What to do?

deafdyke said:
Define much....like does he hear enviromental noises? Does he seem to hear a percentage of speech? If he does hear a percentage of speech, I'd opt for trying a body worn aid or those high frequncy transponders. But if he doesn't really get all that much from aids, I think opting for the implant would be a wise choice!
Is the speech therapist from a public early intervention program or are they from a school for the Deaf? Public EI therapists aren't very good at intervention for dhh kids....a lot of times public EI therapists only know a handful of Signs or whatever. Call the school for the Deaf in your area....You're in Kentucky right? I'll go and hunt down some links for you, inclulding some for oral programs...the problem with speech therapists from schools for the deaf, is that they tend to not be as skilled with oral methods as those who work at private oral programs.
That's AWESOME that you want your son to experiance BOTH worlds! YAY!!! WHOOHOOO!!!!!!!!!!!!!!!!!!
Click to expand...
When I say much I mean I don't really see any reaction to sounds of any sort. His ABR shows no responce in his left ear and I belive showing responce 60 db in his right. I know his right ear has some hearing, but like i said before I don't notice any reaction to sounds, other than clapping. He will look around to find out who is clapping with or without aids in. His ST is from Louisville Oral and Deaf School, she's also stuiding anything she can about the CI's.
 
Higa, thanks for sharing your story. That was really well-written and more informative than some of the other info. here.

Ellie, how many hours of ST does your son participate in each week?
 
When I say much I mean I don't really see any reaction to sounds of any sort. His ABR shows no responce in his left ear and I belive showing responce 60 db in his right. I know his right ear has some hearing, but like i said before I don't notice any reaction to sounds, other than clapping.
Click to expand...
Has he been tested for something called auditory nereopathy? This is a type of hearing loss where the person can hear but not really understand. It's relativly complicated.....not really sure about what exactly it is....but kids with it don't function well with hearing aids and so need CIs. He may also have a central hearing loss....
I would definitly look into the CI for your son! I mean it sounds like he's the perfect canidate! Usually kids with a 60 dcB loss can make use of hearing aids.....but you know it might be a little more complicated b/c didn't you say that he has some developmental issues due to prematurity? It's tough to say how to go!
 
Ellie said:
through our local program only 1 hour a week is allowed.
Click to expand...
Right now he's only getting an hour every other week but in August that will probably change. right now he's getting Physical Therapy once a week and also Occupational therapy every other week. In August we have to do an eval and that's when we can change where our time goes since we are only allowed so much for a six month period. We have requested more units for this six months and I'll probably find out at the end of the month if we get them or not. At which point I have to decide when every one visits with John and how often depending on what my main goals are for him. It's kind of messed up if you ask me. They are wanting me to decide between getting help teaching my son to communitcate, walk, help him self (eating mostly, finer motor skills). All the things that most 20 month olds are doing. DUH I want him to be able to do it all, what mother doesn't. I already know that ST will be going to weekly, as for the other two I'm not sure really what we are going to do.
 
How bad are his other developmental delays? One upside of getting CI is that a lot of times therapy is covered by insurance so you might be able to get therapy from auditory-verbal therapists who are really talented!
I forgot about looking up info in KY for you.....anyway join the Parent Deaf-hh listserv...it's a great list!
 
Here is a whole bunch of information!!!! I hope this helps you!
http://kcdhh.ky.gov/ (Kentucky Commisson for deaf and hoh)
http://www.danville-ky.com/BoyleCounty/ksd.htm (Kentucky School for the Deaf)
http://www.kydeaf.org/ (Kentucky Assication of the Deaf)
http://www.deafchildren.org/home/home.html (American Society for Deaf Children)

Maybe a good idear would be to have him evaluted privately at like a really good hoispital, so you can get a good idear of where he's at, and what he really needs. Is he making progress in speech therapy do you think? Does he say any words? How severe are his delays?
 
deafdyke said:
How bad are his other developmental delays? One upside of getting CI is that a lot of times therapy is covered by insurance so you might be able to get therapy from auditory-verbal therapists who are really talented!
I forgot about looking up info in KY for you.....anyway join the Parent Deaf-hh listserv...it's a great list!
Click to expand...

Right now John's about at the development of a 6 month old. He can't sit or stand on his own. He doesn't crawl either. He's working rally hard on things lately and his theropist are really pleased, so am I. Sometimes I can sit him down and he'll stay there for awhile, but ususally falls over without control. Also he doesn't say any words really. Sometimes it sounds like he says "Da" so when he does and Daddy is home Da goes and gets him, so that maybe he'll connect what he says with who comes to get him.
 
Is he that way both mentally AND motor skill wise? I know in cases of severe motor skill issues (eg cerebal palsy) it is REALLY hard to accurately tell how severely someone is affected. ....anyway that is good that you're open to sign..one of my friends has a friend whose son has cerebal palsy (no hearing loss) and Signs as his primary language.
You know, I would definitly opt for the CI in your case....being implanted could help him a LOT!!!!! I know I've read about multihandicapped kids getting implanted lately.
 
deafdyke said:
Is he that way both mentally AND motor skill wise? I know in cases of severe motor skill issues (eg cerebal palsy) it is REALLY hard to accurately tell how severely someone is affected. ....anyway that is good that you're open to sign..one of my friends has a friend whose son has cerebal palsy (no hearing loss) and Signs as his primary language.
You know, I would definitly opt for the CI in your case....being implanted could help him a LOT!!!!! I know I've read about multihandicapped kids getting implanted lately.
Click to expand...
Right now we think that it's just from being a premiee, we got some test (CT scan) ran yesterday so now it's just a matter of waiting until we talk to the doctor. After we find out more about that then we'll know what we're looking at and what to do.
 
All I was saying was, you shouldnt be suprised that doctors are pushing the implant or aides on kids. Hearing families with deaf children get pressured into implanting thier children on a daily basis, how do I know this? I see it everyday.
Click to expand...

Yes I can understand you as hearing person. I didn't know that the doctor push deaf children of hearing parents to CI... wow... oh dear.

I'm surprise about this because the doctors are supposing to respect your decision instead of push you with your decision.
 
I also stated I would share my opinion as another mother experiencing the same thing for my children(I have two deaf children). But mine is not for CI... I told her this so she would know what to expect when talking to me about my opinion and reasons behind my descision. Im not here to sway or disrespect anyones opinion. I dont know where you got that from, and Im sorry you misinterpreted my post.
Click to expand...

I can understand that it's normal for every parents to get/share the information about CI before they make their decision.

Yes, I know you are not here to disrespect anyone. I read your posts often but I am only surprised that the doctor pressure you with your decision because they are supposing to respect your decision, that's all.
 
Ellie, When I was thinking about geting ci, first of all i use the pro/con chart to help. Also i was thinking about it for about 6 months, then went in for examination etc.. and have been approved recently last month, so i again ahveto think more and really think about it. Its hard i know, cuz I have to think about my future, about what people will view at me from deaf communitity etc..

When I was growing up, my parent was faced with the same questions and stuff about getting me a ci. but my parent said no and rather wait til i was older and understand about it etc.. But to be honest, i sometime wish my parent did implant me when i was a child, oh well, but i know when i was 12 yr old, i would probably go thru rebellious time with my parent and fight with them about the ci, but that was because i was being brainwashed by the deaf community about how ci was bad for you etc..

So basically, follow your heart, your guts, and think of the pro and cons of the implants and the child's life which lays ahead of him. I would believe that if u implant ur son now, there will be a few years (maybe, maybe it wont happen) of rebellious time about the cochlear implant, but I beleive that your son will outgrow that part and be fine with it..

Good luck, follow yoru heart, your guts, and the pro/cons of getting a ci..
 
Well I'm kinda conservative about implantation, but if hearing aids aren't really having any effect IMPLANT him!!!!
 
darkangel8603 said:
Ellie, When I was thinking about geting ci, first of all i use the pro/con chart to help. Also i was thinking about it for about 6 months, then went in for examination etc.. and have been approved recently last month, so i again ahveto think more and really think about it. Its hard i know, cuz I have to think about my future, about what people will view at me from deaf communitity etc..

When I was growing up, my parent was faced with the same questions and stuff about getting me a ci. but my parent said no and rather wait til i was older and understand about it etc.. But to be honest, i sometime wish my parent did implant me when i was a child, oh well, but i know when i was 12 yr old, i would probably go thru rebellious time with my parent and fight with them about the ci, but that was because i was being brainwashed by the deaf community about how ci was bad for you etc..

So basically, follow your heart, your guts, and think of the pro and cons of the implants and the child's life which lays ahead of him. I would believe that if u implant ur son now, there will be a few years (maybe, maybe it wont happen) of rebellious time about the cochlear implant, but I beleive that your son will outgrow that part and be fine with it..

Good luck, follow yoru heart, your guts, and the pro/cons of getting a ci..
Click to expand...


Hey thanks for the advice, from everyone. My husband and I have been talking about it alot lately and I think we are going to get the implant if we can.
 
YAY!!!!!!! That is WONDERFUL!!!!! I mean it doesn't sound like there's any major downsides, and it sounds like you're OK with Sign and everything....I think most folks on here (except for the extreme major anti-CIers) would have anything against implanting your son.....
 
I made the appointment today to talk to the doctor about the CT scans that were ran last Wed. So that we can talk to him about weather or not John can get an implant. I'll find out more on Aug. 12th when we go.
 
Our daughter, getting three years old in august received her (Bi-lateral) CI in september.
I cannot describe the joy in her eyes when she recognised sounds, the thrill when we feel when she puts the CI back on her head when it falls off, the words that she now - after 10 months - starts to immitate, the kick she gets when she recognises her sisters voice calling her from the floor above (She'd sign "listen" and her sisters name.)
We are blissed with little miracles every day. It's beautifull.
We still use sign, since she started communicating with that before she got CI, but she now starts to initiate speech.

The audiologists tuned up her "sound" slowly. Apart from 2 incidents, a chair making a scraping noise over the floor, she has never been afraid or cried. Again, I think because the "power" was very low in the beginning.

But every child is different. I've heared about parents that forced the CI on the child, but imagine when you've never heared in your life. Sounds are spooky.
So, have them start off real low and your child will enjoy it.
 
That is great Ellie, i wish you all good luck and hope that the implant will successfully help your son. If it does, be prepared to see the excitement in his eyes> :fingersx: :eek: :giggle:
 
Back
Top