Born with severe to profound hearing loss; hearing aids only

KarissaMann05

KarissaMann05

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This thread is for anyone who was born with this kind of loss: severe to profound levels. It could be adult, teen or a parent who has a child with this loss that wears HEARING AIDS. You're more welcome to discuss about your experience and your personal story. You can offer some advice or tips to another AD'ers.

As in story, what can you hear?

How is your speech?

Do you go to public or Deaf school?

Do you have any other information that you think it would be helpful? That would be nice!

What types of hearing aids that would help you for yourself or your own child?

If a child signs a lot, and considering FM at home, what is best way to assist him or her? You may have seen a SLP or not, but if you do, please do tell your experience and story to us!

Various stories about auditory verbal therapy or similar oral paths are welcomed here, also.

Please keep in that mind, this place is for people who do not want to have CIs or those parents may not interest or consider CIs. Please go and create a thread about your CI story! Those are plenty of them, so go and join CI threads instead of debating and arguing with us. Please and thank you.
 
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I was born profoundly deaf. Wore body worn aids up to 8 years old them went on to Phonak Superfront anolog aids for 16 years. Last year I got my first pair of digital aids, Phonak Naidas.

With the Naidas, my speech score in my right has greatly improved. My left hasn't but I still benefit wearing my left aid to hear background noise around me like cars.

I struggled a lot at school but that was from not getting the right support like note taker etc. My mum fought hard and in the end I got really good support but I still left school 2 years behind myself.

Used a FM at school but didn't really like it as even tho I had FM+M I still couldn't hear anyone but the teacher, not even my support worker. I ended up pretending it was turned on.

I now use a FM at work and find it very useful.

Not really sure what else to say...:)
 
I fit your criteria, and will certainly offer any input I am able to. :)
 
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Born severely-deaf in an all hearing family, raised oral. Was diagnosed and received first in-the-ear HA (in right ear only, although I was bilaterally deaf) at age 11. We were not informed of Deaf schools, sign language or the Deaf community. When the audiologist found out I could speech-read quite well, she down-played the severity of my hearing loss by telling my mother that I was only HoH, and with aids and speech therapy, I would be just like a hearing kid and would do fine in the mainstream school I was currently in. I went through school with absolutely no accommodations minus preferential seating at the front of the class. I had extensive professional speech-therapy for about a year, which ironed out my lisp for the most part. Then my mother took over correcting my speech for as long as I can remember well into adulthood. I remember vividly sitting in class, aged 7, reading silently to myself as my classmates got up one by one in front to read aloud to the class. As I was reading the words in the reader, I realized there were more letters in each word than what I was speaking (all the consonant sounds were missing) so I went home that day and asked my mother. I then re-learned how to speak all over again from reading. I gave up on wearing my hearing aids once I reached 13 because of severe verbal bullying from kids at school. The HA presented problems in itself with risk of ear infections from humidity and bad chaffing behind my ear. It only amplified the very low frequency I could already hear giving me headaches. Also, frequent screeching and whistling. At age 15, I got bi-lateral BTE aids and tried them again but very quickly discarded them, yet again, due to the same problems and added also, that they didn't fit properly with my glasses, thus causing the chaffing to worsen as the tubing would cut into my ear. As an adult, I tried my aids once again, but this time it interfered with my ability to drive, amplifying the noise inside the car so I could not concentrate on what was happening outside the car. Since I was married and had kids by that stage, most of my day was in the car driving, so I discarded the aids once again. They just weren't working for me.


As an adult, I trained as a public speaker (yes orally). Most people I met thought I was hearing. I was one of those 'oral successes'. I had worked hard trying to be as 'hearing' as possible even to the point of not only fooling the hearing world around me, but also to the point of believing it myself, that I had conquered my hearing loss. (With the exception of one other person whom I rarely met in the course of my work), I was the only deaf person I knew.


Just over 3 years ago, I had a rude 'wake-up call' realizing that nothing had changed. All the speech therapy had not benefitted me at all, it was more of a curse than a blessing because people around didn't believe me when I told them I couldn't hear them or couldn't understand what they were saying. my being oral only benefits the hearing person in the conversation. All the abasement that I received through my life due to my hearing loss came flooding back like a tsunami. I realized I was living a lie and it devastated me.


]At 45, I started researching online, discovered sign language and the Deaf community via AllDeaf. Becoming a member of AllDeaf started me on a journey of rediscovering my true self. I have now embraced my true identity as Deaf. I have since integrated more with my Deaf peers and using sign language more and more as my primary language. I have made the choice to go voice-off as it gives a clear and visible message to people I interact with that I am Deaf. It does away with the constant strain to be oral and also having to ask over and over again for things to be repeated, with also having to explain why that was necessary due to the 'but you speak so well!'s.


]I am much happier now that I have finally been able to choose what is best for me - sign language and other modes of non-verbal communication. I am Deaf and proud of it. I can be myself now. Keep in S.T.E.P with me :)
 
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I don't fit the criteria here, so I will not post beyond this comment.

Thank you for creating a new thread on this subject. I will read the rest of the comments with great interest. We sorely need more of this type of discussion, for those that are not looking to have their children go under the knife, in order to hear better. Not all children need to hear the sounds of fizzing soda.
 
KarissaMann05 said:
This thread is for anyone who was born with this kind of loss: severe to profound levels. It could be adult, teen or a parent who has a child with this loss that wears HEARING AIDS. You're more welcome to discuss about your experience and your personal story. You can offer some advice or tips to another AD'ers.

As in story, what can you hear?

How is your speech?

Do you go to public or Deaf school?

Do you have any other information that you think it would be helpful? That would be nice!

What types of hearing aids that would help you for yourself or your own child?

If a child signs a lot, and considering FM at home, what is best way to assist him or her? You may have seen a SLP or not, but if you do, please do tell your experience and story to us!

Various stories about auditory verbal therapy or similar oral paths are welcomed here, also.

Please keep in that mind, this place is for people who do not want to have CIs or those parents may not interest or consider CIs. Please go and create a thread about your CI story! Those are plenty of them, so go and join CI threads instead of debating and arguing with us. Please and thank you.
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Hello , I was born profound deaf due to german measles .I was wearing phonak HA for nearly 30 yrs ,I went to primary and secondary mainstream school with mixed deaf and hearing pupils.They have a special unit for hearing impairment also classes as well .I did use FM radio aids and they do making lots difference .My speech was improving over the years since from ages 3 or 4 yrs old .As u get older u pick sound up where is coming from like cars ,traffic light signal,buses and alarm etc etc .I could hear everything and speak very fluent oral .During the school holiday I go with groups of deaf people do some activity .As some people was signing BSL (no speech) and i did learn some BSL because i want to communicate to them also i might need it in the future if someone come signing to me .
 
I am profound deaf, am too profound that I can't hear nothing on the audio test. They dont bother anymore testing my hearing I recently went to the ear doctor he did not even bother doing the audio test. I do wish there are more options with hearing aids on my level however I had no choice but go to CI. I do have hope someday that there will be better technology in hearing aid for my another ear.
 
I was born severe to profound but was not diagnosed as Deaf until I was 9 years old. Apparently I was very good an compensating for my loss as well as reading body language. I passed the hearing test by reading the testers body language as a child to tell when a sound was being played ( or so I was told I don't remember purposefully doing this ). It wasn't until she moved away from the window in the booth that I failed the test.

My speech as a child was unintelligible and I was misdiagnosed as autistic which delayed my diagnosis as Deaf.
My speech now? due to many years of speech therapy I can speak but only those that know me well can fully understand me.
I went to public school...wanted to attend an all Deaf school but I wasn't "deaf enough" according to someone my parents spoke to at the school.

yes..information wise let the child learn ASL/speech combo and do not FORCE speaking on them. That's all I'm willing to share.
 
BecLak said:
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Just over 3 years ago, I had a rude 'wake-up call' realizing that nothing had changed. All the speech therapy had not benefitted me at all, it was more of a curse than a blessing because people around didn't believe me when I told them I couldn't hear them or couldn't understand what they were saying. my being oral only benefits the hearing person in the conversation. All the abasement that I received through my life due to my hearing loss came flooding back like a tsunami. I realized I was living a lie and it devastated me.
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I am wondering, if you're willing to talk about it... what was the "wake-up call" that made you see everything so differently?

I know that it some ways it is harder for oral deaf and hard of hearing people, because (as you say) hearing people don't believe that they're really not hearing. They have different - often unrealistic - expectations than they would of someone using sign. A friend of mine has 2 adult children, one deaf and one hard of hearing, and she has certainly noticed that her deaf daughter sometimes gets an easier ride than her hh daughter.

I think about this a lot, as my son (age 5, moderately-severe to profound, sloping, bilateral naidas) has great speech, and is an excellent lipreader, and I am certain people think he hears more than he does. He knows ASL, but doesn't use it much himself. Refuses to, really. I am trying to keep the ASL input up so he has access to that language if he changes his mind when he's older.
 
jbeer said:
I am wondering, if you're willing to talk about it... what was the "wake-up call" that made you see everything so differently?

I know that it some ways it is harder for oral deaf and hard of hearing people, because (as you say) hearing people don't believe that they're really not hearing. They have different - often unrealistic - expectations than they would of someone using sign. A friend of mine has 2 adult children, one deaf and one hard of hearing, and she has certainly noticed that her deaf daughter sometimes gets an easier ride than her hh daughter.

I think about this a lot, as my son (age 5, moderately-severe to profound, sloping, bilateral naidas) has great speech, and is an excellent lipreader, and I am certain people think he hears more than he does. He knows ASL, but doesn't use it much himself. Refuses to, really. I am trying to keep the ASL input up so he has access to that language if he changes his mind when he's older.
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That's pretty much why we're pushing a full toolbox.....those of use who are HOH are usually automaticly shoved towards the hearing world. You might want to play a game to have him realize that "OMG! I can talk with and WITHOUT my hearing aids." I remember when I was little I thought that I didn't "need" Sign......(was exposed to a voice off girl who was our neighbor) As language gets harder, your son may start realizing "OH! I can talk in noisy situtions, I can talk across a room etc etc etc!" This language is SO cool...it's like having a superpower!
 
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jbeer said:
BecLak said:
Just over 3 years ago, I had a rude 'wake-up call' realizing that nothing had changed. All the speech therapy had not benefitted me at all, it was more of a curse than a blessing because people around didn't believe me when I told them I couldn't hear them or couldn't understand what they were saying. my being oral only benefits the hearing person in the conversation. All the abasement that I received through my life due to my hearing loss came flooding back like a tsunami. I realized I was living a lie and it devastated me.
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I am wondering, if you're willing to talk about it... what was the "wake-up call" that made you see everything so differently?





I know that it some ways it is harder for oral deaf and hard of hearing people, because (as you say) hearing people don't believe that they're really not hearing. They have different - often unrealistic - expectations than they would of someone using sign. A friend of mine has 2 adult children, one deaf and one hard of hearing, and she has certainly noticed that her deaf daughter sometimes gets an easier ride than her hh daughter.


]I think about this a lot, as my son (age 5, moderately-severe to profound, sloping, bilateral naidas) has great speech, and is an excellent lipreader, and I am certain people think he hears more than he does. He knows ASL, but doesn't use it much himself. Refuses to, really. I am trying to keep the ASL input up so he has access to that language if he changes his mind when he's older.
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I will try to share the incident without giving too much specific detail. I was in an office one day on some business. I was in the middle of responding to some important questions when an staff member came across from the other side of the office and started berating me, yelling right in my face repeating slow and deliberatingly the request the person I was already speaking to had asked (which I understood fine). ......'Yoooouuuu knooooow.........etc.' This person's manner was belittling, making me out as if I was dumb and stupid. Silly as it may seem, it reduced me to tears as it brought back a flood of memories from school days in mainstream schools. I had my whole life, tried my utmost to be as hearing as possible getting my speech to a point where I was an 'oral success' and a sought-after public speaker (yes orally). With all this effort, I thought I had overcome my hearing loss and I had become 'hearing' where no one but my immediate family need know or notice. I had grown up being ashamed of my deafness, thinking it was something wrong and broken and needing to be fixed so I could lead a 'normal' life and be whom I was meant to be. That incident brought me to my senses that I was just fooling myself that things were any different just because I could speak well. After that, I realized that it was my perspective that needed to change, I needed to accept my deafness. Since then, I have made gradual changes to become voice-off and to use sign language as my primary language - total visual/ non-verbal communication. I know this is kind of thing is familiar to many of us and that i am not the only one this happens to, I know it may not stop the idiots who continue to mock, but changing my mode of communication to visual does wonders for me and my sense of self-esteem. It's a clear statement to everyone around me. No more needing to explain or excuse myself, no more being ashamed or pretending or hiding. No more effort to use speech, when it only benefits the hearing person not me. I'm Deaf and proud of it.
 
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BecLak, thank you for sharing your story. I am so glad that you have reached a point in your life where you are comfortable and confident being yourself. And, what a jerk!! Grr. I can't stand people like that.

We've always tried to treat Harry's hearing as part of who he is, nothing more, nothing less. Nothing to hide, not the big issue that must supercede everything, nothing to be self-conscious about. nothing unusual. If we're not going somewhere where he needs them (school, basically), we leave it up to him to put in his hearing aids or not. Whether & when he does depends on a number of things (if he's got a cold he doesn't like them, but if he wants to watch a movie he does).

We let him choose the colours of his hearing aids and earmolds - red aids with glow-in-the-dark rainbow molds. They were the hit of his class, and when he was in a program with other HH kids, they all wanted them too. His teacher told me at least one other parent had gotten into a dispute with their child, because the child wanted molds like Harry's, but the parent wanted something "discreet." Unnoticeable. Because heaven forbid someone find out your child is hard of hearing!

A friend who works with Deaf and hard of hearing children told me that some parents from other cultures haven't told their extended families and don't let their kids wear hearing tech around them, because they believe that deafness is a punishment from god, and obvious "proof" that the mother has sinned, and they don't want to bring shame upon the family. I find it stunning that people still believe this stuff!! I have no words, it's just appalling.

I know sometimes my son feels uncomfortable and shy about his hearing aids, but I hope he grows up to be confident and proud to be who he is: a smart, funny, good-looking Deaf guy.
 
My daughter loves to have different color ear molds also stickers to put on her hearing aids. She is not afraid to wear her hair up either to show them off. when kids ask her she says they are my hearing aids they help me hear. end of story and she continues to play. Confidence I want to keep that up. She knows not everyone has hearing aids. But nobody is the same is what I tell her. we are all different and that is what makes us special. She is almost 7 so I know I have some rough years ahead me like all parents do with their kids. confidence is so important for every child.
thanks to everyone who shares their stories...glow in the dark molds??!?! I will have to ask about that next time!!! how awesome is that!
 
jbeer said:
BecLak, thank you for sharing your story. I am so glad that you have reached a point in your life where you are comfortable and confident being yourself. And, what a jerk!! Grr. I can't stand people like that.

We've always tried to treat Harry's hearing as part of who he is, nothing more, nothing less. Nothing to hide, not the big issue that must supercede everything, nothing to be self-conscious about. nothing unusual. If we're not going somewhere where he needs them (school, basically), we leave it up to him to put in his hearing aids or not. Whether & when he does depends on a number of things (if he's got a cold he doesn't like them, but if he wants to watch a movie he does).

We let him choose the colours of his hearing aids and earmolds - red aids with glow-in-the-dark rainbow molds. They were the hit of his class, and when he was in a program with other HH kids, they all wanted them too. His teacher told me at least one other parent had gotten into a dispute with their child, because the child wanted molds like Harry's, but the parent wanted something "discreet." Unnoticeable. Because heaven forbid someone find out your child is hard of hearing!

A friend who works with Deaf and hard of hearing children told me that some parents from other cultures haven't told their extended families and don't let their kids wear hearing tech around them, because they believe that deafness is a punishment from god, and obvious "proof" that the mother has sinned, and they don't want to bring shame upon the family. I find it stunning that people still believe this stuff!! I have no words, it's just appalling.

I know sometimes my son feels uncomfortable and shy about his hearing aids, but I hope he grows up to be confident and proud to be who he is: a smart, funny, good-looking Deaf guy.
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That is AWESOME!!!!!! You are definitely on the right track......you're doing ALL the right things!!! And GOD that parent who didn't want their kid wearing cool hearing aids...........come on. Would the parent get skin colored glasses for their kid?
 
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