posts from hell

Alright.... That has went by a long time ago.

Deafness

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TXgolfer

No doubt

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Do not be overcome by evil, but overcome evil with good. - Romans 12:21


Sometimes at night, I see their faces. I feel the traces they've left on my soul

Steinhauer

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

Me and my neice both just (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 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.

jillio

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.

Steinhauer

for explaining that.

jillio

No problem.

Steinhauer

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.

jillio

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.

Steinhauer

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).

jillio

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.

Steinhauer

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"

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!

kokonut

What? 41 examples aren't damning enough or what? Let's stay with the topic.

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"... turns out they are telling the truth."

joycem137

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.

jillio

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.

joycem137

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.

jillio

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.

TXgolfer

That is the most important part IMO.....Labels are just words, but actions are VERY important. Sounds like you are really making progress

__________________
Do not be overcome by evil, but overcome evil with good. - Romans 12:21


Sometimes at night, I see their faces. I feel the traces they've left on my soul

jillio

Hmmmph.

joycem137

Mrrr?

katz4life

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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joycem137

Got my test results back from the audiologist today. (Took a while due to the holiday break and some billing silliness.) Thought I'd add it to this thread instead of getting a whole new one to share these bits, especially since I'd love for some of the biology/audiology geeks from earlier in this thread to help me understand what some of this stuff means.

My diagnosis is officially "central hearing impairment," with some specific bits of information: "Auditory figure-ground confusions and difficulty suppressing unwanted background sounds of even mild-to-moderate intensity" and "Poor short term auditory and rote memory systems" alongside some borderline findings of "slow or inaccurate exchange/integration of auditory and visual information" and "inefficient integration of language perceptions form the two hemispheres."

My pure tone test results show normal hearing in the right ear and a mild 25db loss in the left ear above 8,000 Hz. I have excellent speech discrimination without noise present, but with noise present, my comprehension drops well outside of the normal range. Speech discrimination in noise tested at 44% left/56% right, where 64% is apparently the lowest "normal" value for this. My binaural fusion test was abnormal by 3 standard deviations for the right ear, and I was also abnormal by 3 standard deviations for the Staggered Spondaic Word test I was abnormal by 1.5 standard deviations in the left ear for Dichotic Competing Sentences and both ears in Willeford's filtered speech/words, indicating borderline abnormal functioning.

She states that these findings are "consistent with a central auditory processing disorder, as suggested by abnormal findings on tests considered sensitive to brain stem level auditory system dysfunction (consistent with the history of hypoxia)"

The rest of my auditory system tests within the normal range.

Lazarus404

I didn't really start talking until I was about 4. My sister used to speak for me. Growing up, I was always quite solitary. I was a timid little thing who oddly talked non-stop, but never listened well. I was labelled "easily distracted", but that is usually because, a couple of sentences into someone else's dialogue and I'd just zone out. I actually did quite well in various subjects at school, though I was late to learn to read (a trait in CAPD sufferers). Eventually, I taught myself to write software and I now do this for a living, writing high end stuff for companies all round the world. Quite lucky, really. It works for me because I don't have to talk to anyone... I just type all day.

My point is, I never showed any signs of asbergers, though perhaps I showed quite a few autistic symptoms but, being quite a naturally outgoing person, I guess I came across more as being a dreamer and, as I said earlier, prone to distraction. Now that I know all about CAPD, though, I wonder how none of my teachers (or parents) could work out it was hearing related all along.

I have to say, though, that some of my CAPD symptoms seem more prevalent now that I'm older. I get stressed by sounds a lot more. On the other hand, I've mostly mastered my phobia of telephones :-) Now, I know I come across a little stupid when I say the wrong thing to questions or pause for awkward periods of time... I just don't care what the other person thinks about that.

joycem137

I was the same way. I talked all the time to everyone else, especially about things I was interested in. But if people talked to me about things they liked, I "ignored" them. Because, of course, I couldn't understand them that well.

LOL! I'm a software engineer, too! I work in user interfaces for TV and media consumption. I did excellent in school and apparently didn't have any problems learning to read. I think. Given the fact that I have CAPD, I've wondered how that all happened. Really, most of my problems seem to be social. I have historically had trouble socializing in big groups.

DITTO! I asked my dad about it and he, to my face, said, "You never showed any signs of a hearing problem." Then proceeded to tell me all about how I would never stop to listen to what other people had to say and other stuff like that.

I'm still working on the telephone phobia. I need to get comfortable using captioned telephone services, and I should be okay. I also take more command of conversations, and when I realize that I'm having trouble understanding a person, I let them know about my CAPD and start asking for repeats and stuff. That alone has been a huge help in my development and changes.

I'm curious what sort of CAPD you have and how you were diagnosed.

Lazarus404

What TV work have you done? I've completed several projects with the BBC, as well as Nickelodeon, Cartoon Network and a number of animation companies. Currently, I'm CTO for a streaming media company. We do Cloud based systems. I change roles quite frequently from animator to hard core developer, but my current role is as a client side JavaScript developer / server applications architect (Joyant related projects, etc).

I haven't fully been diagnosed, yet, so don't know what kind I have. I did visit a neurologist, but he was more inclined to suggest aspergers. At the time, I simply figured he just didn't understand (he didn't seem to have heard of CAPD before), but now, since investigating aspergers, I'm starting to see patterns there, too, so I'm going to see another neurologist about that. If I have aspergers, I'm pretty sure it's mild, but CAPD is very common with aspergers cases, so it would make sense.

From a condition perspective, I have pretty much every described symptom of CAPD with the exception of being illiterate. I managed to rid myself of that issue in primary school. However, I can't speed read; only at a pace that matches a spoken translation of the text. All the other symptoms like not being able to understand clearly heard sentences, mishearing words and sentences, not being able to differentiate sounds, finding noise stressful etc. etc., are all there.

That is a big aspergers give-away. Maybe you have it mildly, too? There are different levels of it. Many with aspergers are very high functioning, like Steven Spielberg and Dan Aykroyd. Also, it's believed Einstein had it, so it's something that many people who feel mostly normal and highly achieving can and do have.

There's a test on this site that helps determine the likelihood of having it.

I'm currently on a big 'fact finding' mission to work out my neural issues, so I can plan steps to overcoming them. It causes issues in my relationships and my work can occasionally be affected by it, so I'm hoping if I can find out how to bypass these issues, I can achieve more quickly and have a better relationship with my wife and children.

Fingers crossed.

Frisky Feline

Interesting, my good friend just learned that her daughter has CAPD. She is very upset about it and worried about her future. I told her that I know couple of capd on line and seems to be doing very well. SO her daughter gets help from school by having FM and takes speech therapy. GREAT. She knows ASL due to her Deaf parents. So it just dawns on me and told her to try to apply for SSI to see if SSI can help to cover the fees for her daughter to attend to take speech therapy and more tools that is necessary. She is going to find out due to depending on how much household incomes they have if kid is eligible for SSI or not. any suggest for more helps?? Thanks!

ekdouglas736

That is exactly what I say. Having failed to make people understand with other discriptions.

SummerP

This has been a really interesting thread to read through. I was recently diagnosed with an APD, and stumbled onto this thread because I was wondering the exact same thing joycem was. Really glad this discussion is here!

BecLak

Wirelessly posted

Simply put - tell people 'my hearing is messed up'?

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joycem137

Eh, but then people make assumptions about what I can/can't hear, and it's all weird and stuff.

BecLak

Wirelessly posted

I get faced with the same problem because I grew up oral, so people assume I can hear. I am severely-deaf, can only hear low tones and vowels. I don't explain all of that to everyone I meet. I just make it clear how they are to communicate with me and that's it. No manner of explanation is going to sink in on first meeting anyway.

__________________
Severely deaf from birth.
Deaf with a Purpose. God designed me this way so I do everything by God's Grace.

Exodus 4:11 Ignorance is no longer bliss. Be Educated.

KEEP IN STEP WITH ME: Sign Text Email Pen and Paper