Our Journey

Sarfarigirl2011 said:
alot of work huh? well my other hearing aids has the piece 4 it that were really hard 2 put 2gether but now with my 3rd set, it's easy as pie :D
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:D wish he would keep them in...he rips them off when he gets mad, he takes them off when we go in a car, he loves putting them in his mouth...:roll: lol we had them replaced 2x because of rust build up in the battery compartment
 
beba said:
He has many disorders. 22q 9p and something else. it might be chrge we dont know yet. genetics is still testing. I hope asd will meet his needs. i love perkins i miss it so much. he is actually starting besby....i guess its like perkins but for CT.
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Oh what I meant to ask was if he was like a Charge kid, you know in terms of functioning. I know it it can be hard to tell how well a deaf-blind kid will function. Even "just deafblind" kids when they're younger and don't have the proper services can seem like they're severely mentally impacted. ....Did he get services from Perkins School for the Blind, do you mean? He may be able to attend the actual school when he is older, like for upper elementary and middle high school....that's good that there's another program for him....too bad Perkins doesn't have regional preschools or something....
 
try the ear gears, they will help keep his lil hands off of them and he will thank U later!
 
beba said:
I am new to the site. I have 4 children and 2 have hearing loss. my four yr old has hearing loss in one ear and my 1yr old is sesverly to profoundly deaf. I came to this site in order to get help and have other ppl to relate to. Our journey has been nothing close to easy. My 1yr old started with hearing aids and now has 1 aid and 1 cochlear. the cochlear he has was recalled. he got implanted in July and still cant hear. he does use asl and I pretty much think the implant was not a good choice since it hasnt worked. this link is the story on 3 of my sick kids. this was b4 isaiah was activated....pages 8 and 9 ..... copy n paste to address bar if u have to


http://xa.yimg.com/kq/groups/4673422/184033326/name/issue+50,+September+2011.pdf
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I can't even begin to understand what it's like to have children with hearing loss, as I don't have a child of my own (and rightly so because I'm only 17), but welcome. I haven't heard of many cases that someone has gotten implants, I know they exist but I've never really heard anything about it. Would you (or someone else) mind explaining how implants work?
 
:welcome: to AllDeaf forum. I hope you enjoy reading and posting all the threads here. See you around here. :wave:
 
Welcome! I'm the hearing parent of a 2 year old who has been using bilateral implants for not quite a year.

I wouldn't give up on the implant just yet. If he was implanted in July, that would mean activation in August or September, so Nov would only have been a few months of CI use, and only one or two mappings? CI's require a good six months to a year of use along with some pretty intensive therapy before you begin to see the amazing results. Hang in there!

I think its awesome that you're using signed language along with the CI! We continue to use SEE along with spoken English and have had amazing results!
 
iowaboy said:
Welcome! I'm the hearing parent of a 2 year old who has been using bilateral implants for not quite a year.

I wouldn't give up on the implant just yet. If he was implanted in July, that would mean activation in August or September, so Nov would only have been a few months of CI use, and only one or two mappings? CI's require a good six months to a year of use along with some pretty intensive therapy before you begin to see the amazing results. Hang in there!

I think its awesome that you're using signed language along with the CI! We continue to use SEE along with spoken English and have had amazing results!
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Yeah, right (sarcasm). CIs is the same way with hearing aids too while we struggled in the mainstream schools. Ummp! :roll:
 
The first settings can be so low that they aren't perceived as usable sound. It depends on the map and how the AuD plans on advancing it. CIs are not like a switch that work from the minute they are put on. I hope beba is encouraged to talk with the audiologist about this, and not discouraged by the nay sayers that she will encounter here that do not understand the technology and put forth false comparisons about it.
 
iowaboy said:
The first settings can be so low that they aren't perceived as usable sound. It depends on the map and how the AuD plans on advancing it. CIs are not like a switch that work from the minute they are put on. I hope beba is encouraged to talk with the audiologist about this, and not discouraged by the nay sayers that she will encounter here that do not understand the technology and put forth false comparisons about it.
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Hey Homeboy. Don't embarrass our state too much. You must not have read that this is a deaf/blind child with chromosome abnormalities.

It isn't as simple in this case as you make it seem.

Try to be a little productive instead of just defending CI.
 
Hello Bott. Go Hawks, and an uncharacteristic nod to the Cyclones this weekend!

I saw that there were other issues in play, which only strengthens the fact that a few months of CI use might not have held many positive results. Truly in this type of situation results might be more subtle, and take longer to see. Beba needs encouragement to hold the course, work with the little one, and wait for results. This advice represents the most productive stance given the resources and time already devoted to this child.

I do see the need to defend CI's and to offer encouragement when others would rather help throw in the towel without looking at the exact situation. On the flip side, I think my time/posts here also show that I'm not a knee-jerk CI defender, but also fully support parental choice/decisions, all forms of manual communication (ASL, SEE, etc), and a respect of Deaf culture.
 
iowaboy said:
Hello Bott. Go Hawks, and an uncharacteristic nod to the Cyclones this weekend!

I saw that there were other issues in play, which only strengthens the fact that a few months of CI use might not have held many positive results. Truly in this type of situation results might be more subtle, and take longer to see. Beba needs encouragement to hold the course, work with the little one, and wait for results. This advice represents the most productive stance given the resources and time already devoted to this child.

I do see the need to defend CI's and to offer encouragement when others would rather help throw in the towel without looking at the exact situation. On the flip side, I think my time/posts here also show that I'm not a knee-jerk CI defender, but also fully support parental choice/decisions, all forms of manual communication (ASL, SEE, etc), and a respect of Deaf culture.
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Fair enough. I did think you might not have noticed the issues.

Yeah, it was amazing about the Cyclones, but we can't gloat considering Oklahoma's tragic week.
 
iowaboy said:
Welcome! I'm the hearing parent of a 2 year old who has been using bilateral implants for not quite a year.

I wouldn't give up on the implant just yet. If he was implanted in July, that would mean activation in August or September, so Nov would only have been a few months of CI use, and only one or two mappings? CI's require a good six months to a year of use along with some pretty intensive therapy before you begin to see the amazing results. Hang in there!

I think its awesome that you're using signed language along with the CI! We continue to use SEE along with spoken English and have had amazing results!
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Isaiah was activated aug 16th he has had mappings every wk due to going from program 1 to 4 in a day or two. he isnt responding where they expect him to. its close to dec now and he still is not hearing or responding. his device was recalled. it is getting removed but he does suffer many other things that may be the cause.
 
iowaboy said:
The first settings can be so low that they aren't perceived as usable sound. It depends on the map and how the AuD plans on advancing it. CIs are not like a switch that work from the minute they are put on. I hope beba is encouraged to talk with the audiologist about this, and not discouraged by the nay sayers that she will encounter here that do not understand the technology and put forth false comparisons about it.
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they have used low and high and still noe he hasnt responded. hes had so many mappings. he has one coming up in 2wks after the holiday.
 
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