Great post messymama!!!!! I do have to say I agree with you. It's possible that the "improvements" with CI has more to do with the fact that eligibilty has been loosened. Like in the old days, the only kids who got CI were deep profound...now it's kids who show some response with HAs (like they may not be functionally HOH, but still get some speech perception with HA) So for them it's turning up the volumne. Whereas for kids who only get enviromental sounds from HA, they would only get some speech perception. Deep profound kids are the ones who are rarest, so that may read for the supposed "better fucntioning" with this generation of implantees.
HAs FOR BABY BEFORE CI
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Great post messymama!!!!! I do have to say I agree with you. It's possible that the "improvements" with CI has more to do with the fact that eligibilty has been loosened. Like in the old days, the only kids who got CI were deep profound...now it's kids who show some response with HAs (like they may not be functionally HOH, but still get some speech perception with HA) So for them it's turning up the volumne. Whereas for kids who only get enviromental sounds from HA, they would only get some speech perception. Deep profound kids are the ones who are rarest, so that may read for the supposed "better fucntioning" with this generation of implantees.
Audiofuzzy
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I was wondering if this is possible for your family to move, then,
someplace where there is a bigger deaf community and thus the better opportunities for your child in the future.
Like many people wrote you here before, it is natural for the hearing person who never ever had any prior experience with the deaf, deafness
to panic and feel lost.
Every hearing parent of a newly diagnosed deaf child goes thru it.
The professionals make matter worse, as usually they are hell bent to "fix"
the child by insisting on making it hear better, talk better, etc
and having the parents believe that indeed making their child to speak
is the top priority.
Well, it really isn't.
It is nice if there is speech possible, but believe me, one can live and live well without it.
I my opinion, the best option is to have everything for your child - HAs, speech if possible, but not making it priority,
sign language and access to the deaf community - the latter even more important than the first.
Messymama gave you wonderful advice.
If you could travel anywhere and meet Deaf Community, see how they are,
how happy and well in their deafness they are - I am sure your fears will be
way diminished.
Don't look at deafness as disability, because it is not- it is just a different way of living.
Look up on the 'net famous deaf people,
look up any profession and find out if there are such deaf professionals.
You might yet be surprised
Fuzzy
Jazzberry
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You bet.
I just looked up MSSD and see that it was authorized (?) as early as 1969! I assume it opened shortly afterwards. It would have been great to go to a school where I could have actually known what was going on most of the time.
For all intents and purposes, I consider myself self-taught. In some areas I did a good job, in other areas -- not so much. And of course, socially, school was a disaster.
I know....totally. Did you grow up in NY state? I really think they need to open the Deaf Schools/programs to ALL Dhh kids! Bet you anything that would do tons to increase the enrollment numbers.....I also think deaf schools need to create special programs to attract middle and high school dhh kids......like " having trouble in the mainstream socially and emotionally? Come here! You can take mainstream classes, but take "deaf courses" on campus and live with other dhh kids! That would revitialize res schools immensly!
Jazzberry
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I grew up in Illinois. I started grade school (kindergarten) in 1965 and high school in 1973. My city didn't have middle schools; grade school included kindergarten through 8th grade. I don't know what was available in Illinois at the time, but looking back I'm kind of amazed that I was mainstreamed. I don't understand why but there is no one that I can discuss this with.
If I missed out on getting an education where ASL was the language used and the focus was on teaching math, English, science, history and the other standard subjects with high standards -- then I really missed out.
But its also possible that I may have been sent to a school where the focus was on giving everyone speech therapy and the only subject seriously taught was how to apply for SSI benefits. If that was the case, than as bad as my situation was, I did escape a worse one.
I don't know what the options were in my home town back in the 1960s and 70s.
I'm not sure what you mean by taking mainstream classes and deaf courses on campuses. Do you mean having d/hh kids move to a deaf campus with dorms but attend mainstream public schools nearby, and learning ASL at night on campus?
ETA: From reading other posts here, both from you and others, I know that in some parts of the country d/hh kids have a lot of good options now and I'm happy for them. I just wish that was the case for the entire country.
Oh wow....so you're around my friend Nancy's age. Are you more HOH? Because I know that even before the law that encouraged mainstreaming, HOH kids did attend deaf schools, but a lot of them were encouraged to be soloataires.
Which is kinda weird b/c until mid 70's a lot of deaf schools were more HOH style curriculum. Remember the sign revolution didn't happen until the rubella bulge, when a lot of kids started struggling to learn speech. In fact ASL was very undercover in schools for the deaf.....right? And yes, you have the right idea with my idea for middle and high school. Kids could live at the deaf school, in the dorms. A lot of them would prolly have very scattered academic abilties b/c of being mainstreamed. ....they could take courses like deaf hisotry and ASL and maybe "Mary Hare Grammer School" (only English speaking oral high school,it's in the UK) style courses for hoh folks, and if they were very strong in a subject they could go to a mainstream school that was mor eexpeiranced with dhh kids. The trouble with mainstreaming is that they saw the kids who mainsteamed from schools for the deaf or the blind and thought that would be doable in ALL public schools. But most public shcools aren't fmailiar with how to teach kids like us.
coolgirlspyer90
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I've seen babies being implanted at an early age before they even got a chance to wear hearing aids. And honestly, even with me having bilateral implants (got implanted at age 8 or 9) I believe that babies should wear hearing aids FIRST before implanting. Because as they grow up, their personality is beginning to grow as well. I really wish that sometimes parents would have the patience to wait for their child to be a little bit older to make the decision on their own. And I made the decision to get cochlear implants when i was 8, and thats a big decision for a 8 year old. Because by then they would understand it a little bit more, and i sometimes hear other deafies saying that they don't like the implant because they feel that its not who they are.
I believe that every child who is deaf needs to learn sign with or without hearing aids or implants, because how are they going to communicate? I mean there's always speech therapy but my point is, learning to use sign language would be a great benefit, because what if the hearing aid or the implant accidentally gets dropped in the water or it was left lying around somewhere because your child took it off without you knowing and the cat or the dog chewed it up or the battery goes dead and sign language interpreter--communicating with them in classrooms. There's a girl in my school, a sophmore, she has harmony implants, and one of them isn't working, and she is left with one implant to rely on, and she can't hear quite as much without the other AND she has no sign language knowledge, so it would be difficult to go through school everyday without the benefits like that.
I went to an elementary school about 2 years ago to public-speak about how a deaf person can do anything they want, even play music. It was full of hard-of-hearing students. I walked in with my mom, and I see half of them wearing hearing aids and about 2 or 3 students with cochlear implants. Their teacher came up to me and told me that these kids never met an older person who was deaf, who knew sign, and had implants. And their parents came up to me saying that they were thinking about implanting them and that they knew very little sign. and I would tell them wait until they're older, they might or might not want it. But after I got done talking to them, they came up to me and said that I changed their minds, and that they were willing to learn more sign language.
But overall thats my opinion about implanting babies. I mean yeah implants would give a huge benefits to babies at a young age with speech and education, but even with the implant we all know that it will not cure the deaf, its just another piece of advance technology to help us. I'm just a little disappointed in parents implanting babies. Because well, like i said, as they grow up, their personality begins to grow, and they might not want it anymore. one of my friends had the implant when he was a baby, he hated it throughout his childhood, so what did he do? got the implant removed last year in the winter, and is happy without it. whatever the decision, it was his choice. nobody else's.
I believe that every child who is deaf needs to learn sign with or without hearing aids or implants, because how are they going to communicate? I mean there's always speech therapy but my point is, learning to use sign language would be a great benefit, because what if the hearing aid or the implant accidentally gets dropped in the water or it was left lying around somewhere because your child took it off without you knowing and the cat or the dog chewed it up or the battery goes dead and sign language interpreter--communicating with them in classrooms. There's a girl in my school, a sophmore, she has harmony implants, and one of them isn't working, and she is left with one implant to rely on, and she can't hear quite as much without the other AND she has no sign language knowledge, so it would be difficult to go through school everyday without the benefits like that.
I went to an elementary school about 2 years ago to public-speak about how a deaf person can do anything they want, even play music. It was full of hard-of-hearing students. I walked in with my mom, and I see half of them wearing hearing aids and about 2 or 3 students with cochlear implants. Their teacher came up to me and told me that these kids never met an older person who was deaf, who knew sign, and had implants. And their parents came up to me saying that they were thinking about implanting them and that they knew very little sign. and I would tell them wait until they're older, they might or might not want it. But after I got done talking to them, they came up to me and said that I changed their minds, and that they were willing to learn more sign language.
But overall thats my opinion about implanting babies. I mean yeah implants would give a huge benefits to babies at a young age with speech and education, but even with the implant we all know that it will not cure the deaf, its just another piece of advance technology to help us. I'm just a little disappointed in parents implanting babies. Because well, like i said, as they grow up, their personality begins to grow, and they might not want it anymore. one of my friends had the implant when he was a baby, he hated it throughout his childhood, so what did he do? got the implant removed last year in the winter, and is happy without it. whatever the decision, it was his choice. nobody else's.
Coolgirlspyer, that is AWESOME!!!!!!!!!!! Good on you for being an activist....damn if we had more activists, like me, you,bajagirl, PFH, jillo etc AG Bell would be DEAD!
Jazzberry
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Maybe? If she is arround 52, then I am.
That's a tough question to answer. Audiologists have told me that I am definitely HH because I can be helped with hearing aids. However, life is not a sound booth.
In effect, I consider myself to be socially deaf. There are very few real life situations that I can hear well in. I can lip read, but lip reading does get tiring and I find it to be very difficult when I'm with more than one person. Who's going to talk next?
The only reason I would bother to make a distinction between deaf and HH is because if both parties are on a good quality telephone I can usually do OK on the phone. That's a big deal. It can make a big difference in searching for work, for example. I'm pretty sure that not all potential employers will continue to follow through if they encounter a relay service. However, good quality landline phones (vs VOIP or cell phones) where both people are calling from a quiet private room where either one is free to raise their voice if neccessary is becoming rarer and rarer. Even so, I can usually get most of the conversation but not well enough to consider going into sales or any job where communicating over the phone would be an important part of my day.
Because I know that even before the law that encouraged mainstreaming, HOH kids did attend deaf schools, but a lot of them were encouraged to be soloataires.
I'm not sure that the hearing employees in most school districts thought about the effects of having a HH student in a mainstreamed class room.
If they had budget responsibilities, I would bet that they just focused on that. If they were a teacher they probably didn't think beyond what the kid would do to their "success" ratio.
The fact that a HH child would probably:
* learn better in an ASL environment
* develop and mature better with other people that they can communicate well
* and therefore end up more likely to be able to interact with others (hearing, HH, or deaf) and be sucessful in more spheres of life as an adult
was probably not something they spent any time thinking about.
You lost me.
I know very little about deaf education ... including its history.Again, not familiar with the history. I only met one person my age who was deaf because his mother had rubella while she was pregnant with him. I know that the bulge happened in the early 60s and I was born in 1959 so I just missed it. I did think that Stokoe's research and publication of his research had a lot to do with changing people's (both professionals and many deaf people themselves) opinion about ASL. As I understand it, his work went a long way towards correcting the educational woes caused by the Milan Conference back in 1880.
The effect of Stokoe's work probably took a while to trickle throughout the USA and affect deaf/hh kid's day to day education.
Would you agree? This is part of the reason why I don't know if I would have been that much better off in a deaf school using a strictly oral approach. I understand that it doesn't work for most kids. I've been told that in many schools that used that approach, they did spend many class room hours in high school teaching them how to apply for SSI benefits because their educational approach failed to work and prepare the students for employment or higher education. What a waste. I'm glad that many deaf schools have gone back to using ASL like they did before 1880. But for almost a 100 years (?), many d/hh students basically did not get educated because of an audist policy.
I see.
Are you suggesting that some kids get mainstreamed in schools near the deaf campus because we can't trust the deaf schools to use high standards and do their jobs?
It reminds me why some many African Americans were in favoring of busing school children in the 1960s -- they didn't trust that their children would get educated in any school where they were the majority.
I wonder if we should break off into a new thread? We seem to be have strayed pretty far from the OP!
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I was wondering if this is possible for your family to move, then,
someplace where there is a bigger deaf community and thus the better opportunities for your child in the future.
Like many people wrote you here before, it is natural for the hearing person who never ever had any prior experience with the deaf, deafness
to panic and feel lost.
Every hearing parent of a newly diagnosed deaf child goes thru it.
The professionals make matter worse, as usually they are hell bent to "fix"
the child by insisting on making it hear better, talk better, etc
and having the parents believe that indeed making their child to speak
is the top priority.
Well, it really isn't.
It is nice if there is speech possible, but believe me, one can live and live well without it.
I my opinion, the best option is to have everything for your child - HAs, speech if possible, but not making it priority,
sign language and access to the deaf community - the latter even more important than the first.
Messymama gave you wonderful advice.
If you could travel anywhere and meet Deaf Community, see how they are,
how happy and well in their deafness they are - I am sure your fears will be
way diminished.
Don't look at deafness as disability, because it is not- it is just a different way of living.
Look up on the 'net famous deaf people,
look up any profession and find out if there are such deaf professionals.
You might yet be surprised
Fuzzy
Fuzzy, I've gotta say, I agree with you on this one. Sign language and access to the Deaf community are the most important thing. Also, speech can be useful yes, but the most important thing is being able to communicate, and not just superficially, but actual communication. I agree. Having "good speech" also doesn't mean that you are going to be more successful than someone without speech, I know people who do not speak and are MUCH more successful than I am. Good post Fuzzy! Deafness is NOT a disability.
Maybe? If she is arround 52, then I am.
That's a tough question to answer. Audiologists have told me that I am definitely HH because I can be helped with hearing aids. However, life is not a sound booth.
In effect, I consider myself to be socially deaf. There are very few real life situations that I can hear well in. I can lip read, but lip reading does get tiring and I find it to be very difficult when I'm with more than one person. Who's going to talk next?
I'm not sure that the hearing employees in most school districts thought about the effects of having a HH student in a mainstreamed class room.
If they had budget responsibilities, I would bet that they just focused on that. If they were a teacher they probably didn't think beyond what the kid would do to their "success" ratio.
The fact that a HH child would probably:
* learn better in an ASL environment
* develop and mature better with other people that they can communicate well
* and therefore end up more likely to be able to interact with others (hearing, HH, or deaf) and be sucessful in more spheres of life as an adult
was probably not something they spent any time thinking about.
You lost me.
Again, not familiar with the history. I only met one person my age who was deaf because his mother had rubella while she was pregnant with him. I know that the bulge happened in the early 60s and I was born in 1959 so I just missed it. I did think that Stokoe's research and publication of his research had a lot to do with changing people's (both professionals and many deaf people themselves) opinion about ASL. As I understand it, his work went a long way towards correcting the educational woes caused by the Milan Conference back in 1880.
The effect of Stokoe's work probably took a while to trickle throughout the USA and affect deaf/hh kid's day to day education.
Would you agree? This is part of the reason why I don't know if I would have been that much better off in a deaf school using a strictly oral approach. I understand that it doesn't work for most kids. I've been told that in many schools that used that approach, they did spend many class room hours in high school teaching them how to apply for SSI benefits because their educational approach failed to work and prepare the students for employment or higher education. What a waste. I'm glad that many deaf schools have gone back to using ASL like they did before 1880. But for almost a 100 years (?), many d/hh students basically did not get educated because of an audist policy.
I see.
Are you suggesting that some kids get mainstreamed in schools near the deaf campus because we can't trust the deaf schools to use high standards and do their jobs?
It reminds me why some many African Americans were in favoring of busing school children in the 1960s -- they didn't trust that their children would get educated in any school where they were the majority.
I wonder if we should break off into a new thread? We seem to be have strayed pretty far from the OP!
LOL....yes you're about as old as my "mom" (second mom) Do you like folk music? Maybe you could come this year and meet her, as she is fluent in ASL! I wonder if you were placed in a mainstream school, but it was just thought that you didn't "need" deaf school. Damn even Clarke would have been better then being a mainstreamed solotaire. I bet it was even worse b/c you guys didn't have IEPs or at least special education. It just irritates the eff out of me that even back then HOH kids were told "oh you don't need deaf school!" I think it was due to auditory-verbal's influence. I wish we could change the attitude that just b/c a deaf person can "hear" it doesn't mean that they'll automaticly assimlate into the hearing world. What I mean by my middle/high school educational proposal is that if a kid is gifted at a particualr subject, they would be able to take advantage of mainstreaming opertunties......It's very common for dhh kids to be very scattered in their academic abilties. Like they could take advantage of deaf school for some subjects (especially ASL/deaf studies) but if they needed I dunno an AP or an advanced course, they could take advantage of a local school....not to mention that by living at deaf school, they could develop social and emotional skills, rather then exisiting on the edge of the social world, as would happen in the mainstream.
KiansMom
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Hi Kat:
I was in the exact same situation as you are in now last year. My son was born deaf in June 2010 and was diagnosed officially in September 2010. At that time they told us in 1 ear he had a hearing level of about 140db and 110db in the other ear; severely to profoundly deaf. They wanted him to wear hearing aids but they don't do speech therapy for 4 month olds. So we basically faked it Kian(my son) got his HA's when he was 5 months and he would wear them to ASL class and to doc appts but at home we did ASL with him and didn't bother with the HA's. 1 of the reasons why we didn't bother with them other than the fact that they told us they were bascially traing wheels for his CI's is the fact that tons of studies shows kids with hearing aids have a lot more ear infections need ear tubes and other things. Kian is now 18months old bilaterally implanted(we had both done at the same time) and has never had an ear infection needed tubes or been to an ENT except for pre-op, surgery, and post-op. ASL is still his primary language but he is hearing at a normal range (28db) and can say 3 words. Even though he can hear now, CI's are still just a tool and I realize that my son is and always will be a deaf person that is why we have not given up ASL
KiansMom, that's AWESOME!!!!!!! Are you hooked up with The Learning Center in Framingham? You can do both....I know you want him to develop spoken language....and that's awesome....just take him to a good speech therapist who is experianced with teaching dhh kids, and the speech will flow!
KiansMom
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Hi Deafdyke:
We don't go to the learning center as is it very far from us; we go to the Horace Mann school in Boston once a week for ASL class, the Robinson Speech Center at Emerson College for speech therapy and ASL assited play group, and the we have a speech therapist who comes in once a week and it just so happens she was a speech therapist at the LC and she did her masters at Emerson, plus he has music therapy in home once a week and we do a regular non ASL playgroup once a week so we are get both sides ASL and deaf culture and mainstream regular socialization. I don't see Kian's deafness as a disabilty or problem like a lot of other parents, for me it just means that he learns in a unique way(like we all do) and that with time practice and patience he will be able to do any and everything he wants to do in life
KiansMom
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Oh deafdyke I forgot to mention my goal with Kian's CI's is not necessarily for him to speak if he does I will be a happy proud mama, but his CI's for me were a safety thing with the severity of his hearing loass aid were never going to be helpful to him and i told his docs the first time i saw Kian turn his head when he heard a car horn this summer was when i knew they were worth their weight in gold
Grayma
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Yes! All our children are hearing, but I taught them some sign. It was wonderful to be able to tell them 'Good job!' "Stop that!" "Time to eat" or, "I'm going to the bathroom" from across the playground or church building auditorium without having to shriek. (I am embarrassed now that I did not teach them more. I do not know what I was thinking).
Only problem- my one year old grandson keeps getting his feelings hurt because he signs to the dog and the dog ignores him.
Oh so you're actually IN Boston proper? Sounds like you're giving him all the possible resources! High five! The Horace Mann School is a pretty good resource, and maybe he can go to school there in a couple of years.
KiansMom
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We are cityfolk lol. We love Horace Mann and Kian will start there in about 20months, he could technically start when he turns 3, but since his b-day is in June it just makes more sense to us to have him start in Sept. We alread know all of the preshool teachers and the TA's some of the speech therapists the principal and tons of other people in the HM community. we love it there and can't wait for Kian to offically start
We are cityfolk lol. We love Horace Mann and Kian will start there in about 20months, he could technically start when he turns 3, but since his b-day is in June it just makes more sense to us to have him start in Sept. We alread know all of the preshool teachers and the TA's some of the speech therapists the principal and tons of other people in the HM community. we love it there and can't wait for Kian to offically start
That's awesome! I'm extremely psyched! I would say that ALL Deaf Schools have really awesome early childhood programs....and I'm SO jealous he gets to go to deaf school!!!!! He will have a BLAST!
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We are cityfolk lol. We love Horace Mann and Kian will start there in about 20months, he could technically start when he turns 3, but since his b-day is in June it just makes more sense to us to have him start in Sept. We alread know all of the preshool teachers and the TA's some of the speech therapists the principal and tons of other people in the HM community. we love it there and can't wait for Kian to offically start
lol I'm a city girl living among foothills. I hadn't realized how much I missed cities till I went to DC this week. I think you can't start too early with kian.