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Joining the hearing loss club...


Forum: Gifted and Talented Children

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  #1  
December 17th, 2012, 11:48 AM
BensMom's Avatar Ephesians 4:29
Join Date: Apr 2005
Location: The Lonestar State
Posts: 50,214
Found out this morning that Daniel has otosclerosis. He has about 30% hearing loss right now in both ears. The bones of his ears don't vibrate like they should, and as he ages, the bones (like all bones) will stiffen. Left untreated, he'll be completely deaf by his teens or early 20's. At some point, he'll get hearing aids, and then when that stops working, he'll have surgery to remove those bones and put in prosthethic ones. At least it's treatable, though, right?
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  #2  
December 17th, 2012, 02:54 PM
Butter's Avatar Heather the Mama Duk
Join Date: Oct 2005
Location: San Antonio TX
Posts: 28,853
I'm sorry.
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  #3  
December 17th, 2012, 03:22 PM
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Join Date: Sep 2005
Posts: 9,306
I'm so sorry.
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  #4  
December 17th, 2012, 08:48 PM
shari626's Avatar Platinum Supermommy
Join Date: Jan 2008
Location: Delaware
Posts: 5,679
I am sorry Crystal. At least it is treatable. You know that I totally understand hearing loss. Shane has 100% loss in his ear. He will adapt and you all will know what he needs. Just take one day at a time
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  #5  
December 18th, 2012, 05:30 AM
BensMom's Avatar Ephesians 4:29
Join Date: Apr 2005
Location: The Lonestar State
Posts: 50,214
When I heard, I immediately thought of you, because I also had no idea he was losing his hearing. He seems fine. I thought he failed the screening because he was kinda screwing around at the well-check that day. He knew the shot part was next in the visit. Other than being loud, he seems totally normal. Does Shane talk louder than your other kids?
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  #6  
December 24th, 2012, 04:53 AM
shari626's Avatar Platinum Supermommy
Join Date: Jan 2008
Location: Delaware
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Shane does talk louder. And he says "what?" A. LOT. That was my first clue. Now that I know, I see signs and can see how he compensated all this time. Subtle things like turning his good ear to hear, he can't hear anything with loud background noise (think my house all the time), and why he can never find me when I say "I'm in here" (no way to distinguish where the sound is coming from). Poor thing. It does make you feel bad that you didn't really notice sooner, doesn't it? But I just remind myself that kids are really good at compensating so that we never noticed. KWIM?
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  #7  
January 3rd, 2013, 08:31 AM
BensMom's Avatar Ephesians 4:29
Join Date: Apr 2005
Location: The Lonestar State
Posts: 50,214
I've paid close attention since I learned about all this, and YES! Daniel has definitely been compensating! I totally see it now! I want to say I should've known something was up, but I really didn't, and now I know I still wouldn't have noticed. I thought he was just ignoring me when I called him or "playing dumb" when I asked him a question, ya' know?
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  #8  
January 3rd, 2013, 03:55 PM
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Join Date: Oct 2012
Posts: 202
Welcome to the club ~ though I am sorry to hear y'all will have to be going through this. Two of my children and I are all hearing impaired and wear hearing aids. I'll eventually go deaf - which is why we're all learning sign language now instead of later (I've decided against cochlear implants for myself for several reasons). I even have closed captioning for the classroom in my college classes. More than likely the children will also develop along the same road I did/am - but maybe not. After all I was diagnosed in my 20's and the children were diagnosed at 4 and 6 when it was quite clear the 4 year old could not hear. The 6 year old threw all of us, even the audiologist, for a loop. She simply coped well and found ways to compensate - still does, as she refuses to wear her hearing aids outside of the classroom now that she is a teenager - never mind that her hearing aids are tiny and can't be seen :-/

I also have no directional hearing. The children do. It's rough trying to figure out where something is coming from. So I completely relate to and understand what Shane is going through.

I'm sure Ben will do just fine through it all. Each person seems to just move right along their own little road when it comes to their hearing loss - it seems to be the people around us that have a harder time adjusting. Just breathe mama, it'll all be alright
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Last edited by 8forus; January 3rd, 2013 at 03:57 PM.
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  #9  
January 3rd, 2013, 11:36 PM
HS&Fsmom's Avatar Mega Super Mommy
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Sorry to hear it.
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  #10  
January 6th, 2013, 07:21 AM
shari626's Avatar Platinum Supermommy
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Location: Delaware
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8forus - thanks for your insight. I find with Shane's hearing loss in only one ear, people do not understand how hard it is for him. Last year the teacher thought he was never paying attention because he had his head turned for his good ear to be toward the teacher. Even though she knew about his hearing loss, people overlook what he needs to do to hear. He isn't isn't his best advocate about it yet, but I am working on that with him. He now has a 504 in place for all school situations. Most all the school teachers wear a REDCAT voice amplifier when speaking to the class. The district requires all teachers to wear them, and it's very beneficial to Shane. He thought they wore them because of him. LOL He has a hard time in the cafeteria, at recess, and in the gym.

He has started playing basketball and the coach still yells things to him from the side even though he can't hear him. I can't seem to make the coach understand.

I think it's hard when there is a disability that you can't physically see. That's why I think Shane needs to be more vocal about saying "I can't hear you because my ear doesn't work, remember???" LOL
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  #11  
March 14th, 2013, 09:59 AM
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Absolutely he needs to be an advocate! I had my kids on IEPs before moving to 504s in order for there to be more learing among the teachers and my kids as well. They are now very vocal advocates for themselves.

Coaches can be very difficult to work with and honestly some finally learn while others simply never learn to deal with it. Does Shane have preferential seating in his 504? If so, then he needs to make sure he sits in a place which he can "face" the teacher while keeping his good ear toward her/him as well. Like me, I always sit on the left hand side of the room so that I turn my head to the right to hear better. My children are also allowed to move if the air conditioner comes on, or close the door if the hallway is too loud, etc.

The cafeteria, the gym, and recess are the worst. Most of the time they just choose to take their hearing aids out because it's easier to deal with the noise without them even though their hearing aids have a setting for loud noises. BUT that setting makes it where they can't hear the people beside or behind them - only in front of them - hence why they just take out their aids.

Another thing I do is when the kids tell me of an incident I immediately email the "offending" person to explain their hearing loss and how to deal with it the next time they encounter my child/ren or myself. Most of the time the children take care of it themselves though so I don't have to do that often except for people who don't listen to them. But yes, it's a disability you can't see therefore unless you are profoundly deaf and speak with a "deaf accent" then people have a difficult time adjusting to it.
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N (10-29-95); S (10-13-98); Le (10-28-00); C (3-7-03)




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