Faced with tough decision

I know the decision to implant would be a very hard one.
HOWEVER, it does sound like he's getting very little benifit....basicly enviromental noises...and little to no response to speech right? If he's maxed out his hearing aids, a CI could give him more access to speech and sound.....which is always a good thing.
It's the job of the parent to introduce all the options and tools for a special needs kid (well ANY kid) Yes, there are kids who were raised oral only who wish they'd been raised with ASL. But there are some voice off Deaf folks who were raised with Sign, who wish they'd been able to learn to speak as kids! I do know that it's pretty unusual for dhh kids of hearing adults to be totally voice off Sign.
So the key is to eqipt your kid with a full toolbox of options......and it's AWESOME you're open to ASL!!!! You may find some pressure to go oral only especially since you're in St. Louis. (it is VERY oral :( BUT, it is very possible for dhh kids to grow up fluent in both ASL and English. (spoken and written)
 
Waltersfam,

Wish you all the luck with your decision.* Having once stood in your shoes, I can appreciate the concerns you have. By way of background, my daughter was implanted in 1989 at the age of 2 1/2, is profoundly deaf and did not benefit at all from Has. She was raised orally and while she now knows ASL her education was mainstreamed in our local schools which she thoroughly enjoyed. She was always exposed to other deaf children as well as deaf adults and we were very active in deaf organizations both nationally and locally. She is now 23 in grad school and has both deaf and hearing friends.*

To address some of your questions:

"-Why take the risk of surgery when we feel he is perfect just the way he was given to us."

Only you as your son's parents can truly decide if the risks of surgery outweigh the potential benefits of the cochlear implant but if I can offer a different perspective on the same feeling of perfection.* We always considered our daughter perfect both before and after her ci surgery.* There was nothing to "fix" (an extremely offensive term to ci parents and used by some just provoke argument) she just now had an opportunity to hear sounds that she did not have before her ci surgery. To us its not about "changing" or not "accepting" your child but providing her with opportunities that she may never have had or only have been able to ascertain with great difficulty and above all, acting with her best interests in our minds and hearts.

"-We also of course want only the best for him and we feel this includes introducing him to sound as early as possible. His HAs let him hear noises such as a dog barking still a whisper to him) basically loud environmental noises."

With over 25 years of real life examples and research, I believe that the ci can give a person an opportunity to hear and understand more than just loud environmental noises but the opportunity to access spoken language.* If you goal for your son is to just hear loud environmental sounds, then perhaps the ci is not for him.

"-We are currently taking courses in ASL because we feel no matter what pur decision he will always be deaf and should always sign. We also feel that we want him to embrace what he is so we want him to always take part in deaf events and such. We want him to be excepted in any situation he is faced with."

Agree but also be aware that the entire deaf community is also comprised of many deaf individuals who utilize a spoken language as their primary means of communication, it is not limited to only those sign only. It is a broad umbrella and as mentioned above, our daughter was always exposed to other deaf children and adults and a part of a deaf community that was, by and large, oral.

-He is still very young and just started walking within the last month, a concern we have with CIs is the balance/equilibrium, we don't want to mess with what skills he already has."

From personal experience and from others that I know, this has not been an issue. My daughter took dance when little, played sports in high school and at the club level in college and loves to ski.

"-How great are the risks of surgery?"

I think that should be answered by a doctor, preferably a cochlear implant surgeon.


"We have of course heard horror stories that the implant makes the childs ear itch all the time, infections, multiple surgeries to correct other issues? What has been your experience?"

Never heard of a ci making a child's ear itch, not saying it has never occurred, just that I have never heard or encountered anyone with that experience. I know of many who have been reimplanted such as my daughter and in all honesty there were no issues with her reimplant surgery. The hardest part was trying to coordinate everything just days after 9/11 but her implant team at NYU and Cochlear Corp were just fantastic. One of the risks you should know of and discuss with your surgeon is that of meningitis.* I believe there were at least two instances a few years ago of patients dying from meninningits contracted during the ci surgery or the result of not following up with prescribed pre or post surgical vaccinations.* Again, address this with a doctor.

"-We ultimately wanted to let him make the decision but have since been imforemed that he would recieves little benefit from waiting I.e. The spoken word might not make sence to him."

Given the demonstrated evidence of the correlation between the length of time between the onset of deafness and implantation, my personal feeling is that it is better to implant as early as possible.* For another day and time are my strong personal opinions that part of one's parental duties and obligations is to sometimes make decisions on behalf of one's child. But as has been expressed by others on this forum and elsewhere the decision not to implant is also a decision and can also have a profound affect upon your child both positively and negatively.

Personally, looking back after 20 plus years, the cochlear implant for our daughter was the best decision my wife and I ever made and if we had to do so again, would do so in a heartbeat.

Good luck and I hope you find the answers you are seeking and definitely get yourself and these questions over to the ci circle.
Rick
 
some people, like myself and my son, get ezcema, but she should tell her child has that problem already as eczema can start very young (my son had this skin problem since infant...it was terrible because he was itchy and miserable all the time he still itchy and miserable all the time plus hives )

I had raw skin for a long time from my earmold result of that and i still get itchy if I don't air out the headpiece and processor area. As long as i do that, I'm fine.
 
rockdrummer said:
Which is why I said no matter the decision to keep with sign language.
Click to expand...
I'm not sure I understand this post. Please clarify?

rockdrummer said:
Also, in the context of an 11 month old prelingually deaf infant and a hearing parent not proficient in ASL, I would use whatever means I could to communicate until language is developed. I am no expert and that is simply my opinion.
Click to expand...
right. just like me and my parents. My parents did the best they can with the information they had at that time. If we had a similar law like California AB-2072, my parents may have opted for both ASL and oral.
 
Jiro said:
I'm not sure I understand this post. Please clarify?


right. just like me and my parents. My parents did the best they can with the information they had at that time. If we had a similar law like California AB-2072, my parents may have opted for both ASL and oral.
Click to expand...

Jiro, off the point and just to make sure you realize there is no AB2072 as the Governor vetoed it.
 
Tousi said:
Jiro, off the point and just to make sure you realize there is no AB2072 as the Governor vetoed it.
Click to expand...

yea I know but we both know what AB2072 is about.
 
I am profoundly deaf. From 9 months old I was diagnosed as severely-profoundly deaf, I wore hearing aids from 12 months until I was 10 1/2. Yes I still heard with hearing aids, but I was not hearing as well as I used to. So my parents and I decided to get the CI for me. Since I was brought up to speak, we all thought it was a good choice for me, and it was. I am now able to hear normally, and I know that isn't important to some people. I still sign with friends, get involved with the deaf community a little and my mum signs to me a little at home. It is YOUR decision to make, whether it'll be ASL or a CI. It does not matter as long you're happy with it and you think it is the best for your child.
 
Tousi said:
WAS about, yeah....about parental options.
Click to expand...

The audiologist didn't want it because it would mean they have to pass the brochures to the parents of mild hearing loss without their input on communication options. They feel it would confuse the parents that they have to add sign language to their child's life.
 
posts from hell said:
I'll say my piece though. I am severely deaf, which means I am only 85% deaf. I identify myself as culturally Deaf. A lot of my friends have CI's. )
Click to expand...
If your loss is only severe and not profound, you might be able to make a good use of the hearing aids. Perhaps you'd be surprised, that is if you ever get around to doing it.
 
It is so nice to have so much feedback, just being able to discuss this with others who have had the same experience is very helpful, thank you all again so much.
My husband and I have enjoyed reading and discussing what each of you have written. You all have broaded our minds and helped us talk out lots of issues and I am very grateful for that.
While the qualifing process is long and sometimes very stressful with such a young child, we have a few more months (I believe, but who knows) to do more research, asking around and discussing before we ultimatley make our decision.
I do, however, have another question (i'm not sure if I need to start a new thread or not but I'll ask and see what responses I get)!
Have any of you been seen or know of anyone who has experience with St.Louis Childrens Hospital?
 
HHIssues said:
If your loss is only severe and not profound, you might be able to make a good use of the hearing aids. Perhaps you'd be surprised, that is if you ever get around to doing it.
Click to expand...

again, if you could read... i have mentioned that i have wore all sorts of hearing equipments, and I can speak if i wanted to... But I have chose to go deaf, voice off, ASL only mode. Life is much easier since then.
 
posts from hell said:
again, if you could read... i have mentioned that i have wore all sorts of hearing equipments, and I can speak if i wanted to... But I have chose to go deaf, voice off, ASL only mode. Life is much easier since then.
Click to expand...
Alright, supposedly you have difficulty communicating with a hearing person that doesn't know ASL, whose fault is that? Yours for not wearing an hearing aid or the hearing person that doesn't know ASL?

Some of you are always harping on that it's the hearing that needs to meet "half way". Well some of the hearing may also think you're not exactly making an effort to meet "half way" either when you won't even wear hearing aids.

According to your logic, you think the solution is to get millions of people out there to conform to your needs.

That with your loss, your oral, auditory and lipreading skills would probably have been better than what it is had you made a better use of the hearing aids over the years.

To those out there reading this, you'd be surprised how much more those with a severe loss can hear than those with a profound. Not too long ago, I was at a beach with someone that had a severe loss. And with us being at the beach and all, we weren't wearing the hearing aids or CI, etc. I asked him "Can you hear anything at this point?". And the person then responded "Oh yes, I could hear people talking in the background, etc". I was like "WHOA! You could hear THAT much?" Cause with a profound loss, I could pretty much hear almost nothing without an aid or CI, etc. Just so you'd know.
 
Last edited:
HHIssues said:
Alright, supposedly you have difficulty communicating with a hearing person that doesn't know ASL, whose fault is that? Yours for not wearing an hearing aid or the hearing person that doesn't know ASL?

Some of you are always harping on that it's the hearing that needs to meet "half way". Well some of the hearing may also think you're not exactly making an effort to meet "half way" either when you won't even wear hearing aids.

According to your logic, you think the solution it to get millions of people out there to conform to your needs.

That with your loss, your oral, auditory and lipreading skills would probably have been better than what it is had you made a better use of the hearing aids over the years.

To those out there reading this, you'd be surprised how much more those with a severe loss can hear than those with a profound. Not too long ago, I was at a beach with someone that had a severe loss. And with us being at the beach and all, we weren't wearing the hearing aids or CI, etc. I asked him "Can you hear anything at this point?". And the person then responded "Oh yes, I could hear people talking in the background, etc". I was like "WHOA! You could hear THAT much?" Cause with a profound loss, I could pretty much hear almost nothing without an aid or CI, etc. Just so you'd know.
Click to expand...

LOLLOLOLOLOL You realllllllly cant read.... I never ever once said it was difficult talking to the people who don't know ASL at all. Its actually EASY. and i do it ALL THE TIMES.

I remember you asking me how I talk to people.. I said ASL, you then asked "what if they don't know ASL?" I answered... "With ASL."

Now, Do you have a solution for the 65% unemployment and 70% attrition rate in the deaf community?
 
rockdrummer said:
Keep learning sign language regardless the decision to go with a CI or not.
Click to expand...

Agreed. Getting past toddler level isn't always as easy as some claim, but it's worth the effort.
 
posts from hell said:
LOLLOLOLOLOL You realllllllly cant read.... I never ever once said it was difficult talking to the people who don't know ASL at all. Its actually EASY. and i do it ALL THE TIMES.

I remember you asking me how I talk to people.. I said ASL, you then asked "what if they don't know ASL?" I answered... "With ASL."
Click to expand...
So, I guess if you sign ASL to an hearing person and he or she doesn't know ASL, how could he or she understand you? Perhaps, I guess you have the need to carry a paper and pen with you at all times...right?

posts from hell said:
Now, Do you have a solution for the 65% unemployment and 70% attrition rate in the deaf community?
Click to expand...
Why are those numbers that high to begin with? Shouldn't those numbers indicate "that the past should not equal to the future..."?

What's YOUR solution? You're always claiming that there's no need for parents to take the CI route for their deaf child...
 
Back
Top