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

sorry how do i merge

Let the moderaters do that. Dont worry about it..eventually they will see my post and merge them. :) No apologies needed!
 
You're welcome anytime. :)

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


here in uk she will be covered by nhs and wont have to pay for ci as we dont have to pay for ha also but money would be no object if i could do the right thing by her
thanks again
 
Hi Richard

I am from South of england,

I was born profoundly deaf (90 in right 120 in left and my High freq is non exist) I was brought up with hearing aids and spoken english, I rarely signed only with my deaf friends, I was mainstreamed then to oral deaf school (Mary Hare Grammar school).

Like your daughter, i coped brilliantly with HA, had excellent speech but struggled with sh, c, ch, ssss, so on ( in hearing aid terms....i can hear vowels but not constant (sp) So therefore my name is Charlotte i only hear "arlote" if you see what i mean. I cannot hear High frequency sounds like whistling, sirens, birds singing, dog crying, cat mewing that kind of thing.
I can recongise few words without looking at lips (very simple like, "would you like a cup of coffee?")

Now at 30, after more than 10 years of struggling with hospitals to allow me to get CI due my long deafness, I was finally refered (after moving to different area) and failed all 3 hearing aid trials (they would test with HA first before considering CI) I was assessed and approved within 3 months. I will be going under the knife on the 16th July, I know i will lose rest of my resiusal hearing in my "good" ear.

I chose to have CI because i am hoping to bring in bit more of sounds in my life especially High frequencies, and to beable to be more aware of my surrounding ie to identify sirens. I am told that my speech won't get any better than it is now but who knows, also i wouldn't beable to use phone but a friend of mine was totally deaf for 20 years and got CI, she was able to communicate quite well on the phone so i am keen to learn that.

My operation is scheduled for 16th July, i am told i will be in little discomfort and will have turban bandage on for 48 hours. They will send me home with antibiotics. I will be posting about this day when time comes and i hope you can read my experinces.

Perhaps it would be best to meet other children of similar age with CI/or two so that your Daughter can see what they are and for you to learn about it and see whenever it's suitable for your daughter. Don't let professionals push you... follow what your heart tells you and you know your little girl (the professionals don't).

I am with SOECIC (south of england cochlear implant centre)

Good luck

Sorry this is bit long.
 
I wouldn't be asking for any advices or inputs on a important decision like this on a internet board.

I would check locally or talk to someone locally even if it meant a couple of hour drive to meet one. Expecially with folks that already have experience or experienced it in that area.

You local doctor and education system should be able to provide you wealth of information in this area and if they do not then perhaps you need to seek another doctor or education system for your child. It is your child life and health that you are making a decision on. And even point you to the right direction to meet other parents which have both accept and deny CIs and their reasoning.

I wish the best for you and your child!

.
 
Richard,
I feel that statement, kinda answers your own question. If she is accept of it and you/rest of family are good, maybe don't force issue quite yet. It sound like she is very intelligent individual and see how goes in first couple years of school, then collaborate with teachers on her progress, continue to get more education and multiple opinions from licenced professional. Also like Sekhmet says don't hesitate to asking people with children in similar situation to help guide descision. Then by that time both she and you could discuss together and make descision.
 
Hi Richard

My operation is scheduled for 16th July, i am told i will be in little discomfort and will have turban bandage on for 48 hours. They will send me home with antibiotics. I will be posting about this day when time comes and i hope you can read my experinces.



thank you charlotte i appretiate the info and will look forward to hearing of your experience with ci
i hope they work well for you and wish you all the luck
 
I wouldn't be asking for any advices or inputs on a important decision like this on a internet board.


thank you i wanted to speak to real people with simmilar backrounds rather than her from professionals all the time cause i dont want her to be forced into it and be used as a gunie pig for some wannabe doctor to practice on but i needed to hear both sides from people who have the experience to tell me now what they might of changed at her age if they knew what they knew now
thanks again
 
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...."?

At the age of 7 months, I was fitted with hearing aids and I got on well with them enough to be able to communicate with any hearing person. I just have trouble in large crowds/classes, people with accents, or people who mumble all the time. My dB loss was measured at 120 dB at my first diagnosis and still remains the same to this day.

I would say almost 100% of hearing people were able to understand me after I explain to them that I am deaf. Usually people who arent USA born have trouble understanding me. Just the receptive part for me is harder.

If Richard's daughter is hearing at 90 dB, that's whole lot better than what I hear. I am not surprised that she is getting on with her hearing aid very well.
 
thank you charlotte i appretiate the info and will look forward to hearing of your experience with ci
i hope they work well for you and wish you all the luck

thank you. I reckon if your daughter is very happy as she is then leave as it is, if you do see/realise that she is struggling then it would be time to discuss. Doctors/professionals would say earlier the better but if your daughter is already has quite good speech/coping well then she'll be ok for few more years.

Also the operation isn't major as heart surgery but it does carry risks of course.
 
I wouldn't be asking for any advices or inputs on a important decision like this on a internet board.


thank you i wanted to speak to real people with simmilar backrounds rather than her from professionals all the time cause i dont want her to be forced into it and be used as a gunie pig for some wannabe doctor to practice on but i needed to hear both sides from people who have the experience to tell me now what they might of changed at her age if they knew what they knew now
thanks again


What I am saying is that there should be people with similar backgrounds locally and your professional should be able to contact them for you and ask them or direct you in the right direction to meet them.


.
 
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.

Ok, understood. Obviously I thought the "profoundness" was out of reach of HAs...my mistake, apparently. Thanks
 
Ok, understood. Obviously I thought the "profoundness" was out of reach of HAs...my mistake, apparently. Thanks


NP - Even when I had 105 db loss (left ear) during CI evaluation, the hearing aid still did help, just not as much. My friend hears "better" than I can, but she has no comprehension or sentence discrimination skills. That's where education and speech training comes down to.
 
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)

Drew doesn't stand out... :(
 
NP - Even when I had 105 db loss (left ear) during CI evaluation, the hearing aid still did help, just not as much. My friend hears "better" than I can, but she has no comprehension or sentence discrimination skills. That's where education and speech training comes down to.

Perfect Agreed, everything is so individualized, what is something for one isn't for the very next person. That's why take everyones opinion for advice, then experts opinion, then it is up to your own decision.
 
Well, it's all going to be up to you. To me, it's "the earlier, the better your brain adapts." That one is easy. The main concern is, are you willing to spend the recommended amount of time an AVT therapist tells you to practice at home? Getting the implant is 10% of the work. Your work with your daughter at home is 80% of the work.

For me, I would have wanted for my parent to decide to put a CI on me because I do know it's more work now than when you're older and busy. Hearing aids were good for me, but I couldn't hear the high frequency sounds. I yearned to hear the high frequency sounds and other sounds.

If you want to postpone it, then may I suggest that you put emphasis in practicing with her speech and hearing with her hearing aids until a CI is decided? That might help her.

As for the sign language. Well, at some point, I think you'll have to schedule some time for just verbal conversations, so that your daughter know what it's like to hear conversations without sign language. If your goal for her is to converse with others who don't use sign language, then I would believe that scheduling time without sign language would be ideal.

I know that it helped me a lot to not rely on my interpreter when I had my cochlear implant and listen to my professors. For me it's like going from a tricycle to a bicycle without training wheels.

It's true that your daughter will likely continue to improve on her speech with her hearing aids.
 
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.

I agree with you..sign language is very important too.
 
Hi Richard,

I have a 5 year old daughter too! :) Cute aren't they?

I'm just wondering if you have spoken to her at all about your considerations? Although she may not fully appreciate the risks and benefits of surgery, she may have some of her own feelings on the matter. I assume that she has come across others of her age with CIs?

I think you should also go to the NDCS website and join their forum, Parentsplace. There are lots of parents there, not all of them have decided to go with the CI but many seem to be positive about persisting with signing, including the ones who have got their children implanted. It's handy to get a variety of opinions from those who have been at the same decision making threshold as yourself!

I used to have difficulty telling the CH and SH apart with my hearing aids as well. But I was told that my speech has always been clear so it wasn't a problem. If people are understanding your daughter okay then there is no reason why the decision can't be deferred until adulthood. I'm personally with Clearsky, I wouldn't have had any beef with my parents implanting me as a child but some people take the ethics of adult choice very seriously, even if there are downsides involved. This is a matter for the parent to decide.
 
Wow..............I thought that it was really hard for people in other countries to get CI, if they benifited a lot from HA.
 
Back
Top