update on my 9.5-week old son - now has HA's

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jesse said:
We're not being pushed in any direction, it comes down to what we want for Evan. We're going to focus on oral language right now, and if for some reason that doesn't work for him down the road he can always be taught sign language. As you know, the window for proper oral language is small, the window to learn sign language is always open. It's the same for everything in life, we're dependent on technology, dependent on this and dependent on that. I'm extremely dependent on my truck for work, if my truck breaks down i'll worry about that when it happens. I'm not going to go out now and buy a repair manual and all the parts to fix it before it happens. Take one day at a time, and prioritize those days as they come.

You're correct about the possibilities of how well he'll do or not with the implants. But on the other hand, he may do really well with them, without a problem. Why so negative?
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This is the VERY reason why we have so many deaf kids who are language delayed. The window for ASL is not always open. If a child doesnt pick up language thru the oral only method and then learns ASL later on, the child will have language delays even in ASL in which will cause the child to have trouble with literacy skills. I have one student who doesnt have a strong first language..either in spoken nor in ASL. He is 10 years old and is having difficult picking up literacy skills unlike the other kids who have a strong first language.

Up to you but trust me, the window for ASL is not always open.

I grew up oral only without ASL and I suffered a lot from that approach.
 
jillio said:
I don't think anyone is attempting to push their beliefs on you. They are simply explaining the reality of what it is to be deaf. Who better to inform you regarding the needs of a deaf child than a deaf adult who has lived the experience? It never ceases to amaze me how many hearing aprents come to a deaf message board asking for advise from the deaf community, yet when that advise differs fromtheir own hearing perspective, they totally discount it.

You have some extremely high expectations for the CI. I hope the devise lives up to your expectations, but results are extremely variable. Even with great results, your child will never hear as a hearing child does, and will always be functionally HOH with the CI, and deaf when it is not in use. That means that he will still, even at his best moments, miss out on auditory information. This is an important consideration in language development, as language development is the most critical element of cognitive development. Re your example of the six year old....being able to speak as a 6 year old is not an idication of receptive language of a 6 year old. This will become evident as the child enters and attempts to get through school. Language delays are the single most complicating factor in academic achievement. It is much easier to prevent them by using a full tool box approach than it is to remediate them using an oral only approach. You cannot solve the problem using the method that creates the problem.
Again, no one is pushing anything on you. People are simply attempting to provide you with real life experience that could prevent you from repeating the mistakes that have been made in the past, and continue to be made. I would think that you would be appreciative of the fact that individuals take the time to share their experience with you, and to answer the questions that you yourself have asked. Just because you get answers that are different than those you want doesn't mean that anyone is forcing anything on on you. It simply means that you continue to see things from a hearing perspective. That's fine if your son is hearing. But your son is deaf. You need to uinderstand what it is to be a deaf child if you are to be of assistance to your son. Shutting out the deaf community is not the way to develop that understanding.

I wish you luck. You and your family are going to need a great deal of it.
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Jesse...pls take this bolded statement seriously. This is a recurring problem with so many deaf children even those with CIs.
 
jesse said:
Thanks Cloggy, i really appreciate the support. It appears to be a very hard thing to get on this message forum when CI's are mentioned.




To everyone else who is pushing ASL, i simply have one word for you, "no". That is not the direction that we are taking Evan in. This is our choice, or ultimate decision. Evan is our son, or responsibility and we believe we are doing the right thing. I know that a lot of you strongly disagree with what we choose, but you're just going to have to deal with it. I can accept your choices, why can't you just accept ours? It's so frustrating to post here sometimes because i get certain things pushed and pushed on me, and my family.

My wife and i have met several families with deaf children who now wear CI's. One child in particular is now 6 years old, he was implanted with his first CI at 2 years old. He was diagnosed late, and wore HAs from the age of 1 till he was implanted with his first CI. He had his second done within a year of the first. He is profoundly deaf in both ears, and when you talk to him now at 6 years old it's like talking to any other 6 year old. He didn't learn ASL, he went through AVT. We've met several other families with very similar stories, all with the same results. Not to mention the independent research that we've done that displays the same positive results.

Please stop pushing your beliefs on other people. I don't push my beliefs on you. That's all i have to say.
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I support your choice. I will make suggestion. In a forum like alldeaf, you will get all sides of the issue. At least it does give you a lot of opinions and input.

There are forums that support the implant and the family. That might be the route you might want to look at. Each of the three companies have web sites. Adanced Bionics has a forum and chat rooms as well. I find it very useful for my ci questions. Also there is a group called Pediatric Cochlear Implant Circle. That way you can talk to other parents of children with implants. You will find out the good, the bad and the ugly.

I will direct you to a fantastic blog at An American Mom in Tuscany: Jordan's Cochlear Implant Story Jodi's son has a CI. She has great resources and parent sites listed on her blog.

Good luck on the journey,
Valerie
 
jesse said:
Please stop pushing your beliefs on other people. I don't push my beliefs on you. That's all i have to say.
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This is going to come off as rude, so I apologize in advance for that. But not for what I'm about to say. You are a hearing parent, you are not deaf. And if you aren't deaf, you don't have any idea what life is like for a deaf child / person. For those deaf people (including myself here) who have responded to this thread with their beliefs and thoughts, it is because they've lived it.

No two children react the same with HAs, CIs, oralism, and sign language. What I mean by that, is that for all the information you've acquired -- the articles you've read, feedback and suggestions from other people, whether on this forum, or by audiologists, doctors you've met with, etc. -- NONE of them can guarantee how Evan will turn out. And I sincerely hope everything does turn out well for Evan. Just don't close the door on opportunities to better his life as much as possible, even if that includes ASL.
 
I feel compelled to respond to two points, both of which resonated with me.

The first:
Cloggy said:
:gpost:
roughly said... The success of Ci is 10% implant, 90% implantee and parents...
I'm sure Evan will do great- thanks to his parents and support-group.
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This is SO SO TRUE! The implant is just a TOOL - one that really requires work and dedication to use in the most effective way possible. The implant itself is, in general, going to perform its intended task - firing off electrodes - and how the recipient uses this input is really up to them. There are a lot of approaches out there, some involving ASL/cued speech, and some not - all of them will probably work for SOMEONE - if they work at it! My audiologist (who I've been with for all 18 years) has told me more than once she can at least get a general idea of how well kids are going to do based on the level of dedication and work ethic present in the kid and THEIR PARENTS.

A supportive family goes a LONG way towards any solution's working. I feel that was definitely the case for me - after the implant, I had to do 1-2 hour daily "sessions" with my parents (or someone else who was watching me, occasionally) to work on listening and speech, in addition to a weekly visit to a speech therapist. After awhile, the time spent on this did decrease - and then they became less frequent - but I stayed with at least some speech therapy until about 7th grade - not because I needed it per se, but because I myself wanted to make sure I'd "be okay out there" WITHOUT the therapy.

This segues nicely into the other thing I wanted to mention: the comments that seem to be convinced that any orally trained child is certain to encounter language delays and development issues. I am living proof that this is not the case - I have never learned a LICK of ASL. For me, the determining factor was the WORK I mentioned above - and for me, mainstreaming helped as well, though this is obviously not the case for everyone.

As far as what language problems I must certainly have had, being a deaf oral child? Well, I got a 770 instead of a perfect 800 on my SAT verbal, and I got a 1590 instead of a perfect 1600 on my SAT II literature/comprehension test. I did get a perfect 5 on my AP English test and perfect 36's on my ACT English & Reading subscores, though! Oh, and I went to Notre Dame and am currently in law school - yeah, I totally had/have huge language problems as a result of being oral only...

You know what I think? I don't think the implant did that for me. I don't even think I COULD have done well without the implant - but even more so, I KNOW I couldn't have done that without all the WORK my parents put in with me to help me use it effectively, long before I was in high school or college!

You get out what you put in, and judging from what I've read in this post, I reiterate Cloggy's sentiments - Jesse, I'm sure Evan will do GREAT with your support and everyone's hard work! Don't let anyone tell you otherwise!
 
I don't think anyone is attempting to push their beliefs on you. They are simply explaining the reality of what it is to be deaf. Who better to inform you regarding the needs of a deaf child than a deaf adult who has lived the experience? It never ceases to amaze me how many hearing aprents come to a deaf message board asking for advise from the deaf community, yet when that advise differs fromtheir own hearing perspective, they totally discount it.

You have some extremely high expectations for the CI. I hope the devise lives up to your expectations, but results are extremely variable. Even with great results, your child will never hear as a hearing child does, and will always be functionally HOH with the CI,
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AMEN jillo!!!!!
Not all of us here are Deaf seperatist types. Matter of fact, most of us here are adults who may have experianced the downsides of oral only.
I'm hoh and grew up "classicly" hoh, oral, mainstreamed etc. Although CI kids aren't audilogically deaf, they are classified as functionally hoh. Growing up, I went through pretty much the same things that oral-only CId kids of today are currently experiancing.
There are a lot of downsides. Yes, it's great that your son may have oral skills (and its very possible that he might not be able to develop oral skills seeing as apraxia is VERY common in the dhh community overall) However, there are MAJOR disadvantages to being oral-only. Being teased about your voice, being thought of as retarded b/c of the quality of your voice, being yelled at b/c you can't modualte your voice too well, social issues etc. As a matter of fact there's a popultion who can do well orally one-on one but still require 'terps for classroom and group interactions. I know that most hearing parents feel "Oh I don't want my dhh kid to "depend" on a 'terp....but how is that different from depending on implants, hearing aids, FM, C-Print or CART?
Continue with the oral training...........that's awesome. Don't drop it. But the thing is......how will you feel if in ten or fifteen years your son turns to you and asks you why you never learned Sign? All we're saying is that it can be an INCREDIBILY INCREDIBILY helpful tool. You wouldn't educate a kid who was deficent in math but good in English by soley focusing on their math defiencY would you? Exactly.......so why do we educate deaf kids that way?
TheWGP, Agreed. A lot of the sucess of implants does seem to be due to parental involvement. But the question is if that sucess can be acheived with "normal" parental involvement or if it might just be the result of kids from families where hyperprogramming is the "norm"? There are some kids who do well, but then again there have ALWAYS been kids who do really well.
 
Hi Jesse,

I support your choice too and there have been many oral deaf who are okay with the way they were raised. However, I do think the others have made a good point in that it's harder to address language delays further down the track if a particular method has not shown itself successful. Hopefully, your son will do well with the CI but I think that whatever you decide to do, it would be good for you to think about the range of possible outcomes and develop contingency plans/strategies sooner rather than later. I think Vallee's suggestion of joining parents groups where there are a range of situations is a great idea (I'm sure you have already).

As an oral deaf person who very much values my oral skills I am very much aware that I am completely deaf without my CI and technological dependency can be an issue. I think an oral deaf child could do with even basic signing for times when they are not able to wear the CI e.g. bath, pool or if it's broken.

Good luck with the process! I love my CIs.
 
deafdyke said:
AMEN jillo!!!!!
Not all of us here are Deaf seperatist types. Matter of fact, most of us here are adults who may have experianced the downsides of oral only.
I'm hoh and grew up "classicly" hoh, oral, mainstreamed etc. Although CI kids aren't audilogically deaf, they are classified as functionally hoh. Growing up, I went through pretty much the same things that oral-only CId kids of today are currently experiancing.
There are a lot of downsides. Yes, it's great that your son may have oral skills (and its very possible that he might not be able to develop oral skills seeing as apraxia is VERY common in the dhh community overall) However, there are MAJOR disadvantages to being oral-only. Being teased about your voice, being thought of as retarded b/c of the quality of your voice, being yelled at b/c you can't modualte your voice too well, social issues etc. As a matter of fact there's a popultion who can do well orally one-on one but still require 'terps for classroom and group interactions. I know that most hearing parents feel "Oh I don't want my dhh kid to "depend" on a 'terp....but how is that different from depending on implants, hearing aids, FM, C-Print or CART?
Continue with the oral training...........that's awesome. Don't drop it. But the thing is......how will you feel if in ten or fifteen years your son turns to you and asks you why you never learned Sign? All we're saying is that it can be an INCREDIBILY INCREDIBILY helpful tool. You wouldn't educate a kid who was deficent in math but good in English by soley focusing on their math defiencY would you? Exactly.......so why do we educate deaf kids that way?
TheWGP, Agreed. A lot of the sucess of implants does seem to be due to parental involvement. But the question is if that sucess can be acheived with "normal" parental involvement or if it might just be the result of kids from families where hyperprogramming is the "norm"? There are some kids who do well, but then again there have ALWAYS been kids who do really well.
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And, even when the level of parental involvement is controlled for as a variable, the highest performing group is still kids who are exposed to both sign and speech, in CI implanted groups, and non-implanted groups.
 
shel90 said:
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This is the VERY reason why we have so many deaf kids who are language delayed. The window for ASL is not always open. If a child doesnt pick up language thru the oral only method and then learns ASL later on, the child will have language delays even in ASL in which will cause the child to have trouble with literacy skills. I have one student who doesnt have a strong first language..either in spoken nor in ASL. He is 10 years old and is having difficult picking up literacy skills unlike the other kids who have a strong first language.

Up to you but trust me, the window for ASL is not always open.

I grew up oral only without ASL and I suffered a lot from that approach.
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Exactly. I know one guy with such a delay that you speak of. He has excellent language skills in both ASL and English but he doesn't speak or sign like a native in either language if you know what I mean.

I've met others who are in a similar situation but they haven't come as far as he has and life is hard for them in both school and outside world as a result. Unfortunately, the guy that I mentioned is an expectation to the rule; most deaf with a delay like his are more like the 10 year old boy you mentioned.
 
jesse said:
Thanks Cloggy, i really appreciate the support. It appears to be a very hard thing to get on this message forum when CI's are mentioned.
............
Please stop pushing your beliefs on other people. I don't push my beliefs on you. That's all i have to say.
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I share your feeling.
A lot of the advise given here is from people that are deaf, and grew up deaf. They have the experience of growing up deaf, and much of the advise is based on their life.
That life however more often than not did NOT include CI. Many do not have the experience hearing. Many have heard a bit, and many have had bad experience with communication between them self and their family.
They are sincere in wanting the best for your child, for our children, but again, they did not grow up with the possibility to hear with CI.
Times have changed.

One thing we made the most important issue with Lotte is to have communication. In Norway where we live the only option was sign language until Lotte could hear. Cued Speech does not exist here. AVT is not available where we live. But sign was a great way to communicate. That was our solution and when Lotte started speaking - and listening - it was used less and less.

With your child, you found another way to start your communications, and I congratulate you on that.
Please, keep us informed about your son's - and your families progress.
It brings back great memories. Keep them coming.

btw...
Your expectations regarding CI are not high. They are realistic, especially with the commitment I see with you and your family. Even with these expectations, your child will nevertheless amaze you! Often!
Visiting this messageboard gives an insight in the deaf world. It's pro's and cons, but for me it givesexcellent information when reading the experiences of deaf people that have started to use CI. They provide a glimpse of the world of your child.
 
Please keep in mind, as well, that a deaf child with a CI is still a deaf child. At best, that child is functionally HOH with the CI. The CI can be a great tool, but it is not a subsitute for providing an enriched linguistic environment that includes language in a mode 100% accessible. Only through 100% acessibility can you hope to avoid the language delays seen in deaf children of hearing parents that insist on an oral only environment.....including those with CI.

The most important issue is not how a child communicates, but that they are able to communicate both receptively and expressively in a mode that permits the opportunity for 100% access.
 
That life however more often than not did NOT include CI. Many do not have the experience hearing. Many have heard a bit, and many have had bad experience with communication between them self and their family.
They are sincere in wanting the best for your child, for our children, but again, they did not grow up with the possibility to hear with CI.
Times have changed.
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That is where you are WRONG. Yes, CI is relatively new. HOWEVER there are deaf kids who were functionally hoh with hearing aids. Some of us post here. Heck there are THOUSANDS of audilogically hoh folks who grew up oral-only, and who may have experianced the downsides of oral only. The technology may have changed yes.....but the essengtial experiance hasn't. Heck, I'm only hoh (moderately severe loss) and I experianced the downsides of oral only.
 
deafdyke said:
That is where you are WRONG. Yes, CI is relatively new. HOWEVER there are deaf kids who were functionally hoh with hearing aids. Some of us post here. Heck there are THOUSANDS of audilogically hoh folks who grew up oral-only, and who may have experianced the downsides of oral only. The technology may have changed yes.....but the essengtial experiance hasn't. Heck, I'm only hoh (moderately severe loss) and I experianced the downsides of oral only.
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Deafdyke...you are hoh and children with CIs are hoh so the parents should take your experience in consideration. Doesnt matter what hearing device each kid use...if they are not getting full acess to language, they arent being giving the same rights as hearing children.
 
jesse said:
Thanks Cloggy, i really appreciate the support. It appears to be a very hard thing to get on this message forum when CI's are mentioned.




To everyone else who is pushing ASL, i simply have one word for you, "no". That is not the direction that we are taking Evan in. This is our choice, or ultimate decision. Evan is our son, or responsibility and we believe we are doing the right thing. I know that a lot of you strongly disagree with what we choose, but you're just going to have to deal with it. I can accept your choices, why can't you just accept ours? It's so frustrating to post here sometimes because i get certain things pushed and pushed on me, and my family.

My wife and i have met several families with deaf children who now wear CI's. One child in particular is now 6 years old, he was implanted with his first CI at 2 years old. He was diagnosed late, and wore HAs from the age of 1 till he was implanted with his first CI. He had his second done within a year of the first. He is profoundly deaf in both ears, and when you talk to him now at 6 years old it's like talking to any other 6 year old. He didn't learn ASL, he went through AVT. We've met several other families with very similar stories, all with the same results. Not to mention the independent research that we've done that displays the same positive results.

Please stop pushing your beliefs on other people. I don't push my beliefs on you. That's all i have to say.
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Your child is the one who has to live with the deafness, not you. Sorry to be blunt but my parents decided to put me in an oral-only environment but they werent the ones who had to live with it. I was the one who had to live with it day in and day out and if I had to go back and change it, I would have made ASL a big part of my upbringing.
 
What is the technical definition of "Functionally HOH"? I assume anyone with a CI is automatically considered FHOH, but how is that term defined otherwise?
 
Shel90, I agree with you on that one. Hearing parents do not understand how deaf children have to suffer and not being able to communicate with their parents like sign language which is the big important part of language barrier. I did not learn how to communicate or talk, not even English Sign Language until I was almost nine years old. I don't remember if I used home sign language to communicate with my parents. It is like looking out in space not understanding and not knowing that people speak or using sign language. Going through the mainstream elementary and high school without Sign Language in the oral only environment is very difficult time for me and I hate it. I did try to lipread them but no avail and I am not a good lipreader. I had a difficult time trying to understand hearing teachers in the regular classrooms without having a sign language interpreters to help us understand what is going on in the classroom and what we need to learn from subjects in the classroom. I was very angry with my parents for putting me through oral only classroom, because I have to suffered going through difficult time trying to understand and wish that I could have learn ASL and having an interpreter will help make things go better with good grades like A+. Please, don't make Evan suffer like we do even if things have changed like CI which might not be a good option for Evan, because he might be deaf instead of hard of hearing. I hope you understand what I am saying here. I have been deaf since birth. I did not start wearing hearing aid until I was eight years old and then go into first grade in mainstream elementary, no kindergarten as I was too old for that. So you see I have experience of what it is to be deaf and trying to understand why hearing people are turning down on us and say that they know better about deafness than we do. That is not true, you are hearing and don't understand what deafness is like. Just get real and learn to face the truth that we are always be deaf forever and forever, even with CI. I don't want you to feel hurt but that is the truth of how I felt back in the old days. :(
 
I am HOH not deaf but I can say from same experience that Bebonang is telling my same experience in school and life. What she says is important.
 
Drew's Dad said:
What is the technical definition of "Functionally HOH"? I assume anyone with a CI is automatically considered FHOH, but how is that term defined otherwise?
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No, not everyone with a CI is considered to be functionally HOH. Some receive no benefit, some receive limited benefit. Some are unable to perceive sound in the speech ranges.

Functionally HOH means that with the CI functioning, and in ideal conditions, the testing will fall into the mild to moderate ranges with decent speech perception.

Have you ever accessed the website that allows you to hear what a person would hear with the various levels of losses? We had a discussion going about that some time ago. It is truly amazing how much is missed with even a mild loss.
 
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