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Old 11-05-2007, 11:08 PM   #21
debinoz
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I guess the amount of hearing loss would make a huge difference. I didn't think of that. If I remember right, she said her son had around 80% hearing loss in both ears.
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Old 11-06-2007, 08:59 AM   #22
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i've never had anyone tell me what owen's hearing loss is in %, so i guess i don't know how he compares to that.

i ended up calling the audiologist. we're going in on thursday. she's going to try to vent his ear pieces some more so he can hear better through them and possibly reshape them a bit so they don't bother him so much. then she said, if we can get them on whether they really work or not, if they don't bother him, at least they're on. she said with this model of hearing aid, they feed back a lot more with more venting in the ear piece, so we might end up putting them in but leaving them off so they don't whistle. with his new hearing aids, they're digital, and they aren't as sensative and don't feed back.
she said maybe the ear pieces are uncomfortable for him and that's why he doesn't want them in his ears. we'll see what happens.

i'm going to call the state and check on his hearing aids again. it's been a couple months.

i feel better knowing we have some things to try before physically wrestling them into his ears and constantly forcing them on him...
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Old 11-06-2007, 10:35 AM   #23
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Hi Meghan,

My ex boyfriend Jeff has congenital partial deafness. He doesn't wear hearing aids, and he was never taught sign language. He basically converses by a combination of reading lips and listening. I would say it's 80% lipreading and only a small portion actually hearing. If you are standing right next to him and say something, he doesn't respond unless you already had his attention. Some noises he can't hear at all, and some he seems to hear just like a regular person. He enjoys and listens to music, although I wonder what it sounds like to him. When we watched movies or TV, we put the captions on.

I often wondered why he didn't use hearing aids. He has a set that sit in a drawer, and I had never seen him wear them. I asked, and apparently, they could never get them adjusted so he was hearing the frequencies that he misses better, without the "other noises" being too loud. He can't filter out background noise at all. I think with him it was also somewhat a pride issue. I don't think he realizes that most people can tell he is hearing impaired (he would only ever say "hearing problem") just by the way he speaks. Although, some people thought he was foreign instead of partially deaf.

When we met it was a blind date, and he did not tell me beforehand that he was hearing impaired. It was obvious to me as he "sounds deaf," but one thing that really amazed me was how well he gets along in a hearing world. I think he had some help with notetakers in school, but he went to a mainstream school, and went to Pratt Institute in NY and is now an architect.

Just thought that might be interesting to you. I hope things work out with the hearing aids, but I guess the point (if there was one) was that it's amazing how much someone can adapt to the mainstream world even if they can't hear. I am sure you are doing the right thing with learning sign language and teaching that also, but in a hearing family I bet Owen will start to surprise you once he gets a little older, even if you can't get him to wear the aids.

Good luck!
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Old 11-06-2007, 11:01 AM   #24
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Oh dear!

I just wanted to write and reassure you that your son is not unusual; many children, especially younger children (who are rebelling against everything anyways), have difficulty keeping their hearing aids in. Are there any support groups (online or in person) for parents of children with hearing loss? I'm sure that you will find a lot of parents with stories similar to yours and some good suggestions for you.

Hearing aids aren't the most comfortable things in the world and, as other people have noted, the sound input you get from them isn't always comfortable either. One of my students would actually pull her hearing aids out of her ears and stick them in her mouth (I can't imagine that tasted very good)!

I have some suggestions, which may or may not work:

1) Don't try to put his hearing aids in before he starts an activity, but wait until he is engaged in an activity (especially one that occupies his hands), and then pop them in.

2) Try to get the hearing aids on if he is playing with a toy which makes sounds that you've noticed he enjoys listening to. Say something like: "Let's listen to that again with your hearing aids. This sounds cool! Did you hear that before? Does it sound different now?"

Good luck!
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Old 11-07-2007, 04:54 PM   #25
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Just found your post Meg ... huge to you! You have so much on your plate right now, it's no wonder you're so stressed! The only thing I can offer, other than lots of support! - is just how I've seen people react to change. Most folks don't deal well at all, and we're talking a toddler, and we know how well they deal with change . My younger ones - both still toddlers - get all weirded out when we don't do the same thing on any given day. To Owen, it's not of his world to hear everything many of us hear, and it may have been a little scary. He may even decide one day he likes his quiet world better, and may rely on sign and reading lips. I wouldn't give up though, and there have been some of good ideas here that you could try and could work. And I'd have to think the Dr. could give you some guidance.

So good luck with the doctor, and with Owen. You are obviously a loving, caring, and determined mom, and that is huge. Just take some time and take care of yourself - so you can keep taking care of him.
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Old 11-10-2007, 10:46 PM   #26
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we have success!
we went yesterday morning and got owen's new hearing aids. they're really pretty sharp looking. they also modified his ear piece so it's more open now. that way he can use some of the hearing he DOES have.
the audiologist showed us how to put them in his ears using her favorite "hold". we sit on the floor with owen in our lap, and then throw one of our legs over his lap. that way he's held in, but not bound up. she got one of his hearing aids in, and then had ryan and i instantly start playing with him with a toy car they had. whenever he tried grabbing at the hearing aid, she would push his hand towards his head so he couldn't rip them out, say "yup that's your hearing aid" and he'd let go because he couldn't get a grip on it. after a few minutes, she did the same thing with his other hearing aid. once he was distracted, he was fine. if he reached towards his hear and tried to grab, we'd push his hand towards his head, tell him that was his hearing aid, he'd let go, and we'd play with another toy.
after making some more adjustments, it was my turn to put them in. he fought me a lot harder, but we got them in. he left them in for another 15 mins, and then we had to leave.
the other thing she said was, don't end him having his hearing aids in with him pulling them out. if he pulls them out, you put them right back in, nad a few minutes later after he's forgotten them, you say "okay. all done with the hearing aids" and take them out. that way he never "wins" by taking them out. if anything, he'll just get more frustrated doing that because we have to wrestle them back in.

new tips and new hearing aids in hand, we tried it again this morning, and he left them in for about 30 mins before taking them out. we wrestled them back in, and he left them in another 20 mins. he actually heard the phone ring today. he was playing with his train on the floor with me when it rang. he popped up like a little prairie dog trying to see what was happening. it was so cool! when i took the hearing aids out, he fussed a little bit. imagine that!
i think we'll just do this every day and increase the time. i'm going to give the daycare provider the same advice.

so it's not his hearing, it's not the sounds, it's just a little boy approaching 2 years old who has decided he'll just start that power struggle stuff early.

but thank goodness he left them in!

thank you again for all of your support and kind words!
fingers crossed it'll happen again tomorrow!
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Old 11-10-2007, 10:56 PM   #27
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That is great! Hurray for your audiologist and all of her great tips - and to you guys for being such dedicated parents. Your son's quality of life will be so much better for it!
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Old 11-11-2007, 12:40 AM   #28
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yeah!! I really, really, hope things continue to go so well for all of you. Best of luck!
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Old 11-11-2007, 11:25 AM   #29
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owen's has had his hearing aids in for 45 mins so far this morning (they're still in). we're watching one of the thomas the tank-engine movies we picked up at the library yesterday morning.
he fought really hard getting them in, but once they were in, he left them alone. it's a will power thing.
thanks for all of your support!
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Old 11-11-2007, 12:45 PM   #30
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That is great news! Glad he is tolerating them better!
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