CI blog for my daughter

[Drew's Dad]

Thanks for all the info Jag. Seems like we have to have a long talk with our EI adviser on Tuesday when she comes to visit again. We were not aware that our daughter should be attending the classes prior to CI, we thought it was only for her benefit after she got the implant. I guess it seems that we are already behind in the process. Wish I would have found this place sooner.

Right now we are just waiting for the surgeon's office to call back with the appointment for the surgery. We have already ordered the CI.

I appreciate everyones help here. This is by far the best forum I have ever visited in my life.

If I may be so bold, I'd like to suggest to you that you may want to move into a more aggressive stance when it comes to getting what you feel is right for your daughter.

For example, don't simply wait for the surgeon's office to call back with the appointment. You've already determined that CI is the way to go, so at this point the clock is ticking. Make them aware that you want the surgery set up now. Don't let them steal time through inaction.

Are all the steps completed to submit the request to the insurance company? If not, make sure the surgeon has what is needed, and make it clear that you want it submitted ASAP so if the insurance company drags their feet you won't have lost any time.

In general, I suggest you take the view that you are responsible to grab any resources that are out there to help your child. You may find excellent professionals that can guide you to each of these pieces of the puzzle, but many times they will not because they either lack knowledge, experience, or could just be lazy. Investigate other blogs and forums (including this one) and if you see something that you think your daughter should have, do what it takes to get it. Others won't fight for you as hard as you will.

I hope this doesn't offend you, but I know that Drew would not be doing as well as he is without my wife and I seeking out knowledge and applying it on our own. Here is an example of how to interview a cochlear implant surgeon, from our dealings just over a year ago.

 

[loml]

Hello dragon_image18,

Nice to meet you!

I would like to make mention here of an early intervention, communication option available for you and your family. The system is called Cued Speech. It is a system that can provide the English language to your daughter, visually. It can also be used after implantation in conjunction with AVT training, etc. I would be happy to answer any question that you may have. Please feel free to pm me.

Here is a contact person for you. Joan, although located in California, is a wealth of information, focusing on providing for families located on the western coast of the United states.

West Coast Cued Speech Program
348 Cernon St., Suite D
Vacaville, CA 95688
707.448.4060 V/TDD
LRupert601@aol.com

You will find an article discussing Cued Speech at: Help Kids Hear - Communication Strategies - Cued Speech

 

[dragon_image18]

If I may be so bold, I'd like to suggest to you that you may want to move into a more aggressive stance when it comes to getting what you feel is right for your daughter....

I hope this doesn't offend you, but I know that Drew would not be doing as well as he is without my wife and I seeking out knowledge and applying it on our own.

Hi Drew's Dad. I really appreciate the reply. Honestly, I don't think we have been very aggressive in the process and have just been letting the process control the events. We are probably doing a minimum of what we should be doing. All your help over the last few days, and reading your blog has really opened our eyes to the situation. Unfortunately we have already wasted so much time already. We will be having a long discussion tonight on how we can improve what we are doing. Obviously we want what is best for our daughter. We were just too ignorant and trusting of the system. I have been making a long to do list after reading all the posts here. Looks like this will be a new day as we open our eyes to what is going on and try to make a difference in our daughter's life. To do as much as we can for her success. Thanks again.

 

[Drew's Dad]

Hi Drew's Dad. I really appreciate the reply. Honestly, I don't think we have been very aggressive in the process and have just been letting the process control the events. We are probably doing a minimum of what we should be doing. All your help over the last few days, and reading your blog has really opened our eyes to the situation. Unfortunately we have already wasted so much time already. We will be having a long discussion tonight on how we can improve what we are doing. Obviously we want what is best for our daughter. We were just too ignorant and trusting of the system. I have been making a long to do list after reading all the posts here. Looks like this will be a new day as we open our eyes to what is going on and try to make a difference in our daughter's life. To do as much as we can for her success. Thanks again.

You're welcome. It's obvious that you are involved in your daughter's life, the process, and that you care - which are the most important things of all.

 

[jillio]

Hi Drew's Dad. I really appreciate the reply. Honestly, I don't think we have been very aggressive in the process and have just been letting the process control the events. We are probably doing a minimum of what we should be doing. All your help over the last few days, and reading your blog has really opened our eyes to the situation. Unfortunately we have already wasted so much time already. We will be having a long discussion tonight on how we can improve what we are doing. Obviously we want what is best for our daughter. We were just too ignorant and trusting of the system. I have been making a long to do list after reading all the posts here. Looks like this will be a new day as we open our eyes to what is going on and try to make a difference in our daughter's life. To do as much as we can for her success. Thanks again.

I urge you to inform yourself regarding all of the issues your daughter will face as a deaf child. Be assertive in your dealings with the professionals, and do not accept whatever they tell you. I would also urge you to visit other forums and threads on this board to get an idea of what deaf adults who have grown up as prelingually deafened children have experienced as the result of parents accepting professionals word and not questioning what they were told completely. It is only natural, when one has no experience with deafness to accept the professionals as having all the answers, but it is rarely the case. Particularly in the medical field. They rarely consider the spycho-social aspects of prelingual deafness, yet those are issues that you, as a parent should also be taking into account from the very beginning.

I would ask you what communication method you are using with your duaghter as you wait for CI. Early language exposure is critical for the acquisition of language. If a child is unable to acquire language naturally,they will not be able to internalize the functions of language, and it will create delays that are difficult, if not impossible, to remediate. Using sign in the interim will expose your daughter to language in a medium that she can readily receive and process, and will lay a foundation of acquisition that will facillitate her learning spoken language post CI. The great preponderance of the research indicates that the prelingually deafened children implanted with CI that function at the highest levels socially, academically, and psychologicallly are exposed to both sign and speech.

There are a couple of books on the market. They are older books, but the material is extremely relevent. One is "Deafness and Childhood Development" and the other is "Sound and Sign". They are written by two of the most well respected researchers into childhood deafness, and are meant to provide information to parents and those working with deaf children. I highly reccommend that you get ahold of a copy of both, as they will enlighten you to issues that you yourself will not think of, nor will the medical professionals and audis make you aware of these issues. I think you would find them valuable resources at various stages of your daughter's development. I know I did.

I would also recommend that you visit other forums and threads on AD to gain information regarding the experience of growing up as a deaf child. No one hearing can tell you what it is to be a deaf child. Only an adult who has grown up deaf can provide you with that insight, and it is valuable information for you, indeed. I know that I, as a hearing parent, had no idea what it was to be a deaf child. Nor did any of the professionals I encountered. The deaf community is your most valuable resource.

I would also caution you not to concentrate so much on your daughter's ears and her ability to speak that you forget the whole child connected to the ears and the mouth. She is in for extensive therapy in learning to use her CI, and in learning to speak. It is sometimes easy to get so caught up in that cycle that we forget about the other needs our children have. One of those most basic needs is have access to others that are the same as she.

I wish you luck on your journey. From experience, I can tell you that raising a deaf child is an amazing experience. If you remain open to all options and all views, you are in for a learning experience that will not only benefit your daughter, but will result in your personal growth, as well.

 

[R2D2]

Lots of good thoughts and advice in this thread!

 

[rick48]

Hi Drew's Dad. I really appreciate the reply. Honestly, I don't think we have been very aggressive in the process and have just been letting the process control the events. We are probably doing a minimum of what we should be doing. All your help over the last few days, and reading your blog has really opened our eyes to the situation. Unfortunately we have already wasted so much time already. We will be having a long discussion tonight on how we can improve what we are doing. Obviously we want what is best for our daughter. We were just too ignorant and trusting of the system. I have been making a long to do list after reading all the posts here. Looks like this will be a new day as we open our eyes to what is going on and try to make a difference in our daughter's life. To do as much as we can for her success. Thanks again.

dragon,

If I can add to your list, I would seriously consider visiting other forums such as the ci circle and hearing exchange because they are populated with many more parents of ci children then say this forum if what you are looking for is parental feedback and advice. ci circle is an especially good resource as its moderators have made it non-confrontational. No arguing is ever allowed.

Good luck,
Rick

 

[Bear]

Best of luck to Kairi (and your entire family). Drew also has the Connexion-26 mutation, perhaps his blog will help you in some way.

Drew's Dad,

What exactly is that in the area I bolded. Never heard of this. Care to educate me?

 

[deafdyke]

But Rick, does CI circle have a mix of both oral and signers? I wouldn't recommend Hearing Exchange except for pure oral folks. At this point, I think that its best for dragon_Image to find a NEUTRAL non-biased source of support.
Dragon_image..............actually one thing that you could do, is have your baby evaluated by therapists at the School for the Deaf.
While its true that you can't really do agressive speech therapy until she gets her CI, you can get her some speech therapy. Some kids can actually develop speech even with minimal hearing. Also, she's not too young to learn Sign....
One thing to worry about is a speech disabilty called apraxia. It's very common in dhh kids as a whole. Like someone could hear and understand pretty well, but not be able to physically say things.
It's not too soon to start early intervention..........BUT, it's also not too late. A lot of kids didn't get intervention until they were two or three until relatively recently.
Oh, and definitly go with a full toolbox, especially since she didn't have sucess with HA.....It does seem like a lot of the CI oral sucesses, either lost their hearing relatively late (like they have infant memory and their brain knows how to hear) or they did get a foundation (although kind of limited eg a small percentage of words or some sounds) of hearing from hearing aids.
Contact Hands and Voices : Hands & Voices
and the American Society for Deaf Children. They offer free first year for newly identifyed families!

Program for Newly Identified Families

Through the generous sponsorship of an anonymous donor, families of newly identified deaf and hard of hearing children may join ASDC for a year at no cost through First Year Free. First Year Free families receive all the benefits of ASDC membership, including The Endeavor, parent information and referral line, Lending Library, and more. If you are the parent of a newly identified deaf or hard of hearing child and wish to receive information about enrolling in First Year Free, please call ASDC at 800/942-ASDC.

.....American Society for Deaf Children
and their affliated listserv:Archives of PARENTDEAF-HH@LISTSERV.KENT.EDU

 

[shel90]

But Rick, does CI circle have a mix of both oral and signers? I wouldn't recommend Hearing Exchange except for pure oral folks. At this point, I think that its best for dragon_Image to find a NEUTRAL non-biased source of support.
Dragon_image..............actually one thing that you could do, is have your baby evaluated by therapists at the School for the Deaf.
While its true that you can't really do agressive speech therapy until she gets her CI, you can get her some speech therapy. Some kids can actually develop speech even with minimal hearing. Also, she's not too young to learn Sign....
One thing to worry about is a speech disabilty called apraxia. It's very common in dhh kids as a whole. Like someone could hear and understand pretty well, but not be able to physically say things.
It's not too soon to start early intervention..........BUT, it's also not too late. A lot of kids didn't get intervention until they were two or three until relatively recently.
Oh, and definitly go with a full toolbox, especially since she didn't have sucess with HA.....It does seem like a lot of the CI oral sucesses, either lost their hearing relatively late (like they have infant memory and their brain knows how to hear) or they did get a foundation (although kind of limited eg a small percentage of words or some sounds) of hearing from hearing aids.
Contact Hands and Voices : Hands & Voices
and the American Society for Deaf Children. They offer free first year for newly identifyed families!
.....American Society for Deaf Children
and their affliated listserv:Archives of PARENTDEAF-HH@LISTSERV.KENT.EDU

I agree..I think it is best to give sources that support both sign and oral not one or the other.

 

[SkullChick]

have your baby evaluated by therapists at the School for the Deaf.

Hold on right there. Oregon school for the Deaf is not unbiased. They are very Pro-ASL and all teachers uses ASL no voices at all from what I remember long time ago when I was in middle school (I'm 20 now) I requested for speech therapist and school told me no they don't offer speech therapy at all only lipreading therapy that's it. So if you want some kind of therapy you'll have to do it outside of oregon school for the deaf.
From my experiences (don't forget I'm from Oregon since birth to age 19) NWRESD is way to go they're very unbiased and neutral and far the best support they will provide ANYTHING parents wish for their child to have.

 

[shel90]

Hold on right there. Oregon school for the Deaf is not unbiased. They are very Pro-ASL and all teachers uses ASL no voices at all from what I remember long time ago when I was in middle school (I'm 20 now) I requested for speech therapist and school told me no they don't offer speech therapy at all only lipreading therapy that's it. So if you want some kind of therapy you'll have to do it outside of oregon school for the deaf.
From my experiences (don't forget I'm from Oregon since birth to age 19) NWRESD is way to go they're very unbiased and neutral and far the best support they will provide ANYTHING parents wish for their child to have.

By law, all schools are required to provide all kinds of services even the Deaf schools.

 

[SkullChick]

By law, all schools are required to provide all kinds of services even the Deaf schools.

I don't know, school told me no and I asked lipreading theraist about it she say school don't offer it only lipreading and none of other students that I and she know ever had any speech therapy only lipreading on campus only outside campus like private therapy.

 

[shel90]

I don't know, school told me no and I asked lipreading theraist about it she say school don't offer it only lipreading and none of other students that I and she know ever had any speech therapy only lipreading on campus only outside campus like private therapy.

That is strange..oh well.

 

[jillio]

I don't know, school told me no and I asked lipreading theraist about it she say school don't offer it only lipreading and none of other students that I and she know ever had any speech therapy only lipreading on campus only outside campus like private therapy.

Was it written into your IEP?

 

[rick48]

Can you all please stop.

This is not an oral v. sign thread.

Dragon is a parent of an infant about to get a ci. I gave her two forums that are heavily populated with ci parents, i.e., parents who are facing or who just recently faced the same decisions she is now facing for her daughter. Also, they have just had the same issues regarding insurance, etc., choice of implnat, early internvention services as well.

If you know of sources in addition to the ones that I provided, then please share them. Otherwise, take your debate elsewhere.

This is not a contest.
Rick

 

[vallee]

Hi,

I am a new user here. I have created a diary in the form of a blog for my 1yr old daughter who is about to have a cochlear implant done in the next few weeks. It pretty much takes the process from birth and I will continue it until she is old enough to take over.

[/URL]

I read your new posting, my daughter is also biracial - filipino or as she use to call herself jalapeno and America. At nine she does the whole culture - I'm filipino, Germany, and Russian. My daughter is hearing and I am the one deaf.

Everyone is giving great advise. One organization stood out to me - Hands and Voices. I am hoping they start up an chapter here in my state. One of my all times favorite blogs is by a mon in Italy with a son age 11 with CIs. An American Mom in Tuscany: Jordan's Cochlear Implant Story She has also written a book called Rallycaps. Drew's dad has a fantastic website. I find information I can use there as well.

Whatever brand of cochlear implants you decide for your daughter, the companies either Advanced Bionics, Med-El, or Cochlear have great websites. AB has a forum called hearing journeys http://www.hearingjourney.com/index.cfm?langid=1

Remember everyone has advise, everyone gives it, just go with your heart. Parent involvement is the key to a successful child, either hearing, hard of hearing, or deaf.

 

[Cloggy]

............
Remember everyone has advise, everyone gives it, just go with your heart. Parent involvement is the key to a successful child, either hearing, hard of hearing, or deaf.

................
I wish you luck on your journey. From experience, I can tell you that raising a deaf child is an amazing experience. If you remain open to all options and all views, you are in for a learning experience that will not only benefit your daughter, but will result in your personal growth, as well.

Same here ! - Totally agree with this.

 

[SkullChick]

Can you all please stop.

This is not an oral v. sign thread.

Dragon is a parent of an infant about to get a ci. I gave her two forums that are heavily populated with ci parents, i.e., parents who are facing or who just recently faced the same decisions she is now facing for her daughter. Also, they have just had the same issues regarding insurance, etc., choice of implnat, early internvention services as well.

If you know of sources in addition to the ones that I provided, then please share them. Otherwise, take your debate elsewhere.

This is not a contest.
Rick

What? I wasn't debating about oral vs sign? *very puzzled* I was just saying about UNbiased resources like have service for ALL kind of things like cued speech, sign, Bi-Bi, Oral, Total Comunication, everything.....?
Sheesh sorry for even trying to help and give services names since I'm from his area...

 

[shel90]

What? I wasn't debating about oral vs sign? *very puzzled* I was just saying about UNbiased resources like have service for ALL kind of things like cued speech, sign, Bi-Bi, Oral, Total Comunication, everything.....?
Sheesh sorry for even trying to help and give services names since I'm from his area...

I think he was referred to Deafdyke...