CAPD terminology (Audi says I'm "hearing impaired.")

TXgolfer said:
Not sure what this has to do with CAPD or Auditory pathways. But anyway...There was very little interest. Possibly because it was the A's :dunno: We moved the game back to Aug 20th (the original date was the 13th not the 11th) ....still very little interest. I ended up buying 26 tickets, one more than the minimum for a group since I had already put up a deposit. The cost was only $358 after fees so I didn't really need help with that. :lol: I didn't bother people who offered. However if you want to send money feel free. :)
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Alright.... That has went by a long time ago.
 
jillio said:
Yep.

I suppose it could, but the symptoms really don't cross.
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This is a stickler for sure. My neice was diagnosed with Aspergers. She is HoH with the same hereditary inner ear nerve damage that me, my father, my uncle and grandfather all have. My sister (neice's mom) was diagnosed with the same hearing loss a few years ago (the hearing loss is hereditary but we are all not born with it. It can happen at anytime).

My neice lost her hearing when she was 4. She displayed the same exact behaviour I did when I was growing up. We would both shy away from groups (could not understand what was being said, and would dive into books). My father lost his hearing in college.

In any case, my sister is adamant that me, my father, grandfather and of course, her daughter must all have Aspergers because we all share the same behaviour characteristics as her daughter. We all have one thing in common, severe hearing loss. So, of course, we are going to behave the way people do when they cannot hear what is being said. She doesn't know I was already evaluated for it and I do not have Aspergers - I share some of the characteristics of Aspergers, but I do not have it.

So, she has "conspired" with our mother and now they both believe I am just in denial and that yes, I have Aspergers :roll:

Me and my neice both just :roll: (and my dad too).

She was told by one specialist that no, her daughter does not have Aspergers, that she is just displaying characteristics of a person who has a severe hearing loss. This was not good enough of an explanation, so my sister sought out a specialist that would diagnose her with Aspergers.

Wrong, no?

Anyways, I was reading the wiki article about CAPD, and it says that CAPD is one of the hardest disorders to detect and is often times misdiagnosed with Aspergers.

As a hearing impaired individual, I do a lot of "guess work" when someone is talking to me. So does my neice, so does my dad, and now my sister does too. However, unlike a person with CAPD, it is because we have a hearing loss, not because we have great peripheral hearing but cannot process what we hear.

Now, back to the whole Aspergers thing - my sister is convinced that my neice has it because she doesn't "get" what a lot of people are trying to tell her :roll:She also says she does not understand why people get emotional. Sometimes, I don't get it either unless I "know what is going on" - meaning - what was being said that led up to that display of emotion. It is a feeling that I am "out of the loop". That feeling is non-existent when I am with my friends that sign.

Even my own father admitted I "came out of my shell" when I started using ASL at 14. Not sure if any of this makes any sense.
 
Steinhauer said:
This is a stickler for sure. My neice was diagnosed with Aspergers. She is HoH with the same hereditary inner ear nerve damage that me, my father, my uncle and grandfather all have. My sister (neice's mom) was diagnosed with the same hearing loss a few years ago (the hearing loss is hereditary but we are all not born with it. It can happen at anytime).

My neice lost her hearing when she was 4. She displayed the same exact behaviour I did when I was growing up. We would both shy away from groups (could not understand what was being said, and would dive into books). My father lost his hearing in college.

In any case, my sister is adamant that me, my father, grandfather and of course, her daughter must all have Aspergers because we all share the same behaviour characteristics as her daughter. We all have one thing in common, severe hearing loss. So, of course, we are going to behave the way people do when they cannot hear what is being said. She doesn't know I was already evaluated for it and I do not have Aspergers - I share some of the characteristics of Aspergers, but I do not have it.

So, she has "conspired" with our mother and now they both believe I am just in denial and that yes, I have Aspergers :roll:

Me and my neice both just :roll: (and my dad too).

She was told by one specialist that no, her daughter does not have Aspergers, that she is just displaying characteristics of a person who has a severe hearing loss. This was not good enough of an explanation, so my sister sought out a specialist that would diagnose her with Aspergers.

Wrong, no?

Anyways, I was reading the wiki article about CAPD, and it says that CAPD is one of the hardest disorders to detect and is often times misdiagnosed with Aspergers.

As a hearing impaired individual, I do a lot of "guess work" when someone is talking to me. So does my neice, so does my dad, and now my sister does too. However, unlike a person with CAPD, it is because we have a hearing loss, not because we have great peripheral hearing but cannot process what we hear.

Now, back to the whole Aspergers thing - my sister is convinced that my neice has it because she doesn't "get" what a lot of people are trying to tell her :roll:She also says she does not understand why people get emotional. Sometimes, I don't get it either unless I "know what is going on" - meaning - what was being said that led up to that display of emotion. It is a feeling that I am "out of the loop". That feeling is non-existent when I am with my friends that sign.

Even my own father admitted I "came out of my shell" when I started using ASL at 14. Not sure if any of this makes any sense.
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Yeah, a lot of times the so called deaf behaviors, particularly in the past, were associated with autism spectrum. They have also been associated with ADHD. Sometimes a kid will isolate because they can't stand the confusion of trying to figure out what is going on. That is their way to self comfort. Other times, it just seems that they have a short attention span because they get tired of trying to figure it out and just go to something they are more interested in.

Yes, hearing loss can look sometimes like a lack of empathy if you don't know what was going on that led to the emotional display. However, it is not truly a lack of empathy, because you are able to understand if it is explained. Hearing people have a tendency to blame other things for behaviors related to deafness because they don't stop to actually consider how much they perceive through their hearing.

CAPD is very difficult to diagnose because a young child cannot possibly describe what is going on with them. It is an overwhelming experience. Especially since, on a one on one basis, people with CAPD generally do well. It ends up that they get blamed for "not paying attention" or willful misbehavior, or downright accused of "faking it." And, just as children react differently to their deafness (some isolate, some become hyperactive) children will react differently to their CAPD. Since fMRI is not useful to diagnose unless you already know you are looking for CAPD, and their sound booth tests are within normal ranges, hearing loss gets ruled out, but no other explanation other than willful misbehavior is looked into.

Absolutely wrong to shop for a diagnosis you agree with. Especially when her behaviors could so easily be attributed to her hearing loss.
 
jillio said:
Yeah, a lot of times the so called deaf behaviors, particularly in the past, were associated with autism spectrum. They have also been associated with ADHD. Sometimes a kid will isolate because they can't stand the confusion of trying to figure out what is going on. That is their way to self comfort. Other times, it just seems that they have a short attention span because they get tired of trying to figure it out and just go to something they are more interested in.

Yes, hearing loss can look sometimes like a lack of empathy if you don't know what was going on that led to the emotional display. However, it is not truly a lack of empathy, because you are able to understand if it is explained. Hearing people have a tendency to blame other things for behaviors related to deafness because they don't stop to actually consider how much they perceive through their hearing.

CAPD is very difficult to diagnose because a young child cannot possibly describe what is going on with them. It is an overwhelming experience. Especially since, on a one on one basis, people with CAPD generally do well. It ends up that they get blamed for "not paying attention" or willful misbehavior, or downright accused of "faking it." And, just as children react differently to their deafness (some isolate, some become hyperactive) children will react differently to their CAPD. Since fMRI is not useful to diagnose unless you already know you are looking for CAPD, and their sound booth tests are within normal ranges, hearing loss gets ruled out, but no other explanation other than willful misbehavior is looked into.

Absolutely wrong to shop for a diagnosis you agree with. Especially when her behaviors could so easily be attributed to her hearing loss.
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:ty: for explaining that.
 
Having experienced being "labelled" many times, after a while it stops being frustrating - a sense of humor sometimes helps.

I just hurt seeing my neice being stigmatized - but I ain't her momma.
 
Steinhauer said:
Having experienced being "labelled" many times, after a while it stops being frustrating - a sense of humor sometimes helps.

I just hurt seeing my neice being stigmatized - but I ain't her momma.
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Yeah, a label of autism will stigmatize, particularly in the school system. People will preform stereotyped ideas of what she can and can't do and they will base how they address her needs on that. She is going to end up getting the short end of the stick. It creates a self fulfilling prophecy.
 
jillio said:
Yeah, a label of autism will stigmatize, particularly in the school system. People will preform stereotyped ideas of what she can and can't do and they will base how they address her needs on that. She is going to end up getting the short end of the stick. It creates a self fulfilling prophecy.
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I know. She has tried reaching out to me several times. She sent me emails asking me to teach her how to sign. She explained how frustrated she was not being able to understand anything and having to "fake it" to barely get by in school (mainstreamed).

When I mentioned this to my sister and my mom, my mother blurted out that no such thing ever happened and that I was "imposing" ASL on my neice and that she was just trying to make me "happy" by learning a few signs. That is NOT what happened at all.

Anyways, when my sister started to lose her hearing a few years ago, she took me aside, away from the rest of the family (Christmas Party) and apologized to me. She said for the first time, she was finally able to understand why I behaved the way I do.

So, hopefully, not all is lost. (and a very very strong motivating factor in why I am going to be a deaf educator).
 
Steinhauer said:
I know. She has tried reaching out to me several times. She sent me emails asking me to teach her how to sign. She explained how frustrated she was not being able to understand anything and having to "fake it" to barely get by in school (mainstreamed).

When I mentioned this to my sister and my mom, my mother blurted out that no such thing ever happened and that I was "imposing" ASL on my neice and that she was just trying to make me "happy" by learning a few signs. That is NOT what happened at all.

Anyways, when my sister started to lose her hearing a few years ago, she took me aside, away from the rest of the family (Christmas Party) and apologized to me. She said for the first time, she was finally able to understand why i behaved the way I do.

So, hopefully, not all is lost.
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Hopefully not. It is a shame that she had to experience it herself before she could understand, but better then than never.

I'd say your niece is reaching out to you because she relates to you. Just like the kid that was being discussed in the bilateral CI thread.
 
jillio said:
Hopefully not. It is a shame that she had to experience it herself before she could understand, but better then than never.

I'd say your niece is reaching out to you because she relates to you. Just like the kid that was being discussed in the bilateral CI thread.
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When my neice and I talk, we get along great. I get her to laugh a lot. I think the whole "group dynamics" have changed when my sister lost her hearing. My wife is also deaf, and we sign everytime we go over for visits and I make sure not to leave my wife "out of the loop".

Don't get me wrong, I love my mom ... but sometimes .... arggh. She mentioned after my wedding that maybe now she has to learn sign since her daughter in law is deaf.

I guess that is just me "imposing" :giggle:

It's like "Gee, your ex-husband is deaf, your son is deaf, your granddaughter is deaf, and now your daughter is going deaf ....."

Strength in numbers!
 
jillio said:
We were discussing the neurological implications of CAPD and whether or not it was appropriate for the OP to identify herself as HOH. I think it is perfectly acceptable for her to do so.
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I went to my third deaf coffee tonight, and explained to a few folks about my CAPD. I was doing the "kinda HoH, kinda hearing" sign, because I've previously told them that I was hearing. After I explained my experiences, a number of folks that I explained it to were fascinated by my explanation.

One guy, Dave, after listening to my description likened me and my experiences to his "HoH" friends and "welcomed me to the club". So... I guess going forward, I'll use HoH to describe myself if necessary to do so.

I just need to get comfortable with the label. I've been thinking of myself as a typical hearing person for so long, it's quite a shift to be thinking of myself differently. It's hard to recognize that, no really, most hearing people don't have to do the things I do with the frequency I have to do them.
 
joycem137 said:
I went to my third deaf coffee tonight, and explained to a few folks about my CAPD. I was doing the "kinda HoH, kinda hearing" sign, because I've previously told them that I was hearing. After I explained my experiences, a number of folks that I explained it to were fascinated by my explanation.

One guy, Dave, after listening to my description likened me and my experiences to his "HoH" friends and "welcomed me to the club". So... I guess going forward, I'll use HoH to describe myself if necessary to do so.

I just need to get comfortable with the label. I've been thinking of myself as a typical hearing person for so long, it's quite a shift to be thinking of myself differently. It's hard to recognize that, no really, most hearing people don't have to do the things I do with the frequency I have to do them.
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Absolutely. You are in the process of revising your identity. This happens with a lot of late deafened people, as well. They have just accepted without even thinking about it, their hearing identity, and suddenly, that has to be revised. It can be a difficult period of adjustment for them. For you, perhaps it will be easier, because you haven't really undergone an actual physical change or loss. You are just revising how you label what has always been.

It is great that you have found the deaf community to be so welcoming and supportive. The vast majority do. There are always a few dissenters in any group, but they are best ignored.
 
jillio said:
Absolutely. You are in the process of revising your identity. This happens with a lot of late deafened people, as well. They have just accepted without even thinking about it, their hearing identity, and suddenly, that has to be revised. It can be a difficult period of adjustment for them. For you, perhaps it will be easier, because you haven't really undergone an actual physical change or loss. You are just revising how you label what has always been.

It is great that you have found the deaf community to be so welcoming and supportive. The vast majority do. There are always a few dissenters in any group, but they are best ignored.
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Hmmm... I think you're correct. It's a hard process.

Although, I should clarify that it actually isn't just a revision of how I label it. It's also a revision of how I approach it. Previously, I did everything I could to hide my difficulties from people, but now I acknowledge it more openly. I'm asking other people to be more involved in the communication process, asking them to repeat themselves, get my attention before talking, etc. That, too, is a bit of a challenge to engage in, actually, as I'm learning how to navigate people's feelings on such subjects.
 
joycem137 said:
Hmmm... I think you're correct. It's a hard process.

Although, I should clarify that it actually isn't just a revision of how I label it. It's also a revision of how I approach it. Previously, I did everything I could to hide my difficulties from people, but now I acknowledge it more openly. I'm asking other people to be more involved in the communication process, asking them to repeat themselves, get my attention before talking, etc. That, too, is a bit of a challenge to engage in, actually, as I'm learning how to navigate people's feelings on such subjects.
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Oh, sure. Because you are now including it as part of your identity, it requires that you change approaches from all angles. Kind of like those that go from deaf to Deaf.
 
joycem137 said:
Hmmm... I think you're correct. It's a hard process.

Although, I should clarify that it actually isn't just a revision of how I label it. It's also a revision of how I approach it. Previously, I did everything I could to hide my difficulties from people, but now I acknowledge it more openly. I'm asking other people to be more involved in the communication process, asking them to repeat themselves, get my attention before talking, etc. That, too, is a bit of a challenge to engage in, actually, as I'm learning how to navigate people's feelings on such subjects.
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That is the most important part IMO.....Labels are just words, but actions are VERY important. Sounds like you are really making progress :thumb:
 
Ahhh....CAPD is a new thing to me that I have never heard or seen before. Your explanation described the same thing in my father's shoes. That is why he has hard time socializing with family in a group for years, he oftenly ends up isolating himself in his own "little den" room with a tv in the basement.
 
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