hearing aids or cochlear implants for my 5 year old please advise

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richard.henman

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hi im from london uk
i have recently been told my daughter of 5 may benefit from Ci rather than her Ha which she has had since the age of 2.

she is profoundly deaf and gets on withe her Ha very well, always has.
she learns bsl and also spoken english at school but is still missing many silent types of letters / words i.e sh, th, f.

most people find her hard to understand as she tends to rabbit on so much and struggles to pronounce words properly.

already she has been through surgery on her heart at 6 months old and has not had to good a time of it and im finding it hard to make a decission about what would be best for her.
i would like the views of your experience as i can see many of you may have been through this yourself.

im not quite sure what is involved in the surgery side of Ci or of any side affects and discomforts not to mention she is still at a school where possibly may get picked on for being different as the Ci seems to be more on display. are they able to hide device under hair and are they waterproof or irittating.
are there more benefits for Ci than Ha to make this an easy dessision. Ha are so advanced now as to even 3 years ago and im sure they will just get better in the future, but is just amplifying sound enough ?.

should i wait for her to get to an age where she can choose for herself or would i be depriving her of vital learning and language skills from her early years at school.

she is deaf in both ears so does this mean two devices on her head ? i just dont know. i have an appointment with the audioligist on 8/7/08 and will obviously stress my concerns.

please feel free to offer any advice i would appretiate it as i could list reasons for her not to or to have the Ci for hours.

thank you for your time

Richard :wave:
 
Hello and welcome to the forum. Give them time to answer your quesetion. It might take a while so don't get frustrated if they dont answer in timely manner. As for advice, It sounds like I was in a very similar situation as your daughter and I didn't get CI and I am able to speak very well and turned out fine. I have considered getting CI. I don't know if I will or not. However for now, I'm happy.

I am sure the others will be able to give you more information. If I were to give you advice, this is it. Do take your time and don't let the professional push you into something you don't feel right at the time. I don't see anything wrong with taking taking your time to make a decision. I didn't get an CI and I can speak very well. Since that is the case, CI is not needed in order to speak very well as they make it seem to be.
 
Hi, there...

Until others come along to assist you (there is a lot of that here on this board in the archives), I wanted to mention something: How is it that your child is PROFOUNDLY deaf and can "GET ON with her hearing aid very well...."?
 
Hi and welcome to AD!

I think people who are CI users would the ones who can give you a better idea. However, do not let any professionals push you into doing something you do not feel comfortable with. Research and talk with many individuals from deaf adults and parents of deaf children.

I was born profoundly deaf since birth and wore HAs all of my life. I rely on them to help with my speech reading skills but I will always need visual cues to communicate with others whether it is lipreading or ASL (American Sign Language).

Good luck!
 
This is a very personal decision. The surgery has risks, especially if she has a pre-existing heart condition. I think the key is, what are you willing to do to make your child's speech better. A CI requires hundreds of hours of follow-up therapy. You also may be advised to change your child's school placement to a pure oral enviroment, and drop the signing. are you willing to do that? How does she function with her aids? If she is gaining benefit from her aids, I would think there is no hurry, that you can wait until your child can help with the decision.
 
Hello Richard, I suggest you go to Hearing Aids and Cochlear Implants forum. You will find an answers. Welcome to AllDeaf. Have an enjoying read the posts. :)
 
Mods: It seems like there are two threads made by the OP about this...can u merge them pls? Thanks!
 
In response to faire-Jour, I don't see why his daughter should have to drop the signing if the parents decide to get a CI for her... sure, she'll need extensive listening and speech therapy, but that is no reason to drop the signing at all. I say, do whatever the parents can do to communicate with their deaf child. A combination of both speech and signs is the best way to go, I think. My parents were strongly advised against use of sign language with me when I was very young, but my parents strongly believed in using sign language with me (they just wanted to be able to communicate with me, and if signing was the way to go, so be it!). Now, at 22, I hardly ever use signs and my speech is fairly normal for the most part (when I don't have my hearing aid on, then my speech isn't as smooth). The whole "using signs will prevent deaf child from learning to speak" is pure B.S., but that's my opinion.


Anyway, Richard, as for your daughter, just do as much research as you can, figure out the pros and cons of both the cochlear implants, and hearing aids. Speak with different professionals and get their opinions, speak with other parents of both children with CIs and children with hearing aids, etc. It is a very personal decision, and everyone will have their own reasonings for whether or not they chose a CI for their child. You know your child the best, so I'm sure you'll figure out what would be the best for her in regards to her hearing and communication needs.
 
Tousi said:
Hi, there...

Until others come along to assist you (there is a lot of that here on this board in the archives), I wanted to mention something: How is it that your child is PROFOUNDLY deaf and can "GET ON with her hearing aid very well...."?
Click to expand...

Tousi - i was profoundly deaf at 2 years old, and I was able to do really well with hearing aids. It's all because of training, and having just enough residual hearing left to be able to hear. Now, my residual hearing is gone, hence why the CI.
 
faire_jour said:
This is a very personal decision. The surgery has risks, especially if she has a pre-existing heart condition. I think the key is, what are you willing to do to make your child's speech better. A CI requires hundreds of hours of follow-up therapy. You also may be advised to change your child's school placement to a pure oral enviroment, and drop the signing. are you willing to do that? How does she function with her aids? If she is gaining benefit from her aids, I would think there is no hurry, that you can wait until your child can help with the decision.
Click to expand...

Cloggy may be a better person to answer this as he's a father of a bilateral child. What I found very weird is "Hundred of hours of follow-up therapy" I HIGHLY doubt that. Yes the first 3 months you have more mapping, but then after about 6 to 8 months or so, the map is pretty much set, and you go back for mapping on a yearly basis.
If you're talking about the AVT or speech therapy...many deaf schools (Total communicaton type of school), provide those. So, I find hundred of hours a little far fetched.
 
I don't want to encourage stopping signing with your child either, but often it is advised by the professionals who work with CI kids.

As the parent of a Deaf child who has considered a CI, I have been informed that there are in fact hundreds of hours of speech and listening therapy required after implantation. A conservative estimate would be 3 hours a week for 2 years equals....312 hours of therapy, and that doesn't include AVT at home time.
 
Richard, I am profoundly 90db deaf. I am plan to get a Cochlear implant in future. Can I suggest you? Let your daughter's decide to get a hearing aids or Cochlear implant when she is getting old. That's not good to force her into CI without sign languages. She can wear hearing aids for experience and then get a CI in future. I am definably, CI people will answer your questions.
 
richard.henman said:
i have recently been told my daughter of 5 may benefit from Ci rather than her Ha which she has had since the age of 2.

she is profoundly deaf and gets on withe her Ha very well, always has.
she learns bsl and also spoken english at school but is still missing many silent types of letters / words i.e sh, th, f.
Click to expand...

When I was two up to 29 years old...I was profoundly deaf, and was able to hear very well with hearing aids. And yes, I was missing the silent type of letters and quiet letters. I have learned to compensate for that. That's why I had speech therapy during school. When I got the CI, I am now able to pick up on all the ones that I was missing.

most people find her hard to understand as she tends to rabbit on so much and struggles to pronounce words properly.
Click to expand...

OH...I do too! Your daughter is fairly young. It took me years to really learn how to speak properly and pronounce words. Even now, I stumble on a word or two. The only thing I can suggest is to get her through better AVT/ Speech therapy. Or teach her at home. Take an hour each day, and just go over words with her, have a conversation. I always feel better when I talk and don't say a word correctly and I am corrected. That way I learn how to speak the same word properly next time.

already she has been through surgery on her heart at 6 months old and has not had to good a time of it and im finding it hard to make a decission about what would be best for her.
i would like the views of your experience as i can see many of you may have been through this yourself.
Click to expand...

Ultimately, it is your decision to make. We can only tell you from our experiences, but do not ever make a decision based on what we tell you what to do. There will be some ADers that will tell you NOT to implant your child. So, that's just kind of a fair warning.

im not quite sure what is involved in the surgery side of Ci or of any side affects and discomforts not to mention she is still at a school where possibly may get picked on for being different as the Ci seems to be more on display. are they able to hide device under hair and are they waterproof or irittating.
Click to expand...

You'll need to speak with the surgeon about this. Read a few of the CI'ers blogs, and you'll get a fair idea what it entitles. I've read that children tend to bounce back faster than adults. Side effects - dry mouth, weird taste in the mouth, sore head or numbness. All the side effects go away from a couple weeks to a couple months. Some people it takes longer, other people shorter, others never had any. So, it all depends.

I'm hoping that Cloggy will be on here. He'll be the great person for you to interact with. He can explain what it's like to have a CI child (I know there's many others on here, but Cloggy is pretty much stands out), and if kids make fun. Yes, the CI can be hidden under hair (the COIL, not the actual processor), or get body worn processor, and no BTE will be on her ears. Cochlear's Freedom BTE processors are water resistant (I have been out in the pouring rain, in the shower), not Water proof. No hearing aid or CI is water proof. However....there is a way. Allow Cloggy to explain. :-D Irritating - No. At first, it is because it's rubbing against the scars...but that's only if it's BTE. Over time, the child gets used to it, then it's not irritating at all. The coil magnet needs to be the right size to avoid irritation on the magnet site.

are there more benefits for Ci than Ha to make this an easy dessision. Ha are so advanced now as to even 3 years ago and im sure they will just get better in the future, but is just amplifying sound enough ?
Click to expand...
That's the million dollar question. Many people want to wait until newer technology to come out...but then when the newer technology come out, they want to wait for more newer technology. CI gives me a LOT more benefits than hearing aids. I can hear the clock ticking, I can hear the rain from inside, I can hear my car blinker, etc. I couldn't with my HAs. HA's is basically just an amplification device. CI is technology to simulate the hearing nerves directly. Two very different things. If you feel your child is really benefiting from HAs, keep at it. Maybe over time, she will come to a decision herself and ask you about CIs. This may help you make a decision because she was part of it.

should i wait for her to get to an age where she can choose for herself or would i be depriving her of vital learning and language skills from her early years at school.

she is deaf in both ears so does this mean two devices on her head ? i just dont know. i have an appointment with the audioligist on 8/7/08 and will obviously stress my concerns.
Click to expand...

No, she will not be required to have two CI's. Bilateral is becoming more accepted now than years ago. Many adults only have one. Many children have one, some have two. There's only about 1300 to 1400 people in the world that have bilateral (anyone - PLEASE correct me if I'm wrong...I know it's a very low number).

Be wary of audiologist saying, "Oh CI is perfect for her!" never allow your decision based on just one person. Speak to several people, talk to people on AllDeaf, contact the various CI companies (Cochlear, Advance Bionics, and Med-El), learn about the ins and out about CI. No one said it was an easy decision. My audiologist is the type of person that would tell you bluntly what to expect. You do not pop on a CI and expect to hear on first day. Does not happen that way. It takes time and training to really get the full benefit. I'm still going through that process. Parents MUST get involved with the training. My audiologist is sick of hearing parents' not doing the training, or lazy about it, or making excuses. Children get set back if they don't learn how to function with their CI if the parents don't get involved. I know Cloggy and a few other bloggers do a great job at that. I suggest you to check my blog, and check "Other Blogs", and you will see a few of them are children.

please feel free to offer any advice i would appretiate it as i could list reasons for her not to or to have the Ci for hours.
Click to expand...

I hope I was some of help. Basically my whole point is...do not allow yourself to make a decision based on someone elses' experience. You know your daughter. Talk to your daughter. Learn everything about CI. Who knows, maybe Hearing aids is good enough for her...for now. Then perhaps in a few years, she wants a CI...at least you will have some background resources to aid you to talk to her about it if possible.

AND - yes, I totally agree, that she should keep up with BSL and Spoken language. Over the years, when she gets older...she can make a decision on whether she wants to stay in the deaf community because she knows BSL, OR rather not use BSL, and just speak for herself. You're giving her the best of both worlds. I know ASL and I speak fluently. Having both gives me chances to stay in the hearing world and deaf world.

Sorry for such a long post...I wish you best, and welcome to AD!
 
Pinky678 said:
Richard, I am profoundly 90db deaf. I am plan to get a Cochlear implant in future. Can I suggest you? Let your daughter's decide to get a hearing aids or Cochlear implant when she is getting old. That's not good to force her into CI without sign languages. She can wear hearing aids for experience and then get a CI in future. I am definably, CI people will answer your questions.
Click to expand...

my daughter is 90db deaf also but she can sign and also lip read well for a 5 year old, i learn from her as she shows me and i can understand much of her speech.
if you plan to get ci does this mean they offer better hearing and do you think you would of benefited more if you would have had ci from an early age ?
thank you
 
faire_jour said:
I don't want to encourage stopping signing with your child either, but often it is advised by the professionals who work with CI kids.

As the parent of a Deaf child who has considered a CI, I have been informed that there are in fact hundreds of hours of speech and listening therapy required after implantation. A conservative estimate would be 3 hours a week for 2 years equals....312 hours of therapy, and that doesn't include AVT at home time.
Click to expand...

Actually a couple 3 hrs of theraphy/week for two years is not really that much. I had a daughter in EI and who is still sped. She is hoh, but that is her secondary problem, her first is DS. With children who have DS they do have reception and speech problems even without hearing loss. The kids I know about who actually talk and talk pretty well had parents who talked very much themselves. A child who is getting theraphy at school would probably do quite will at home without alot of extra theraphy, just talking talking and more talking helps wonders.

And it is much easier to learn to hear when you can acutally hear. :)

Good Luck in your research Richard. If you daughter is doing well with HA's she probaly will do better with a CI. (I used HA's and really am amazed at how well a CI works in comparision with what I had back then, the stress levels are much lower, I would never want to go back to just a HA, they are nothing alike)
 
Tousi said:
Hi, there...

Until others come along to assist you (there is a lot of that here on this board in the archives), I wanted to mention something: How is it that your child is PROFOUNDLY deaf and can "GET ON with her hearing aid very well...."?
Click to expand...

since she had the aids fitted at 2 years old she instantly bonded and never took them out and always seemed to know they was helping her and over the past 3 years her speach and hearing has come on a great deal.
she is a perfect example and role model for other kids to follow.
but i still find myself having to be loud for her to hear or for her to see my lips to know what i am saying
thank you
 
richard.henman said:
my daughter is 90db deaf also but she can sign and also lip read well for a 5 year old, i learn from her as she shows me and i can understand much of her speech.
if you plan to get ci does this mean they offer better hearing and do you think you would of benefited more if you would have had ci from an early age ?
thank you
Click to expand...

You're welcome anytime. :) Your daughter is same my 90db deaf. I can't speak very well. I used to go Speech Therapy when I was in mainstream school. I made a wrong decide to transfer Deaf School from Mainstream School. I stopped wear hearing aids and not attend to speech therapy.

I decide to get back to wear hearing aids again. I can lipreading a little bit. I prefer to get a CI. I am only 26 half years old. I can speak for basic like... I love you, Mom, Dad, baby, No, Yes, Thank you, Why, Who, When, Where, what?, So what? and several word not at all.

My mom wanted me to get a CI real early age. My dad told her to wait until I getting old and make a decide. Because I was scare of operation. I don't like to enter the surgery room. It scared me when I was little kid.

Now, I accepted the operation at adult age.

Did you know CI is expensive than Hearing aids? I am glad that your daughter can sign language.
 
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