Anyone with 1 CI and 1 Ha?

yeah besides I have a friend of mine who's rocking her harmony and neptune which saved her residual hearing :) (she's pretty thankful for AB)
 
With her hearing aids on she hears bits and pieces, but is unable to grasp the bigger picture on the sounds alone. I don't mind learning ASL for her and I will continue to learn and teach her ASL no matter how well she can hear with a device, because she is Deaf and nothing is going to change that. My concern here was that hearing completely differently out of two ears would be confusing and hard to understand, but clearly I was mistaken. It makes sense now that she would hear "normally" with the HA in one ear while gaining access to the high frequencies with her CI on the other
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Just to clarify, I'm 100% for bimodal. In fact in some cases I think bilateral CI can be a good thing, but I do think that hearing parents and audis have to remember that everyone responds differently to aiding. I just think that there's a bit too much hype about the benefits of bilateral implants.
Here's my thinking..........her ear is not "dead"" She would still be getting some input from the unimplanted ear, as well as along with the input from the implanted ear. That is a different case from when hearing aids do not help at ALL. Monitor and see how well she does with bimodal. If she has low speech perception with CI or other issues (ie recruitment) she can get a second CI a bit later......You did say that her audi thinks that she will benefit bimodally right? I think bimodal will be the way to go......a lot of kids can still get quite a bit of speech perception with a CI/HA combo.
 
Ooh okay! I have already decided that I would love to give bimodal a go after reading the lovely responses here and doing some more research of my own. My initial concern would be that she would only be 'hearing' with one ear and the other just getting random sounds with - I didn't understand that they could work together to give even more input and a bigger picture. I'm honestly thrilled about the idea of maybe being able to keep one HA and only having to do one CI now that I understand it better.

I still think maybe my daughter's hearing loss is progressive, so maybe we'll still end up with 2 CIs eventually, but that will just have to be a bridge we cross when we get there. We just got a call saying her MRI showed her cochlea and nerve were in good shape, but something about fluid and mastoid something or another - but that our ENT wasn't convinced the report was accurate. No idea what to think of that, but I'm sure we'll figure it all out soon.

Sorry for the confusion, I thought you were saying if she gets any sounds at all from her HAs that I shouldn't let them giver her an implant - not that I shouldn't let them give her bilateral implants lol. I understand what you are saying now and fully agree!
 
cdmeggers said:
that's not the case for everyone. Some hear normally right off the bat as soon as their CI has been activated, for others it sounds funny like robots/electronic, donald duck/daffy duck (or mickey mouse or a chipmunk) like, etc; but it gets better over time and starts sounding more "normal". It's going to be a different experience for everyone; they're going to have different results at activation, and different hearing experiences as they learn to hear and make sense of sounds with the CI.
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Yes your brain does get used to it but it will never be like normal hearing as its electronic hearing. When I met with the CI surgeon, that's what he said to me. I've had all the assessments and I'm allowed a CI but I've decided against it as my right would have to be implanted so I would always had a dead ear and a better ear that would highly likely get the same speech scores as I do with my hearing aids.
 
Some people say it sounds normal for them, as like it always has sounded for them before going deaf. Generally those are the ones who have lost their hearing later on in life instead of being deaf most/all of their life but yeah.
 
cdmeggers said:
that's not the case for everyone. Some hear normally right off the bat as soon as their CI has been activated, for others it sounds funny like robots/electronic, donald duck/daffy duck (or mickey mouse or a chipmunk) like, etc; but it gets better over time and starts sounding more "normal". It's going to be a different experience for everyone; they're going to have different results at activation, and different hearing experiences as they learn to hear and make sense of sounds with the CI.
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yeah, I know some people that say it sounded normal right off the bat, but many more who say it was very electronic.
For me, its just a bunch of beeps and feeling of sound on the left side. On my right side though, its beginning to try to leave the electronic sounding world...

I think if a CI and HA work well for her, (especially with ASL!) then let her be. You are making the choice for her to get a CI, maybe wait and let her make the choice if she wants a second.
 
We are actively learning ASL as a family and plan to do so no matter how well she is able to hear :)
 
I think if a CI and HA work well for her, (especially with ASL!) then let her be. You are making the choice for her to get a CI, maybe wait and let her make the choice if she wants a second.
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Exactly!!!!!!
The choice for a second isn't as major, and there's still significant residual hearing in the unimplanted ear......I do think that kids who are ambigious canidates for bilateral CIs should get the first one, and then have it be their choice if they want a second one.
 
AshJagla said:
We are actively learning ASL as a family and plan to do so no matter how well she is able to hear :)
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and that's awesome! Are you guys hooked up with ISD and the other dhh schools and programs? What about Deaf mentors and all? The more tools she has, the better she'll do!
 
We work with Sarah from ISD as part of their outreach program, we get speech therapy from St Louis Children's Hospital, more speech therapy from Child and Family Connections/Early Intervention, I recently have gotten in touch with Illinois Hands & Voices as well as Illinois Guide By Your Side, and I am also working with the Division of Specialized Care for Children. I am trying to maximize the resources available to me, but I am always looking for more. Right now I just really want Zoe to be able to meet and have a chance to play with other children that have hearing loss as well, I keep giving my information out to be connected with other families but it isn't going anywhere *sigh*
 
Oh and I'm keeping an eye out for more ASL or Communication seminars from StarNet, I recently went to Sign Language for Beginners in Belleville, IL and loved it :D
 
Sounds like you're getting really good outreach.......AND if you're getting speech outreach from St. Louis Children's, no wonder you're getting the attitude " Oh they don't need Sign" St. Louis is sadly very audist due to having three oral private schools. And when I mean audist, I mean AUDIST. Like auditory-verbal "they don't need Sign" audist vs. " they can take some time to improve their spoken language" and then learn Sign as a second language.......
 
I do want to add that I think that you're going to be ahead of the game by pursuing ASL. Yes, there aren't a lot of dhh kids who have profound/ severe 1960's style spoken language delays. BUT, the spoken language delays are still there. It's just that they're not as severe as they were in the old days.
I mean there are still many kids in public ORAL programs. Meaning they're doing better and public schools can handle them better, BUT they still have educationally significant delays.
I think a lot of those kids will pick up ASL. Even kids who went to the oral boarding schools picked up ASL as a second language.
 
I just really believe if we are going to put her through speech therapy in hopes of her understanding spoken language that we owe it to her to meet her half way by learning and using ASL daily along with speech. If it turns out she has a preference than we will make sure to lean that way be it sign or spoken because the most important thing is that she has language and is being educated properly. I feel the same as you, like those children who are not exposed to ASL and have difficulty learning out to be oral will eventually find signing and it will be life changing for them.

As for St Louis, I was honestly surprised that NO ONE at St Louis Children's Hospital tried to discourage me from pursuing a total communications route for Zoe, they simply asked and then said okay! It is only my EI coordinator who is really pushing just oral only or rolling her eyes when I mention looking for ASL material. But she is so young and we live in a VERY rural area with very few HoH let alone Deaf children so I think she's just ignorant and only knows the CI 'hype' and not the reality of it, like it's a cure instead of a tool.

My other irritation at the moment are my husband's parents. When we first told them of Zoe's hearing loss they said there was no way. When we told them she was deaf they said they doubt it. When we asked them to learn a few basic signs they said she wouldn't need it. When I mentioned something about fluid and her mastoid that the dr thought was a misread of her MRI they said oh well she just has an ear infection. Now they think the CI is going to enable her to be a hearie and are still putting no effort into learning any signs - which is a probably because they sometimes babysit for us. All they know is eat and more, just last night MIL was wagging her finger at her for no, I'm like "Why don't you just sign no? She understands that better." And MIL couldn't remember it even though we show her every time we see her. I know she is older, but everyone else - old and young - are putting in at least some effort. I hate thinking she's going to grow up feeling alienated by them.
 
AshJagla said:
I just really believe if we are going to put her through speech therapy in hopes of her understanding spoken language that we owe it to her to meet her half way by learning and using ASL daily along with speech. If it turns out she has a preference than we will make sure to lean that way be it sign or spoken because the most important thing is that she has language and is being educated properly. I feel the same as you, like those children who are not exposed to ASL and have difficulty learning out to be oral will eventually find signing and it will be life changing for them.

As for St Louis, I was honestly surprised that NO ONE at St Louis Children's Hospital tried to discourage me from pursuing a total communications route for Zoe, they simply asked and then said okay! It is only my EI coordinator who is really pushing just oral only or rolling her eyes when I mention looking for ASL material. But she is so young and we live in a VERY rural area with very few HoH let alone Deaf children so I think she's just ignorant and only knows the CI 'hype' and not the reality of it, like it's a cure instead of a tool.

My other irritation at the moment are my husband's parents. When we first told them of Zoe's hearing loss they said there was no way. When we told them she was deaf they said they doubt it. When we asked them to learn a few basic signs they said she wouldn't need it. When I mentioned something about fluid and her mastoid that the dr thought was a misread of her MRI they said oh well she just has an ear infection. Now they think the CI is going to enable her to be a hearie and are still putting no effort into learning any signs - which is a probably because they sometimes babysit for us. All they know is eat and more, just last night MIL was wagging her finger at her for no, I'm like "Why don't you just sign no? She understands that better." And MIL couldn't remember it even though we show her every time we see her. I know she is older, but everyone else - old and young - are putting in at least some effort. I hate thinking she's going to grow up feeling alienated by them.
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With your in laws you and your husband are just going to have to put your foot down and say either you learn basic ASL signs for your granddaughter or you won't be babysitting her, plain and simple. I know it's harsh but if its what you both want as parents and its what is best for your daughter you need to get family involved.

I am just about to start private ASL lessons and then eventually go to Deaf events etc to practice and immerse myself but I also plan on teaching my boyfriend and mom signs as well because it's important to me that they also know some ASL to help me out.

Don't let anyone hold your daughter back. Especially family...it's a crappy feeling to know people are not helpful..it's worse to know your own family isn't helpful. So just re-iterate the fact that this is your plan and you are sticking to it and that if they don't they won't be apart of her growing up. They are "older" but simple ASL signs are not that hard to pick up.

sorry if that sounded at all mean! I just know how it feels to have your family be in denial ...
 
AshJagla said:
I just really believe if we are going to put her through speech therapy in hopes of her understanding spoken language that we owe it to her to meet her half way by learning and using ASL daily along with speech. If it turns out she has a preference than we will make sure to lean that way be it sign or spoken because the most important thing is that she has language and is being educated properly. I feel the same as you, like those children who are not exposed to ASL and have difficulty learning out to be oral will eventually find signing and it will be life changing for them.

As for St Louis, I was honestly surprised that NO ONE at St Louis Children's Hospital tried to discourage me from pursuing a total communications route for Zoe, they simply asked and then said okay! It is only my EI coordinator who is really pushing just oral only or rolling her eyes when I mention looking for ASL material. But she is so young and we live in a VERY rural area with very few HoH let alone Deaf children so I think she's just ignorant and only knows the CI 'hype' and not the reality of it, like it's a cure instead of a tool.

My other irritation at the moment are my husband's parents. When we first told them of Zoe's hearing loss they said there was no way. When we told them she was deaf they said they doubt it. When we asked them to learn a few basic signs they said she wouldn't need it. When I mentioned something about fluid and her mastoid that the dr thought was a misread of her MRI they said oh well she just has an ear infection. Now they think the CI is going to enable her to be a hearie and are still putting no effort into learning any signs - which is a probably because they sometimes babysit for us. All they know is eat and more, just last night MIL was wagging her finger at her for no, I'm like "Why don't you just sign no? She understands that better." And MIL couldn't remember it even though we show her every time we see her. I know she is older, but everyone else - old and young - are putting in at least some effort. I hate thinking she's going to grow up feeling alienated by them.
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Your husband parents sound so much like my whole family. None of my family will learn sign.

I do think you should put your foot down. Even a few signs could aid her Lipreading etc. :)
 
AshJagla said:
I just really believe if we are going to put her through speech therapy in hopes of her understanding spoken language that we owe it to her to meet her half way by learning and using ASL daily along with speech. If it turns out she has a preference than we will make sure to lean that way be it sign or spoken because the most important thing is that she has language and is being educated properly. I feel the same as you, like those children who are not exposed to ASL and have difficulty learning out to be oral will eventually find signing and it will be life changing for them.

As for St Louis, I was honestly surprised that NO ONE at St Louis Children's Hospital tried to discourage me from pursuing a total communications route for Zoe, they simply asked and then said okay! It is only my EI coordinator who is really pushing just oral only or rolling her eyes when I mention looking for ASL material. But she is so young and we live in a VERY rural area with very few HoH let alone Deaf children so I think she's just ignorant and only knows the CI 'hype' and not the reality of it, like it's a cure instead of a tool.

My other irritation at the moment are my husband's parents. When we first told them of Zoe's hearing loss they said there was no way. When we told them she was deaf they said they doubt it. When we asked them to learn a few basic signs they said she wouldn't need it. When I mentioned something about fluid and her mastoid that the dr thought was a misread of her MRI they said oh well she just has an ear infection. Now they think the CI is going to enable her to be a hearie and are still putting no effort into learning any signs - which is a probably because they sometimes babysit for us. All they know is eat and more, just last night MIL was wagging her finger at her for no, I'm like "Why don't you just sign no? She understands that better." And MIL couldn't remember it even though we show her every time we see her. I know she is older, but everyone else - old and young - are putting in at least some effort. I hate thinking she's going to grow up feeling alienated by them.
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For some reason I can't find the like button.........there should be a LOVE button on this!!!!!! You rock and you GET IT!!!!! I wish more parents in general got it....and I LOVE how you understand that although dhh kids can hear and speak, ASL can still be a VERY useful tool for them!!!! Socially,(b/c SO MANY oral successes say that they feel like they don't fit into the hearing world) emotionally,(feeling that being dhh is a POSITIVE good part of yourself) and builds on the fact that visual processing is a strength. Ever notice that the same kids who pick on dhh kids for having a weird voice are all "OMG ASL rocks and is SO cool?"
And wow.........you didn't get pushed towards oral only even with St. Louis? I do think that they're beginning to SLOWLY understand that maybe both is better. It's still pretty bad thou. And I think you should report your EI coordinator.........You're pursuing BOTH languages.....and yes I agree with you 100% She sounds either super naïve or has read too much AG BAD propaganda implying that oral only is enough. I dare you to ask her to try to learn a foreign spoken language with earplugs in. That's the reality for virtually ALL dhh kids......
 
Lol, love the song. I'm really starting to feel pretty great about it, like it's going to be such an experience raising a child who requires me to learn and grow so much more as a person. Not that my other daughter who is hearing doesn't do the same, but it's just in a much more typical kind of way :)

The hardest part is that this is all just so new to me, I only had 1 (HoH or Deaf?) kid in my school and I never even said hi. I didn't even think about it, now I find myself wondering what he was like and how fairly rural mainstream school was for him. Guess I'll never know because I can't even remember his name :(
 
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