Psychology of Parents on CI

[WeeBeastie]

Speech Therapist: their job is to train the child how to speak. They are not qualified to advise parents their beliefs regarding communication and education methods.

While I completely agree with your breakdown of the different roles, there is one small detail I'd like to clarify.

Speech therapists are generally known as Speech & Language Pathologists and have a dual role. While they do work on speech, they should also be able to support kids in only language. So, a SLP could be assigned to do more than "train the child how to speak" if they are experiencing a language delay not related to speech.

Unfortunately, I have never met a SLP who knows ASL - the actual language. My daughter started speech therapy at 4 months old and has 3 SLPs assigned to her in 3+ years. I had to teach the first 2 basic signs and she still has no one to help her with ASL because no one knows it... even her ToD. The school doesn't even "know who would do that" and this is a school with a dedicated DHH program. My daughter has a language delay and needs language therapy. Her current SLP is amazing and knows quite a bit sign but readily admits she's not fully equipped to work with an ASL using child.

 

[faire_jour]

While I completely agree with your breakdown of the different roles, there is one small detail I'd like to clarify.

Speech therapists are generally known as Speech & Language Pathologists and have a dual role. While they do work on speech, they should also be able to support kids in only language. So, a SLP could be assigned to do more than "train the child how to speak" if they are experiencing a language delay not related to speech.

Unfortunately, I have never met a SLP who knows ASL - the actual language. My daughter started speech therapy at 4 months old and has 3 SLPs assigned to her in 3+ years. I had to teach the first 2 basic signs and she still has no one to help her with ASL because no one knows it... even her ToD. The school doesn't even "know who would do that" and this is a school with a dedicated DHH program. My daughter has a language delay and needs language therapy. Her current SLP is amazing and knows quite a bit sign but readily admits she's not fully equipped to work with an ASL using child.

(I have known several SLP's who know ASL including some who went to Gallaudet)

Yes, SLP's are trained in both speech and LANGUAGE. They assess and teach both the sounds that come out of the mouth (speech) and the language (expressive and receptive) behind the speech.

 

[Juli-terp-to-be]

What did the parents lose? Want to hear more about what they said.

Wish I could watch youtube easily but internet speed's not high enough yet

Ok, since the two implantations haven't taken, and all this time the parents were heavily discouraged from using ASL with their child. I assume that some time was lost in gaining this child any language skills. Any parent would feel some guilt when given another option and then looking back at the wasted time.

All of the above statement is purely My Opinion ONLY. I am a parent I am going on how I would feel if I was in their situation.

 

[deafdyke]

nd has 3 SLPs assigned to her in 3+ years. I had to teach the first 2 basic signs and she still has no one to help her with ASL because no one knows it... even her ToD. The school doesn't even "know who would do that" and this is a school with a dedicated DHH program. My daughter has a language delay and needs language therapy. Her current SLP is amazing and knows quite a bit sign but readily admits she's not fully equipped to work with an ASL using child.

That's b/c most garden variety SLPs tend to only have training with articulation and mild spoken language issues. Just like the way most mainstream special ed teachers training tends to focus on LDs with very minimal training on how to teach other issues.
WeeBeastie, You may find that Wisconsin School for the Deaf is MUCH better. In states with really crappy mainstream dhh (or mainstream classic special ed) the specialized Schools for the Deaf (and sometimes the Schools for the Blind) tend to be REALLY good.

 

[WeeBeastie]

WeeBeastie, You may find that Wisconsin School for the Deaf is MUCH better. In states with really crappy mainstream dhh (or mainstream classic special ed) the specialized Schools for the Deaf (and sometimes the Schools for the Blind) tend to be REALLY good.

We will be moving to Delavan next spring so she gets 1 year of preschool at WSD before Kindergarten. We would have loved to move this year, but financially we can't swing it.

 

[dogmom]

Weebeastie and dd
we are maybe an hour and 1/2 from Delavan; I've been on the school website

 

[jillio]

While I completely agree with your breakdown of the different roles, there is one small detail I'd like to clarify.

Speech therapists are generally known as Speech & Language Pathologists and have a dual role. While they do work on speech, they should also be able to support kids in only language. So, a SLP could be assigned to do more than "train the child how to speak" if they are experiencing a language delay not related to speech.

Unfortunately, I have never met a SLP who knows ASL - the actual language. My daughter started speech therapy at 4 months old and has 3 SLPs assigned to her in 3+ years. I had to teach the first 2 basic signs and she still has no one to help her with ASL because no one knows it... even her ToD. The school doesn't even "know who would do that" and this is a school with a dedicated DHH program. My daughter has a language delay and needs language therapy. Her current SLP is amazing and knows quite a bit sign but readily admits she's not fully equipped to work with an ASL using child.

An SLP's training is like that os a special education teacher. Their knowledge of deafness and deaf culture is a very minimum part of the information they study. They actually study all communication disorders, and much more time is spent on things like aphasia than on prelingual deafness. Why...lower incidence in the general population.

 

[WeeBeastie]

Weebeastie and dd
we are maybe an hour and 1/2 from Delavan; I've been on the school website

Hello down there!

 

[deafskeptic]

I think the CI doctors should just only focus on the surgery, medical aspects, and recovery, the audiologists focus on fixing the ear, and leave language development options to professionals in the educational system but with the problems of all the attempts of different educational policies regarding to deaf education, I dont think it would really solve the problem. I think keeping both languages true to their forms should be valued...keep spoken English in the spoken form and ASL in the signed form so eliminate the concept of Total Communication. As for oralism only, too many risks for deaf children falling behind.

Well said.

 

[dogmom]

sent u PM, WeeBeastie....


I honestly have never met a SLP who knew ASL or had any experience with Deaf kids either-

 

[natty_4ever]

I think the CI doctors should just only focus on the surgery, medical aspects, and recovery, the audiologists focus on fixing the ear, and leave language development options to professionals in the educational system but with the problems of all the attempts of different educational policies regarding to deaf education, I dont think it would really solve the problem. I think keeping both languages true to their forms should be valued...keep spoken English in the spoken form and ASL in the signed form so eliminate the concept of Total Communication. As for oralism only, too many risks for deaf children falling behind.

I totally agree with you Shel.

I respect the decisions of parents of deaf children so long as what they are doing is beneficial to the child, I hope that those who choose a CI for their child choose to do so for a valid reason. What I hate is when they believe it "cures" deafness, or that it will save them from using ASL, or anything along those lines. What they need is to consider the child first and foremost, and concentrate on their NEEDS, not how deaf they will look or anything else.

 

[deafdyke]

I think there is a huge vested financial interest between the speech therapists, CI centers, and the audiologists and they all should rot in jail for screwing with these deaf children's lives!

YES!!!!! One wonders if oral only and CIs would be so pushed if not for the profit factor. Yes, there's nothing wrong with implanting kids/people who REALLY need it. I am ALL for that. I think it's a GREAT option for people who have totally maxed out their hearing aids, or who don't get a lot of benifit from aids, or who may have issues like auditory nereopathy, tintituas and significent recruitment.
But, the implant pushing seems to be almost like the Big Pharma thing. I remember a few years ago, being IMd by some random person who wanted me to look into CI. And it does seem like ... remember Hearing Exchange? That was pretty much a CI pushing site. (it was under the guise of an "inclusive" site, but the second a new mom posted Nazi Lady would be all over them pushing them towards CIs and oral only education) I remember the chats there....ALL it was was " CI CI we love CI!"

Their knowledge of deafness and deaf culture is a very minimum part of the information they study. They actually study all communication disorders, and much more time is spent on things like aphasia than on prelingual deafness. Why...lower incidence in the general population.

Apasia? You sure you don't mean apraxia? I thought apasia was really rare overall in the pediatric population. (only seen in pediatric strokes) Or maybe that's b/c apasia is more of interest to ASHA instructors.

What they need is to consider the child first and foremost, and concentrate on their NEEDS, not how deaf they will look or anything else.

YES. They need to be CHILD centered. Meaning they need to offer the child a BUNCH of methodologies and see which ones the kid takes to. Yes, its hard....yes its complicated. But on the other hand...I've just met and known SO many oral only kids who feel like oral only did not give them enough.....sigh....

 

[Bebonang]

Parents: they have to do all the assorted research, do all the fighting for their child, and do not take the medical professional’s advices as gospel truth. They have to face their fear with the unknown and start talking to many people such as deaf people, parents of deaf children, educators, and learn from them and their experiences. Most importantly of all, they have to watch and listen to their child and rely on their feelings whether a communication method or education method is correct choice or not. Most importantly, don’t stay in denial for too long because it’ll damage your relationship with your child and could potentially have adverse impact on their development. Lastly, it is quite okay for you all to think outside the box if you feel the prescribed advice was unsatisfactory.

That also goes for all hearing AGBell and hearing authorities whether in education or social setting.

Just accept us as deaf people and not fix us. Visual is very important and lipreading only can help few hard of hearies and some deafies if they are expert at it. Over all, it is really important that ASL is important for us to understand sign language, even without spoken language. We don't have to speak if we don't want to. It is all up to us, not force us to be in the hearing environment like elementary schools and high schools, even in colleges.

The thing is why we must suffer every time we lost time in trying to communicate with speech and listening? Not good at all and that is why it is called "delayed" and waste time. ASL is the best answer for many deafies and hard of hearies. There I have sign (spoken as a phrase)

 

[Eseff]

WOW! I wonder how old this is? See that's why I am so glad I'm here. My son goes to Children's Hospital Oakland but only transfered there recently to go through the cochlear implant process, and let me tell you that everyone there SEE signs. EVERYONE! They are supposed to sign everytime a deaf person is around. I wonder if this story got them into trouble or something. They also told me to sign with my son and that our whole extended family needs to sign, and if they (the extended family) don't understand why to call them and they can explain. They also said that he will need sign for the rest of his life, but I don't know if that is specific to my son's case.

 

[A]

It's always a good idea to using sign languages. If you know your son is benefiting from CI, don't feel discouraged, He'll come around and talk -- if you have speech therapy and talk around him or to him when you know he can understand you. Otherwise, he'll keep on using sign language if he can't hear himself and others very well. Another thing is that many deaf people haven't started speech therapy until really late in life. My mom told me I started talking when I was three years old. Some started much later. So with CI, you really have much less to fear than parents from the older generations.

With ASL, You know your child is capable no matter what. just promote alot of reading.

 

[GrendelQ]

WOW! I wonder how old this is? See that's why I am so glad I'm here. My son goes to Children's Hospital Oakland but only transfered there recently to go through the cochlear implant process, and let me tell you that everyone there SEE signs. EVERYONE! They are supposed to sign everytime a deaf person is around. I wonder if this story got them into trouble or something. They also told me to sign with my son and that our whole extended family needs to sign, and if they (the extended family) don't understand why to call them and they can explain. They also said that he will need sign for the rest of his life, but I don't know if that is specific to my son's case.

Hi Eseff! I've found nearly the same thing at Children's Hospital Boston's CI center over the past 3 years that we've been there with my now-4YO: every audiologist, ENT, SLP we've encountered uses ASL, switching over to something more like SEE when they are simcom-ing to hold conversations with both hearing and deaf in the room. They were very excited that we chose to go forward with both CI / spoken English and ASL for Li-Li, they very much encourage language access across multiple channels. Hang out in hardcore AVT environments and you'll hear people say that these centers and early intervention programs place too much emphasis on sign, interact with the Deaf online community and you'll find that they think there's an anti-ASL attitude -- it's all relative . We parents just need to do our homework and assess which approach or combination of approaches works -- and remain open to changing direction as our children develop and begin to take part in the decision-making.

 

[deafdyke]

and let me tell you that everyone there SEE signs. EVERYONE!

. Are there a lot of kids in the program who sign too?

They also said that he will need sign for the rest of his life, but I don't know if that is specific to my son's case.

eseff that is AWESOME!!!!! Don't think of it as "needing it" Think of it as "he'll have the oppetunity to be BILINGAL" and function both with and without his CI.

every audiologist, ENT, SLP we've encountered uses ASL, switching over to something more like SEE when they are simcom-ing to hold conversations with both hearing and deaf in the room. They were very excited that we chose to go forward with both CI / spoken English and ASL for Li-Li, they very much encourage language access across multiple channels. Hang out in hardcore AVT environments and you'll hear people say that these centers and early intervention programs place too much emphasis on sign, interact with the Deaf online community and you'll find that they think there's an anti-ASL attitude -- it's all relative . We parents just need to do our homework and assess which approach or combination of approaches works -- and remain open to changing direction as our children develop and begin to take part in the decision-making.

Grendel, I think many of us believe that the communication process needs to be child centered. That's why we think that the early intervention needs to be "full toolbox" with access to good quality ASL/Sign programs AND good quality speech programs, so the child can help decide.

 

[jillio]

YES!!!!! One wonders if oral only and CIs would be so pushed if not for the profit factor. Yes, there's nothing wrong with implanting kids/people who REALLY need it. I am ALL for that. I think it's a GREAT option for people who have totally maxed out their hearing aids, or who don't get a lot of benifit from aids, or who may have issues like auditory nereopathy, tintituas and significent recruitment.
But, the implant pushing seems to be almost like the Big Pharma thing. I remember a few years ago, being IMd by some random person who wanted me to look into CI. And it does seem like ... remember Hearing Exchange? That was pretty much a CI pushing site. (it was under the guise of an "inclusive" site, but the second a new mom posted Nazi Lady would be all over them pushing them towards CIs and oral only education) I remember the chats there....ALL it was was " CI CI we love CI!"
Apasia? You sure you don't mean apraxia? I thought apasia was really rare overall in the pediatric population. (only seen in pediatric strokes) Or maybe that's b/c apasia is more of interest to ASHA instructors.
YES. They need to be CHILD centered. Meaning they need to offer the child a BUNCH of methodologies and see which ones the kid takes to. Yes, its hard....yes its complicated. But on the other hand...I've just met and known SO many oral only kids who feel like oral only did not give them enough.....sigh....

No, I meant aphasia. SLP's are generally trained, not specialty trained. Therefore, they are trained to work with all populations (age wise) and all communication disorders. The incidence of acquired disorders is much higher in the overall population than deafness is.

 

[drphil]

I understand the urgency in dealing with "deaf" children with Cochlear Implants is to assist their "speaking ability" to develop. Here in Ontario-children are processed quickly on this matter. Much quicker than adults! ASL doesn't deal with speaking. Thus to me it makes no sense to wait till a child is an adult to deal with a Cochlear Implant. I guess it depends on how one perceives -- speaking in our society vs ASL signing. I guess the label Oral deaf fits me- as I triggered the process way back in 2007 when I became completely deaf from "profound hearing impaired".

 

[deafdyke]

jillo, really? A pediatric SLP would know more about aphasia then about how to teach a kid with hearing loss?!?! I can imagine a general SLP knowing more about aphasia(working with stroke victims) but a PEDIATRIC one?
I did know that most general specialized teachers and service providers only have a bare minimum of training with dhh kids. I wonder if that could be one of the reasons that auditory verbal programs appear to acheive a lot of sucess...that deaf kids are seeing a highly trained specificly to work with deaf kids speeh therapist.

Thus to me it makes no sense to wait till a child is an adult to deal with a Cochlear Implant.

DrPhil, that debate is pretty much over. Nothing wrong with implanting right off the bat canidates, as well as kids who don't get a lot of benifit from HAs. I'm ALL for that.