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ASLMommax2

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RSLH ( Reverse Slope Hearing Loss) has become the biggest pain in the ass for me, NO info to be found. I have only one question for people with this loss - Are hearing aids beneficial and are they enjoyable? With Sadies Severe/Profound Loss I have no expectation of her getting any enjoyable use out of them but out Audi still feels they should be pushed. I say screw it and allow her to be who she is, shes not yet 3yo and isn't able to tell us if they help or not ( I could care less either way ) but..........

(If I could figure out how to post her Audiogram I would but my ding dong head isn't figuring it out - so I have poosted it under my profile) :giggle:
 
The question shouldn't be are Hearing aids"enjoyable" but are they "useful" to the condition you detail?
Good luck in the immediate future at a solution.

Implanted Sunnybrook Advanced Bionics-Harmony activated Aug/07
 
My question was "Are the Hearing Aids Beneficial and are they enjoyable?" ANd thanks for the luck
 
yes its enjoyable if we can benefit from it. I wore hearing aid for 20 yrs until I can no longer benefit from it.

May 24th 2006 implanted date/Freedom
 
Have you trialed hearing aids yet? I think it is worth it to trial the aids, and see how she responds to them. Response to hearing aids/CIs is very indivdual. Ask her how she likes them. Be child centered....definitly offer the option of HAs, but if she says she's not getting a lot of benifit or doesn't find them helpful you can drop them.
I have a reverse slope loss, although have a hoh (moderately severe loss)
I love my hearing aids. I have worn them since I was three...but then again every kid is different. But definitly try them!
 
Offered the HA's to her again this morning......and the sounds she was hearing were amplified to the point thast she ripped them from her ears! ( the sound of the TV - vaccuum - even Daddys voice she couldn't handle with HA's on) We've been renting the HA's for 6 months now, and she has maybe worn them on and off for a total of 2 weeks - 10 minutes here- 10 minutes theere. Appt. tomorrow hopefully we can this straightened out! HOPEFULLY!
 
When I was little I used to rip them out. I even flushed them down the toilet. Now that I am older I have gotten used to them and I love them. The noise is overwhelming at first because she is not used to it so everything seems extremely loud to what she is used to.

I wear mine everyday. :)
 
Try keeping the volume turned WAY down on them, to level 1 or whatever the lowest setting is. DON'T run the vaccum cleaner or dishwasher or other things that make a lot of meaningless noise when she puts them in. Have Daddy speak quietly to her, maybe read her a story to keep her attention.

Slow and gentle might help her "ramp up" more easily.
 
Is the audi at TLC familiar with severe/profound reverse slope hearing loss? Maybe a possibilty might be to go and see an audi at Children's or even Mass Eye and Ear, since they are experianced with unusual hearing situtions, and may be able to give you some advice. The docs in Boston tend to be really good for obscure medical conditions (says the kid with abt ten million weird issues)
I am a bit confused with how she is fluent in ASL, but can't describe the sound? Have you asked her if she likes them in ASL? Babyblue good point....the sound can be overwhelming at first, if you're just used to silence....and I gotta say, I do love being able to have downtime without my aids.
 
Try putting on some music or something. She may wind up liking it.

Or how about one of those nice toys for toddlers that make pleasant sounds?
 
Hey DeafDyke, her Audis are actually w/in ChildrensBoston. Had our appt. today and the "good" ear has actually fallen 20db to the Severe range right along with the left ear . Unfortunately our HA's are only loaners and don't have a volume setting, so again the noise level and its discomfort should have been corrected by the Audi. After todays appt. we will absoluutely with no doubt be switching her Audi to someone else, this one just doesn't have a clue and is just as confused as we are.
 
And BabyBlue, I would not suggest the Reverse Slope Hearing Loss Forum w/in Facebook. I just had Dan Schwartz tell me how bad of a mother I am for allowing my 3 year to live her life as a Deaf individual and that I was doing both my children a disservice by listening to the ASLDeafies as he referred to everyone. Just saying, the "gentleman" is a joke and anything but an advocate for any information but his own!
 
After todays appt. we will absoluutely with no doubt be switching her Audi to someone else, this one just doesn't have a clue and is just as confused as we are.
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Maybe you might be able to get a referral to Mass. Eye and Ear and see if there might be anyone who might be super experianced with aiding severe/profound reverse slope losses.
I just suggest MEEI, b/c they are super good with unusual situtions. That way you can feel like you investigated all possible aiding opperutunies.
I totally see both sides of this. On one hand, you DO want to see if this might help her, and it would be a good idea to make sure you're not missing a good specialist, who might be able to help Sadie with being aided. After all, the more tools in the toolbox the better right? Some more hearing would make understanding hearing people one on one a bit easier right?
I'm a bit confused as to why you think that a severe-profound loss is unaidable....IANA (I Am Not An Audi) but there are stil some severe/profounders who respond well to aiding.
I just had Dan Schwartz tell me how bad of a mother I am for allowing my 3 year to live her life as a Deaf individual and that I was doing both my children a disservice by listening to the ASLDeafies
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Pay him NO MIND. He's one of those dumbasses who think that you can't raise a dhh kid blingally with both speech and ASL.
 
ASLMommax2 said:
Hey DeafDyke, her Audis are actually w/in ChildrensBoston. Had our appt. today and the "good" ear has actually fallen 20db to the Severe range right along with the left ear . Unfortunately our HA's are only loaners and don't have a volume setting, so again the noise level and its discomfort should have been corrected by the Audi. After todays appt. we will absoluutely with no doubt be switching her Audi to someone else, this one just doesn't have a clue and is just as confused as we are.
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Ahh, that's too bad -- every one of the audis I've had at Children's Hospital Boston has been fantastic. Two we've had in the past have had hearing loss themselves, so they've known firsthand what's going on with the aids we trialed. And Children's has -- as you probably know, a very tight relationship with your daughter's school -- they'll work closely with staff there to keep some continuity going in terms of getting feedback and making adjustments to real-life needs vs. the sound booth.

MA Eye and Ear also has brilliant surgical teams, but I've heard from several families who shifted from a bilingual to an oral-only academic environments that at least 2 of their Mass Eye & Ear ENTs were adamant about the need to focus on listening and speaking in follow-up and didn't fully support or understand why a family would place their child in an environment where he or she wasn't being fully immersed in spoken language. Very different from the support and encouragement I've gotten at Children's to take a bilingual route.

BabyBlue's link about RSHL (The Bizarre World...) is one I've seen touted as a great resource.
 
My oldest daughers Audi. (Marilyn Neault) is actually jumping in to figure this out , we have worked with her for 13 years now and have the upmost respect in her abilities. She is actually going to test for "Cochlear Dead Zones" due to sadie getting no useful benefit from herAids. During our appt. her Audi did a word recognition test in the soundproof room with a score of 20% WITH HA's- and a score of 40% WITH NO HA's, so obviously there is something more holding back the benefit of the Aids. We still speak with her at home, but even the speech she has had all along is starting to falter......and the screaming, HOLY MOLY. she has been having in order to hear herself Holy crap!!! :)

What ever direction any of this takes I know shes going to be fine, just wish it wasn't such a guessing game in which no answers are to found.

Thank God for this site, because w/o peoples in put when a question is asked, I'de be lost. So thank you everyone!
 
MA Eye and Ear also has brilliant surgical teams, but I've heard from several families who shifted from a bilingual to an oral-only academic environments that at least 2 of their Mass Eye & Ear ENTs were adamant about the need to focus on listening and speaking in follow-up and didn't fully support or understand why a family would place their child in an environment where he or she wasn't being fully immersed in spoken language.
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That doesn't surprise me....Arughhh.....so old fashioned. I think it's possible that MEEI may still think that doing ASL means TC. In other words, they are unaware that you can raise a kid fully bilingally with both speech and sign. Maybe someone needs to go over and inform them of that. I think I heard one of the ENTs who was very pro oral only at the hearing aid coverage hearing...Damn, I wanted to stand up and throttle him.
But the reason I suggested MEEI is that they might be really experianced with really obscure conditions. I had my atresia repair surgery there as a teen....and that's a pretty unusual condition.
 
During our appt. her Audi did a word recognition test in the soundproof room with a score of 20% WITH HA's- and a score of 40% WITH NO HA's, so obviously there is something more holding back the benefit of the Aids. We still speak with her at home, but even the speech she has had all along is starting to falter......and the screaming, HOLY MOLY. she has been having in order to hear herself Holy crap!!!

What ever direction any of this takes I know shes going to be fine, just wish it wasn't such a guessing game in which no answers are to found
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. At least your audi is trying to find some answers!!!!
So there's some speech? That's good at least......I assume she's got spoken language issues, as virtually ALL dhh toddlers do. Even a lot of just hoh toddlers have spoken language issues. It's just that they're not as severely delayed as they used to be. Like back in the old days, it wasn't that unusual for a Clarke kid to arrive at the school (at five years old) with something like 50 words, or even five or ten words....its a lot better now, but they still have issues.
I hope you find some answers soon! Good luck...and try to investigate every option!!!!
 
my son has worn hearing aids since he was 3 months old he is now almost 19 I asked him that question he like them because he can hear with them and when he doesn't want to he turn them off. when he was little he would turn them off or hide them so he didn't have to hear all the noise. i let him where them when he wanted to he uses both sign and speech.
 
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