Toddler with hearing loss

deafdyke said:
And I know you're reluctant about CIs, but they can be a good option for some kids. You just gotta be careful they're not "selling" it to you.
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You hit the nail right on the head here! I feel like that's what they did to me. They "sold" me on it, like it was the obvious choice...not to mention using scare tactics.
 
ContessaC said:
You hit the nail right on the head here! I feel like that's what they did to me. They "sold" me on it, like it was the obvious choice...not to mention using scare tactics.
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What type of "scare tactics" are you referring to? I certainly wouldn't go back to that provider. People will say all kinds of things. It's up to the parents to do their job in thoroughly researching all sides of the coin and make informed choices.
 
hi I read your story my daughter was diagnosed with hearing loss at seven and is now 19 and is doing just fine with her hearing aids that she still were today
 
AshJagla said:
As for CI's... I'm still not sure how I feel. If it comes to the point that even with aids she can hear nothing, I will probably end up taking her to get the cochlear implants, but I'm holding out on making that kind of decision until we know what's going on for sure. It's hard to think of my little baby on the operation table.

Hmm, I wonder where my first post went?
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Understandable........it is a hard decision. But it's good that you're open-minded........I do think the decision will be a bit easier if she is a right off the bat canidate.
 
CSign said:
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What type of "scare tactics" are you referring to? I certainly wouldn't go back to that provider. People will say all kinds of things. It's up to the parents to do their job in thoroughly researching all sides of the coin and make informed choices.
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I will agree with you 100% that it is the parents job to research...having said that...when its your child and you've just been dealt a blow and stress is running high...you don't know what to do. Their comes a point where you need to trust your providers. Now I did plenty of research before moving forward with a CI for my son. And it more than likely is due to the fact that we had such a terrible provider/team working with us...

Example of tactics

"You don't want your son to be in danger and unable to ask someone for help do you, because he doesn't speak - do you?"

- Well of course not! I want Conner to be able to ask for help from anyone, if he needs it

"Are you willing to deny your son the chance to listen and appreicate Mozart"

...anyway I think you get the point, yes?
 
AshJagla said:
I think sign language is great! So no matter what, we will all be learning. Zoe has already learned her first sign, more, she does it all the time when she wants something now, it's a really good feeling to watch her communicate with us. Her 2 1/2 yr old sister is picking up signs even faster than my husband and I are and I have to be extra careful not to get the sign wrong or it confuses her.


Deafdyke - Oo good call! The audiologist in StL has already applied us to several schools for the deaf in MO and the IL school in Jacksonville in hopes that maybe their outreach programs could take us in. But I never thought of looking into TN or KY which we are really close to as well, I will have to do that. Thank you for the suggestion :)
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YEAH!!!!!!!! That is awesome! Be very careful with the St. Louis docs.....I know they can be rather strong/ biased re: CIs and oral schools......It's a tricky sitution here........ I've heard kinda unsavory things about the oral schools.(even the ones that are preschool/early intervention centers) .....BUT, on the other hand they can offer REALLY good speech therapy. I wonder if you could take advantage of them on a supplement basis, so that Zoe could take advantage of therapists who are really experianced in teaching deaf kids how to talk..... but then again depending what's available, in your area you might end up with a REALLY good speech therapist from ISD or a local dhh program.
 
ContessaC said:
I will agree with you 100% that it is the parents job to research...having said that...when its your child and you've just been dealt a blow and stress is running high...you don't know what to do. Their comes a point where you need to trust your providers. Now I did plenty of research before moving forward with a CI for my son. And it more than likely is due to the fact that we had such a terrible provider/team working with us...

Example of tactics

"You don't want your son to be in danger and unable to ask someone for help do you, because he doesn't speak - do you?"

- Well of course not! I want Conner to be able to ask for help from anyone, if he needs it

"Are you willing to deny your son the chance to listen and appreicate Mozart"

...anyway I think you get the point, yes?
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WHAT?!?!?!?! I mean yeah speech skills are useful but, god .........we don't approch sound the way a hearng person does............Sigh... fucking manipulative audists!!!!!
 
deafdyke said:
WHAT?!?!?!?! I mean yeah speech skills are useful but, god .........we don't approch sound the way a hearng person does............Sigh... fucking manipulative audists!!!!!
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I can only say that if I had to do it over again...I don't think I would have went for the CI - at least not until Conner was older. It wasn't until I moved to Jacksonville that I felt "good" about my son being deaf....for 5 years, I was made to feel like ASL was outdated and a thing of the past...and if Conner didn't begin speaking verbally he would be considered less intelligent. Needless to say when Conner didn't progress verbally...I fell into such a deep depression it adversely effected my entire family and health.
 
ContessaC said:
I can only say that if I had to do it over again...I don't think I would have went for the CI - at least not until Conner was older. It wasn't until I moved to Jacksonville that I felt "good" about my son being deaf....for 5 years, I was made to feel like ASL was outdated and a thing of the past...and if Conner didn't begin speaking verbally he would be considered less intelligent. Needless to say when Conner didn't progress verbally...I fell into such a deep depression it adversely effected my entire family and health.
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That is another reason why oral only can be REALLY unhealthy.... it pathologizes deafness. It makes the parent wish the kid was "normal" and "healthy")
 
deafdyke said:
That is another reason why oral only can be REALLY unhealthy.... it pathologizes deafness. It makes the parent wish the kid was "normal" and "healthy")
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Funny part? When Conner (at birth) failed his hearing test (funny story about the poor nurse who told me he referred on his ABR)...and everyone after that...I was sad, and cried...then after meeting and speaking with these doctors...I was basically told that it was my fault...my fault he was deaf...my fault he wasn't progressing...It was terrible. To this day the amount of GUILT I've been carrying around since my son was born is insane!

I met up with his first ENT last year...walked right up to him and said "Hi, I'm Conner's mom...remember me?" - he did. And proceeded to tell him to go fu*k himself....What I didn't know was how loud I was "whispering" ...and that no...Conner doesn't talk but tells me he loves me everyday and is a friggin ROCK STAR!

My son is deaf...not stupid, not "disabled" he just can't hear all of the assholes around him!
 
ContessaC said:
I will agree with you 100% that it is the parents job to research...having said that...when its your child and you've just been dealt a blow and stress is running high...you don't know what to do. Their comes a point where you need to trust your providers. Now I did plenty of research before moving forward with a CI for my son. And it more than likely is due to the fact that we had such a terrible provider/team working with us...

Example of tactics

"You don't want your son to be in danger and unable to ask someone for help do you, because he doesn't speak - do you?"

- Well of course not! I want Conner to be able to ask for help from anyone, if he needs it

"Are you willing to deny your son the chance to listen and appreicate Mozart"

...anyway I think you get the point, yes?
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Huh. :dunno: I guess everyone gets scared of different things. I guess I was expecting something a bit more extreme...anyway....I think you get my point.

It's good this parent, like you and others is doing her research. As they say...knowledge is power. :)

Edit to add: BTW- I'm a parent of a deaf child too. I learned real quick to take things at face value, to do my own research and make my own determinations and not to rely on "professionals" to tell me how to raise my son.
 
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It's been awhile! For those of you who had read my opening post earlier and who are curious of the outcome of her ABR test, I wanted to update you.

Her test was in STL at Cardinal Glennon's Children's Hospital. They are so great, they let us stay in the room until she was out and they made her feel so comfortable during the sedation process. An hour and a half later they came out to the waiting room to get us. When we were back with our little girl they explained to us that they were unable to complete the test all the way through because the cochlea wasn't showing any response at all, that she is profoundly deaf with no measurable hearing. How according to that test she would be the perfect candidate for the CI on both ears, but how there was other testing that had to be done before we know if those will work for us either.

From my understanding the first 5 years of life are the most crucial in learning spoken language. I do not personally care if she can ever hear or not, of course as a family with no known deafness it was a shock at first, but we have been learning ASL as a family for about a month now and very few people in our lives seem to have issues of learning for her, so I know even if she can't get the CI that she will be just fine and it won't be a hardship and we won't be disappointed. But we've decided if she can get the CIs, since she has no residual hearing to destroy, we will get them, because we want her to have all options in life and not to have to be limited by other peoples knowledge... If she later decides to stop wearing the implants we will still all know ASL and we have absolutely no problem with that being the main source of communication between us. We also have a school for the HOH and Deaf nearby, so going to that school or a regular school will be her decision to make as well, but we plan to start her in pre-preK classes for the deaf to help her catch up and to give her the chance to socialize with other small children and toddlers with the same types of hearing loss.

Thanks so much for all the replies, it has meant a great deal to me.
 
AshJagla said:
It's been awhile! For those of you who had read my opening post earlier and who are curious of the outcome of her ABR test, I wanted to update you.

Her test was in STL at Cardinal Glennon's Children's Hospital. They are so great, they let us stay in the room until she was out and they made her feel so comfortable during the sedation process. An hour and a half later they came out to the waiting room to get us. When we were back with our little girl they explained to us that they were unable to complete the test all the way through because the cochlea wasn't showing any response at all, that she is profoundly deaf with no measurable hearing. How according to that test she would be the perfect candidate for the CI on both ears, but how there was other testing that had to be done before we know if those will work for us either.

From my understanding the first 5 years of life are the most crucial in learning spoken language. I do not personally care if she can ever hear or not, of course as a family with no known deafness it was a shock at first, but we have been learning ASL as a family for about a month now and very few people in our lives seem to have issues of learning for her, so I know even if she can't get the CI that she will be just fine and it won't be a hardship and we won't be disappointed. But we've decided if she can get the CIs, since she has no residual hearing to destroy, we will get them, because we want her to have all options in life and not to have to be limited by other peoples knowledge... If she later decides to stop wearing the implants we will still all know ASL and we have absolutely no problem with that being the main source of communication between us. We also have a school for the HOH and Deaf nearby, so going to that school or a regular school will be her decision to make as well, but we plan to start her in pre-preK classes for the deaf to help her catch up and to give her the chance to socialize with other small children and toddlers with the same types of hearing loss.

Thanks so much for all the replies, it has meant a great deal to me.
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AWESOME!!!!!! And how convenient is it that there's a school for the dhh nearby? You mention St Louis.....are you in St Louis? I know they can pressure parents into oral only, and the oral schools. While the oral schools can be a really good resource for speech therapy, they can also neglect asl and other areas. But if its an oral school you're looking into maybe also supplement with attendance at a sign using program too.
 
My husband was actually born and raised in Belleville IL which is really close to STL, we had lived there up until about 6 months ago when we moved to Harrisburg, IL so he could work as a coal miner. Seems like kind of a crap decision now that we know we're going to have to be driving back and forth to STL quite often, but he's making more money here and there's no arguing that our insurance is better and cheaper to us, so we'll just have to figure it out.

The school that is here is in Marion, I don't know much about it at this point, but I know it's probably not much compared to the schools in St Louis and I'm really hoping to get into an outreach program with one of those sometime soon. We've been contacted by CID and plan to work with them as well as we can from afar, I'm a bit confused as to what they can do for us and how often we will be in contact right now.. everything is happening so fast yet so slow.

It seems right now the mainstream thing to do is oral, and we fully support giving her that education, but we definitely want to make sure that she learns ASL as well, that way she can choose for herself which way she prefers to communicate. We are kind of in a rural area and it's really hard to find good resources around here, but I know that a 'hearing specialist' (I think that's what they called her) named Sarah who works with Child and Family Connections is going to start coming to our house often to work with Zoe though. I figure if I am unable to (or possibly even if I am able to) find a good educational program for children on ASL that I could enroll in SIUC or John A Logan for their adult ASL/Interpreting classes and try to teach her myself.

She's really great, very watchful, very social. It's easy to see that she really wants to communicate with us. She is 14mths old and has only been introduced to signs for about the past month and she signs more, eat, drink, up, bath, bubbles, open, and play, so we think she's doing pretty good. We are really proud of her :)
 
AshJagla said:
My husband was actually born and raised in Belleville IL which is really close to STL, we had lived there up until about 6 months ago when we moved to Harrisburg, IL so he could work as a coal miner. Seems like kind of a crap decision now that we know we're going to have to be driving back and forth to STL quite often, but he's making more money here and there's no arguing that our insurance is better and cheaper to us, so we'll just have to figure it out.

The school that is here is in Marion, I don't know much about it at this point, but I know it's probably not much compared to the schools in St Louis and I'm really hoping to get into an outreach program with one of those sometime soon. We've been contacted by CID and plan to work with them as well as we can from afar, I'm a bit confused as to what they can do for us and how often we will be in contact right now.. everything is happening so fast yet so slow.

It seems right now the mainstream thing to do is oral, and we fully support giving her that education, but we definitely want to make sure that she learns ASL as well, that way she can choose for herself which way she prefers to communicate. We are kind of in a rural area and it's really hard to find good resources around here, but I know that a 'hearing specialist' (I think that's what they called her) named Sarah who works with Child and Family Connections is going to start coming to our house often to work with Zoe though. I figure if I am unable to (or possibly even if I am able to) find a good educational program for children on ASL that I could enroll in SIUC or John A Logan for their adult ASL/Interpreting classes and try to teach her myself.

She's really great, very watchful, very social. It's easy to see that she really wants to communicate with us. She is 14mths old and has only been introduced to signs for about the past month and she signs more, eat, drink, up, bath, bubbles, open, and play, so we think she's doing pretty good. We are really proud of her :)
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Do you mean a regional school program? Those can be pretty good actually. Have you contacted Illnois School for the Deaf yet? That is SO cool that she likes to sign already! seriously, look into every and any resources for dhh kids. You might be surprised at what you can find. maybe there might be a child of deaf adults who lives nearby. Maybe in a few years you could move closer to better deaf Ed resources. Does the school in Marion use ASL\sign?
 
deafdyke said:
Do you mean a regional school program? Those can be pretty good actually. Have you contacted Illnois School for the Deaf yet? That is SO cool that she likes to sign already! seriously, look into every and any resources for dhh kids. You might be surprised at what you can find. maybe there might be a child of deaf adults who lives nearby. Maybe in a few years you could move closer to better deaf Ed resources. Does the school in Marion use ASL\sign?
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Yeah, basically. From what I understand, there are certain schools for the deaf that are able to give lessons to small children via the internet and video chat if you live in certain areas near the school but still too far away to commute reasonably. It would be a great tool for us on top of her weekly speech and hearing specialist sessions and that's what I'm currently looking for in our area, but I'm having a hard time finding any info on it.

I haven't gotten ahold of IL School for the Deaf yet, but plan to after our follow up apt on Friday. Not sure what resources they will have for us since they are even further from us than STL, but I do hear they have a really great summer family program that lasts a week every summer that we would be invited to. I think it's really great to find things that our 2 1/2 year old can be involved with too, she's such a sweetheart, I worry about not giving her enough attention during all of this.

The school in Marion takes those who speak and sign I believe, not sure what classes they have there for sure yet. And I was told last week that there is a... 'communications' school here in Harrisburg, but I'm kind of confused as to what they offer their students :hmm:

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I am more than okay with Zoe being deaf at this point, I know that she perfect and will grow up to be just fine, hearing or not. We will give her the option of ASL no matter what so that she can communicate with other people who are deaf and as a back up if she even if she can get the CIs. What we are most concerned about right now are all the syndromes, diseases, and birth defects that are associated with being born profoundly deaf.

Zoe has had a number of hurdles for us from the time that she was born to now, but the main concerns that are left are the fact that she has very low muscle tone in her trunk and face, she has the worst balance I have seen in an otherwise healthy 15mth old, and she favors her left side (drags her right foot when walking **with help, she can not walk on her own for more than a couple of steps before falling). My mom keeps bringing up things like Ushers Syndrome 1F that results in her going blind later in life, or things like cmv which I don't believe I have. I don't know if my gestational diabetes or 17p shots could have done anything to her in utero. Just really ready to do all the genetic counseling to make sure we don't have any serious medical problems on our hands, ya know?
 
AshJagla said:
Yeah, basically. From what I understand, there are certain schools for the deaf that are able to give lessons to small children via the internet and video chat if you live in certain areas near the school but still too far away to commute reasonably. It would be a great tool for us on top of her weekly speech and hearing specialist sessions and that's what I'm currently looking for in our area, but I'm having a hard time finding any info on it.

I haven't gotten ahold of IL School for the Deaf yet, but plan to after our follow up apt on Friday. Not sure what resources they will have for us since they are even further from us than STL, but I do hear they have a really great summer family program that lasts a week every summer that we would be invited to. I think it's really great to find things that our 2 1/2 year old can be involved with too, she's such a sweetheart, I worry about not giving her enough attention during all of this.

The school in Marion takes those who speak and sign I believe, not sure what classes they have there for sure yet. And I was told last week that there is a... 'communications' school here in Harrisburg, but I'm kind of confused as to what they offer their students :hmm:

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I am more than okay with Zoe being deaf at this point, I know that she perfect and will grow up to be just fine, hearing or not. We will give her the option of ASL no matter what so that she can communicate with other people who are deaf and as a back up if she even if she can get the CIs. What we are most concerned about right now are all the syndromes, diseases, and birth defects that are associated with being born profoundly deaf.

Zoe has had a number of hurdles for us from the time that she was born to now, but the main concerns that are left are the fact that she has very low muscle tone in her trunk and face, she has the worst balance I have seen in an otherwise healthy 15mth old, and she favors her left side (drags her right foot when walking **with help, she can not walk on her own for more than a couple of steps before falling). My mom keeps bringing up things like Ushers Syndrome 1F that results in her going blind later in life, or things like cmv which I don't believe I have. I don't know if my gestational diabetes or 17p shots could have done anything to her in utero. Just really ready to do all the genetic counseling to make sure we don't have any serious medical problems on our hands, ya know?
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Ash, that is AWESOME!!!!! ISD, may have online ASL tutors/lessons for you....and it's good that although you're in a rural area, there's a regional dhh program that uses ASL/speech.
I think Illnois is a very strong ASL using state. ...and that's doubly good that you're using ASL since shes got some facial tone issues. it sounds like you have everything under control! Word of advice regarding speech training. First check out the quality of the local early intervention services re:speech before looking into the oral school. You may not need super high quality spoken language services..your daughter may respond well to speech therapy that is just good quality.
 
deafdyke said:
Ash, that is AWESOME!!!!! ISD, may have online ASL tutors/lessons for you....and it's good that although you're in a rural area, there's a regional dhh program that uses ASL/speech.
I think Illnois is a very strong ASL using state. ...and that's doubly good that you're using ASL since shes got some facial tone issues. it sounds like you have everything under control! Word of advice regarding speech training. First check out the quality of the local early intervention services re:speech before looking into the oral school. You may not need super high quality spoken language services..your daughter may respond well to speech therapy that is just good quality.
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I hope so! My friend just bought me a college ASL book from her school and I have been reading it, most of the signs 'make sense' and are easy to remember, my biggest problem is ASL grammar. I have a hard time figuring out why sometimes "you" is at the beginning of a question and other times it has to be at the end of the question. And sometimes the difference between using your and you seems smudged. Like why say 'you name?' instead of 'What's your name?' Oh the woes of trying to learn a whole new language in a short amount of time lol

The EI lady that comes here every week seem really great, our speech therapist doesn't know a ton of signs, but mostly works on cognitive skills with Zoe for now anyway, which is great. I did notice that our service coordinator seems to be brushing off ASL as a 'no-need' thing to do since it seems everyone believes Zoe will be some CI miracle which shouldn't be counted on. I find it annoying to say the least, especially since my mother-in-law acts the same and we don't even know if she can even get the implants yet let alone if she will be successful at using them or if she'll want to.
 
AshJagla said:
I hope so! My friend just bought me a college ASL book from her school and I have been reading it, most of the signs 'make sense' and are easy to remember, my biggest problem is ASL grammar. I have a hard time figuring out why sometimes "you" is at the beginning of a question and other times it has to be at the end of the question. And sometimes the difference between using your and you seems smudged. Like why say 'you name?' instead of 'What's your name?' Oh the woes of trying to learn a whole new language in a short amount of time lol

The EI lady that comes here every week seem really great, our speech therapist doesn't know a ton of signs, but mostly works on cognitive skills with Zoe for now anyway, which is great. I did notice that our service coordinator seems to be brushing off ASL as a 'no-need' thing to do since it seems everyone believes Zoe will be some CI miracle which shouldn't be counted on. I find it annoying to say the least, especially since my mother-in-law acts the same and we don't even know if she can even get the implants yet let alone if she will be successful at using them or if she'll want to.
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Does she have any language goals that include ASL? You dictate her primary mode of communication- not the LEA. If it isn't written in her IFSP, call a meeting to get it written in. Regardless of hearing technology, ASL can still be her primary mode of communication.
 
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