to those BORN with severe-profound hearing loss

Status
Not open for further replies.
AND I just have to say....we have parents of dhh kids who have transferred them from inclusion settings to deaf schools/programs, and the parents cannot say enough good things about the dhh programs/schools. I think that really says something!
 
I am very much on the same boat as DeafBadger...

i cant be choosy about freinds either, and 'grass is geener' sydrome plagued me to this day too...(as does the mowing analogy as well)...

to me
that what i fear is,
if you get your kid to have a CHOICE of having a LIFE, then be damn sure you're also getting your kid to be Educated...not jsut in school;s stuff , and not jus Deaf culture, but also What IS hearing culture, more to the point, Id encourage you to raise up your child with a relationship in which you two , often have discussion 'what IS hearing culture'..and 'how to survive, and climb above not by making barriers climable but dissappear, like...live life as so these barriers did not exist" ..thats the thing as Deaf badger said "as long as it delivers"
its sadly going to be a FIGHT, but and you will be angry and have evey right, but dont let it embitter you...fight the good fight for a life to be well lived and loved...

oh, 'dont get the wrong idea bout overcoming 'barriers' which is all too often confused with 'denial' of one form or another...what I really meant is that 'get arrogant and be an 'achiever' to be a miilionaire or go to MIT..but to actually GET THERE and live the dream as IF your child was hearing, by this i also mean, to choose a life, not because its possibilities are limited by what 'deaf can DO", but by what he/she wanted to DO"
I really wish this for 'my own hypotheical child'...im a media studies student because i dont want to jump on 'education' bandwagon...and get a lousy job...sic thats happening alot now a days...dont fall for that...

Cheers.
G

That is a very difficult question to answer. Having had no personal experience with deaf schools, I can't say whether I would have liked it or not. Since I started making connections with the local Deaf community in 2011, I have had conversations about deaf schools with some people. Some of them envy the fact that I went to a regular K-12, saying that I "got a better education than they did." A couple people mentioned apparent "problems" at the deaf school, but would not specify what those problems were, like it was some sort of secret.

I don't really understand what they were alluding to. Initially, when I first looked at photos posted on Facebook about their life at the deaf school, they all seemed to have friends, sports and all the rest. A pretty normal student experience. I was kind of wishing I had had that. But then I realized, it wasn't the *place* (the deaf school) that I wanted, it was the openness, the access, the social scene. The fact was that I was in a bubble in the school system, but if there was a proper deaf/hoh program at a regular school, that didn't have to be.

It was kind of odd though, me wishing I had gone to a deaf school, and a couple of them wishing they had gone to a regular school. Maybe it's an example of the grass is greener on the other side of the fence, but it gets mowed down anyway. ;)

My parents told me that they did not want to send me to a deaf school because they did not want to "break up the family." Moving there would have meant moving to a tiny town in the middle of nowhere, because that's where the school was founded in 1890-something. Very poor job prospects and very small town living.

It seems to me that there is nothing inherently wrong with a regular school, provided that there's a program there for deaf/hoh students that doesn't deny them the use of sign language and that allows them to have deaf/hoh friends.

For my own part, being mainstreamed meant that I was in town with my family, close to my grandparents. I had very few hearing friends (actually, only 3. one lived on my block, one was in my church and boy scouts, and the other was a friend of the second one), but I ended up with a couple in high school that I did some things with. Such as Boy Scouts and sport fencing. However, I was also vulnerable to whatever hijinks a hearing person might pull, because I couldn't hear them and was a bit socially naive for my age. (As one would be if they could not over hear the stuff kids say to each other and work out.) I'm probably still socially naive today. I'm constantly blindsided by social stuff in the hearing world. I literally never hear it coming.

Maybe I would have had more hearing friends, if I identified publicly as deaf/hoh. As it was, I was actively discouraged from considering myself that way (I was told I was Hearing Impaired, not Deaf), so I really tried hard to fit in with hearing people, and not let on that I had no idea what was being said or what was going on. I followed other people around a lot. If I didn't follow and discover what was going on by sight, I would have been completely left out. Well, truthfully, I was left out anyway.

I also was not in much of a position to be as choosy about my friends, because dropping a hearing friend meant being that much more lonely. Given the choice of putting up with a "friend's" BS towards oneself, or being lonely, it is tempting to just put up with it. I got into trouble sometimes because of this. That's why I suggest that your kids have the opportunity to being around deaf/hoh friends. It doesn't have to be at a deaf school, if there are some locally.

Being in a hearing school meant that I made connections with hearing students, some of which persist today. Not necessarily as "friends," but as people you keep in touch with. Facebook has been great in finding people who used to be in Boy Scouts, or in my classes. I never hung out with them back in the day, but I learn about what they are doing and stuff. It just seems to add to one's world. The reason I'd say this is of note is because it seems to me that hearing and deaf cultures don't seem to have a lot of cross-pollination. So knowing more people in either community is helpful, I think.

(Edit) In short, I do wish things would have been different for me growing up. But it's really centered around access, communication, social life, etc. Deaf school or a solid deaf/hoh program in a regular school... they may all be great, as long as it delivers. Deafness is something that produces loneliness. That will be one of the biggest problems your children will face, unless there's something in place (a deaf/hoh community) to fill that need.

As for CI or not, I'm not touching that issue with a ten-foot pole. :) There are some deeply divided opinions in the community about that. I have absolutely no experience with CI's and can't say one way or another.

I'm sure it is very tricky trying to balance all the pros and cons of staying or moving.

I think the key thing is access and a social life. Deliver those two, in any school and home environment, and I'm guessing your kids will probably do okay. Especially with loving parents who are so involved in their lives.

Good luck.

(Edit) All of this is just my opinion based on my experience and personal thought processes. Your mileage may vary. :) I don't have all the answers... I can only try to impart what it's like being deaf, and impress upon you the importance of full access to education and social life. It's all about communication. It's all about preventing the extreme loneliness that many deaf/hoh people deal with. That's what I think.


By the way, I'm also 80db/90db, same as your son.

Good luck. I know it can't be easy figuring this out.
 
Couple of thoughts........At home FM usage really isn't a "gotta have"
Virtually all of us grew up without at home FM device usage, (including the heavily oral people) and we've done fine.
100 years ago people didn't have mobile phone and they did fine.
You not having FM available doesn't mean it's of no use for children nowadays..
Second of all, auditory verbal therapy is TOO intense for most people. Your son can learn to speak with just plain old SLP internvention. AVT is pretty much child abuse as it hyperfocuses on sound, sound sound and hearing, hearing hearing, and doesn't even allow a dhh kid to speechread. Also AVT expects parents to raise their kid, like it's an eternal therapy session. Oral skills are awesome......but thehing is, AVT is basicly "gotta make sure your child's learning every single second of every single day. Gotta catch up and function as "normal"
You should stop writing about AVT as if you know about it. What are your experiences? Are you a parent that took a child there and experiences AVT? Were you a child that experienced AVT? Or are you a HOH person that heard that sign language is discouraged at AVT sessions and drew the quick conclusion that it is child abuse?
I have never been in an AVT session with Lotte. It was not available. What I have heard is that it's not only for the child, but also for the parents to learn how to help their child get the best out of the CI. Wish I had had some guidance at that time.
I didn't like the idea that we would not be able to use sign. But in fact, I have heard that there are AVT therapists that do use sign...
I have also heard of AVT therapists that went too slow for a child, and the child got bored.. And misbehaved...
In the end... I never experienced it.. I have only heard.. Almost exclusively positive.
You also probably only heard about it. Second, third, fourth hand horror stories in the Deaf community to keep the fear of CI alive..

Isn't it important to support any way to improve the communications kills of a child. And if sign language is not part of it... Isn't that fine as well.

There is absolutely no need for sign language when there is good communication using speech. That doesn't mean you cannot use signs, but there's no need. Like there's most of the times no need to learn French when you live in USA..
 
100 years ago people didn't have mobile phone and they did fine.
You not having FM available doesn't mean it's of no use for children nowadays..

You should stop writing about AVT as if you know about it. What are your experiences? Are you a parent that took a child there and experiences AVT? Were you a child that experienced AVT? Or are you a HOH person that heard that sign language is discouraged at AVT sessions and drew the quick conclusion that it is child abuse?
I have never been in an AVT session with Lotte. It was not available. What I have heard is that it's not only for the child, but also for the parents to learn how to help their child get the best out of the CI. Wish I had had some guidance at that time.
I didn't like the idea that we would not be able to use sign. But in fact, I have heard that there are AVT therapists that do use sign...
I have also heard of AVT therapists that went too slow for a child, and the child got bored.. And misbehaved...
In the end... I never experienced it.. I have only heard.. Almost exclusively positive.
You also probably only heard about it. Second, third, fourth hand horror stories in the Deaf community to keep the fear of CI alive..

Isn't it important to support any way to improve the communications kills of a child. And if sign language is not part of it... Isn't that fine as well.

There is absolutely no need for sign language when there is good communication using speech. That doesn't mean you cannot use signs, but there's no need. Like there's most of the times no need to learn French when you live in USA..
Did you fail to notice the title of the thread?
 
I think with correlating deafness by decibels is that with dB you can estimate and find out how 'loud' a sound needs to be heard by someone with dB loss, but the problem is doesn't mean it is going to be understood - that is represented on the frequency (x-axis) of the audiogram. I'm in the 80-90's in one ear, but the recognition in it is so bad that wearing hearing aids don't help at all, it just amplifies garbled sound. It's like trying to be able to hear louder underwater - there's no point, it doesn't get translated well.
I know some deaf people who have better decibels than me but their recognition of sounds is worse than mine.

I do not consider myself an expert in audiology, however I think you have to factor primarily three things to get an understanding of how much your child can hear. Other than dB, you have to understand the correlation with frequencies/pitches, then finally you have to account that everyone adjusts to their hearing loss based on the environment they were raised in, which primarily relates from types of social bonds they learn which determine their adaptation to it.

That last part about bonds, that's where I think there is a huge displacement in variation between how children interact in social institutions such as families, school and the likes. The families who have primarily deaf people in them would foster a different environment and the child would adjust to their lifestyle differently than a child who grows up in hearing families.

So in short, there's going to be a big difference in trying to get everyone's experiences by examining how deep their hearing loss was, the factors and variations will not be standard across each individual.

On topic, I was mainstreamed K-12, college. I was asked by my parents to make a decision if I wanted to go to oral/mainstream vs. a sign language based school during preschool, and I apparently chose the oral route when I was four. I wear HA's, I do not have CI. I have very little speech discrimination but this is probably because of being in oral/mainstream most of my life. I also think FM is hit or miss just for the reasons I wrote about Frequency differences earlier - it is just going to amplify sound which is useless if it can't be understood, which is the reason why it didn't work for a lot of people whose hearing losses were severe.

IMO, it's probably better if children were to learn both languages so they can determine which one they want to use in the future. They might want to drop oral or drop sign when they are teenagers in favor of making new groups of social connections, or later on late in life they might want to explore the other side. So having both arms them so they can make a choice of their own which will make you (as the parent) comfortable that they're happy with their lives, instead of having only homogeneous proficiency in one language where they might be disappointed or lost later in life.
 
I used to have trouble with the "TH" sound but it went away after I got stuck with braces on my teeth lol

I had braces too but that did not help me to say 'Th' . I really think it had a lot to do with my dad never using in 'Th" sound' no one in my famliy helped me with my speech. My sisters and brother only made fun of my speech.
 
Anyone that was BORN with this kind of loss- Adult,teen or a parent who has a child with this loss that wears HEARING AIDS not a CI. any advice info will be helpful. Tell me your story. As in story I mean what can you hear ? How is your speech? Do you go to public or deaf school? Any other info you have that you think would be helpful to me would be nice. we sign ALOT aswell and thinking of an at home FM for when he starts walking/crawling. we see a SLP already and trying Auditory Verbel Therapy. I am determined to do what I can to help my son develop speech, listening skills with the hearing that he has if that is possible. Thank you to anyone who responds anything will be helpful.

Hi Suzanne, my son Harry is 5 1/2. He was identified as moderately-severe to profound through the Universal Newborn Hearing Screen. Here's a snapshot of his first audiogram - n.b. he has never got anywhere near a 40db threshold since then! Ha. He's usually around 55db at 500hz and then sloping to 100+ at 400hz: http://blog.mbaweme.com/2007/05/big-news.html

Anyway, he's been wearing hearing aids since he was 4 months old. Didn't really start speech therapy till he was a year old. When he was 2 1/2, we got him the Phonak Naidas with SoundRecover. Because his thresholds are high in the higher frequencies, he wasn't picking up any of that, but the Naidas bring those sounds down to a lower frequency where his thresholds aren't quite as high.

We saw a speech-language pathologist (who has AVT training, but also knows ASL if you can believe it) every week till he was 3 1/2 I guess. Then we stopped seeing her for a while because his spoken language was "too good" so the sessions weren't covered by our insurance, but saw her again for assessments and did another three months of weekly sessions when he was 4 I think, to work on his articulation.

He also attended an ASL preschool from when he was 2 till he started kindy when he was 4 1/2. He spent this summer there, too. The preschool kids are a mix of a few hard of hearing, 1 deaf, a bunch of CODA, and some hearing kids from hearing families. There were 4 teachers, 1 oral deaf with hearing aids, 1 voice-off Deaf, 1 hard of hearing with hearing aids, and 1 hearing. Then the hearing teacher went on mat leave and her replacement was hard of hearing with hearing aids. I think having teachers with hearing aids was a really good thing for him - both for social/emotional reasons and because he learned quickly how to take care of his aids/change batteries etc.!

A year ago he started junior kindergarten. He did a half-day in a language enrichment program with other hard-of-hearing kids with amplification & similar language skills, and a half-day in a mainstreamed oral program where the teacher had an FM system. First half of the year was rough, as they had an old crappy FM, after they got a shiny new one, things got better.

This year he is just in a half-day of mainstream/oral kindy, as his language is "too good" so he didn't qualify for the language enrichment program. His language skills are in the 99th percentile & he's reading at a grade 2 level.

He does rely on lipreading a fair bit (he's an excellent eavesdropper, ha) and you do need to be mindful of being in "the listening bubble." When he was first identified, we were told that he didn't qualify for the CI program here, but since then we've been told that he could get CIs if we wanted. We've been in the "if it ain't broke" camp on that. He's doing great, and I can't even think about contact lenses without cringing, so the idea of surgery that isn't absolutely necessary is crazy to me.

But really? When he was 6 months old? We had no idea how things would turn out. That's why we decided to do both sign language and speech therapy - hedging our bets, so to speak. I'm glad we were told he "didn't qualify" for the CI program at the time, because I'm not good with big decisions. Glad I wasn't faced with that one!

I know parents who've had great success with CIs on their kids. I've also known parents who've struggled, and one family whose daughter didn't qualify because her auditory nerve was "too small," so they travelled out of country and paid out of pocket for the surgery, and... it didn't work because of the nerve problem. The people who've had the best outcomes - whatever methods they choose - are the ones who've changed and adapted as their child's needs changed. You don't have to decide right now. In fact you shouldn't decide right now! Do the research, learn all you can, and the answers will come in time. Just wait.

Really, every kid is so different, and when they're little babies you have no idea what the future holds... Keep asking questions, talking to people, and most importantly, playing with your baby. Talk, sing, sign, play pat-a-cake, tickle... just enjoy each other and learn and grow together. If you take the cues from your baby, keep trying different things until you find something that works and feels right, your son is going to be just amazing.
 
Last edited:
I'm in my 40s now. I apparently lost my hearing as a baby. I am profoundly deaf and always have been. I wasn't aided with HAs until I was seven and a half. No one knew until then. I went through kindergarten and the first six weeks of first grade without any idea of why I was there. I then went to a school for children with disabilities for the rest of the year (and no idea why I went there, either). It wasn't until someone suggested a hearing test during the summer of 73. This was all in Odem/Corpus, and then we moved to San Antonio to go to the school for the deaf there. I whizzed through their 4-year program by November of 1974. I was mainstreamed into 2nd grade, and WHAT a war that was! I still had a lot of catching up to do to be on par with my peers. And I was still wild socially and emotionally for a long time after that. I still carry these traits, though I learned over the years to calm down and try to think things through in confrontational situations. I'm not like most other profoundly, prelingually deaf people because of the length of time in which I remained in this "uncivilized state." I was not communicative beyond simple words until a few months after I was aided. I still remember what it was like to be in that state, not knowing names for most things, a calendar, time, concepts like, "Mommy, there's something in my bedroom."

I managed to survive and ended up with my masters from UT Austin.
 
Couple of thoughts........At home FM usage really isn't a "gotta have"
Virtually all of us grew up without at home FM device usage, (including the heavily oral people) and we've done fine.
Second of all, auditory verbal therapy is TOO intense for most people. Your son can learn to speak with just plain old SLP internvention. AVT is pretty much child abuse as it hyperfocuses on sound, sound sound and hearing, hearing hearing, and doesn't even allow a dhh kid to speechread. Also AVT expects parents to raise their kid, like it's an eternal therapy session. Oral skills are awesome......but thehing is, AVT is basicly "gotta make sure your child's learning every single second of every single day. Gotta catch up and function as "normal"

Well when he starts walking and he cant hear me from another room so the FM will come in handy for that and outside, playgrounds so I dont have to constantly run up to him to get his attention. my voice will go right to the aids. The audiologist said it should help IF he benefits from his aids that is. My daughter loves her FM she has at school the testing we did with and without it ..night and day difference. As for the AVT that isnt the only therapy he will get it will help but we will STILL sign and let him read lips. He needs to master that ..I feel like we can hit all angles of things therapy wise with him im sure it will all be benefical. Im going to do all kinds of "therapy" with him ..but of course try to make it as fun as possible. we did that for his sister and at almost 7 she still loves going to speech. If she doesnt want to go there are days where she is tired from school then she doesnt go. no pressure.
 
Well when he starts walking and he cant hear me from another room so the FM will come in handy for that and outside, playgrounds so I dont have to constantly run up to him to get his attention. my voice will go right to the aids. The audiologist said it should help IF he benefits from his aids that is. My daughter loves her FM she has at school the testing we did with and without it ..night and day difference. As for the AVT that isnt the only therapy he will get it will help but we will STILL sign and let him read lips. He needs to master that ..I feel like we can hit all angles of things therapy wise with him im sure it will all be benefical. Im going to do all kinds of "therapy" with him ..but of course try to make it as fun as possible. we did that for his sister and at almost 7 she still loves going to speech. If she doesnt want to go there are days where she is tired from school then she doesnt go. no pressure.

Oh, so you're doing it more on an enrichment basis right? Nothing wrong with that, if you're doing the full toolbox approach, and not doing it as a primary thing, I think it would be doable. Kids have had auditory training for years and years.It can be hard thou since I do know that the intensity can cause burn out. Also the therapists can try to pressure you into a "gotta make sure each and every moment is filled with formal learning" mentality.......but it might be useful. I think too that its prolly the closest you're going to get to a speech therapist who is experienced with dhh kids, as it sounds like you're in an area with limited dhh resources. It could work...
 
Oh, so you're doing it more on an enrichment basis right? Nothing wrong with that, if you're doing the full toolbox approach, and not doing it as a primary thing, I think it would be doable. Kids have had auditory training for years and years.It can be hard thou since I do know that the intensity can cause burn out. Also the therapists can try to pressure you into a "gotta make sure each and every moment is filled with formal learning" mentality.......but it might be useful. I think too that its prolly the closest you're going to get to a speech therapist who is experienced with dhh kids, as it sounds like you're in an area with limited dhh resources. It could work...

well he has a team formed now that I am happy with....his dhh teacher, speech teacher, early intervention teacher all through the school they come to our house. Now we have an outside speech teacher the same one my daughter goes too. Then after a few phone calls I made... I just got connected with a deaf preschool in the city for therapy but we live hours away so we will be doing it on skype. they are also connecting my outside speech teacher with a AVT just to make sure we get everything covered. Plus any advice, tips or techniques they have will be helpful. We will see what happens. plus he has me, his mother the number one teacher that will fill him full of ASL and keep the ball rolling staying on top of things with his team. 6 months and we have 2 signs down "mama" and "milk" :D
 
I was born with severe-profound loss/lost it prior to 3 months of age( hard to tell) anyway i had hearing aids from 14 months, parents learnt to sign when i was in school( about 3-4yrs) but i would not sign back so they ventuakly stopped. I went to a school for deaf children for myprimary years and was placed in an oral class. Did well with hearing aids until i reached the age of 8 ish i could not long hear my name/ respond so went for the cochlear assesment, after a delay(i was borderline for the ci, if it was today id be a candiate straight away) anyway hey decided yes and I had my operation in the autumn of 2000 aged 10 1/2. Was aware what It was cos saw kids at school with them. Still igned with friends afterwards most of them wearing aids and they dont care abt my CI. Do not sign at home or ork, i talk, and use lipreading skills to aud my understanding, still like to lipread all the time, why struggle if somethings rght in front of you(lips)

In high school, i had a CSW in every class and was in all classes same as my friends so was exposed to sign and used it daily :) now mum still signs the odd word and fingerspells.
 
You know, I wonder if they've renamed specialized speech therapy for dhh kids, auditory verbal therapy. It seems to be the new label...I know someone here stated that their kid, who was going to Clarke was receiving an "auditory verbal" education...Thing is, an auditory verbal approach pretty much says that the only good educational placement is a mainstream inclusive one.
 
Oh and the thing is...if he has a regular speech teacher, (who is experianced with dhh kids)he may not need the intensity of a certified auditory verbal therapist.Many dhh kids have developed speech ability without hyperintense instruction.
 
...There is absolutely no need for sign language when there is good communication using speech. That doesn't mean you cannot use signs, but there's no need. Like there's most of the times no need to learn French when you live in USA..
No need unless:

➡ You want to communicate with people who do use sign language.

➡ You want to be prepared for a day when you might not have usable speech or hearing.

Same with French:

➡ You want to communicate with people who speak French, or read their literature in the original language.

➡ You want to be prepared for a day when you might travel to an area that uses French (and that's not just France).
 
No need unless:

➡ You want to communicate with people who do use sign language.

➡ You want to be prepared for a day when you might not have usable speech or hearing.

Same with French:

➡ You want to communicate with people who speak French, or read their literature in the original language.

➡ You want to be prepared for a day when you might travel to an area that uses French (and that's not just France).
or if you want to cover all bases, and make sure that your kid or you can function both with and without technology. Yes, there ae some amazing "almost hearing" kids with both cis and has.BUT, even kids with unilateral losses can and do struggle in difficult listening situtions
its like driving. just bc you're a good driver in optimum driving conditions, it doesn't mean you're going to be a good driver in less then optimum driving conditions. Also, it might be a good way to increase self esteem. Seriously, how can anyone develop good self esteem, when they are expected to function "normally"all the time?
in addition, growing up with sign and Deaf culture allows dhh kids to become part of a vibrant community...a place where we fit in and belong. If oral only was enough, then we wouldn't have a plethora of hoh oral only people coming here, saying that "I wish I'd gotten asl and deaf culture and education. Instead all I got was speech therapy." Bear in mind that a lot of hoh kids hear very well and may almost be audilogically almost hearing with their aids....exactly the same as lotte is functioning.
 
.......Bear in mind that a lot of hoh kids hear very well and may almost be audilogically almost hearing with their aids....exactly the same as lotte is functioning.
.. now you're starting to get the idea..
 
.. now you're starting to get the idea..

NO, YOU do not get it. If those hoh kids who were labeled as " almost hearing" come here saying they wish they had been able to become fluent in sign, and had exposure to deaf Ed/deaf culture/deaf community, I think that says a lot about the hearing worlds assumption that hoh kids are more hearing then deaf. You know Cloggy, believe it or not those of us who speak out against oral only are not just severe/profound ers who only got to moderate listening levels with our aids/cis. many of us were labeled as "almost hearing" who didn't " need" asl and other stuff that deafer kids got....Guess what? I listen to music ( and love it) as do many of my deaf friends. I am actually an aural learner. I can hear a lot of stuff with my hearing aids...but that doesn't make me hearing at ALL. I know it's hard for you to believe, but there have been generations of hearing parents of deaf kids, who have been convinced that their kid is going to thrive in the hearing world, bc their kid could fake it. it would be just like YOU being able to function somewhat with English, but your strength is your native language
 
Status
Not open for further replies.
Back
Top