Father Confused on Coclear Implant Decision

In case, some children with profoundly deaf got good benefit with HA since others aren't, such as my friend and Steel but Steel wear HA in one ear.

Just depends on person, also Ivan's dad, Does your son got benefit with HA on left ear?
 
Reading your post was like a flashback for me to when my own son was this age. I sympathize with your confusion, but am very relieved to see that you are already beginning to understand that the hearing professionals only provide you with one side of the coin. In order to make an informed decision, you must talk, not just to those hearing professionals, or just to hearing parents of deaf children, but to the deaf as well. They are the only ones that can give you an accurate view of what it is to be prelingually deaf, as they are the one's who have experienced it. To make a decision based on a hearing person's view of deafness is to do our children an injustice.

To paraphrase Harlan Lane, we are the adults, and as the adults it is our responsibility to adapt and adjust. We cannot expect our children do do it for us, whether it is through implantation, HA, FM system, or oral language.

My son gave me the clues I needed to make the decisions I have made for him. Keep communicating with your child, and watch him carefully. He is your best guide.

Good luck to you and your family.
 
Ivan's Dad said:
Cloggy,

The level of his hearing is certainly a factor in our decision. His hearing is quite good compared to many children with mondini. He is better with the higher frequencies than the low which is also different than most hearing losses. It is my understanding that the higher frequencies are more important in learning language. His aided augiogram shows that he can percieve a little more than half of normal speech.

We are at times are shocked at what he seems to understand with his HAs. The other day, while changing his diaper, my wife was singing a song from a movie. Right after, Ivan ran to the TV and put that movie on.

It has been only a year since he has gotten his HA and we certainly don't know what we are doing when it comes to teaching him how to listen and speak but we are trying. We wonder if he would be using his voice more if we had better local support.

How long should we wait before Ivan show's results in his oral skills? All kids learn differently. We know that he is the sort of kid that doesn't try to do something until he knows he can do it and then he just does it with very little practice.

R2D2: It is my understanding that it is only recently that they have started the widespread implantation of very young children. (5 years or so).

I would like to believe that giving Ivan an implant in his left ear would be the best for him but dispite all the wonderful success stories, we are still very reluctant.
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The implant will not necessarily improve his oral skills. This is a misconception that the medical field uses to convince parents to implant. The issue is not whether he develops oral skills, but that he develop language skills. This can be done with sign. However, at the age of 2, and after 1 year of therapy, his oral skills are not improving. He is already suffering language delays that will affect him for the rest of his life. My suggestion would be to continue with the HA, the speech therapy, and the lipreading, but to also make sure that his envirnoment is language intensive with sign. Cummunication is the key to success. From what you have said, even with his HA, he apprears to be very visually oriented, and that is a clue for to use in your decision. And, by the way, I am a parent who chose not to implant, under almost identical circumtances as you describe with your son.
 
jillio said:
The implant will not necessarily improve his oral skills. This is a misconception that the medical field uses to convince parents to implant. The issue is not whether he develops oral skills, but that he develop language skills. This can be done with sign. However, at the age of 2, and after 1 year of therapy, his oral skills are not improving. He is already suffering language delays that will affect him for the rest of his life. My suggestion would be to continue with the HA, the speech therapy, and the lipreading, but to also make sure that his envirnoment is language intensive with sign. Cummunication is the key to success. From what you have said, even with his HA, he apprears to be very visually oriented, and that is a clue for to use in your decision. And, by the way, I am a parent who chose not to implant, under almost identical circumtances as you describe with your son.
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Sounds to me that the reason for a HA would be to develop speech.
I am all for communication and sign is a wonderful tool.

But had this been the objective, then a HA would not be needed, nor a discussion for CI.

My point is that as long as his hearing abilities and language abilities are improving, there's no need to change to CI...
When it is NOT improving, and obtaining language is a goal, then CI might help to keep up the learning curve.

But, hearing that he is responding to songs is great.....

jillio... you did a great job raising your son deaf. That was your choice, and your son is happy with that. I have full confidence that my daughter will be happy with CI.... That was our choice....
Do not assume it was an easy choice.!!
 
Cloggy said:
Sounds to me that the reason for a HA would be to develop speech.
I am all for communication and sign is a wonderful tool.

But had this been the objective, then a HA would not be needed, nor a discussion for CI.

My point is that as long as his hearing abilities and language abilities are improving, there's no need to change to CI...
When it is NOT improving, and obtaining language is a goal, then CI might help to keep up the learning curve.

But, hearing that he is responding to songs is great.....

jillio... you did a great job raising your son deaf. That was your choice, and your son is happy with that. I have full confidence that my daughter will be happy with CI.... That was our choice....
Do not assume it was an easy choice.!!
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The point of HA is not necessarily to develop speech skills, although there have been many hearing people in the past that assumed that the whole pointof HA was to hear and speak much the way a hearing person does. More often, HA allows for sound perception, but not for speach discrimination. Which means, that the person wearing the HA will know that someone is talking, but in order to understand what is being said, it is necessary for them to also have visual cues inthe form of lipreading or sign. Since lipreading is often ambiguous, sign permits the greatest degree of understanding.

I have never said that your decision to implant was an easy one, nor do I discount your decision. Nor do I believe that all hearing parents implant their deaf children for the same reason. The post I was responding to was one regarding the decision of parents not to implant as selfish, and I will always maintain that not implanting and devoting the time to learn another language and insure adequate exposure to another culture, and educating and informing oneself of ALL the issues prior to making an informed decision is anything but selfish. Selfish is to implant and then ignore that the implant does not meet a child's complete needs.
 
Communication is important

jillio:

From the first day that we learned of Ivan's hearing loss we have been learning ASL. This is the only form of communication that we have at this point and we will not abandon this form of language until Ivan shows that he can and will learn spoken language. (even then ASL will probably continue since I now feel that all people should learn some visual communication)
 
Left ear

Pacman:

He can percieve some sounds with his left ear with his HA but not much at all. However at time he seems to turn his head to sounds so he probably hears some.
 
Ivan's Dad said:
jillio:

From the first day that we learned of Ivan's hearing loss we have been learning ASL. This is the only form of communication that we have at this point and we will not abandon this form of language until Ivan shows that he can and will learn spoken language. (even then ASL will probably continue since I now feel that all people should learn some visual communication)
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Very good and sensible approach! You'll find that many of the parents here on AD who have gone with CIs have also learned sign and sign with their children. So it's not something that is mutually exclusive, although some professionals seem to be against it.

If I (a deaf adult) had a deaf child who got no benefit from hearing aids, I would probably both sign to and give that child a CI.

If that child turns around to me in adulthood and said "why did you put a CI in me?" I would then say "because you were too young to tell me what you wanted and there was a window of opportunity when people benefit the most from CIs. We tried hearing aids on you but you didn't appear to benefit. I wanted to increase your choices for whatever decision you wanted to make in the future. I didn't want to assume anything about how you would feel later in life because people feel differently. One man's medicine is another man's poison. Now the choice is yours and I will support you if you want to turn it off or get it taken out. I love you very much."

Interestingly I have friends who have adopted children and there are parellel controversies there too. Many adopted adults turn around and say they wish they had never been adopted as children and it was a decision that was made for them without people listening to them etc. They say they wish they had stayed with their biological families or even in orphanages even if they were abusive or lonely.
 
R2D2 said:
Very good and sensible approach! You'll find that many of the parents here on AD who have gone with CIs have also learned sign and sign with their children. So it's not something that is mutually exclusive, although some professionals seem to be against it.

If I (a deaf adult) had a deaf child who got no benefit from hearing aids, I would probably both sign to and give that child a CI.

If that child turns around to me in adulthood and said "why did you put a CI in me?" I would then say "because you were too young to tell me what you wanted and there was a window of opportunity when people benefit the most from CIs. We tried hearing aids on you but you didn't appear to benefit. I wanted to increase your choices for whatever decision you wanted to make in the future. I didn't want to assume anything about how you would feel later in life because people feel differently. One man's medicine is another man's poison. Now the choice is yours and I will support you if you want to turn it off or get it taken out. I love you very much."

Interestingly I have friends who have adopted children and there are parellel controversies there too. Many adopted adults turn around and say they wish they had never been adopted as children and it was a decision that was made for them without people listening to them etc. They say they wish they had stayed with their biological families or even in orphanages even if they were abusive or lonely.
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QFT!!!!! Thank you, R2!!! This is EXACTLY what Fragmenter is doing for his son! :ty:
 
Ivan's Dad said:
jillio:

From the first day that we learned of Ivan's hearing loss we have been learning ASL. This is the only form of communication that we have at this point and we will not abandon this form of language until Ivan shows that he can and will learn spoken language. (even then ASL will probably continue since I now feel that all people should learn some visual communication)
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I applaud you for the sensitivity you have shown to your son's circumstances. You have no idea how rare it is for a parent to look at all the options and information available, and then base their decision on informed consent guided by their individual child. When my son was first diagnosed, I lived in an area that was very oral in philosophy, and as a consequence, I was provided with only one perspective from the professionals consulted. I was fortunate enough to see the inconsistencies and to begin to gather information from other resources. I began to expose my son to ASL at approximately 14 months of age, much to the consternation of the professionals in my area. My son is now 20 years old, has not been implanted, and also does not wear HA by his own choice. He has excellent lipreading skills, and a better than average grasp of the English language. He also, from grade 4 on, attended a school for the deaf as a day student that employed a total communication approach. He is currently a sophomore in college (first quarter), attends a completely hearing college with a classroom interpreter, and carried a GPA pf 3.4 for his freshman year. Needless to say, his success to date confirms that I made the right choice for my son.

That is not to say that I oppose CI at all. For many children, the CI is the correct choice. My opposition to CI is when implantation is done at such a young age, and for the reason of "fixing" a child's deafness.

No matter what your decisions in the future, you simply need to continue to allow your child to guide you, and always remember that he is the one who will live with his deafness, and therefore, should have a say in what is most comfortable for him. I don't believe that this would happen in your situation, but far too many hearing parents get confused over what is truly in the best interest of the child and what is really in the best interest of the hearing parent.

I wish you luck. It will at times be a struggle for both you and your child, but it is a wonderful experience that will expose you to worlds unthought of. For instance, because my son was a member of a signing choir in high school, I now know that music seen is every bit as beautiful as music heard. This is something I would have never understood had I not been blessed with a deaf son. I can assure you that your life will be much richer as the result of your blessing, as well.

Stick around AD and keep posting. Discussions sometimes get heated, but they are always informative. If only to show you exactly what you DON'T want to do:)!
 
jillio said:
That is not to say that I oppose CI at all. For many children, the CI is the correct choice. My opposition to CI is when implantation is done at such a young age, and for the reason of "fixing" a child's deafness.
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If the reason for giving a child a CI is done to "fix" their deafness I would oppose it on those grounds too. I tend to agree that there are some hearing parents out there who have a grief and acceptance problem and such parent should be encouraged seek further help and counselling.

However if the reason is to increase their opportunities and choices in life then I think that is a perfectly good reason to proceed with a CI. The fact is that many children with CIs learn speech, which they could not have done with hearing aids and speech is empowering, just as a Chinese migrant empowers himself by learning English.

Not all parents go through the CI route do it in order to "fix" their children and indeed they try and participate in deaf events and learn to sign.
 
Oh, I maeant to ask you: you posted about your wife singing a song to your son, and then he choose the video that contained the song. Your wife was changing his diaper at the time. I would think that he would be in a position to look at her face. Just food for thought, but it is sometimes easy, in our hopefullness, to confuse what a child has picked up on visually through lipreading and body language, for what they have actually "heard". If he was familiar enough with the song to know what video it was on, it is entirely possible that he recognized key words as he lipread your wife singing the lyrics. That's not to say that you aren't correct, just to alert you to another possibility. My son to this day enjoys music with an unaided severe to profound loss, and is a remarkable dancer. I even enrolled him in ballet classes as a toddler, thinking that the rhythm exercizes would assist him in grasping the rhythm and flow of language. But his enjoyment is based on tactile information, not auditory information. However, his enjoyment is as valid as the enjoyment level of any hearing person.
 
jillio said:
The implant will not necessarily improve his oral skills. This is a misconception that the medical field uses to convince parents to implant. The issue is not whether he develops oral skills, but that he develop language skills. This can be done with sign. However, at the age of 2, and after 1 year of therapy, his oral skills are not improving. He is already suffering language delays that will affect him for the rest of his life. My suggestion would be to continue with the HA, the speech therapy, and the lipreading, but to also make sure that his envirnoment is language intensive with sign. Cummunication is the key to success. From what you have said, even with his HA, he apprears to be very visually oriented, and that is a clue for to use in your decision. And, by the way, I am a parent who chose not to implant, under almost identical circumtances as you describe with your son.
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Ivan's dad,

I agree with Jillo because I am profoundly severely deaf since birth. My parents placed me in an oral school and I guess I was able to grasp the concept of spoken English and then 4 years later, my brother was born with the same hearing loss. Due to my success with the oral approach, my parents put him in the same program. Guess what? It didnt work for him. My brother continued to struggle with grasping the concept of spoken English. It had no meaning for him so by the age of 5, the public school called an emergency IEP meeting to address my brother's struggles in the public school. They referred him to the deaf school nearby so my mom reluctantly agreed to try. My brother totally fit right into in and picked up on ASL so fast. Due to his delays in language, reading and writing were difficult for him so he struggles with it even to this day. He said reading has gotten a lot easier for him since graduating from Gally but he still struggles to write like a college graduate.

I am sure if my parents implanted both of us, the results would probably have been the same. I am just glad that my mom put aside her fears and needs to give my brother that opportunity to go to the deaf school where he obviously thrived, I think if my brother was forced to stay at the public school, he wouldnt be where he is now. A PE teacher. :)

As for myself being successful in the oral program...yes, academically I did well but social-emotionally, I didnt do well and I grew up to be a bitter and angry adult. I had to go to therapy to work out my anger at being forced to meet hearing needs so now I am ok. I am fully involved in the deaf community and ASL is now my primary language to use.

Pls consider all those issues for your child and just follow what feels right in your heart.
 
jillio said:
Oh, I maeant to ask you: you posted about your wife singing a song to your son, and then he choose the video that contained the song. Your wife was changing his diaper at the time. I would think that he would be in a position to look at her face. Just food for thought, but it is sometimes easy, in our hopefullness, to confuse what a child has picked up on visually through lipreading and body language, for what they have actually "heard". If he was familiar enough with the song to know what video it was on, it is entirely possible that he recognized key words as he lipread your wife singing the lyrics. That's not to say that you aren't correct, just to alert you to another possibility. My son to this day enjoys music with an unaided severe to profound loss, and is a remarkable dancer. I even enrolled him in ballet classes as a toddler, thinking that the rhythm exercizes would assist him in grasping the rhythm and flow of language. But his enjoyment is based on tactile information, not auditory information. However, his enjoyment is as valid as the enjoyment level of any hearing person.
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I am the same thing when it comes to music. In middle school, I used to study and memorize the lyrics to the popular songs and listened to the songs over and over and over again so I could sing along with them to be like my peers. All that time could have been spent studying for my math tests which I did badly.:giggle:

Anyways, I love music and I can disinguish the the sound differences between some of the instruments playing or whether the singer is male or female but understanding the words, I am unable to do that unless I practice and practice which I have no time for due to being a career mom with a husband and two kids. :)
 
shel90 said:
Ivan's dad,

I am just glad that my mom put aside her fears and needs to give my brother that opportunity to go to the deaf school where he obviously thrived, I think if my brother was forced to stay at the public school, he wouldnt be where he is now. A PE teacher. :)
.
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(Sorry to be OT Ivan's dad)

Hey Shell that's great for him. Does he teach in a deaf school or in a mainstream school? My sister has been exploring career options for my nephew although he isn't physically minded (so no PE!) but I was just wondering how your brother gets by teaching hearing students (I assume). Doe he have an interpreter with him?
 
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