfect, but I am used to being happy and Deaf..
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Unread 05-02-2011, 09:07 PM   #7
Bebonang
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to AllDeaf forum. I hope you have fun reading and posting all the threads here. See you around here.
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Gegiibishedjig (Deaf Person)

You speak to me on lip..
I don't speak..
I sign with you..
You gesture..
I can't hear you..
You can hear me..
You can see and I can see..
-Smell, Sense, Taste, Feel and See-
Was born with broken ears..
I was not perfect, but I am used to being happy and Deaf..
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Unread 05-02-2011, 09:15 PM   #8
whatdidyousay!
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Quote:
Originally Posted by Bebonang View Post
He was born profoundly deaf like me.

I can understand his situation as I struggled trying to comprehend in the hearing world. Not as easy as ABC.
And me too! I was born profoundly HOH and left very left out growing up in a hearing family and world!
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Unread 05-02-2011, 09:36 PM   #9
Bottesini
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Originally Posted by Bebonang View Post
He was born profoundly deaf like me.

I can understand his situation as I struggled trying to comprehend in the hearing world. Not as easy as ABC.
I just commented on how great I am at English in another thread.

Sorry. We had a long week so far here and I am not up to par.
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Unread 05-02-2011, 09:38 PM   #10
Bottesini
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I really can read AJWSmith. Just jump in and I am sure you will learn a lot. There are also a lot of people like you here, even I misread it the first time.
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Unread 05-02-2011, 10:02 PM   #11
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Quote:
Originally Posted by Bottesini View Post
I just commented on how great I am at English in another thread.

Sorry. We had a long week so far here and I am not up to par.
You are not alone, Botti. I do make mistake when I thought I had different thread before. I did not know that you are responding to someone else instead of the OP's thread here. You are right, it has been a trying week with the storms (snow, tornadoes and lots of winds), birthdays, Obama's birth certificates and the terrorist that killed many Americans last September 10, 2001.

I am glad that you posted to let us know what happened. Also I am glad I straightened out this mistake.
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DEAF SINCE BIRTH

Gegiibishedjig (Deaf Person)

You speak to me on lip..
I don't speak..
I sign with you..
You gesture..
I can't hear you..
You can hear me..
You can see and I can see..
-Smell, Sense, Taste, Feel and See-
Was born with broken ears..
I was not perfect, but I am used to being happy and Deaf..
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Unread 05-03-2011, 12:12 AM   #12
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Hello you and welcome.

I'm sure if you poke around you'll find plenty of threads that relate to what you experience.
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Unread 05-14-2011, 11:16 PM   #13
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Welcome AJWSmith to alldeaf.COM forum. Various ideas are discussed- as you probably already discovered;

I somewhat parallel your "hearing journey" Profound loss-almost 45 years both ears. Lost first: right/ Feb/92 finally left Dec/06. Then started the process re: Cochlear Implant. Whether that step is "suitable for you-?"or learning BSL? No easy task no matter which course you take.
Much success in the future.

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Last edited by drphil; 05-14-2011 at 11:28 PM. Reason: additional note
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Unread 05-15-2011, 02:03 AM   #14
overthepond
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Hi AJW, Welcome.

I am from Blighty too. I was born profoundly deaf and BSL was my first language. I am now fluent in English (it's my main language these days), BSL and SSE. I have been brought up in Hearing world, I spent 5 years at boarding Oral deaf school so I pretty much had learnt to cope with hearing world and it can be hard at times. It got worse in the last 10-13 years when I was strugging with lipreading, changes in hearing aids from analouge to digital which didn't benefit me even my hearing loss was stable. I was getting so tired and couldn't cope with full day's work, so I went down the CI route nearly 4 years ago. Since I had it fitted, I am much more chilled out person (that my mum wished i had it done years ago, ) I am much less tired, I can now cope with 2 jobs! (:-)) one is full time at a hearing school and another is evening work at largest/busiest/noisest superstore, no one knows where i got the energy/patience from!! My CI had aided me to lipread much better than before (pre was 40%, post is 90%), I don't think I would be where I am today if it wasn't for the CI.

As for BSL in hearing world, I think learning BSL will help as you'll be surprised how many people had learnt BSL, I had few hearing people signing to me on the tills where i work even though I was speaking to them. With BSL you get best of both. It doesn't have to be BSL you could learn SSE to work with your spoken english. SSE is very similar to BSL but is in the correct order of grammar/stynax along with spoken language. Try make a hobby of it and see how you got on...

Did you say you live in london? If you do I can point out places for you, there is LOADS of deaf people in London (I was born there and have a lot of friends from the deaf school that is now living in London (they are both oral and BSL users).
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Unread 05-15-2011, 03:35 AM   #15
AJWSmith
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Yes I live in London, UK

Quote:
Originally Posted by overthepond View Post
Hi AJW, Welcome.

I am from Blighty too. I was born profoundly deaf and BSL was my first language. I am now fluent in English (it's my main language these days), BSL and SSE. I have been brought up in Hearing world, I spent 5 years at boarding Oral deaf school so I pretty much had learnt to cope with hearing world and it can be hard at times. It got worse in the last 10-13 years when I was strugging with lipreading, changes in hearing aids from analouge to digital which didn't benefit me even my hearing loss was stable. I was getting so tired and couldn't cope with full day's work, so I went down the CI route nearly 4 years ago. Since I had it fitted, I am much more chilled out person (that my mum wished i had it done years ago, ) I am much less tired, I can now cope with 2 jobs! (:-)) one is full time at a hearing school and another is evening work at largest/busiest/noisest superstore, no one knows where i got the energy/patience from!! My CI had aided me to lipread much better than before (pre was 40%, post is 90%), I don't think I would be where I am today if it wasn't for the CI.

As for BSL in hearing world, I think learning BSL will help as you'll be surprised how many people had learnt BSL, I had few hearing people signing to me on the tills where i work even though I was speaking to them. With BSL you get best of both. It doesn't have to be BSL you could learn SSE to work with your spoken english. SSE is very similar to BSL but is in the correct order of grammar/stynax along with spoken language. Try make a hobby of it and see how you got on...

Did you say you live in london? If you do I can point out places for you, there is LOADS of deaf people in London (I was born there and have a lot of friends from the deaf school that is now living in London (they are both oral and BSL users).
Pleased to meet you overthepond. Yes I do live in London and I would be interested in meeting deaf people. I don't know any BSL so I could only communicate with oral deaf at the moment. However I'm seriously considering learning BSL, perhaps starting evening classes in Sept. This afternoon I'm going to attend Talking Hands Fellowship, a deaf church that meets in London. This will be my first deaf social event I've ever attended. Thank you for introducing yourself overthepond.
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Unread 05-15-2011, 04:26 AM   #16
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Welcome!! I too come from Britain!! My hearing loss was confirmed as severe-profoundly deaf at 9 months but my mum suspected I had hearing loss from 7 months. Spoken English has always been my first language growing up, although it took me many years to learn to speak. I went to a school for the deaf and was put in an oral class, and I did great, loved the school and mainstreamed some days at the local mainstream school with just an FM system. Even though I had the littlest amount of hearing loss, I compensated by lipreading, reading body language and looking at other kids' work. Anyway my hearing was bad enough for a CI, so myself and my parents decided to get me an implant at the age of 10 1/2 and even since my listening skills has improved. I can hold conversations without lipreading(in quiet environment), I work in a hearing nursery and I don't do too bad understanding the kids. I have never really been involved in the Deaf community, my signs are not that fluent enough etc.
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Unread 05-15-2011, 04:51 AM   #17
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Quote:
Originally Posted by Lissa View Post
Welcome!! I too come from Britain!! My hearing loss was confirmed as severe-profoundly deaf at 9 months but my mum suspected I had hearing loss from 7 months. Spoken English has always been my first language growing up, although it took me many years to learn to speak. I went to a school for the deaf and was put in an oral class, and I did great, loved the school and mainstreamed some days at the local mainstream school with just an FM system. Even though I had the littlest amount of hearing loss, I compensated by lipreading, reading body language and looking at other kids' work. Anyway my hearing was bad enough for a CI, so myself and my parents decided to get me an implant at the age of 10 1/2 and even since my listening skills has improved. I can hold conversations without lipreading(in quiet environment), I work in a hearing nursery and I don't do too bad understanding the kids. I have never really been involved in the Deaf community, my signs are not that fluent enough etc.
Hello Lissa. Great to meet another Brit here on AD (though I'm hugely enjoying meeting folks from all round the world as well). It has been suggested by my ENT consultant to explore the CI option, so your story and blog was interesting to read. It's important that I gather as much information as possible to work out the best way forward for myself. Thank you Lissa for taking the time to read my thread and posting on it
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