Saying Hi and About Me

Foxrac said:
Hello, I was born HoH and eventually became profoundly deaf after chicken pox when I was 1 year old. I had no benefit with hearing aids, so CI is only one option for me. I got diagnosed with Usher Syndrome when I was 13 years old but I didn't know until I was 18 after graduated from high school. After research about Usher Syndrome, I was very unprepared and severely depressed, also I was in bad shape in this forum as well. The degrading of vision from Usher Syndrome is mainly focus on peripheral vision as progressive from full degree to tunnel vision.

Losing driver license will be extremely devastated and cripple my independence after public transportation wasn't work for me due to anxiety.

Nice meet to you. :)
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Yeah, it was definitely no fun to lose my driving privileges when my eyesight started going. Thanks to the recent happenings, I'm able to go back to driving again. I've been practicing, brushing up on my past skills, and should go in for a test to get my license again next month. It wouldn't get my independence back, because I wouldn't be driving my own car, but it's a step in the right direction.

The medication, Soriatane, has a hyper amount of vitamin A. It was enough to affect my cornea to allow contact lenses to smooth the ridges and remove the blood vessels building in there. I'm not sure if it'd help with your situation, but you could always bring it up to your specialist who deals with your vision. My optometrist is doing a case study on it to see if it'd help others with vision conditions because the drug is originally designed to help with psoriasis (severe skin condition.)
 
MattB said:
Not sure what you mean by specialized stuff in public school. I did get to go to hearing impaired classes in public school and in some of them I had speech therapy, as well. In elementary school I had teachers with mics and I could wear a device around my neck to hear them better. It definitely made me quite self-conscious about it, though.

I'm not terribly sure whether the hearing impaired classes and speech therapy helped or not. It didn't seem like we were doing any actual work or therapy. Some people say my speech impediment isn't too bad, but I still notice strangers get that concentrated, oh-look-someone-with-an-impediment-be-extra-polite look on their face, so it can't be that great.

But, yeah, I pretty much floundered through my 20's, couldn't figure out what to do with myself, constant depression, and I became a bit of a recluse by hanging out online (first AOL, then running websites). It wasn't until I reached my 30's that I became frustrated with my lot in life and started to try to do something more about it.

It's difficult, for one thing, because I'm out in the middle of nowhere right now. On top of that, I don't know of anyone who is hearing-impaired. Most of my friends from high school moved on, and most are out of state now. The best I know how to connect with like-minded people who would understand me the most would be online communities.

HKNC sounds pretty awesome. That would've been great in my late teen's/20's, but not sure it's still feasible for someone in their mid-30's. It is a relief to know that there are programs and options like that for kids today to get a chance at life to become independent as much as they can.
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At least you got HI classes..Did you get blind/low vision interventions too?....A lot of dhh kids who went to school in the 80's and 90's didn't even get that! Were the classes oral? Sounds like the experiance was very oral.....I feel for you...I'm also in the middle of nowhere....I have friends from college (mostly hearing) but keep in touch with them via FB.....they live hours away sadly.....online communites and FB have been a godsend for me social life wise. (live in a very snotty town and can't drive) Contact HKNC.....they might have some stuff for you even thou you're in your 30's.......that way you could meet other D-B folks!
 
MattB said:
Yeah, it was definitely no fun to lose my driving privileges when my eyesight started going. Thanks to the recent happenings, I'm able to go back to driving again. I've been practicing, brushing up on my past skills, and should go in for a test to get my license again next month. It wouldn't get my independence back, because I wouldn't be driving my own car, but it's a step in the right direction.

The medication, Soriatane, has a hyper amount of vitamin A. It was enough to affect my cornea to allow contact lenses to smooth the ridges and remove the blood vessels building in there. I'm not sure if it'd help with your situation, but you could always bring it up to your specialist who deals with your vision. My optometrist is doing a case study on it to see if it'd help others with vision conditions because the drug is originally designed to help with psoriasis (severe skin condition.)
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At least your vision is improving enough so you can drive! Maybe you could go to a deaf get togehter...they welcome oral folks who are interested in ASL! Lots of, if not most orally raised kids do learn ASL as a second langugage for the social benifits!
 
I didn't go to any blind/vision classes because back then my vision was what it is now, 20/40. It wasn't until about 6-7 years ago that my vision started going downhill.

All my HI classes were oral, although most of the other kids in the class knew ASL. I was one of the few who never learned it, though. I should probably learn it. When I have my aids out (which is most of the time when I'm in my room), when my roommates come by to ask me something, they don't wait until I put them in but do some hodgepodge guessimating sign language that would make even American Indians in the past cringe in horror.

I'll look into the HKNC; nothing ventured, nothing gained as they say!
 
Hi - I joined this organisation really b mistake - I thought it was based in the UK! Nevertheless I really enjoy reading the forums postings and would just like to put a toe in the water - anybody else out there had a truly dreadful experience with a BAHA aid? My surgeon really pressurised me into having an abutment fitted and then he tried to complete the hearing aid, but the abutment was so far from my scalp and the transmitter thing was so enormous that it was impossible to control dreadful feedback. I wore it for 5 days, but not all day as the dreadful screeching gave me (and my husband) terrible headaches. I am having the abutment removed next month, and now have resigned myself to a world of silence. I cannot wear in the ear hearing aids as I have chronic ear infections. Not really feeling too sorry for myself but would love to hear if any other person out there has found a sort of solution? Best wishes from ~England - .dealdeaf.
 
.dealdeaf said:
Hi - I joined this organisation really b mistake - I thought it was based in the UK! Nevertheless I really enjoy reading the forums postings and would just like to put a toe in the water - anybody else out there had a truly dreadful experience with a BAHA aid? My surgeon really pressurised me into having an abutment fitted and then he tried to complete the hearing aid, but the abutment was so far from my scalp and the transmitter thing was so enormous that it was impossible to control dreadful feedback. I wore it for 5 days, but not all day as the dreadful screeching gave me (and my husband) terrible headaches. I am having the abutment removed next month, and now have resigned myself to a world of silence. I cannot wear in the ear hearing aids as I have chronic ear infections. Not really feeling too sorry for myself but would love to hear if any other person out there has found a sort of solution? Best wishes from ~England - .dealdeaf.
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Baha doesn't have to have that abutment now, I believe. I think you can have a magnet under the scalp.
 
MattB said:
I didn't go to any blind/vision classes because back then my vision was what it is now, 20/40. It wasn't until about 6-7 years ago that my vision started going downhill.

All my HI classes were oral, although most of the other kids in the class knew ASL. I was one of the few who never learned it, though. I should probably learn it. When I have my aids out (which is most of the time when I'm in my room), when my roommates come by to ask me something, they don't wait until I put them in but do some hodgepodge guessimating sign language that would make even American Indians in the past cringe in horror.

I'll look into the HKNC; nothing ventured, nothing gained as they say!
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Hodgepodge of signing.. LOL Yeeeep My parents do that to me all the time but they do at least know/remember a few signs (I learned ASL at Gallaudet- grew up oral). My sister is a bit better and does fingerspell and remembers a few signs (took a semester or two of ASL in college- that really surprised me).

I'm quite a few years older than you and DeafDyke-- all my life was mainstreamed. I did start out in 'hearing impaired programs' pre-K and at least one year K. Speech therapy etc- I don't remember the mic and all that though. After that...all I ever had was speech therapy until 6th grade.

That is awesome at how your new med improved your vision! I'm not Foxrac and I'm sure he will explain more but I don't think the med will work well with Usher's Syndrome vision loss as the damage is to the retina-- Retinitis Pigmentosa (RP).

Anyway :hi:
 
DeafDucky said:
Hodgepodge of signing.. LOL Yeeeep My parents do that to me all the time but they do at least know/remember a few signs (I learned ASL at Gallaudet- grew up oral). My sister is a bit better and does fingerspell and remembers a few signs (took a semester or two of ASL in college- that really surprised me).

I'm quite a few years older than you and DeafDyke-- all my life was mainstreamed. I did start out in 'hearing impaired programs' pre-K and at least one year K. Speech therapy etc- I don't remember the mic and all that though. After that...all I ever had was speech therapy until 6th grade.

That is awesome at how your new med improved your vision! I'm not Foxrac and I'm sure he will explain more but I don't think the med will work well with Usher's Syndrome vision loss as the damage is to the retina-- Retinitis Pigmentosa (RP).

Anyway :hi:
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Yeah, I'm not sure if it'd help Foxrac, but it'd be awesome if something could help out because I certainly know how much it sucks to have your vision deteriorate and having to deal with it on top of terrible hearing. One impediment is one too many, if you ask me.
 
Hi There Matt, Welcome to AD. Interesting story you got here. Pretty much the mirror of my life especially in my 20s. I am now 30 years old and I still haven't figured out what to do in my life. I feel a bit jealous when I see so many people around me especially the younger ones who know what they wanna do in their life and they go on to be successful in what they do.
Thanks for letting me know that there is some one out there in a similar situation like me.
Regards...


MattB said:
Not sure what you mean by specialized stuff in public school. I did get to go to hearing impaired classes in public school and in some of them I had speech therapy, as well. In elementary school I had teachers with mics and I could wear a device around my neck to hear them better. It definitely made me quite self-conscious about it, though.

I'm not terribly sure whether the hearing impaired classes and speech therapy helped or not. It didn't seem like we were doing any actual work or therapy. Some people say my speech impediment isn't too bad, but I still notice strangers get that concentrated, oh-look-someone-with-an-impediment-be-extra-polite look on their face, so it can't be that great.

But, yeah, I pretty much floundered through my 20's, couldn't figure out what to do with myself, constant depression, and I became a bit of a recluse by hanging out online (first AOL, then running websites). It wasn't until I reached my 30's that I became frustrated with my lot in life and started to try to do something more about it.

It's difficult, for one thing, because I'm out in the middle of nowhere right now. On top of that, I don't know of anyone who is hearing-impaired. Most of my friends from high school moved on, and most are out of state now. The best I know how to connect with like-minded people who would understand me the most would be online communities.

HKNC sounds pretty awesome. That would've been great in my late teen's/20's, but not sure it's still feasible for someone in their mid-30's. It is a relief to know that there are programs and options like that for kids today to get a chance at life to become independent as much as they can.
Click to expand...
 
MattB said:
Yeah, I'm not sure if it'd help Foxrac, but it'd be awesome if something could help out because I certainly know how much it sucks to have your vision deteriorate and having to deal with it on top of terrible hearing. One impediment is one too many, if you ask me.
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Definitely understand about the vision issues. I grew up aphakic (no natural lens due to congenital cataracts-- congenital rubella syndrome) so vision was kind of limited and fat glasses until my late 20's/early 30's when I got lens implants. Vision did improve in some respects but still not completely :(.

So far no deterioration- thought for sure I'd have some due to glaucoma but now I have a doctor that is saying I never HAD glaucoma- corneas are very thick from all the eye surgeries I've had so the readings tend to be off.
 
MattB said:
Yeah, I'm not sure if it'd help Foxrac, but it'd be awesome if something could help out because I certainly know how much it sucks to have your vision deteriorate and having to deal with it on top of terrible hearing. One impediment is one too many, if you ask me.
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OMG yeah.......if you're born/early D-B it's easier b/c that's all you've ever known....but aquirring bad vision when you're very visual? EEEEEKKKK
 
MattB said:
I didn't go to any blind/vision classes because back then my vision was what it is now, 20/40. It wasn't until about 6-7 years ago that my vision started going downhill.

All my HI classes were oral, although most of the other kids in the class knew ASL. I was one of the few who never learned it, though. I should probably learn it. When I have my aids out (which is most of the time when I'm in my room), when my roommates come by to ask me something, they don't wait until I put them in but do some hodgepodge guessimating sign language that would make even American Indians in the past cringe in horror.

I'll look into the HKNC; nothing ventured, nothing gained as they say!
Click to expand...

Oh....so you were just mildly VI? Yeah, most B/LV/VI kids are and have been inclusive mainstreamed,anyway.....there aren't even blind programs/classrooms at most public schools....and most kids at blind schools are mentally disabled, with a scattering of "just blind/low vision" kids....
Actually the biggest population with B/LV/VI kids are severe multihandicapped kids with cortical visual impairment...Did you know there's still a debate with blind ed? And there are still handfuls of "just blind" kids who attend blind schools?
So, wow.....even thou your classes were oral there were kids who knew ASL? That's pretty cool! I mean not that they were oral.....but that there were kids there who knew ASL.....Seems like that's still a mild occurance.....you'll see some kids at the private oral programs who know ASL.....they go to the oral programs to improve their speech...Also cool that you got to be with other dhh kids!
Have you thought of college? I wonder if an experiance at NTID might be good for you....there are some older students there....RIT - National Technical Institute for the Deaf Might help you job and social wise....Just an idea!
 
deafdyke said:
Oh....so you were just mildly VI? Yeah, most B/LV/VI kids are and have been inclusive mainstreamed,anyway.....there aren't even blind programs/classrooms at most public schools....and most kids at blind schools are mentally disabled, with a scattering of "just blind/low vision" kids....
Actually the biggest population with B/LV/VI kids are severe multihandicapped kids with cortical visual impairment...Did you know there's still a debate with blind ed? And there are still handfuls of "just blind" kids who attend blind schools?
So, wow.....even thou your classes were oral there were kids who knew ASL? That's pretty cool! I mean not that they were oral.....but that there were kids there who knew ASL.....Seems like that's still a mild occurance.....you'll see some kids at the private oral programs who know ASL.....they go to the oral programs to improve their speech...Also cool that you got to be with other dhh kids!
Have you thought of college? I wonder if an experiance at NTID might be good for you....there are some older students there....RIT - National Technical Institute for the Deaf Might help you job and social wise....Just an idea!
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Yeah, I know there's been quite a debate about the whole who qualifies and applies to certain specialist schools. I remember being appalled when I was told that I wasn't deaf or blind enough to go to the famous Florida School for the Deaf & Blind in St. Augustine. I mostly wanted to go because my friends in HI class were going there.

The kids in my HI classes who knew ASL had stronger speech impediments, so I don't know if they knew ASL early and grew to become oral or just used ASL to communicate better with their peers. I had no issues communicating with them without ASL. It's funny, I remember all their names but I don't remember anyone from any of my mainstream classes.

Never really contemplated college. I've always been more of a self-teacher, everything I know about web design and computer repair were both self-taught. It's definitely something that sounds intriguing, as I haven't really done much real-world socializing in over a decade and the idea of learning something new is appealing.
 
Not deaf/vision impaired enough? Wow..

Story goes that Pennsylvania School for the Deaf rejected me when I was small because they told my parents I was "mentally retarded" (or they told her they wouldn't work with multihandicapped kids aka deaf-blind kids). I'm hazy on that and I'm not even sure i have the whole story lol. I'm sure that when they tried to give me certain materials I couldn't use 'em (pencils were very difficult for me to see/read so mom used markers a lot).
 
MattB said:
Yeah, I know there's been quite a debate about the whole who qualifies and applies to certain specialist schools. I remember being appalled when I was told that I wasn't deaf or blind enough to go to the famous Florida School for the Deaf & Blind in St. Augustine. I mostly wanted to go because my friends in HI class were going there.

The kids in my HI classes who knew ASL had stronger speech impediments, so I don't know if they knew ASL early and grew to become oral or just used ASL to communicate better with their peers. I had no issues communicating with them without ASL. It's funny, I remember all their names but I don't remember anyone from any of my mainstream classes.

Never really contemplated college. I've always been more of a self-teacher, everything I know about web design and computer repair were both self-taught. It's definitely something that sounds intriguing, as I haven't really done much real-world socializing in over a decade and the idea of learning something new is appealing.
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Really? What was your loss back then? I thought they admitted kids with mild losses.....Really too bad you didn't end up going....FSDB has always been very HOH friendly.....I thought NTID might be a good idea just for the social experiance,and maybe even the networking for jobs advantage....I know someone around our age who decided to go for the social and networking for jobs.........
 
Hmm I have a friend who worked at FSDB about oh wow.. at least 20 years ago (she got married at FSDB in '94) if she remembers if there were kids with mild to moderate losses or not...
 
DeafDucky said:
Not deaf/vision impaired enough? Wow..

Story goes that Pennsylvania School for the Deaf rejected me when I was small because they told my parents I was "mentally retarded" (or they told her they wouldn't work with multihandicapped kids aka deaf-blind kids). I'm hazy on that and I'm not even sure i have the whole story lol. I'm sure that when they tried to give me certain materials I couldn't use 'em (pencils were very difficult for me to see/read so mom used markers a lot).
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Really? MILD multi kids?!?!? I could understand denying SEVERE multi kids, as those kids aren't educationally deaf....they're severe multi ...different kettle of fish,but most mild multi kids can still learn!....or was PSD oral back then? I've heard of kids who weren't exactly oral sucesses being asked to leave or being dx as mentally disabled...then they got transfered to sign programs and did MUCH better
 
deafdyke said:
Really? What was your loss back then? I thought they admitted kids with mild losses.....Really too bad you didn't end up going....FSDB has always been very HOH friendly.....I thought NTID might be a good idea just for the social experiance,and maybe even the networking for jobs advantage....I know someone around our age who decided to go for the social and networking for jobs.........
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It's about the same as it is today, classified as severe-to-profound hearing loss. With most of the high frequencies being in the profound range. I do wonder how much of my life would've changed if I had experience with a deaf/blind community.
 
DeafDucky said:
Not deaf/vision impaired enough? Wow..

Story goes that Pennsylvania School for the Deaf rejected me when I was small because they told my parents I was "mentally retarded" (or they told her they wouldn't work with multihandicapped kids aka deaf-blind kids). I'm hazy on that and I'm not even sure i have the whole story lol. I'm sure that when they tried to give me certain materials I couldn't use 'em (pencils were very difficult for me to see/read so mom used markers a lot).
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How long ago did this happen? My teacher in first grade thought I was 'retarded' b/c I was failing first grade for the second time. She decided to give me a hearing test and found out I was HOH and not 'retarded'. This happen a lot when I was growing up in the 50's.
 
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