Cochlear recalls Nucleus CI500

Yep, I agree. ASL is the way to go. It ensures communication among everyone. That includes family, teachers, IEP teachers, the general public, and so on. Especially if he's getting no response from his CI. The child will need another/different form of communication. Good luck! :)
 
beba said:
ppl in CT, same when i lived in MA. The state isnt trying to help.
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Ahh, that's too bad you left MA. Although I've heard some good things about CT's resources, too. In our experience, and that of many others we know well, in MA the Commission for Deaf and Hard of Hearing sets you up with a Deaf mentor to guide you through available resources, but you need to contact them. They provide a comprehensive book of resources for you to choose from. They pay outright for your first 20 weeks of ASL and will even send the instructor to your home, on a weekend, if that's what works for your family (and they'll gladly teach everyone in your family and beyond, invite the grandparents, uncles, aunts, neighbors, friends, etc. -- the more the merrier), again, you need to choose this. Early intervention will provide an ASL-fluent SLP to begin language development from birth until 3 -- you have to ask for it and write it into your IFSP. In our case they transferred our EI services to a catchment area more than an hour away, because there were no ASL-based parent infant groups locally, but once we found one, through our Deaf mentor, they provided full support for 3X weekly sessions in an ASL-immersive environment, plus weekly group sessions with other deaf and hearing families moderated by the psychologist at a bi-bi school for the deaf familiar with the educational experiences of deaf kids.

The Deaf and HOH dept. of our hospital ( Children's Hospital Boston ) is very much pro- bilingual education and ASL, regardless of whether or not you pursue HAs or CIs. From the moment hearing loss was suspected, every medical report we received recommended ASL, and advised to do it early. They do push HAs right off the bat, but they have a policy not to initiate any discussion of CIs -- any move towards that end must be initiated by the parents or the individual. And they have a close relationship with the local schools for the deaf and EI, their education professionals in the department will work closely with you and with EI to evaluate language skills and guide you towards developing your child's acquisition of ASL. If you are a parent who wants to raise your child with ASL, and you participate in the ASL-based parent-infant programs, you can take ASL courses in the evenings for free, and they've recently begin classes on Friday mornings so parents could do it while their kids were in school, rather than finding child care or driving from very far away at night. My daughter's school for the deaf occasionally receives grants that allow them to provide individual weekly ASL services to families in need via videophone if you can't drive in to the school for the group classes. And of course, if you have a deaf child, you get free videophones and other assistive technology for your home.

I know of two parents who left the MA area because they were disappointed in how much focus was placed on ASL, rather than on technology and AVT methodologies, but I've never heard of anyone leaving MA because they thought they could find more ASL resources elsewhere. One of the leading and most respected and successful schools for the deaf, one of the very first ever to use bilingual methods rather than oral methods, is in Framingham, MA.

Of course the support for making ASL resources available to families could be and should be even better, but compared to other states? It's amazing -- we're so very lucky! We were in the process of moving out of state when we discovered Li was deaf -- and we put the brakes on that immediately, in the midst of a home sale, when we found out how much more robust the support was in our state vs. alternatives.
 
Deafguy25 said:
How are they MAPping him? Are they using the NRTs? Does the audiologist do a booth test after MAPping? What does the audiogram look like?
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that is unusual for me to read your post when you wanted to know whats his audiogram after you have deaf parents. You are the first person I learned about a new things.
 
GrendelQ said:
Ahh, that's too bad you left MA. Although I've heard some good things about CT's resources, too. In our experience, and that of many others we know well, in MA the Commission for Deaf and Hard of Hearing sets you up with a Deaf mentor to guide you through available resources, but you need to contact them. They provide a comprehensive book of resources for you to choose from. They pay outright for your first 20 weeks of ASL and will even send the instructor to your home, on a weekend, if that's what works for your family (and they'll gladly teach everyone in your family and beyond, invite the grandparents, uncles, aunts, neighbors, friends, etc. -- the more the merrier), again, you need to choose this. Early intervention will provide an ASL-fluent SLP to begin language development from birth until 3 -- you have to ask for it and write it into your IFSP. In our case they transferred our EI services to a catchment area more than an hour away, because there were no ASL-based parent infant groups locally, but once we found one, through our Deaf mentor, they provided full support for 3X weekly sessions in an ASL-immersive environment, plus weekly group sessions with other deaf and hearing families moderated by the psychologist at a bi-bi school for the deaf familiar with the educational experiences of deaf kids.

The Deaf and HOH dept. of our hospital ( Children's Hospital Boston ) is very much pro- bilingual education and ASL, regardless of whether or not you pursue HAs or CIs. From the moment hearing loss was suspected, every medical report we received recommended ASL, and advised to do it early. They do push HAs right off the bat, but they have a policy not to initiate any discussion of CIs -- any move towards that end must be initiated by the parents or the individual. And they have a close relationship with the local schools for the deaf and EI, their education professionals in the department will work closely with you and with EI to evaluate language skills and guide you towards developing your child's acquisition of ASL. If you are a parent who wants to raise your child with ASL, and you participate in the ASL-based parent-infant programs, you can take ASL courses in the evenings for free, and they've recently begin classes on Friday mornings so parents could do it while their kids were in school, rather than finding child care or driving from very far away at night. My daughter's school for the deaf occasionally receives grants that allow them to provide individual weekly ASL services to families in need via videophone if you can't drive in to the school for the group classes. And of course, if you have a deaf child, you get free videophones and other assistive technology for your home.

I know of two parents who left the MA area because they were disappointed in how much focus was placed on ASL, rather than on technology and AVT methodologies, but I've never heard of anyone leaving MA because they thought they could find more ASL resources elsewhere. One of the leading and most respected and successful schools for the deaf, one of the very first ever to use bilingual methods rather than oral methods, is in Framingham, MA.

Of course the support for making ASL resources available to families could be and should be even better, but compared to other states? It's amazing -- we're so very lucky! We were in the process of moving out of state when we discovered Li was deaf -- and we put the brakes on that immediately, in the midst of a home sale, when we found out how much more robust the support was in our state vs. alternatives.
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I lived in mass i contacted them and never got a call. A year and a half later they responded. we took the 20wk classes at home and did lots of the stuff but it wasnt working for our family. the hospital was centered on making us believe the cochlear would help and it hasnt. we tried getting him into total communication at Jackson mann and they never responded to the multiple doctors and therapists contacting them. we are just looking for other options. even the EI in the area we had was bad...no one knew sign and couldnt work with him properly. Isaiah is deaf he isnt oral and does not hear...so someone that knows sign would be best and they couldnt even do that. i am happy ur family has had it done the right way it wasnt like that for my lil one. i keep an open mind tho if it doesnt work here im going back home to mass. i miss it so much lol. framingham was never given to us as an option...This is my email coralis.rodriguez86@gmail.com maybe u can give me all the info that helped u and the services so if i do go back i know where to go/??? im just a mom desperate to get all the things she needs for 2 hearing impaired kids....i want to communicate with my son and its hard with him having CVI and being deaf.
 
beba said:
I lived in mass i contacted them and never got a call. A year and a half later they responded. we took the 20wk classes at home and did lots of the stuff but it wasnt working for our family. the hospital was centered on making us believe the cochlear would help and it hasnt. we tried getting him into total communication at Jackson mann and they never responded to the multiple doctors and therapists contacting them. we are just looking for other options. even the EI in the area we had was bad...no one knew sign and couldnt work with him properly. Isaiah is deaf he isnt oral and does not hear...so someone that knows sign would be best and they couldnt even do that. i am happy ur family has had it done the right way it wasnt like that for my lil one. i keep an open mind tho if it doesnt work here im going back home to mass. i miss it so much lol. framingham was never given to us as an option...This is my email coralis.rodriguez86@gmail.com maybe u can give me all the info that helped u and the services so if i do go back i know where to go/??? im just a mom desperate to get all the things she needs for 2 hearing impaired kids....i want to communicate with my son and its hard with him having CVI and being deaf.
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You may send private message to her about it.
 
Deafguy25 said:
So what does his audiogram look like after the MAPping? You said that he wasn't hearing anything, what does the audiologist say?
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It doesn't matter what the audi says. It matters how this child is functioning in every day life.:cool2:
 
jillio said:
It doesn't matter what the audi says. It matters how this child is functioning in every day life.:cool2:
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You are so correct on that and I am not saying because I am her friend. I have seen children who are mildly HOH who have absulotely NO speech skills and then there are people like me with a severe profound hearing loss who have almost perfect speech skills.

Stop looking at the EARS and the MOUTH people! geez!
 
shel90 said:
You are so correct on that and I am not saying because I am her friend. I have seen children who are mildly HOH who have absulotely NO speech skills and then there are people like me with a severe profound hearing loss who have almost perfect speech skills.

Stop looking at the EARS and the MOUTH people! geez!
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I think im sticking to asl only. his recalled device will be getting removed soon.
 
beba said:
I think im sticking to asl only. his recalled device will be getting removed soon.
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Deaf children can have both ASL and speech skills..nothing wrong with that. Just hate that some people (not you) spend so much time focusing on what the child can hear or the quality of their speech skills. Many adults did that to me when I was growing up and it was a lot of pressure. Also, I didnt have ASL as well. Now, I do and I am happy to have both and happy that nobody is constantly harping on my ability to understand others or my speech skills. Those days are over for good, thank god!
 
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