Son's CI surgery

[momtotoes]

Momtotoes, I can understand that. My best advice however, is not to reject anything just b/c it's "not mainstream"..... Definitly give her the tools to be mainstreamed, so she can parcipate in the hearing world. But also, be open to things like Sign,Cued Speech etc. If you offer those tools to her, and she rejects them......that's fine. There are some kids who are exposed to both, and end up dropping sign for whatever reason. I hope I'm not being annoying about this, but I just think that no dhh kid should ever have to ask their parents why they didn'tdo sign or speech or whatever. I really think sometimes ideology gets in the way.Do a child centered approach and see what Toes does best with.

Good advice.

We are doing some sign with her and plan to continue to. I am not sure how far we will go with it. But there is a part of me that just doesn't like the idea that she will have to rely on electronics to communicate. I want her to be able to communicate without the CI if necessary. And I don't want her to be able to say "Sorry, Mom, I don't have my CI on" when we're at the pool and I am trying to correct her when she is misbehaving. ;-)

We also would like her to develop some lipreading ability. I had a good friend in college with a profound hearing loss that lipread 100%. He was (and still is, I imagine) and amazing individual.

Most of the local language pathologists are pushing a strict "Audio-Verbal" approach that relies solely on CIs or HAs without any other form of communication. To the degree that they tell you to cover your mouth when speaking so your child doesn't read lips.

I find that to be the most bizarre thing. But maybe that's just me.

 

[momtotoes]

24 months that could be 12... precious time lost...

This is so heartbreaking!

I am glad to hear how well your daughter is doing now. It gives me hope.

 

[deafdyke]

We are doing some sign with her and plan to continue to. I am not sure how far we will go with it.

Well, look at it this way....Learning Sign means that she'll get to become fluent in a second language! Yes, it's hard for hearing people to learn....but I really believe that most parents need to meet their dhh kid 1.2 way, and learn sign if they decide on oral training. Just b/c it's really frustrating for us to have to go boo-be-bah all the time. Speech therapy very rarely 100% corrects the speech and language deficencies, that many dhh kids have. It gives them some oral skills....total oral failure is pretty rare, if I recall correctly, but I think too that being totally caught up with speech and language (like same verbal IQ as a hearing person) is not too common.

But there is a part of me that just doesn't like the idea that she will have to rely on electronics to communicate. I want her to be able to communicate without the CI if necessary.

WOOHOO!!!! That is excellent! I really really applaud you! I mean AG Bell's motto is "Freedom through Listening and Talking" but you only have that

We also would like her to develop some lipreading ability. I had a good friend in college with a profound hearing loss that lipread 100%. He was (and still is, I imagine) and amazing individual.

Lipreading's a good skill to have....and it does sound like you've actually known some real live dhh folks! Some of the parents out there *shakes head*

Most of the local language pathologists are pushing a strict "Audio-Verbal" approach that relies solely on CIs or HAs without any other form of communication. To the degree that they tell you to cover your mouth when speaking so your child doesn't read lips.

I find that to be the most bizarre thing. But maybe that's just me.

Oh tell me about it. I think auditory verbal therapy as a supplement is fine...like taking Erin to one for supplemental language and speech therapy is a good idear. But, adopting it as a lifestyle thing......it really does seem like the reason why it's sucessful is b/c the families who have adopted hyperprogramming, tend to be attracted to it.
It can be "therapy 24/7" While some therapy is good, I think that kids also need time to be kids too! .......Are there any oral schools or schools for the deaf nearby? Those could be a better option.

 

[kayla123]

We also would like her to develop some lipreading ability. I think the lipreading comes natural to them. Even though my daughter is in AV therapy, her lipreading skills are amazing. While in therapy or working with her at home i do cover her mouth because after all the whole point of AV therapy is learning to listen, but when at the pool or taking a bath, her lipreading skills are great. Yes a lot of people do find it bizarre that you would cover your mouth when talking to a deaf child, but thats up to you and the approach you want to do. In my daughters case, it has worked out for her but if you go for that approach, it's alot of hard work all day everyday especially in the beginning and then it starts to become more natural to the child to listen to someone when they are in a conversation. Good luck with whatever you choose for your child.

 

[Lillys dad]

Momtotoes, I dont think we have met so "Hello!". Lilly is 2 1/2 years old. Profound in both ears. Connexin 26 (genetic senseoneural deafness) is the culprit. Similar story as yours. Diagnosed at 11 months, hearing aids for 6 months. CI at 1 1/2 years. The progress has been truly amazing. I completely agree with your opinion of sign and lip reading. A spoke with a teacher who strongly discouraged me from exposing her to asl. I then spoke to the administrator at her school that said "as long as you keep speaking as her main focus, teach her all of the asl you want". I have been teaching her some sign (as I learn it), and she loves it.
Every night when I take off her CI, we use ASL. I also teach her some very basic lip reading.
If you are interested in teaching her some ASL, look up "signing time for babies" on the internet. It is a wonderful and easy way for you both to begin to learn ASL.
Teach her as many ways to communicate as possible. When she is older, it will be her choice how she wishes to communicate. So educate her on all of her options.

 

[Cloggy]

Rearding lipreading... these kids learn that automatically.

Lotte has had us fooled for about 4 hours where we spoke to her, only finding out later that both the CI's were turned off. Full conversation at the diner-table etc... They are smart.... !!!

Even now, when going to bed and her CI off, I can speak normally - (or without voice) and she will understand me..

 

[Boult]

Most of the local language pathologists are pushing a strict "Audio-Verbal" approach that relies solely on CIs or HAs without any other form of communication. To the degree that they tell you to cover your mouth when speaking so your child doesn't read lips.

I find that to be the most bizarre thing. But maybe that's just me.

No, it is not bizarre thing to me It's helpful so that child needs to hear to understand speech than read (cheat eh) lip while listening. (while they are young that is)

I can tell you that I wish I wish I had ci right way if I was born today and forgo all those speech therapy and asl and skip all those special education schools.

 

[Boult]

Momtotoes, I dont think we have met so "Hello!". Lilly is 2 1/2 years old. Profound in both ears. Connexin 26 (genetic senseoneural deafness) is the culprit. Similar story as yours. Diagnosed at 11 months, hearing aids for 6 months. CI at 1 1/2 years. The progress has been truly amazing. I completely agree with your opinion of sign and lip reading. A spoke with a teacher who strongly discouraged me from exposing her to asl. I then spoke to the administrator at her school that said "as long as you keep speaking as her main focus, teach her all of the asl you want". I have been teaching her some sign (as I learn it), and she loves it.
Every night when I take off her CI, we use ASL. I also teach her some very basic lip reading.
If you are interested in teaching her some ASL, look up "signing time for babies" on the internet. It is a wonderful and easy way for you both to begin to learn ASL.
Teach her as many ways to communicate as possible. When she is older, it will be her choice how she wishes to communicate. So educate her on all of her options.

Yes, speech emphasis than sign emphasis.

go to this page: http://bionicear.com/support/betterliving/jfp_loudclear.asp and download the PDF titled "A Sign of the Times: Cochlear Implants and Total Communication" you will see that the Total Communication with speech emphasis excels better than those with sign emphasis.

(you and others, can download all of them to read if you wants.. it is for parents and educators)

Also Bionic Beat for AB users: http://bionicear.com/support/getconnected/bionicbeat.asp but you can check them out if you want to.

 

[deafdyke]

I wish I had ci right way if I was born today and forgo all those speech therapy and asl and skip all those special education schools.

Not nessarily......Yes there are CI superstars that don't have to have speech or special education, but the majority of CI kids still have to have a lot of speech therapy and special education. There have always been superstars who have acheived......even with the primative body worn aids.

you will see that the Total Communication with speech emphasis excels better than those with sign emphasis.

Well I gotta say that I think that those in TC programs should maybe try to get private speech therapy. The TC vs oral might be a demographic thing....like oral people tend to be middle class and have extra money to spend on supplemental healthcare. There is ALSO no stats on verbal IQ. Verbal IQ measures how well a person has mastered the language. But yeah, I think that if a kid's in a TC program, they should maybe try to see a private speech therapist like an auditory verbal therapist or someone at an oral school for the deaf.
Momtotoes, You don't have to go full blown on the auditory verbal methodology. You can, if you want to opt for TC with supplemental auditory-verbal therapy. I think A-V-T is a good option for some kids. I just don't approve of it as a full blown lifestyle choice.

 

[jag]

Well I gotta say that I think that those in TC programs should maybe try to get private speech therapy. The TC vs oral might be a demographic thing....like oral people tend to be middle class and have extra money to spend on supplemental healthcare. .

Total communication is basically your 'full toolbox'.
It's used quite often. My kids have had it in the small rural school for years I know of many parents who've used it for years. You really do seem to have a problem with people who emphasise (sp?) oral and are middle class and 'high' achievers. One should always try to achieve the highest goal, in most cases here oral speech well enough to communicate without having to rely on interpetors is a great goal. and best achieved when access to hearing (CI) is given at an early age. Perhaps now that more young children are getting their CI"s at a younger age we'll see even more superstars who won't need to boo bee baa their way through HS.

 

[Cloggy]

The "high-achievers" from the past are the average ones now.

technology improved dramatically, children are implanted earlier... both reasons why possibilities have changed dramatically in the last years .... for the better.

 

[Boult]

Actually...
AG Bell supports its mission: Advocating Independence through Listening and Talking!

That's the correct motto. DD

 

[Boult]

Total communication is basically your 'full toolbox'.
It's used quite often. My kids have had it in the small rural school for years I know of many parents who've used it for years. You really do seem to have a problem with people who emphasise (sp?) oral and are middle class and 'high' achievers. One should always try to achieve the highest goal, in most cases here oral speech well enough to communicate without having to rely on interpetors is a great goal. and best achieved when access to hearing (CI) is given at an early age. Perhaps now that more young children are getting their CI"s at a younger age we'll see even more superstars who won't need to boo bee baa their way through HS.

You got it right on what I am trying to say about what I wished.

no "boo bee baa" throughout their life is the ultimate goal!

 

[Boult]

The "high-achievers" from the past are the average ones now.

technology improved dramatically, children are implanted earlier... both reasons why possibilities have changed dramatically in the last years .... for the better.

Indeed!

 

[deafdyke]

Total communication is basically your 'full toolbox'.

Well yeah.......but I mean the oral part of TC is very often not develped enough. That's one reason why some hearing parents decide that they want their kids to be oral......b/c some TC programs don't concentrate enough on speech skills.

You really do seem to have a problem with people who emphasise (sp?) oral and are middle class and 'high' achievers

No I don't......I am a sociologist, that's all. I mean it does make sense. A family that is very high achieing....like they prep their kids to go to Harvard or another Ivy League school, and who overprogram their kids, are going to have more sucess with going oral, then a family that might not even have health insurance!
Boult and Cloggy, I think that the number of kids who have mastered spoken language is still relatively low. I mean are their verbal IQs very high? Are they still in speech therapy? Yes, there's a percentage who have done really really well.....but there's still also kids who actually NEED sign/TC, or who have significent language issues.

 

[Cloggy]

..........Boult and Cloggy, I think that the number of kids who have mastered spoken language is still relatively low. I mean are their verbal IQs very high? Are they still in speech therapy? Yes, there's a percentage who have done really really well.....but there's still also kids who actually NEED sign/TC, or who have significent language issues.

You can't keep on blaming high IQ's for Ci-success.You cannot keep on showing the lower end of the spectrum of CI-users as being the norm, and the high end as High IQ.
You think that "the number of kids who have mastered spoken language is still relatively low" but how do you judge this. Are you looking at children implanted in the last 5 year... 10 years.... 15.. ???
Look at children implanted before 5 in the last 5 years.... Don't judge these children by the results of children implanted at age 10, 10 years ago. These are two very different groups.

I know you mean well, but around me I see children succeed with CI. But then, I'm seeing children max age 7 implanted early in life....

My goal is to have my daughter be fluent in dutch, norwegian, eventually english and she has to know her sign... Any idea how to do this without CI ??

 

[jag]

My goal is to have my daughter be fluent in dutch, norwegian, eventually english and she has to know her sign... Any idea how to do this without CI ??

tsk tsk tsk Cloggy, you shouldn't be such a high achiever.

I watched a toddler (hearing) from Germany grow up here until the age of 5 I think. She went back to her country just before her younger sister was born. Languages have come very easy for her, my guess is because she learned 2 before she was even 5 yr's old. So Lotte will probably do quite well with languages concidering she is already successfully speaking 2. It will be interesting to watch her journey with languages in the years to come.

by the way, being in a classroom with her typical peers gives her that many more 'speech' therapists. we learn by doing and interacting with them is a very fun learning expericence for her if she is kept in a classroom all the time with children who have not developed speaking at an age appropriate level learning to speak would be harder, being with children who speak at age level gives her all those wonderful roll models.

It sounds like she's been progressing quite well since being in a integrated setting.

 

[greema]

I suck and only just logged back in here.

I have been reading posts for over an hour now and I am totally hooked!

Erin Toes had her surgery on 9/25. Her initial stimulation is scheduled for 10/20.

Erin is 14 months old. She was *finally* diagnosed with a severe to profound loss at 9 months, aided at 10 months. We knew much earlier that there was a major issue. But, we fumbled upon a very overly optimistic audiologist who kept saying "let's give it another few weeks...".

It was a very frustrating process. Erin failed her newborn screenings and then passed an ABR at 2 months old. We had a period of time where we thought everything was fine, but by the time she was 4 months old I started becoming concerned about her continued lack of response to sound.

My husband and my mother and my mother-in-law all told me I was imagining things. But I knew better. Our daughter could not hear.

When Erin was first aided she showed an improvement in her hearing and vocalization. But, over the next few months, she lost a lot of what she had gained. We found out that her hearing was getting worse and the aids were no longer providing near enough benefit for her to develop speech.

I know it is a controversial issue, but as hearing parents, we can't help but want Erin to be mainstreamed as much as possible. So, we made the very difficult decision of going ahead with the CI.

So, here we are.

momtotoes, glad to see you back on here -- I am VERY happy you made that last statement (last paragraph) -- there are some on here that are against implanting babies and toddlers and some seem to think that there are hearing parents out there that are just saying, "Let's implant our son/daughter" without any thought to the fact that surgery is involved. There may be some parents out there like that but I know that for the majority of hearing parents they did their research -- and I bet you considered the CI as a LAST resort? That is what our deaf son Fragmenter and his wife went through before deciding to have our deaf grandson implanted. (I'm sure you know by now that I am first generation deaf in three generations.) And I wish the best for Erin's activation but like I have been reading on here, it is best to have low expecations.

 

[Cloggy]

tsk tsk tsk Cloggy, you shouldn't be such a high achiever. ......

LOL

Not a high achiever... her brother and sister (9 and 7 years old) are allready there... Like you said... it's a natural accomplishment.....

IF YOU CAN HEAR !!!

 

[momtotoes]

That is what our deaf son Fragmenter

LOL! I have read some of the exchanges between you and Fragmenter and I couldn't figure why he was so hard on you, making cracks about your age and such!

Now I understand! I had no idea you were mother and son!



It all makes sense now.