Cochlear implant and childrens services

frankiesmom

frankiesmom

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ok...the deaf education lady came out, and went over his audiogram. it was different than what i was told, in that his hearing loss whatever isnt in the 70 decibel range, it was 80-90. then she went full force on why we should get the implant..i explained our stance and she glossed over that and said that in 4 months, if hes not responding, we need to get a consult with the surgeon etc etc. i got an uneasy feeling about this lady..maybe im just paranoid *i am, its true!* but i am wondering if i could be turned in for "medical neglect" when i ultimately refuse this surgery?
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also, thank you guys!! thanks to lurking on here and talking with all of you, i was totally on her level, which surprised her a lot..she brought out these horribly dumbed down charts and this simplistic diagram of the ear..and she gravely told me that the hearing aids dont repair the nerve damage..!!! so condescending, these early intervention people are.
 
I doubt you could be turned in for "medical neglect." Reasonable people might come down on either side of the implant - don't implant question, so I can't see that a case could be made for "neglect" either way.

Did you get the hearing aids today? Can you tell if he's responding at all to them?
 
we get them tomorrow..im so excited!! she said that he wont be able to hear all speech with them, but he will hear some sounds.
 
Good luck with them! I am trialing some new Oticons right this minute. Got them this a.m., and they were LOUD. Went back mid-afternoon and the audi re-adjusted them to better volume levels, and played around with a couple of frequencies. Much, much better. I took careful notes on how things sounded, which of course helped him immensely in figuring out the adjustments.

With an infant, I can't imagine how difficult it would be to get it set up correctly. The audiogram doesn't tell you everything. There's a personal factor that doesn't show up in nice neat numbers on the chart.

Good luck with it all; I hope it goes well.
 
I'm a lawyer. You and your husband jointly make all medical decisions for your child.
 
that is what he said..i just wonder why she was so pushy about it because she said she had a masters in sign language, so its not like it would be hard to help us..or whatever.
 
frankiesmom said:
ok...the deaf education lady came out, and went over his audiogram. it was different than what i was told, in that his hearing loss whatever isnt in the 70 decibel range, it was 80-90. then she went full force on why we should get the implant..i explained our stance and she glossed over that and said that in 4 months, if hes not responding, we need to get a consult with the surgeon etc etc. i got an uneasy feeling about this lady..maybe im just paranoid *i am, its true!* but i am wondering if i could be turned in for "medical neglect" when i ultimately refuse this surgery?
--
also, thank you guys!! thanks to lurking on here and talking with all of you, i was totally on her level, which surprised her a lot..she brought out these horribly dumbed down charts and this simplistic diagram of the ear..and she gravely told me that the hearing aids dont repair the nerve damage..!!! so condescending, these early intervention people are.
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No, you will not be turned in for medical neglect. Such a charge would not even warrant an investigation by Children's Services, much less having charges filed.

However, the woman who was pushing CI and not giving validity to your feelings on the matter, nor assisting you from your perpsective of what you want for your child could very well be reported for unethical behavior.
 
frankiesmom said:
that is what he said..i just wonder why she was so pushy about it because she said she had a masters in sign language, so its not like it would be hard to help us..or whatever.
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The fact that she said she had a master's in sign language makes me skeptical. Her master degree would not be so specific as to be in sign language only. It would be a deaf studies degree, or deaf education degree. But I would doubt that as well.

Some of these people are, as I stated just a minute ago, unethical in their practices. And they don't mind fudging the truth to get you to agree with them or to put undue pressure on you by abusing their perceived title of "expert".
 
frankiesmom said:
we get them tomorrow..im so excited!! she said that he wont be able to hear all speech with them, but he will hear some sounds.
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Not nessarily. There are still quite a few kids with severe and profound losses who can reach speech levels with HAs. You really can't tell until you trial hearing aids. It really is hard to tell with babies you know....and I think a lot of people would agree. You know there is a reason why a lot of dhh kids weren't dx until we were toddlers.....and god, did you know that back in the '70's, a lot of kids with hoh losses were misdx as mentally disabled?
 
frankiesmom said:
ok...the deaf education lady came out, and went over his audiogram. it was different than what i was told, in that his hearing loss whatever isnt in the 70 decibel range, it was 80-90. then she went full force on why we should get the implant..i explained our stance and she glossed over that and said that in 4 months, if hes not responding, we need to get a consult with the surgeon etc etc. i got an uneasy feeling about this lady..maybe im just paranoid *i am, its true!* but i am wondering if i could be turned in for "medical neglect" when i ultimately refuse this surgery?
--
also, thank you guys!! thanks to lurking on here and talking with all of you, i was totally on her level, which surprised her a lot..she brought out these horribly dumbed down charts and this simplistic diagram of the ear..and she gravely told me that the hearing aids dont repair the nerve damage..!!! so condescending, these early intervention people are.
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Frankiesmom, were you able to get a d/Deaf mentor through your state? That person might be able to navigate through some of the bias you may encounter from any individual office. In our state they've been carefully trained not to lead clients in any particular direction, just to inform (so, for example, our Deaf mentor took us on tours of all different types of academic settings, without bias, and I only later found out that she's one of the most visible and pro-Deaf proponents in the country). Just hate to see anyone pressured in that way.
 
Pls contact your local Deaf agency and get a Deaf advocate. If not local, I am sure you can get one in nearby states and correspondence via email.
 
frankiesmom said:
so how would i ask? i mean..what would i say, if that makes sense! :D
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Tell them that you are looking for a deaf mentor to help you gain some understanding of your son's needs, assist you in learning ASL and advocate for his educational placement.
 
If my mom read this she would wish she had a deaf mentor back in 1970s. She didnt have one. She bumped into other parents who have deaf kid at school. The other parent taught my mom how to sign because of the parent's deaf parents. Too bad i did not meet the parents deaf parents that deaf parents passed away before I was born. The parent's deaf son is my friend. My friend never met his own deaf grandparents. DANG!

Having a deaf mentor is a great idea. It gives me some ideas that i d like to do something as a deaf mentor in my hometown. :hmm:
 
Frisky Feline said:
If my mom read this she would wish she had a deaf mentor back in 1970s. She didnt have one. She bumped into other parents who have deaf kid at school. The other parent taught my mom how to sign because of the parent's deaf parents. Too bad i did not meet the parents deaf parents that deaf parents passed away before I was born. The parent's deaf son is my friend. My friend never met his own deaf grandparents. DANG!

Having a deaf mentor is a great idea. It gives me some ideas that i d like to do something as a deaf mentor in my hometown. :hmm:
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You would be a great deaf mentor to new parents!
 
jillio said:
You would be a great deaf mentor to new parents!
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Thanks. i like to think so! :D

I just contacted my girlfriend who lives here and her deaf parents live here for long time. i asked her if we have deaf mentor in syracuse ny. I live here for 10 yrs but it is not enough. I stayed home with kids for four years, and did not have much socialize with deafies until 6 yrs ago. I started going out with them and learned which those groups I can feel comfortable. I found one. yay. so im waiting for her to reply. I have an awesome hearing advocated lady who works with deaf services that i plan to ask her about it as well.
 
Frisky Feline said:
Thanks. i like to think so! :D

I just contacted my girlfriend who lives here and her deaf parents live here for long time. i asked her if we have deaf mentor in syracuse ny. I live here for 10 yrs but it is not enough. I stayed home with kids for four years, and did not have much socialize with deafies until 6 yrs ago. I started going out with them and learned which those groups I can feel comfortable. I found one. yay. so im waiting for her to reply. I have an awesome hearing advocated lady who works with deaf services that i plan to ask her about it as well.
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Good for you! I believe that Deaf mentors provide a much needed service to hearing parents. It is very often the only contact they have had with a Deaf adult, and the only place they can get accurate information about the culture, the educational experience, the social experience, and what it was like to be a deaf child. So many hearing parents have had no previous contact with anyone who was D/deaf, and it is reasurring to talk with successful Deaf adults who have a unique perpsective.
 
I d like to. I do cherish my currently job. My job pays pretty good included health insurance and retirement plans that i have no way of quitting my job. However I do like to work as my second job on the weekend or once a week during evening time. First of all, I ll find out about my hometown to see if they do have deaf mentor first.
 
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