Wednesday, April 16, 2008

Observations of CI Kids...And 8 mo.-old CI Activation

Occasionally, people prefer to comment by sending me private emails and one gentleman has sent me quite a few. He has provided me with an interesting perspective on various topics and for that I am grateful. I wished to share this latest email, which he gave me permission to post. I would like to read your comments before I comment. Are these observations biased or unbiased? Issues that he addresses include demographics, parental interaction, communication methods and English proficiency in the home. One hot topic as recently discussed on Val's blog is viewing the child as a complete, well-rounded child and identifying strengths and learning styles. As a teacher and Mamma, I dig that!

Observations of CI Kids

I have volunteered in several school and instructional settings over the past ten years or so. I have had opportunities to observe and visit with about 25 children with CI’s.
Ages range from pre-K to high school.
Families were both two-parent and single-parent. The number of single-parent families seems a little higher than the US average. It has been a longstanding observation that the stress of having a deaf child (for Hearing parents) tends to split marriages. As with public school students generally, a few families seem to be effectively no-parent, with the child showing evidence of a lack of adult interaction on an ongoing basis. (I can explain this in more detail later if you wish.)

Economic status varies widely. One or two are upper-income physician’s children. Most are middle-income to lower middle-income. Several are lower-income. As might be expected from our location (Texas), a sizeable minority are immigrant families that do not speak English in the home.

About half the families have at least one parent willing to learn Sign, including several of the immigrant families that do not yet have mastery of English. (Does that sound familiar?)

The kids overall do not match the poster child picture that many paint for CI kids. One child I met while volunteering in an ASL (for foreign language credit) class. He signed English and was very frustrated with the grammar and syntax of ASL. I never observed him to speak. When I asked his teachers and a few classmates, none of them had ever observed him to speak. I had known this teen for four years before I learned that he had a CI that he never used.

Most of the kids signed and spoke as the situation merited. They tended to use signed English since their teachers who signed used signed English. These kids seemed to speak well and be understood, although I did not have the opportunity to observe them with people who are not familiar with “Deaf speech”. Familiarity with Deaf speech makes a big difference in whether you are understood.

Social interactions seem to depend more on how outgoing the child is than whether or not the child has a CI. Very introverted kids do not socialize as much, CI or no.
In general, the CI kids seem to have language delays. Parents generally seem to have the idea that CI is a “magic fix” for their child (more on that later). To use a computer analogy, CI’s are narrow-band. There is no way a 24-channel or even a 100-channel CI can carry as much information as ‘normal’ hearing or vision. Even with a CI, teaching language to a deaf child without using visual language resources puts the child ‘way behind their hearing peers. Visual language can close that gap and bridge to English competence.

As far as “success” with CI, that really depends on definitions. The parents I have visited with either did not listen to or remember the informed consent information or proper informed consent was not given. These parents seem to expect their implanted child to hear as their hearing peers and speak as their hearing peers. By these standards, Rachel from Cochlearimplantonline is a CI “failure”. I asked hearing friends about her speech from her videos, and they all say Rachel “talks funny”. That is why I generally view CI’s as being “oversold”. There is an old saying “If your only tool is a hammer, every problem looks like a nail.” I see this operating in many areas in medicine, especially when dealing with deaf children.

In subsequent emails, he added...

BTW, in view of some other blog postings, another thought surfaces. For many, but not all, of the CI kids I have met and observed, the CI is like a narrowband connection, like a dial-up modem, compared to either "normal" hearing or visual language as a DSL or cable broadband. These kids do not get language exposure fast enough through their CI alone to avoid language delays. These kids need visual language to avoid the language delays. In signing families and in truly bilingual school settings (not just in name only), these kids are at parity or above compared to hearing peers. (I think that is what one blogger has referred to, though I am not completely sure.) That is also another reason that for these kids, AVT alone is a waste of time - not that it has no value, but that it is not sufficient and so burns valuable time.

As for AVT, I view AVT as both trivial and a waste of time. It is trivial because many parents already know that they cannot trust the public schools to do a complete job of educating their children. Parents must take a lot of time to teach their kids. AVT is a waste of time because it devours time needed for other aspects of education. With our children, I read to them a lot, not only children's books, but also C. S. Lewis, Tolkein, Melville, Shakespeare when they were pre-school. We also taught them about art. We do not have the resources you have in Italy, but we have several museums in a 4 to 5 hour drive that get world-class traveling exhibits. We taught them science, and history. We taught them how to shoot a bow and a pistol, how to safely use and sharpen knives, hatchets, and axes, and we taught them about plants, trees, and animals. Public schools generally do not cover these things in very much (or any) detail.

In the meantime, here is an Activation Video of an 8 month old...Jonathan! *OMG*


K.L. said...

Well. I'm not even sure where to start. When he says AVT takes away from time spent on other things, does he understand that AVT (and other methodologies) are mostly ways to communicate with your child, and that you can employ these techniques WHILE you are doing all of these other things he mentioned in the last paragraph?

VBnBama said...

I had to blog about this as well!
Like I said, we need to do a documentary and just show how little therapy would be noticed to the naked eye! We don't sit around and do therapy all day. Gage can shoot a gun too and he has a pocket knife. Kids are generally exposed to "life" as it applies to the family. AVT doesn't take LIFE away from the kids, it's actually the opposite. When some people stop to smell the roses...we smell, we feel, we touch, we talk about the roses. Love Ya, Jodi, oh and we look like goof balls...oh that's right, we are!

Dianrez said...

In my observations, these comments are closer to the truth than are claimed in some other CI blogs.

In all, the CI is only one tool, and an incomplete one at that. It may be the best one for aided hearing that we have. Its limitations need to be recognized and all possible tools employed, especially ASL, for each individual child.

This is not to say that ASL is a better tool. The problem is that it is severely underrated as an effective tool, especially by parents and AVT professionals.

Unknown said...

K.L., I agree with your comment (surprise, surprise)about incorporating AVT while doing all other's an ongoing integrating methodology.

Val - Surprised to see yourself!!?? I tried to post the pic of Brook and Gage not smiling-love that! Gage also is a MEAN four-wheelin' Dude. Likin' the rose analogy.

Dianrez - I agree with this:In all, the CI is only one tool, and an incomplete one at that. It may be the best one for aided hearing that we have. Its limitations need to be recognized and all possible tools employed, especially ASL, for each individual child.
The key element is parental involvement and other factors influence the level of such interaction. I appreciate your objectivity. Jodi

Valerie said...

wow Jodi, I guess I sparked a fire at my blog. The good news is it is open discussion. That is how we learn from each other.

That was a very interesting posting. A CI or hearing aid, or both are just one tool in a full toolbox. If you have a full toolbox you can build anything. The most important part of the toolbox are parents. With great parents, a child can feel successful.

Since I received my CI later in life, I had to do my therapy on my own. I know the effort it takes to learn sounds again. If done right then it is fun, exciting, and enjoyable. Then again who said learning is always going to be interesting.

I feel mushy so let me just say it, I love all these blogs. We may be far away in our own world, but since I am someone who has NEVER seen anyone with a CI, you guys are my lifeline. Yes, even at the audie's office I have never seen a CI on anything person in "real life."

Oh, my CI is a great dial up. It is such an upgrade from the no internet I had before.

mishkazena said...

What that man shared is more realistic. Not all deaf kids with cochlear implants have the same opportunities as Rachel and other kids, including yours. The C.I. is only a tool and it can be used to maximize the potential of the child's ability to hear and speak or be underutilized. There are many factors that determine the outcome of each child's c.i. usage.

However, I disagree with his assessment that Rachel is a cochlear implant failure. Though she may have some problems with the pronunciation of a letter due to her late cochlear implantation, her speech is fairly comprehensible, from what I was told. Most importantly she can understand pretty much what she hears.

Unknown said...

Val...(mushy Val)you are so funny! And cute! I read the comments on your blog and you did an excellent job leading the discussion, really interesting. I will agree, the CI for us has been (A)DSL. Hugs, Jodi
Check out the other Val's blog, she wrote a great one in response to this...

Anonymous said...

What this man has commented is very true as I work at a deaf contained classroom and I am seeing the same things that he so clearly described.

Many of these parents aren't willing to take the time to work with their deaf child, they don't even try to learn how to communicate with them at home and then when these children come to school, they are so hungry and desperate for human communication. I'm sure it is a torture for them to stay home during school breaks as they are frequently isolated from their deaf peers. Their parents do not even make any efforts for them to meet up with their deaf peers after school.

This man's comment is very much in reality with a lot of these deaf children these days.

I appreciate you listening and sharing this man's comment with all of us.

Unknown said...

I agree with your comment, unfortunately, a great deal depends on parental involvement and education.
I appreciate your comment about Rachel, who for me is the epitome of a cochlear implant success story...aside from the fact that I have no problem whatsoever with Rachel's speech... success for me has absolutely nothing to do with speech quality, it has to do with interpersonal communication skills.

Unknown said...

Sometimes we need to shed light on what not to do in order to identify what really needs to be done. I have no problem sharing the difficulties and problematic areas to improve a situation where it is possible.
It would be nice to make progress somewhere at some point in all of this blogging. I believe that the ASL-CI blog is a SHINING example of such. May it only continue. Jodi

Anonymous said...

Whew!!!! What a post. O.k. Are the statistics (familiy stability and income)meant to make him appear more intelligent than he really is? Because basically I'm not getting it. To say that the CI is like dial-up to broadband is ridiculous. If that were the case then everyone with an implant would speak and respond at a much slower rate. Why is it that adults who have worn hearing aids all their lives and then get implanted have no complaints about things sounding funny or weird after the first couple of weeks? Possibly because the auditory nerve goes into the brain and the brain fills in the gaps.
Most will tell you how much better things sound, how much more they can hear.

As for AVT, AVT is not sitting at a desk, AVT is incorporating language in all the daily activities we do. My children, one deaf with a CI and one hearing do not consider it work at all. They consider it play. I also read to my children, I have my daughter read to me. I also teach them things that are not taught in school, such as flowers and trees. Schools teach what they can to both hearing and non-hearing. While I would be thrilled if the school took my child outside and taught her to recognize a maple tree from a beech tree, I would rather,if time was an issue which it is, the school teacher her math, spelling, reading, science and computers.

I'm sorry. I'm sick physically and I just get tired of the same old rhetoric from the deaf community that all CI children are failures because they are not using ASL. I doubt that my son would do very well with ASL since I DON'T KNOW ASL. (Not yelling). I would be learning with him so we would be at baby level right now. He has come much farther with his speech than signs. Not to say that one day we aren't going to go down that avenue, but right now it is not the mode of communication we are going with.

Please, please, please stop telling parents of kids with CI's that they are failures when some of us can plainly "hear" that they are not.

As for Rachael being a failure, she is an inspiration. Tell me how many other kids her age can travel the world alone, hearing or not? How many deaf kids who only use sign would be able to do that?

I get so sick of someone who doesn't know me or my situation telling me how I'm ruining everyone's life.


Jodi, I'm sorry but I just get riled up with a few of the deaf and their constant degrading. They have nothing nice to say and wouldn't admit anything positive if it was smiling right in their face. They would find another flaw. People who always look for the negative usually find it.

K.L. said...

Jodi, you are 100% correct when you say the parental involvement is very important. I strongly believe that the results that we are seeing is very dependent on how involved the parents have gotten. This is the same for the CI, ASL, AVT and really, even hearing kids. Good parents have successful kids. Uninvolved parents have kids with problems.

If we could get all parents to be fully involved, it wouldn't matter what language was used. The kids would excell at it.

Anonymous said...

Please thank your friends for being honest!! "I asked hearing friends about her speech from her videos, and they all say Rachel “talks funny”. A big illusion thinking Deaf people will have perfect speech. CIs are just like fancy hearing aids. People need to stop obsessing about becoming hearing. Nothing is wrong with being DEAF and using ASL.

Tiffani Hill-Patterson said...

Jodi, I just had to comment, sorry it's so long.

AVT is not a waste, and I'm offended by that comment. It has helped my daughter hear and speak, without us sitting here 8 hours a day doing therapy. (When would I work? When would she go to school?) She has just one structured hour a week with a private therapist (paid for by our public school system, which has done a terrific job with accommodations); the rest of the time is life therapy. We talk about water, sun, laundry, the birds building a nest on our porch, seasons, animals, cars, dirt, food, cooking, whatever, as we go about our day.

My daughter plays soccer and softball, plants flowers, plays with Barbies, sings, dances, cries, gets mad, swims, converses with friends, fishes, has a great imagination, pitches fits, loves church, reads "Dick and Jane" books, and lives a full life.

No one told us a CI was a "magic fix," and no one told us it would work perfectly. We were told about the hard work it would take. A "poster child" was never held up to us as a goal; our goal has always been to help our daughter reach HER potential.


Candy said...

What this guy is saying is probably true. I don't think it's biased. I know someone who works in a mainstream deaf/hoh program. And in that program, majority are hispanic kids who's parents do not know English. They are not doing well with their C.I. They are getting one AVT training per week. I don't think the parents are involved with AVT at all. These kids are behind academically and language wise. Parents are duped into thinking that all their kid will need is a C.I. and the rest will follow. This is what was verbally shared with me. I have not seen it personally, since I do not work with these kids.

Obviously AVT is something that parents needs to be involved with. Obviously someone is taking advantage of a vulnerable hispanic non-English speaking parents and not keeping these parents well informed or not explaining to them what it will take for their kids to be successful.

I think this happens more in big cities where kids get lost in the system very easily. for Rachel's voice. Well..ya know this guy is from Texas? Southerners always think us Northerners speak funny anyways..and we do think they talk funny too. :)

Prince Andrew and the Queen Mum said...

HI Jodi
i don't read your blog daily but did see it via Vals. I will repeat what I mentioned to Val in an far as AVT being trivial etc..

doesn't it seem contradictory? ok it takes time...but there IS enough time. so say you don't do AVT then you do sign?? then you don't get as much language at home- kwim? because parents will NOT know ASL even if they do take the TIME which will be MORE than the time to do AVT...guaranteed. because it is not the first language. btw....i could do Shakespeare w/ DS now but I can't get my own brain in the language. we do art... we do all the things listed.

yes I know not everyone is like us but even in the 'worst' cases, if you can work on the auditory then you will get more language by virtual exposure becuase...more people speak English.

also i am not opposed to ASL! But if you are going to choose an implant you need to know that it does take work- but that the rewards will be great. no it isn't total hearing- but it is like saying- OK it won't be 'perfect' so lets not do it...ARG!

Anonymous said...

" for Rachel's voice. Well..ya know this guy is from Texas? Southerners always think us Northerners speak funny anyways..and we do think they talk funny too. :)"

Candy, this quote reminds me of a conversation that I had with a guy the other day. He asked me where I was from, and I told him that I was from Boston, but was raised in Atlanta. He said, "Oh yeah, you sound like you're from the north or perhaps England." I told him that I don't think my accent is really from there, it's just from my deafness as I didn't start speaking until almost three years old. He told me that my accent doesn't sound deaf at all. Just a typical regional accent and even said to me that in his opinion, mine sounds better than those with the thick southerner accents. LOL! So, we all have different opinions on which accents sound funny or not. The most important part is being able to speak clearly enough for other people to understand me and others.

I'm joining the force with all the other mammas who support AVT! A blog is coming up on my site very soon!

Anonymous said...

That video was cute. I loved that Jonathan could hear his mom. He was surprise to hear his mom that he dropped the pacifier. It reminds me of how I felt when my mom first hear me.

Jenna - Valerie's daughter

Anonymous said...

As a CI gal myself, I do see this happen all the time. However, i don't think ASL would help these kids.

Deaf children need (and I mean need) more individualized attention and help than "typical" hearing children. If the child has a CI, then the parent/s must devote a lot of time to AVT, and if the child uses ASL, the parent/s must devote a lot of time learning ASL and exposing the child to ASL while figuring out how to teach the child English.

This is one of the things that bothers me about the Deaf community - the socioeconomic split is more severe in this community than in many other communities. Most successful D/deaf folks that i know (ASL-using or oral, or whatever) come from wealthier families. These families have more resources and time to devote to their children.

but then again, isn't that the same old story all over the world?

Shel90 said...

I am a deaf person without a CI...was mainstreamed, did all the sports, and traveled. Many of you are implying that your children are doing all the same things as hearing children do simply because they have a CI. Hmmmm...I disagree with it because myself and many of my deaf friends without CIs have done the same things as your chidren were able to do. I am able to have a successful career, pay my own bills, own a house, and so much more. I do not need a CI to help me to do all the "normal" things that most people do.

This man is correct because I see so many chidlren with CIs who dont have any benefit from them and who are so language delayed because they werent exposed to ASL in the first place. This problem will continue until the ASL and AVT communities work together. Many Deaf people support the use of oral skills along with ASL exposure. Nobody is advocating for the denial of any children an opportunity to develop oral skills.

Divided said...

Ummm, not sure where to begin but here goes my reaction to this gentleman's comments:
-AVT....I cannot comment much here because I am not familiar with what they do nowdays. But, I can honestly say that as much as I hated going to speech therapy many years has helped me in many ways. I still cannot pronounce ch/sh and other certain sounds. I will always have trouble and that's fine with me. People look at me and know that I am either from another country and speak with an accent or recognize that I am hard of hearing.

There is no one size fit all...I believe that a lot has to do with parents' involvement with the child at home and their interaction & support goes a long way for the child to be any case!

Depending on how well the child develops and matures socially...his/her social skills will have a definite impact on their lives. Some children are introverts and others are extroverts. That's true for children without hearing loss...whether they succeed in life comes from within (interactions with family, friends & social skills, etc).

I agree with what Dianrez says that the CI is only one tool and parents need to apply all possible tools, especially ASL. Another important factor is having the child attend a school that is supportive of all tools used to interact and educate the child.

Unknown said...

Go Jenna! Go Jenna! *smile* Jodi

Anonymous said...

I struggle to understand why people keep on thinking ASL users are incapable of leading a normal life. I am twenty and I have been to twelve countries and four continents. I host community-wide meetings relating to environmental issues and I am a member of youth environmental alliance in D.C. I am going to intern in a deaf school in Thailand for three months this upcoming summer. In fact, I think because of my deafness, my life has been enriched by it. Why do people think that ASL restrains deaf people from the society? It is a false assumption. The key to success is not devices, but parental and community's involvement, this rings true for both ASL and CI users. And, how do you really measure success? By one person’s ability to speak or by her ability to live life to the fullest… you decide.