Faced with tough decision

[Waltersfam07]

Hello everyone! As some of you may already know our son is 11 months old and is severe to profoundly bilaterally deaf. He currently has bilateraly HAs but recieves little benefit from them therefore they have placed him in the CI program at St. Louis Childrens hospital.
Our feelings:
-Why take the risk of surgery when we feel he is perfect just the way he was given to us.
-We also of course want only the best for him and we feel this includes introducing him to sound as early as possible. His HAs let him hear noises such as a dog barking(still a whisper to him) basically loud environmental noises.
-We are currently taking courses in ASL because we feel no matter what pur decision he will always be deaf and should always sign. We also feel that we want him to embrace what he is so we want him to always take part in deaf events and such. We want him to be excepted in any situation he is faced with.
-He is still very young and just started walking within the last month, a concern we have with CIs is the balance/equilibrium, we don't want to mess with what skills he already has.
-How great are the risks of surgery? We have of course heard horror stories that the implant makes the childs ear itch all the time, infections, multiple surgeries to correct other issues? What has been your experience?
-We ultimately wanted to let him make the decision but have since been imforemed that he would recieves little benefit from waiting I.e. The spoken word might not make sence to him.

These are just a few of our many feelings we are going through right now! I would appreciate any insight! You all have been so generous with my introductory thread, Thank you!

 

[deafgal001]

I don't think CI really mess with balance. I never noticed a balance problem on myself or others.
Benefits and Risks of Cochlear Implants
The risks are very rare.

It's more of a personal choice, and whatever choice you make, it is going to be a journey and you have to be willing to use alot of energy to help your child whatever you can especially reading and writing (and speaking if it is CI/HA route-- but I've heard of deaf having the ability to speak very well with limit hearing).

If you don't like implanting your child young, you can wait til he is 3 or 4 years or whatever age. You must be willing to accept that once he gets a CI, Spoken English will be like his 2nd language (like Spanish learning English). He'll make it just like many kids did who were implanted at that age. Just make sure he have a language at all like ASL so he won't be delay congitively .

 

[posts from hell]

Getting a CI is a heated topic here...

I'll say my piece though. I am severely deaf, which means I am only 85% deaf. I identify myself as culturally Deaf. A lot of my friends have CI's.

I personally don't think it is necessary, along with a few of my friends who actually have CI's.

I'm grateful you are taking the time to learn ASL, and I 100% strongly encourage you to keep at it. For a deaf child using a visual language is much easier than relying on CI/hearing aids to listen to the spoken language. Many on here will attest to that.

With a CI you can be able to sit through a day of orientation for your job... You can understand whats going on... But.. When you're done with the day - you will wind up very very very exhausted from all the mental labor on both receiving the message aurally and visually (lipreading, etc) if you didn't have an interpreter.

And in regards of "He's perfect as he is"... I feel the same. My daughter is Deaf too. I'll say this much (and i am expecting the other hearing parents to come in here to chastise me) - Are you for cloning, genetic engineering of humans? If not, why try to "fix" him?

 

[GrendelQ]

Appears you are already taking the most important step already: making certain you have communication options and working on language development.

We adopted my daughter at 1YO and found that she was/is profoundly deaf. Early intervention services provided by the state were amazing! We had a signing SLP as our EI representative, even before we had an official diagnosis, medically. A Deaf mentor provided by the state Deaf & HOH Commissions explained our resources (this PDF is an example of the info we were given), including technologies (videophones, alarms, captioning, etc,), family language development (family sign in the home, ASL courses, parent infant programs specific to Deaf/HOH children, playgroups), and preK education (a range of schools with programs for deaf children: from oral and auditory/verbal to TC to bi-bi, as well as mainstream options). We immediately had access to Deaf & HOH clinics at local hospitals and language specialists, which provided us with an understanding of how different paths would lead to different options in terms of language development. We got very lucky, and found placement for her at an ASL language staff daycare within the bi-bi school for the deaf she nows attends as a preK-er, and so she had a jumpstart in learning ASL and interacting with a mix of deaf, HOH, CODA, hearing kids, deaf teenagers volunteering, and deaf and/or ASL-using staff.

There are so many great options for our little ones, and many right answers, you just have to sort out which one is right for your child, for your family.

I had access to learning ASL right away, so for us, it was a no-brainer to get cracking and provide immediate access to language the first week home with our child. Typically hearing children are awash in language during their waking hours from well before they are born, so we had a whole lot of catching up to do. Little ones need so much input and it was (and is!) a race to maintain a level of comfort with the language and keep that constant flow available!

We also started with 2 hearing aids, progressively ratcheting up the level of amplification, but we, too, found that only our EXTRAORDINARILY LOUD DOG barking beside her could reach her, no access to speech, just a great deal of continuous verbalizing at dolphin-like levels. She was initially identified as a potential candidate for a CI, and then the testing began, and took several months to schedule and complete. She was nearly 2 when her first CI was implanted. Surgery is the only negative aspect for us -- it's awful to have to commit to surgery for a child to receive what is for most -- not all - enormous benefits of a CI -- but once past that day, there's little downside, from my experience. In fact, we did it again a year later, after witnessing our child developing two languages with ease: both ASL and spoken English come easily to her, and I don't think she's stopped talking since activation . The ONLY thing I'd do differently if I could: both ears at once, rather than waiting -- 2 has made a world of difference.

We chose a bi-bi school with an auditory access class tailored to CI/HA kids instead of mainstreaming opps, several highly respected auditory-verbal, Cued speech, TC, SEE-focused programs -- all great options, but just not the right mix for us. We know she'd develop spoken language faster, and be even more articulate if we committed to AVT, but our tradeoff is that she's getting TWO beautiful languages and access to more people and easier interactions and accessible opportunities than if we chose one or the other, and it's just taking a little bit more time as we balance resources.

Again, there's no one right answer any of us could give you -- although we can each speak to what's working right now for us and/or our children, and provide you with the resources we used in making (or justifying ) our decisions. The challenge is finding the right answer for your child and your family.

www.cicircle.org << This site includes stories, resources, and access to a Yahoo group of those who've been there, done that in terms of CIs, and are very willing to share experiences, both good AND bad.

 

[GrendelQ]

I'll say this much (and i am expecting the other hearing parents to come in here to chastise me) ...

Just stepping up to do my duty <<CHASTISING PFH >>

On a more serious note: why not talk about your daughter's experiences, positive and negative, rather than slam an approach with which you don't have direct experience?

Watersfam, there are some great, positive examples of parenting today's deaf kids unaided here that I hope you get to read (I'm thinking of Rockdrummer, Jillio and WeeBeastie offhand, who have incredibly well-informed accounts, and there are so many others).

 

[posts from hell]

Just stepping up to do my duty <<CHASTISING PFH >>

On a more serious note: why not talk about your daughter's experiences, positive and negative, rather than slam an approach with which you don't have direct experience?

Watersfam, there are some great, positive examples of parenting today's deaf kids unaided here that I hope you get to read (I'm thinking of Rockdrummer, Jillio and WeeBeastie offhand, who have incredibly well-informed accounts, and there are so many others).

Which is better, talking about my daughters ongoing experience, or the experience that has taken place (me)?

The biggest changes in my life was in my 20's (like many others) when I finally got to see what I was missing, like many others. These changes are what we're trying to inform the general public of. It's like we can't give you the experiences, you have to walk in our shoes...

Even my mother who raised me wonderfully - i still feel she has only 10% idea of what its like.

Going voice-off, ASL ALL the way - made my life so much easier, literally.

Example in hand:
My friend who has two CI's that he rarely uses these days... got pulled over by the cops recently this week for something..
The cop stood behind the door frame, with that flash light in your face.

Now: Can an user with CI understand that? You basically can't see the cop.

So my friend started signing to the cop. The cop put the light down, moved forward, and said "I don't sign. Can you lip read?" My friend said a little, and wound up using paper to communicate.

There are still times even with CI's you still have to resort to paper/pen no matter how good you are with CI's.

Hence the reason we're saying its best to have ASL no matter what.

Like Faire Jour saying a high % of deaf marries the deaf... It's because of that level of understanding and communication.

 

[rockdrummer]

If the CI is successful your child can gain many benefits from it regardless of the opinions of others. That said you should also be aware that in many cases (more than the medical community will tell you) the CI has no benefit. My child is a case in point. Even though there were no benefits there were also no complications with the surgury aspect other than the surgeon improperly implanted the first CI and he had to go for a second. Neither proved beneficial and I would echo what others have said about sticking with sign language regardless of your choice. The ability to communicate with your child in my view is the most important thing.

I wish you and your family all the best!!

 

[Jiro]

The ability to communicate with your child in my view is the most important thing.

Since your child has a failed CI and you don't know ASL well... how do you communicate with your child?

 

[GrendelQ]

Wirelessly posted

Just stepping up to do my duty <<CHASTISING PFH >>

On a more serious note: why not talk about your daughter's experiences, positive and negative, rather than slam an approach with which you don't have direct experience?

Watersfam, there are some great, positive examples of parenting today's deaf kids unaided here that I hope you get to read (I'm thinking of Rockdrummer, Jillio and WeeBeastie offhand, who have incredibly well-informed accounts, and there are so many others).

Which is better, talking about my daughters ongoing experience, or the experience that has taken place (me)?

The biggest changes in my life was in my 20's (like many others) when I finally got to see what I was missing, like many others. These changes are what we're trying to inform the general public of. It's like we can't give you the experiences, you have to walk in our shoes...

Even my mother who raised me wonderfully - i still feel she has only 10% idea of what its like.

Going voice-off, ASL ALL the way - made my life so much easier, literally.

Example in hand:
My friend who has two CI's that he rarely uses these days... got pulled over by the cops recently this week for something..
The cop stood behind the door frame, with that flash light in your face.

Now: Can an user with CI understand that? You basically can't see the cop.

So my friend started signing to the cop. The cop put the light down, moved forward, and said "I don't sign. Can you lip read?" My friend said a little, and wound up using paper to communicate.

There are still times even with CI's you still have to resort to paper/pen no matter how good you are with CI's.

Hence the reason we're saying its best to have ASL no matter what.

Like Faire Jour saying a high % of deaf marries the deaf... It's because of that level of understanding and communication.

I think both accounts -- yours as a deaf person, tours as a parent of a deaf child -- are extremely valuable. But I also find your reflections and current experience as you put your knowledge into practice in today's academic/ technology environment into practice with your own daughter to be most relevant!

 

[rockdrummer]

Since your child has a failed CI and you don't know ASL well... how do you communicate with your child?

I use whatever means I can to get the point and concept across. In addition I am improving my ASL skills (currently in class) but you have to remember there are many ways to communicate. I don't think the method of communication is as important as the ability to communicate.

 

[deafgal001]

I use whatever means I can to get the point and concept across. In addition I am improving my ASL skills (currently in class) but you have to remember there are many ways to communicate. I don't think the method of communication is as important as the ability to communicate.

While that's true because my son use home sign all the time. But like spoken English, using a language that the majority use is also good for deaf's well being (especially those who have no access to sounds). English been around a long time, and now we have language art class, spellling class, etc. that grew from English. I feel the same way about ASL, and how people express themselves with it (ASL poetry and such)

Keep up with the good job on ASL.

 

[rockdrummer]

While that's true because my son use home sign all the time. But like spoken English, using a language that the majority use is also good for deaf's well being (especially those who have no access to sounds). English been around a long time, and now we have language art class, spellling class, etc. that grew from English. I feel the same way about ASL, and how people express themselves with it (ASL poetry and such)

Keep up with the good job on ASL.

No argument there and we are working towards that but since you can't just snap your finger and be proficient in sign language you do the best you can with what you have.

 

[Jiro]

I use whatever means I can to get the point and concept across. In addition I am improving my ASL skills (currently in class) but you have to remember there are many ways to communicate. I don't think the method of communication is as important as the ability to communicate.

well - I respectfully disagree. The ABILITY to communicate and the METHOD of communication are equally important. Everybody has the ability to communicate but they need the method of communication.

The infant has the ability to communicate (ie. in his brain - "I want milk") but they lack the method of communication to effectively communicate his/her needs since his speech development is in its infancy level which is why they cry or make noise or point at something.

So you only simply need to master the method of communication that your child knows the best. good luck to both of you!

 

[deafgal001]

I thought he have been using SEE? And was explaining the those type of communication option.

 

[shel90]

Hello there!

I am profoundly deaf and not a CI user. I am happy with the way I am being an ASL and spoken English user.

My brother is also profoudly deaf with no CI. He is also very happy with who is he is as well.

Getting a CI for your child should be a personal decision with you and your family. It is a big decision but as long as your child is exposed to both worlds (the Deaf and the hearing world), I think he will grow up to be confident with himself.

Best of luck!

 

[overthepond]

Go with what your heart tells you.

Enjoy your baby.



I am 30 something profoundly deaf person who was brought up as oral, although BSL was my first lang until I found my voice at 5 years old and never stopped talking since, and using HA's and I got CI 2 years ago, I say CI beats HA hands down but it had not stopped me immersing in Deaf and Hearing worlds, I still sign with deaf people and spoken lang with hearing people, I work with the public and CI had helped me alot with understanding them, now days with the implant, I rarely need to ask them to repeat which was an issue with my confidence pre implant.

As I had my implant for 2 and a bit years, I had no complications from it. I had no problems whatsover post operation. I have met alot of CI users (some are teenagers with 15+ years of using CI) they, still are very happy with their implant.

 

[rockdrummer]

well - I respectfully disagree. The ABILITY to communicate and the METHOD of communication are equally important. Everybody has the ability to communicate but they need the method of communication.

The infant has the ability to communicate (ie. in his brain - "I want milk") but they lack the method of communication to effectively communicate his/her needs since his speech development is in its infancy level which is why they cry or make noise or point at something.

So you only simply need to master the method of communication that your child knows the best. good luck to both of you!

In my view, you use whatever means you have to communicate. You do the best you can with what you have. You don't just start out being proficient neither does a prelinguall deaf child. You can't just snap your fingers and poof you are communicating with proper language. That takes time. For some longer than others. So what you do in the mean time is use whatever means you can to communicate while working towards proper language. That is my opinon from my experience. I have no scientific facts to back that up.

 

[Jiro]

In my view, you use whatever means you have to communicate. You do the best you can with what you have. You don't just start out being proficient neither does a prelinguall deaf child. You can't just snap your fingers and poof you are communicating with proper language. That takes time. For some longer than others. So what you do in the mean time is use whatever means you can to communicate while working towards proper language. That is my opinon from my experience. I have not scientific facts to back that up.

yea I understand. But it's just that there is an overwhelming amount of cases where the auditory option (HA/CI/etc) failed and then they started learning sign language - a significant amount of time delay.

if the child was born deaf, one may say it is good idea to take the safest option while exploring a various methods of auditory communications - the ASL. At least there won't be any delay in language development. If CI/HA option works out well, the child can simply stop using ASL.

just saying.

 

[rockdrummer]

yea I understand. But it's just that there is an overwhelming amount of cases where the auditory option (HA/CI/etc) failed and then they started learning sign language - a significant amount of time delay.

if the child was born deaf, one may say it is good idea to take the safest option while exploring a various methods of auditory communications - the ASL. At least there won't be any delay in language development. If CI/HA option works out well, the child can simply stop using ASL.

just saying.

Which is why I said no matter the decision to keep up with sign language. Also, in the context of an 11 month old prelingually deaf infant and a hearing parent not proficient in ASL, I would use whatever means I could to communicate until language is developed. I am no expert and that is simply my opinion.

 

[rockdrummer]

While that's true because my son use home sign all the time. But like spoken English, using a language that the majority use is also good for deaf's well being (especially those who have no access to sounds). English been around a long time, and now we have language art class, spellling class, etc. that grew from English. I feel the same way about ASL, and how people express themselves with it (ASL poetry and such)

Keep up with the good job on ASL.

Thank you