CI for son...CI friendly only please

Isaacsmom

Isaacsmom

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Hello everyone,
My 15 month old son is profoundly deaf in both ears and we are getting him implanted on September 25th. My husband and I are sure this is the way to go for him. We want to give him every opportunity to be part of the deaf community as well as the hearing community. I have been visiting alldeaf threads for months and would like to connect with parents of other deaf kids. I would like to learn what other parents experienced on this journey such as challenges and joys. What was the reaction when they were turned on? How long after surgery was the child groggy? What complications if any did your children have? Our son Isaac is going to get the Nucleus Freedom and they come in many colors. Do you have to select just one or can you switch the colors? I would like to know also if anyone is near York, Pennsylvania or Baltimore, MD. Please only give positive responses. This has been a difficult decision for my husband and I. We have looked at the issue from both sides and believe this to be the best decision for our son. God Bless!
 
Issacsmom-

Why do you really care for your son to hear better and really care for his future?

Look at me.....I never got the CI in my life and my life is so GREAT and I interact with hearing people very well and my speech is excellent. Even though I am profoundly deaf. I worked very hard on my speech skills.

I asked you the question "why?" because you know it's really dangerous and you take the risk. My cousin's wife told me that the operation for CI is always risk so what if it happens to your child to have problem, would you be willing to take more guilty?

I asked my parents and siblings if they would get their child the cochlear implant and they said no because they saw me very successful withOUT CI.

Imagine that my cousin's wife told me that around 70% CI doesn't work. My hearing friend who has two daughters - 12 and 10 and it still doesn't work and the mother is still soo disappointed.

My huge advice for you is not to get your child the CI. All you have to do is to work with your child's speech skills - on one to one like private speech tutor twice a week all in his/her life.

CI is not the answer - really.

Momoftwo
 
Momoftwo, shut up!! the thread said CI friendly only in case you can't read!! they already made their decision, so if u dun have anything nice to say don't say anything at all, i am sure god taught you that already!?!?

Anyway Issacsmom, i wish you the best of luck for your son. Myself, I got a Advance Bionic last november, and i love it. I believe that Nuclear can change colours. Anyway best of luck.

DA
 
darkangel8603 said:
Momoftwo, shut up!! the thread said CI friendly only in case you can't read!! they already made their decision, so if u dun have anything nice to say don't say anything at all, i am sure god taught you that already!?!?

Anyway Issacsmom, i wish you the best of luck for your son. Myself, I got a Advance Bionic last november, and i love it. I believe that Nuclear can change colours. Anyway best of luck.

DA
Click to expand...

I know that Issacsmom wants CI friendly only but I would like to give her my comments. This is my opinion.

This is good for her to hear my side.

Momoftwo
 
Hi Issac'smom! I would suggest that you contact Western Pennsylvania School for the Deaf....and also the American Society for Deaf Children.
I know it must have been a difficult decision for you, to opt for the surgery.......but there ARE deaf kids who cannot and do not benifit from hearing aids whatsoever.
 
:) Hi Issacsmom!

Check out the posts by one of the AD'ers here.. who goes by the name of Cloggy. He is a hearing parent of a young deaf daughter who has the CI and even though he is from Norway and not from the regions you requested, his posts are excellent and informative for parents. He even includes pics in some.
 
Thanks for the input. I know that the deaf community overall is against CI for infants. I also am aware of the risks. I also know that a huge part of the success of an implant is due to the parents commitment to helping their child learn to hear with the device. I know that the CI is just a device and is not a cure for deafness. My husband and I have weighed the risks and benefits of the CI and have chosen to give our son every opportunity. We are a hearing family and are learning sign to communicate with Isaac. He is very bright and uses over 70 signs. We are not going to stop teaching him sign. We will keep learning sign. If Isaac decides in his life that he doesn't like the implant and doesn't want to use it, we accept that. However, research proves that children adapt better to the implant than adults do. We want our son to have access to technology early on. Like I said before, it was a very difficult decision to make, but we believe it is the right one. I don't want to debate this because I'm sure everyone has a different opinion. I just want to connect with others who have had similar experiences. I don't fault anyone for their opinion.
 
Whatever choice(s) you've made for your child, I can safely presume you and your husband has researched relentlessly in order to maximize the many options available for your child...I sure wish you both the very best as well as for your child being able to benefit greatly in the days, years ahead. It's also nice to note that you both will be sure he can be a part of both 'worlds' or 'factions', etc.,.... ;)

Keep us posted with your child's progress. :)
 
Hi Isaacsmom,

I think you have a very good attitude with keeping an open mind with sign language. It has been shown that infants (all infants) are able to acquire language before they are physically able to speak - as you have already seen with his vocabulary. So you have done really well to help him develop that and sign is always useful no matter how much hearing you have.

It doesnt seem easy to find groups to connect with - I think deafdyke has the right idea.. there will be an organisation.. you just have to keep looking. Try asking the doctor or audiologist as they often have a good idea?

You may have found it already but there are lots of stories at http://www.cihear.com/stories.html with children and parents accounts halfway down.

Incidentially I believe that the 70% figure relates to an fairly old study (about 10 years) that Bev Biderman investigated in her book - she found the data collected was exclusively from deaf schools/institutions, where almost everyone signs and users felt peer pressure not to use their cochlear implant. It's neither representative nor up to date.

Good luck - I hope you find what you're looking for :)
 
Isaacsmom said:
Hello everyone,
My 15 month old son is profoundly deaf in both ears and we are getting him implanted on September 25th. My husband and I are sure this is the way to go for him. We want to give him every opportunity to be part of the deaf community as well as the hearing community. I have been visiting alldeaf threads for months and would like to connect with parents of other deaf kids. I would like to learn what other parents experienced on this journey such as challenges and joys. What was the reaction when they were turned on? How long after surgery was the child groggy? What complications if any did your children have? Our son Isaac is going to get the Nucleus Freedom and they come in many colors. Do you have to select just one or can you switch the colors? I would like to know also if anyone is near York, Pennsylvania or Baltimore, MD. Please only give positive responses. This has been a difficult decision for my husband and I. We have looked at the issue from both sides and believe this to be the best decision for our son. God Bless!
Click to expand...

That's great about your son getting CI soon. It would work so well and its easier to learn how use oral language but just better to get CI when they are under 3 years old and it would great to use oral language.
 
Isaacsmom said:
I know that the deaf community overall is against CI for infants. I also am aware of the risks.

Like I said before, it was a very difficult decision to make, but we believe it is the right one.

I don't want to debate this because I'm sure everyone has a different opinion. I just want to connect with others who have had similar experiences. I don't fault anyone for their opinion.
Click to expand...

Go for it Issacsmom, please know that the majority of us here respect your choice. The views in the deaf community are changing more and more each day regarding the CI. I know many Culturally-Deaf people who are now starting to accept the CI and have even begun to get the CI themselves. I myself have the CI and I am Culturally Deaf (I even used to be one of those people who were against it years ago), and I don't regret my choice at all.

Ultimately you are the parent and it is the parent's choice to do what they feel is best for their child. Don't be discouraged or made to feel guilty by the naysayers here. Many of them hold on to outdated and ignorant misconceptions and rumors. While there are risks with ANY surgery, folks who are against CI will constantly try to focus on the risks (again many of which stem from outdated information) or even exaggerate them. You and your family do what is right for YOU. :)
 
And in addition, Deafies tend to be LESS against it, if Sign is also used. That's wicked good that you're also keeping Sign as an option.
It'll serve as a safety net just in case he doesn't acheive hoh levels with his CI......and many don't.
Please also don't overtherapitize your son. If he responds to therapy.....GOOD, but don't overdo it. I actually think that a lot of the oral sucesses out there might be due to more parents who overprogram their dhh kids, rather then any one method or device.
For organizations, please join the American Society for Deaf Children....It's Sign and CI friendly, and far far better then AG Bell.
 
Just wanted to wish you all the best for Isaacs oncoming surgery! I appreciate that you've done the research by reading viewpoints from both sides already and that you are looking for support at this level now. Please keep us posted - there are a number of parents here and it would be terrific if we could get more on board! :)
 
R2D2 said:
Just wanted to wish you all the best for Isaacs oncoming surgery! I appreciate that you've done the research by reading viewpoints from both sides already and that you are looking for support at this level now. Please keep us posted - there are a number of parents here and it would be terrific if we could get more on board! :)
Click to expand...

I'm hearing, but I wanted to wish you the best.

It sounds like you made the best decision for your son.
 
Isaacsmom said:
Hello everyone,
My 15 month old son is profoundly deaf in both ears and we are getting him implanted on September 25th. My husband and I are sure this is the way to go for him. We want to give him every opportunity to be part of the deaf community as well as the hearing community. I have been visiting alldeaf threads for months and would like to connect with parents of other deaf kids. I would like to learn what other parents experienced on this journey such as challenges and joys. What was the reaction when they were turned on? How long after surgery was the child groggy? What complications if any did your children have? Our son Isaac is going to get the Nucleus Freedom and they come in many colors. Do you have to select just one or can you switch the colors? I would like to know also if anyone is near York, Pennsylvania or Baltimore, MD. Please only give positive responses. This has been a difficult decision for my husband and I. We have looked at the issue from both sides and believe this to be the best decision for our son. God Bless!
Click to expand...

I know you are doing what you feel is best for your son. so go for it. Good luck! :)
 
Issacsmom.....see? Just five years ago this thread would have been FILLED with people telling you not to opt for it. Now look at all the postitive comments!!!!!
I myself am slightly anti-CI, but that's b/c I think that some people are opting for it b/c it's the latest thing, and of course they need the latest trendiest hearing device. I also think that it's very hard to accuratly tell how well a baby hears, even with ABR. If however the baby cannot hear and doesn't really benifit from hearing aids, it's an OK decision.
 
I met a 20 years old woman who has a CI. She is independent and very socialize with hearing people. She was glad that she got one when she was four years old. The younger children are better to get the CI because they hear better than teenagers and older people such as 90 percent hearing. However, she thinks that your 15 months old son is too early to get one because he is in the process of growing in the stage. The best is to be in 3 or 4 years old. I understand that you want to hurry up... I believe that when he turns 3 or 4, he will get a better technology like a smaller CI and more advanced wires or programs. I strongly believe that they cannot replace a better CI because of the wire permanant in the cochlear. If they want to get another operation for a newer one, it is a 50/50 percent risk failure that cannot go back to the old one. I have a friend and his (CI) hearing is a permanant damage after the 2nd surgery. Please think about it. Wish you a good luck!

I am waiting for an announcement about a regeneration hearing that makes the stem cells to create ear hair cells grow. The only real problem is George Bush. I cannot wait for him to get out of office or impeach him.
 
webexplorer said:
I am waiting for an announcement about a regeneration hearing that makes the stem cells to create ear hair cells grow. The only real problem is George Bush. I cannot wait for him to get out of office or impeach him.
Click to expand...

Yes! Hair cell regeneration is MUCH, MUCH BETTER than CI. Yes, in my strong opinion, CI isn't a very good idea at all. Hope that hair cell regeneration will happen one day.
 
Yeah, but they are never going to come up with viable haircell regeneration b/c hearing healthcare is such a goldmine.....
 
Hi Isaacsmom, i am a hearing parent of a deaf child. Kayla is 5 and was implanted at the age of 2. Everyones expierence is different but i had a positive one. At the initial hook up in Kayla's case, there was no response. I was'nt worried about it because the audiologist let me know ahead of time that alot of kids dont respond at first. It took awhile and LOTS of therapy until Kayla understood that sound had meaning. I'm not gonna lie about the work you have to put into it because it takes alot of patience and the therapy comes home with you and you have to keep up with it. I remember in the beginning thinking that she was never going to talk because i worked so hard with her and did'nt get much response. Well it's been 3 1/2 years since her surgery and what an outcome. She loves chatting with everybody. Never thought i'd see the day when i'd want her to be quiet just for 2 minutes...lol. Like i said, everyones experience is different but with a lot of hard work and patience, you can have a positive one too. It dosent happen overnight, but when it does, it's worth every moment you put into it. I wish your son the best of luck and if have any questions feel free to pm me. :)
 
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