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Post by meghans_mom on Apr 3, 2006 16:57:30 GMT -5
hey everyone
we just got back from our ENT, where MM had a hearing test. I asked how she did and they said "fine, same as last time"
With her last test (with-in 6 months) I showed it to the audiologist at her school, and she was not pleased, she said it was not great.
So I asked the ENT, why does the school audiologist seem to be unhappy w/ her results and you're fine with them?
So he said there is a range of 'normal' hearing for kids w/ DS and her test falls under this 'normal' range. HOWEVER, if this was MY hearing test - I would definitely have hearing loss.
WHAT THE HECK DOES THAT MEAN??
I should be happy because my daughter most likely has some hearing loss, but because she has a disability it is classified as normal? Doesn't that seem weird or something, discriminatory, somehow??...I don't think I can let her walk around with any type of hearing loss, yet this doctor and audiologist seem unconcerned?
any comments? Yes, I'll look into a 2nd opinion too...but has anyone else ever heard this?
HELP! laurie
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Post by Pat on Apr 3, 2006 18:59:23 GMT -5
Laurie, although she might have a hearing loss, it does not necessarily mean she needs a hearing aide. I had a hearing loss of 15% in my right ear. I guess I would find out a little more to see if an aid would help. He needs a better "bedside manner"! When did the amount of hearing loss a child has change because they had DS?
The first ped. I had I changed as he seemed to think John-John was DS & the fact that he was an individual came 2nd. I don't have him anymore ;D
Pat
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Post by meghans_mom on Apr 3, 2006 19:47:46 GMT -5
thanks Pat - Meghan has "fluctuating hearing loss" meaning it's 'temporary' & changes depending on if she's sick, her tubes are clogged, etc not conductive (i think that is the right word?) so she doesn't need a hearing aide - but I am still concerned that they are NOT concerned, know what I mean? She does need help in the classroom, like a microphone & speaker pack that they sometimes use so she can hear more clearly.
thanks - I'm going to talk w/ the audiologist at MMs school to see what she thinks.
laurie
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Post by Jessie on Apr 3, 2006 20:36:06 GMT -5
Weird. I don't get that either, why should it make a difference if she has Ds? You are right to be questioning this - especially because you already do have the schools audiologist's opinion . . . so, sounds like you need a 3rd opinion and hopefully you will get a better answer.
Jessie
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Post by CC on Apr 3, 2006 22:29:14 GMT -5
Hmmm intersting... Chris has a mild loss and for us the reaction from the ENT and Hearing dept at the hospital where he was tested, was quite the opposite from yours. I was told to get the hearing aids due to the fact that kids with DS have enough trouble with things and if things can be made easier for them in any way go for it. I am not saying MM needs hearing aids BUT for them to say "is a range of 'normal' hearing for kids w/ DS and her test falls under this 'normal' range. HOWEVER, if this was MY hearing test - I would definitely have hearing loss." In my opinion that statement is just NUTS  CC ~ |
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Post by andrewsmom on Apr 4, 2006 13:14:18 GMT -5
Hmmm...If you lived closer to me I would Swear we went to the same hearing test. I am in the process of getting another appointment for Andrew to have his hearing tested since he hasn't had it re-tested since he was an infant. (Yes....I just recently learned children with DS should have their hearing tested WAYYYY more frequently....I really dropped the ball on this one...yeah, the guilt is setting in).
But anyway, when he did have his hearing checked they told us something similar to what you were told. That his hearing fell in the "normal range for kids with DS". Now that I know so much more about DS, that sounds rediculous to me. I don't like to think of myself as a person with no commonsense, but when he was an infant, I was thinking "ok so his hearing is normal for him". Why should kids with DS have hearing any different then other kids? If it is not as good as other kids then they need help. Obviously.
I'm sure if you are in New York and I am in Ma, then there are at least two "professionals" out there testing this way. I wonder how many other parents are being told this also. hmmmmm
-Trisha
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Post by momofrussell on Apr 4, 2006 13:57:02 GMT -5
I don't know... what to think of that! But a second opinion sounds like a GREAT idea!  That would be frusterating.... sounds like some massive grey area that needs to be cleared up! Hugs! A. |
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Post by Chris on Apr 4, 2006 18:05:14 GMT -5
I think that doctor stinks! Why should our kids go through life with substandard hearing? I know some hearing loss can be prevented. I think a microphone and sound system should be standard in every classroom! Since you have evidence that her hearing is NOT normal, I would write the amplification system in her IEP!
Chris
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Post by Emilysmom on Apr 5, 2006 6:43:49 GMT -5
I have never heard of anything like that at all! But.........I will tell you that Emily was diagnosed several years ago as having "mild hearing loss" after several different types of hearing tests. Afterward (I was really torn up at the thoughts of her having ANY kind of hearing loss, and fearing that it would get much worse), they suggested for us to do a few modifications at home and at school: She sits where the teacher is on the side of her "good ear, etc. She goes back for an annual test to see if it is any worse at all, and then they decide if she might need an amplification device for the teachers to use (teacher wears a microphone and Em has headphones so the outside noises are gone and the teacher's voice is amplified). However, WE have never ever seen any signs that she doesn't hear us at all! She hears whispered voices, she hears when she is in a crowd, etc. So........we are watching, and retesting and watching some more. One thing we have noticed is that she occasionally will say "what"  I have started to realize when she does this that she is needing more TIME to process what she just heard............saying "what" (or "huh" ) gives her a second chance to hear what was said and to process what she needs to do about it. It doesn't mean she didn't hear what was said. Susan |
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Post by Pat on Apr 5, 2006 7:41:09 GMT -5
This is what is was like for me. I also would say "What?". It gave me time to process it too. With the hearing loss, I had more trouble in crowds. I also would go in my friends house & although I heard her, I could not have told you which direction she called me from. She'd always say "I'm upstairs Pat".
When I was young, I could not always recognize I didn't hear you. As I got older I could tell I heard something. I also would, without thinking, insert the word I didn't hear or only heard part of, as in: "I have to go to the gr..
store & buy some hamburger rolls." Only when I had inserted a wrong word that did not make sense I would realize what I had done. My loss was in just one ear & was affected by fluid buildup with allergies (which I out grew). I had hearing loss for 34 years until I got prayer & was healed ;D
Pat
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That would be frusterating.... sounds like some massive grey area that needs to be cleared up!
I have started to realize when she does this that she is needing more TIME to process what she just heard............saying "what" (or "huh"
&
Susan, Proud mom of Michael (32), Justin (25) Emily (22ds), and Jordan (20).
