Amen!!!!!! Nothing wrong with opting for an implant when it's blatently obvious that there's no other alternatives. BUT, the question is the urgency to implant really that important when hearing aids are still somewhat useful (and not just "oh my kid can' hear well in noise")
My 6 month old son~ HA's or CI ?
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Amen!!!!!! Nothing wrong with opting for an implant when it's blatently obvious that there's no other alternatives. BUT, the question is the urgency to implant really that important when hearing aids are still somewhat useful (and not just "oh my kid can' hear well in noise")
Frisky Feline
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I am not sure if you want to get feedbacks from parents of deaf with ci only OR just in the general section like you do not mind hearing the feedback from deaf hoh or late deaf people who have no deaf children, if so post them in the hearing aid or cochlear implant section. Let you know we deafies/hoh or late deaf are not ignoring your posts when we are not allowed to post here in the parents of deaf kid with ci.
Hearing Aids & Cochlear Implants - AllDeaf.com
So welcome to AD.
Hearing Aids & Cochlear Implants - AllDeaf.com
So welcome to AD.
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My daughter is soon to be 3, and received bilateral Advanced Bionics CIs at 12 months old. We had your same worries about being pushed towards implants by the medical community but that wasnt the case at all. Our hospital started us out at their hearing aid center and audiologists but after many months and tests showing no results, they helped us explore CIs. We never felt pressured to get her CIs, in fact just the opposite. They had us slow down and digest everything before they would let us make a decision. They also suggested sign and helped us to find resources for that no matter what our final decision would be.
Our daughter loves her implants, and asks for them every morning. She sings and loves music, and talks effortlessly on the phone with her grandpa. We are very pleased with the results and how happy her CIs make her- but I remember being afraid of the unknown, way back when. I would say explore your options to the point that you can make an objective decision. The unknown is only scary until you start asking questions!
Our daughter loves her implants, and asks for them every morning. She sings and loves music, and talks effortlessly on the phone with her grandpa. We are very pleased with the results and how happy her CIs make her- but I remember being afraid of the unknown, way back when. I would say explore your options to the point that you can make an objective decision. The unknown is only scary until you start asking questions!
I am scared of the unknown. that is correct.
Im scared that they wont work.
scared of infection or body rejecting the implant.
scared that if these concerns I noted above happen I just ruined whatever hearing he had left by doing a CI. And now he has no sound at all.
Scared of him getting hit in the head or crashing while playing contact sports. or bike riding, skateboard who knows if he will do these activites but what if he does and hits his head on the implant.
the side affects I have heard of twitching and headaches. Sore spot from where they cut for the implant.
the fact that they can fail and have to re-implant. I talked to parents that had to have their daughter re-implanted this is her 4th time!!!!! she is only 8 years old!! I cant imagine. Another one who refuses to get another because of surgery again and her fear is it failing on her once again.
It consumes my mind daily. I dont know what to do and it kills me somedays cause yes I want my child to hear something and communicate with his voice, not only to me but to the rest of the world aswell. He will always have ASL both of my kids will. They wont feel like they are in between hearing and deaf worlds. Hard of hearing or Deaf you need ASL. But that is my opinion.
Anyway I have searched elsewhere besides ALLDEAF for advice, stories from parents and adults that have a CI. Now I want info on ones that choose hearing aids.
that is my next step to post here is to ask who has severe to profound loss and uses hearing aids? I have found few stories though and hoping on here it will give me more advice or info.
Hopefully I post it in the right thread I did not know and sorry about that.
I appreciate all your comments and I thank you. I am still looking for the best path for my son I am his mother and I want to do what is best. But I will continue to search because maybe a CI isnt what he needs or maybe it is. I dont know yet.
I do have to say I am lucky to have 2 wonderful kids and I believe that I was blessed with these children for a reason.
Im scared that they wont work.
scared of infection or body rejecting the implant.
scared that if these concerns I noted above happen I just ruined whatever hearing he had left by doing a CI. And now he has no sound at all.
Scared of him getting hit in the head or crashing while playing contact sports. or bike riding, skateboard who knows if he will do these activites but what if he does and hits his head on the implant.
the side affects I have heard of twitching and headaches. Sore spot from where they cut for the implant.
the fact that they can fail and have to re-implant. I talked to parents that had to have their daughter re-implanted this is her 4th time!!!!! she is only 8 years old!! I cant imagine. Another one who refuses to get another because of surgery again and her fear is it failing on her once again.
It consumes my mind daily. I dont know what to do and it kills me somedays cause yes I want my child to hear something and communicate with his voice, not only to me but to the rest of the world aswell. He will always have ASL both of my kids will. They wont feel like they are in between hearing and deaf worlds. Hard of hearing or Deaf you need ASL. But that is my opinion.
Anyway I have searched elsewhere besides ALLDEAF for advice, stories from parents and adults that have a CI. Now I want info on ones that choose hearing aids.
that is my next step to post here is to ask who has severe to profound loss and uses hearing aids? I have found few stories though and hoping on here it will give me more advice or info.
Hopefully I post it in the right thread I did not know and sorry about that.
I appreciate all your comments and I thank you. I am still looking for the best path for my son I am his mother and I want to do what is best. But I will continue to search because maybe a CI isnt what he needs or maybe it is. I dont know yet.
I do have to say I am lucky to have 2 wonderful kids and I believe that I was blessed with these children for a reason.
rick48
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Suzanne,
I raised a child with a ci from age to to an adult. Went through all the bumps and bruises and yes, even re-implantation. She played sports in high school and club level field hockey in college. She skis and has friends who played football and hockey in high school as well soccer, baseball, basketball, volleyball and lacrosse in college. She has friends who not only have graduated from college but have gone on for their masters and in one case, a law degree.
What they have in common is that they had parents who took the time, like you, to research the cochlear implant, to ask questions, to question whether they were making the right decision, but ultimately, to make a decision that they felt was in their child's best interests, all without the benefit of hindsight. But that is what being a parent is all about!
We are all different, we can look at the same risks and rewards associated with the cochlear implant and make different decisions for our children. There is no one best or right decision for all children, so in the end, do what you think is best for your child.
Wish you the best of luck on your journey,
Rick
I raised a child with a ci from age to to an adult. Went through all the bumps and bruises and yes, even re-implantation. She played sports in high school and club level field hockey in college. She skis and has friends who played football and hockey in high school as well soccer, baseball, basketball, volleyball and lacrosse in college. She has friends who not only have graduated from college but have gone on for their masters and in one case, a law degree.
What they have in common is that they had parents who took the time, like you, to research the cochlear implant, to ask questions, to question whether they were making the right decision, but ultimately, to make a decision that they felt was in their child's best interests, all without the benefit of hindsight. But that is what being a parent is all about!
We are all different, we can look at the same risks and rewards associated with the cochlear implant and make different decisions for our children. There is no one best or right decision for all children, so in the end, do what you think is best for your child.
Wish you the best of luck on your journey,
Rick
lovezebras
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I have a severe/profound loss and can tell you that
1. You're doing great by giving your children access to ASL. That's amazing. I wish I had that access to communication but since I started losing my hearing later in life I didn't get the chance to learn ASL at a young age. Starting now though..
2. I think it's also good that you are trying ha's before the CI. Me personally I no longer benefit from hearing aids and am now waiting to get implanted (my wonderful health care system has a 3 year wait). I am a competitive cheerleader and I participate in other activities such as snowboarding and cycling. Obviously there are risks to the surgery like the implant failing or getting hit in the implant site.
Skateboarding requires a helmet so the helmet would protect the implanted area. Scuba diving..well that could be a problem. Any contact sport requires a helmet tho and I'm sure there are many CI users or parents of CI users that can tell you what helmets are better etc. If that's the route you are going of course.
No one can really tell you what to do. It's ultimately your choice to implant or not. I just personally feel that in my case the pros outweigh the cons.
Good luck!
1. You're doing great by giving your children access to ASL. That's amazing. I wish I had that access to communication but since I started losing my hearing later in life I didn't get the chance to learn ASL at a young age. Starting now though..
2. I think it's also good that you are trying ha's before the CI. Me personally I no longer benefit from hearing aids and am now waiting to get implanted (my wonderful health care system has a 3 year wait). I am a competitive cheerleader and I participate in other activities such as snowboarding and cycling. Obviously there are risks to the surgery like the implant failing or getting hit in the implant site.
Skateboarding requires a helmet so the helmet would protect the implanted area. Scuba diving..well that could be a problem. Any contact sport requires a helmet tho and I'm sure there are many CI users or parents of CI users that can tell you what helmets are better etc. If that's the route you are going of course.
No one can really tell you what to do. It's ultimately your choice to implant or not. I just personally feel that in my case the pros outweigh the cons.
Good luck!
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Hi, and belatedly, welcome!
I'm confused about the rules on this section as well, Suzanne -- it seems like far more people without knowledge of pediatric CIs and the decision-making process around getting CIs have posted here than those who have gone through the process with and for their children (either to get a CI or not to), so I'm not sure why people are complaining about not be able to post, while they are, in fact, posting.
I wish we had a section that was targeted at all parents of deaf kids, rather than just those whose kids have CIs. I think the benefit would be for people just like you to get input from those who made the decision to get CIs, those who made the decision to use HAs, those who made the decision for their children to be unaided altogether, as well as those who made choices around the many academic approaches available. And I think this could be a place for parents of deaf kids to ask questions and discuss issues with people who have direct experience with the various approaches/decisions/technologies. With input open to the full AD community, not just parents of deaf kids who have CIs.
Besides, I think there are only 4 parents with children who have CIs on the board, and an even smaller handful of those whose children were physically eligible, but who have chosen not to get CIs -- all with insightful and very different perspectives and approaches. We tend to get lumped together, but you might be surprised how much our approaches vary, and yet how much we've all learned from one another, regardless of approach. I'm a parent of a bi-modally bilingual deaf 6YO who uses CIs and is fluent in both spoken and signed language.
I think you've gotten some great advice here. My daughter is doing so very well with 2 CIs, having attended a bi-bi school in which ASL was the primary means of instruction / interaction, and surpassing all expectations. The only change I'd make if I had the chance to do it again: get the entire family/friends fluent in ASL in her first year and get her CIs simultaneously, rather than a year apart, and push to do that a year earlier instead of wasting time and causing my daughter the pain of HA trials*! (*But, of course, that's with the hindsight of knowing HAs would not provide any useful sound, just infections and painful amplification -- HA trials are a must have).
I'm confused about the rules on this section as well, Suzanne -- it seems like far more people without knowledge of pediatric CIs and the decision-making process around getting CIs have posted here than those who have gone through the process with and for their children (either to get a CI or not to), so I'm not sure why people are complaining about not be able to post, while they are, in fact, posting.
I wish we had a section that was targeted at all parents of deaf kids, rather than just those whose kids have CIs. I think the benefit would be for people just like you to get input from those who made the decision to get CIs, those who made the decision to use HAs, those who made the decision for their children to be unaided altogether, as well as those who made choices around the many academic approaches available. And I think this could be a place for parents of deaf kids to ask questions and discuss issues with people who have direct experience with the various approaches/decisions/technologies. With input open to the full AD community, not just parents of deaf kids who have CIs.
Besides, I think there are only 4 parents with children who have CIs on the board, and an even smaller handful of those whose children were physically eligible, but who have chosen not to get CIs -- all with insightful and very different perspectives and approaches. We tend to get lumped together, but you might be surprised how much our approaches vary, and yet how much we've all learned from one another, regardless of approach. I'm a parent of a bi-modally bilingual deaf 6YO who uses CIs and is fluent in both spoken and signed language.
I think you've gotten some great advice here. My daughter is doing so very well with 2 CIs, having attended a bi-bi school in which ASL was the primary means of instruction / interaction, and surpassing all expectations. The only change I'd make if I had the chance to do it again: get the entire family/friends fluent in ASL in her first year and get her CIs simultaneously, rather than a year apart, and push to do that a year earlier instead of wasting time and causing my daughter the pain of HA trials*! (*But, of course, that's with the hindsight of knowing HAs would not provide any useful sound, just infections and painful amplification -- HA trials are a must have).
You know damn well that wasn't what was going on. SayWhatKid was trying to pick a fight in here, and Rick used the forum rules to prevent it from happening. Of course SayWhatKid has picked up where he left off in the other thread, trying to bait Rick into a broader argument about CIs and some supposed conspiracy by manufacturers to push them on to poor, helpless infants.
Thank you- @GrendelQ for your posting. I really like getting any feedback from anyone about this.
I am also sorry again for posting in the worng area. I didnt know. I just assume "parents of deaf children with CI" was ok. But my post was Hearing aids or CI. Sorry that my posting is causing anyone to be upset.
How do I have a moderator if that is right.......to move my post? I am still new to alldeaf and dont know my way around here. any help? I will be more cautious next time
I am also sorry again for posting in the worng area. I didnt know. I just assume "parents of deaf children with CI" was ok. But my post was Hearing aids or CI. Sorry that my posting is causing anyone to be upset.
How do I have a moderator if that is right.......to move my post? I am still new to alldeaf and dont know my way around here. any help? I will be more cautious next time
BleedingPurist
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You didn't post in the wrong area and have nothing to apologize for. Unfortunately, this forum isn't the best place for information regarding children and CIs as it is overrun with individuals who have plenty to say on it, but no direct personal experience with either hearing or CIs. What they observe with their friends is irrelevant.. especially since they are usually talking about friends who were implanted late (another point many can't grasp the ramifications of around here) or they miss the fact that their friends who were implanted young now hate their CIs due to the reactions of the Deafs they encountered rather than the device which can be simply not used or removed. It's an element that is rampant in the Deaf community.
An example of this is one of my former housemates who had parents that never learned to sign and used gestures to communicate with him. Of course, that is tragic as it is... but due to his Deaf friends, they helped him see the light in that he should hate and disown his parents for their ignorance. His parents were Mexican, Spanish-speaking with really no English. The Deaf community took a sad situation and made it worse. Cults use this method as well to pull their targets away from their families into their fold. It's one thing to recognize your parent's failings, but part of growing up is accepting they are human and forgiving them for their missteps where they weren't intentional.
You have it covered and your son is blessed to have a mother who will consider all the options and maximize the benefits of whatever path you choose for him.
Frisky Feline
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BleedingPurist
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Deaf community aka a CULT? are you kidding me? Please dont be hallucinating!!!
Frisky, you are doing it again. Proper reading of the English language is essential if you are going to comment without taking it way off topic. It's an analogy. No, the Deaf Community is not a cult. Turning people against their loved ones due to perceived wrongs is a shared hallmark though. It's less about the Deaf Community than it is certain immature individuals who are filled with anger and victimhood that identify and socialize with the Deaf Community (including hearing folks.)
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You posted in the right place. Some people are either messing with you (a little introductory hazing) or angry at you for asking your question of parents who are raising deaf children or deaf adults with CIs. Those who are fussing about where you placed your questions are very much against Cis for children and don't want you to hear from or about those deaf children who grew up with CIs and are happy, healthy CI users. They'd rather you hear from adults who didn't have the opportunity -- for better or worse -- to grow up with CIs and don't know much about the children who use CIs.
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