For parents of children with aids/CI...help!

Hi everyone!

My name is Alice, and I am currently studying aural rehabilitation at Utah State University. This week I'm writing a paper documenting the experiences of people who wear hearing aids and cochlear implants (pros and cons of certain devices, etc.). I am also trying to interview parents of children who use these devices.

I would love to get some perspective on this from anyone who has just a few minutes to answer some simple questions. Not only would it help me immensely for my assignment (seriously, I would be forever grateful!), but like with most things in life, understanding something through someone's firsthand insight is so much more valuable than trying to learn about it by reading a textbook!

If your child uses hearing aids or CI and you want to help an eager student in the next few days, please email me at alicemw8 (at) comcast (dot) net. I'll send you a few questions to answer-- it's that easy!

Thank you ALL and hope to talk to some of you very soon!

Alice

Is your program against ASL?

It might be REALLY cool/innovative to mention that yes amplification and oral abilty can be useful, but it's also very useful to add other methodolgies...If kids ARE indeed doing "well enough" to be oral,and don't need to spend years learning to speak,then they can learn ASL too.....Audis need to stop hyperfocusing so much on a speech exlcusive approach.....and look at speech/listening skills as a part of a LARGER puzzle.....Dhh kids CAN be bilingal,and develop BOTH speech and Sign skills/abilties.......

shel90 said:

Is your program against ASL?

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I am thinking the same thing. I hope that OP included ASL that ASL helps for kids to pick up how to speak and listen better. ASL rocks.

shel90 said:

Is your program against ASL?

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I'd be curious, too. I know some speech path classes are FREAKY speech/amplification oriented (at my college, Deaf Ed majors and some speech paths had to take a speech for the deaf class... one I didn't want to *utterly* despise but ultimately did). Her posts don't make any mention of rejecting ASL, but they don't mention supporting it either.

shel90 said:

Is your program against ASL?

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No, of course not-- and I have a hard time believing that any accredited university program would be "against" ASL. It's just that this specific course spends a bit of time focusing on how amplification works, and we're encouraged to talk to people who actually use the devices in order to get some perspective. But does my program have a specific anti-ASL agenda? No, that would be disappointing, in my eyes; in fact, many of us have the option of taking ASL courses. But remember, a speech and hearing department's mission is to train future SLPs and AuDs, so they focus on issues relevant to those career fields first. It doesn't mean that non-hearing interests aren't just as important, legitimate, and worthy of respect and consideration.

Thanks for your responses everyone!

shel90 said:

Is your program against ASL?

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Frisky Feline said:

I am thinking the same thing. I hope that OP included ASL that ASL helps for kids to pick up how to speak and listen better. ASL rocks.

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Agreed– ASL does rock. If writing about it was within the scope of my assignment, I would have loved to! However, this course focuses on assistive listening devices from a technological and lifestyle standpoint, and as a student, staying relevant to that topic is crucial. The scope is much more narrow than the complex set of ethics and values associated with speaking vs amplification vs ASL vs a combination. I would never want to assume I know what's best for a specific child and/or family– that's a personal decision and I respect it as such wholeheartedly.

Thank you for your post!

alicemw8 said:

No, of course not-- and I have a hard time believing that any accredited university program would be "against" ASL.

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Many are - although most of the time it's not explicit.

Keep in mind that many of us have witnessed it first hand, which is why we asked.

HAs certainly help me hear noise, but without a doubt there's no way that HAs alone would have made my university classes accessible to me (I tried, utter fail).
It was ASL (and my interpreter teams) and CART which allowed me to fully participate in classes.

Anij said:

Many are - although most of the time it's not explicit.

Keep in mind that many of us have witnessed it first hand, which is why we asked.

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You know, as I look back on my post I realize that I need to apologize for saying that– I need to check my own privilege as a hearing individual. I may not see incidences that are critical of ASL as easily in my program because I am, regretfully, not always aware if and when it occurs. That's something I hope to develop better awareness of as I continue in this field.

Thanks for your perspective on HAs...and the reality check. I appreciate it.

One of the things that I WISH audis and other people who serve dhh kids understood, and promoted to parents is that hearing with devices is not like nautral hearing.....It's still a weakness.Yeah, not a lot of kids have Deaf Like Me or Mr Holland's Opus style severe speech delays.....BUT, our brains still have a lot of trouble processing it as sound...we still have to use more energy to interpret what that sound is, or what someone is saying....Exactly like the way hearing people might be able to understand a foriegn language, but it still takes a lot of energy to understand/interpret it.

I would also love to get rid of the assumption that residual hearing makes a dhh kid more hearing then deaf......At BEST it makes them HOH......Very few people with hearing loss (including postlingal and late deafened) people function like hearing people......How many hearing people do you know who use closed captioned, ALDS etc etc etc? Pretty much ZERO......So dhh kids are NOT hearing, and shouldn't be expected to function like they're hearing....they deserve a full toolbox.......If we decided to exclusively focus on someone's defiect on math, and ignore their strenghs in English, we'd be looked at like we were crazy....yet there's an entire industry devoted to telling parents they should just raise their dhh kids "like hearing" kids.

I would imagine that it's frustrating. It sheds an entirely different light on the fact that amplification technology has very real limitations. And I absolutely agree with you– these children need and deserve all tools and accommodations available, especially in the educational setting. As a future clinician, I think it would be completely unethical to attempt to coerce a parent into raising their dhh child in the hearing world, or in a mainstream classroom (though I can only imagine it happens a lot). A parent knows what's best for his or her child. Period.

Thanks for sharing your point about the difference between hearing through a device and natural hearing. Am I understanding correctly that you wish that AuDs and other professionals respected this difference more? Clinicians do need to realize that they're comparing the body's auditory system, which converts sound waves into THREE different types of energy before reaching the brain, with a tiny electronic device that's supposed to synthesize all of the same sounds. A bit insane, no?

I don't think it's necessarily bad having a dhh child in a mainstream classroom. I was mainstreamed without any additional help beyond hearing aids. THAT was not ideal, I should have been taught ASL and I should have been made to go to the high school that was set up for people with speech and hearing problems. But even that HS was mainstreamed, the students were in classes with the hearing and they had interpreters. I did insist on using the speech therapist that I had access to in HS (every HS and public jr high in the county at that time had speech therapists) to keep up my speech skills. The mistake that every adult made was that because my grades were good, it means I didn't need supplemental help and hearing aids were enough. When I was in college I learned ASL on my own with a group of people who were learning it from an HOH grad student and an almost-priest who learned it from Gally, and within 2 years I had become fluent enough to use interpreters in class. My life suddenly became so much easier and there was a huge weight lifted off my shoulders. My stress levels went down enormously.

If you haven't started taking ASL yet, I would definitely start. I really feel that audiologists and speech pathologists who don't learn are really doing a huge disservice to their clients who do use it, and it's really disrespectful to go into a field where you're going to be working with dhh and not learn their own language. It's like moving to China, and teaching students in a physics class, but you're speaking English and they only speak Chinese. Disrespectful to assume they can understand you and what you're trying to accomplish with them because you don't speak their language.

alicemw8 said:

I would imagine that it's frustrating. It sheds an entirely different light on the fact that amplification technology has very real limitations. And I absolutely agree with you– these children need and deserve all tools and accommodations available, especially in the educational setting. As a future clinician, I think it would be completely unethical to attempt to coerce a parent into raising their dhh child in the hearing world, or in a mainstream classroom (though I can only imagine it happens a lot). A parent knows what's best for his or her child. Period.

Thanks for sharing your point about the difference between hearing through a device and natural hearing. Am I understanding correctly that you wish that AuDs and other professionals respected this difference more? Clinicians do need to realize that they're comparing the body's auditory system, which converts sound waves into THREE different types of energy before reaching the brain, with a tiny electronic device that's supposed to synthesize all of the same sounds. A bit insane, no?

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We've had a few parents say that when they bring up ASL they're told "oh they don't need it."
It would be AMAZING if maybe there was a mini revolution with audis etc being more open to ASL being used.....and there ARE ASL users who use HAs/CIs etc............

deafdyke said:

We've had a few parents say that when they bring up ASL they're told "oh they don't need it."
It would be AMAZING if maybe there was a mini revolution with audis etc being more open to ASL being used.....and there ARE ASL users who use HAs/CIs etc............

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Couldn't agree more. Sign me up for the revolution! Some programs require at least a basic command of ASL, while others do not. Sometimes it depends on the emphasis of the program and which disorders they want to target. But I honestly can't wait to learn when I take my first course this summer. Gotta find myself some signing practice buddies

I think that I personally would feel like a fraud if I couldn't be bothered to learn at least a little for the sake of my dhh clients, when the opportunity to learn it was right in front of me the whole time. I wonder why someone in my field wouldn't try to learn...laziness? Weird superiority complex? If I get a "compelling" answer from any of my peers who don't plan on studying the language and/or culture, I'll report back. We can roll our eyes together

alicemw8 said:

I would imagine that it's frustrating. It sheds an entirely different light on the fact that amplification technology has very real limitations. And I absolutely agree with you– these children need and deserve all tools and accommodations available, especially in the educational setting. As a future clinician, I think it would be completely unethical to attempt to coerce a parent into raising their dhh child in the hearing world, or in a mainstream classroom (though I can only imagine it happens a lot). A parent knows what's best for his or her child. Period.

Thanks for sharing your point about the difference between hearing through a device and natural hearing. Am I understanding correctly that you wish that AuDs and other professionals respected this difference more? Clinicians do need to realize that they're comparing the body's auditory system, which converts sound waves into THREE different types of energy before reaching the brain, with a tiny electronic device that's supposed to synthesize all of the same sounds. A bit insane, no?

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The bold statement - That is not true as most hearing parents refused to listen to our needs and not to accept us being deaf or hard of hearing. The devices like hearing aids and CI devices are not miracles. We had to suffered what hearing parents and the authorities like mainstream schools along AGBell Foundation trying to make us hear and listen which we failed at it. Some Hard Of Hearing managed to do it but others are not successful. Hearing parents don't seem to love us being the way we are at all. They would rather have us speak and lipread (not one hundred percent accurate) and for CI to listen the words which is impossible. That is why we don't approve of having them push and tried to make us be like the hearing people. They can not change us for what they want us to become like them. We are sick of being push for so many years. We want to be left alone the way we are. For me, I would rather have ASL over speech better than have to struggle trying to please the hearing parents.

Wirelessly posted (Blackberry Bold )

I have to agree with Bebonang - my parent had no intention (or knowledge) to do what was best for me as a Hoh/Deaf child. They wanted what was easiest for them, made me 'hearing' and did whatever a doctors told them (even if I told them it wasn't working, even if I wanted something different).

At no time did my parent talk to people who could have actually have helped - other Hoh,deaf and Deaf people.

It was never about what was best for me educationally or socially. It was (for them & Drs) about how best to pretend I was "hearing". (And blame me for not "trying hard enough" if I couldn't be "hearing").

Anij said:

Wirelessly posted (Blackberry Bold )

I have to agree with Bebonang - my parent had no intention (or knowledge) to do what was best for me as a Hoh/Deaf child. They wanted what was easiest for them, made me 'hearing' and did whatever a doctors told them (even if I told them it wasn't working, even if I wanted something different).

At no time did my parent talk to people who could have actually have helped - other Hoh,deaf and Deaf people.

It was never about what was best for me educationally or socially. It was (for them & Drs) about how best to pretend I was "hearing". (And blame me for not "trying hard enough" if I couldn't be "hearing").

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Where is the LOVE button? Hearing parents can be well meaning.....but a LOT of them are still so caught up in the grief of having a kid who is VERY different,that they'll chose oralism so that they don't have to let go of the illusion that their kid can "fake it being "normal"

I still "fake it" why can't I stop nodding yes even when I have no idea what is said?