Thursday, April 17, 2008

CI Kids Observations Part II


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.


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.


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.


KP
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.

KP

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.


Commentary (ala Mishka:)):
The gentleman who provided his assessment based on his experience with CI kids and the commenters have all made important observations.

One thing that has always bothered me about the yahoo support groups and deafread.com (talking about blogs, not vlogs, because I do not understand the vlogs, so I don't watch them) is that they seem relatively demographically, ethnically uniform...and perhaps I am making an assumption here, but one can roughly understand a person's sensitivity level and intelligence by means of their writing skills. What I am trying to say is whether or not a person uses grammar correctly or not, the message conveyed is what matters - that message is a reflection of a person's sensitivity and intelligence.

Sometimes, we can identify race, ethnicity and gender merely by reading a name. Based on this, there is an entire portion of the population MISSING from the support groups and deafread.com, and it is no doubt this portion of the population that needs the most support to enable CI Kids to reach the greatest potential offered by a cochlear implant.

When approaching the issue from this perspective, given the image of a lost parent ("lost" for motives of weak character, financial situation, non-native speaker, broken family, ignorance, or misleading information) who was not provided with accurate information regarding what a cochlear implant actually involves, I begin to understand the perception that such a parent chose the cochlear implant to "fix his/her kid." These parents wrongly assume that sticking the processor on the ear is a "magic cure" of deafness. (Note: I find this strange because the ci companies all say that the CI is not a cure, but I will work with this hypothesis)And so, these children are lost, suffering from inadequate communication skills.

My own experience, together with those of the dedicated mothers and fathers on the support groups led me to IMMEDIATELY reject the word "fix."

KP wrote, "People who always look for the negative usually find it."

I am a person who ALWAYS looks for the "Positive," and I NEVER fail to find it. I am a little too naive. Perhaps, sometimes, it is important to look for the positive, but not at the expense of being so blind as to not see the negative. Only when we acknowledge the negative can true change occur.

In regard to Auditory Verbal Therapy, see Val's Blog..."Are We Well-Rounded?" couldn't have said it better myself!

*And...FYI*
This is what a typical parent on the support groups sounds like, just to give you an idea of where I'm coming from:

Tiffani 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.

Thanks.



Thank you again to the gentleman who sent the observations, and to those who took the time to comment on what he had to say. *smile* Jodi

30 comments:

Val said...

very nice Jodi!

K.L. said...

Many Deaf people dislike the implant and say it doesn't work well for lots of people. I think the "blame" should go to parents who don't work well for their kids. Language in any form must be taught, and parenting takes time and effort. The real failure belongs to parents who don't do their jobs. Unfortunately, it is the kids who pay the price.

It is hard to justify the implant to people who plainly see those for whom it doesn't work well. Especially when I know that the problem is probably due to bad mapping, inconsistent usage, poor therapy practice, etc...

In the end, the implant is a tool, and will work as well as the people who are using it.

Tara said...

KD- I just wanted to point out that bilingual Deaf people are fully capable of traveling the world alone. I know plenty who have-- including those who joined the Peace Corps or did volunteer work in developing countries. I personally have traveled to several countries with other Deaf people. I would advise against making any kind of assumptions about what bilingual Deaf people can't do. Frankly there isn't much.

Prince Andrew and the Queen Mum said...

i felt i had to say one more thing...DS has other issues- even given that he has made GREAT strides w/ AV. So much so that a therapist thought that the 'thing' on his head was some sort of sensory device. She could not get over the fact that he was indeed deaf.

I am also struck by the fact that folks who advocate ASL primarily don't recognize that it is ALSO a big investment of the parents. To use one of the overused phrases of 2007...'it is what it is.' I consider deafness a disability - and you have to work at figuring out how to deal with that. i see Kl says that too... it isn't about the implant....its about the work that goes into childrearing in general...(which is more often than not left to the schools and more should be done at home)..and w/ special needs, it take that much more extra effort- at home.

Jodi Cutler Del Dottore said...

Hiya Amy! (The other half of learn2hear checking in) I agree with what you and K.L. have said...just want to add that the fact that Jordan goes to school from 8-1 leaves a lot of room for extra work and extra-curricular activities, which helps. Kiss that boy for me! Jodi

Anonymous said...

I am so very tired of hearing that ASL is the answer. If that's the case, why are there so many deaf adults from deaf families who still haven't mastered English? I teach at Gallaudet. I see the poor reading and writing abilities, and inability to present a well thought out argument far more often than I would like.
As it makes no sense to compare oral education as it existed 20 or more years ago to what is available to oral deaf kids with CIs today, it also makes no sense to compare kids who received the early versions of CIs with the high tech CIs of today. With good early intervention, these kids will soar in their language and communication abilities.
Finally, we must not forget that some research says as many as 40% of deaf kids today have an additional disability. Deaf kids with a learning disability, another sensory disability, etc. really have it tough. So, let's not blame everything on the CI not working, or the parents not caring. The vast majority of parents do all that they can, so let's not be so quick to point the finger of blame.

Prince Andrew and the Queen Mum said...

interesting stat on that 40% having additional disabilities!!! DS is one of them. And, as I said, even w/ those the CI has been an incredible blessing. His speech is behind but his language has soared. His favorite new thing is, "And speaking of...." and he applies it correctly by taking two unrelated things and relating them. (I can't help but get giddy at such things..) Parents really do try! Schools too. and the CI is a GREAT tool and even now so much better- and w/ the bilaterals...WHEW!! What a blessing! btw---Ds is now at age 7 interested in ASL- so we do it just from time to time- some basic signs and certainly i'd teach it to him at this point if he were intersted. but you gotta strengthen that hearing muscle after you get the CI-

Jodi Cutler Del Dottore said...

Anonymous - Thank you for your comment... Jodi

Karen Mayes said...

Anonymous, I am glad you brought it up. My father again and again, through my growing up years, that there are MANY factors for the successes and failures (I am not talking about deaf-related issues, but anything... why Roman civilation ended, why we had "Dark Ages", etc.)

And the superintendent of one Deaf Bi Bi school told me that a large of percentage of deaf people had additional needs which hinder the ability to learn any languages... so it is a challenge for the states and parents/guardians to be able to meet the child/children's needs, depending on the background they come from.

Jamerica said...

I believe that God could heals deaf people if they want it. There is problem that people never to asking God to help them, beause they don't like to pray or don't believe in Him... I am deaf, I know God could heals me.

Jodi Cutler Del Dottore said...

jamerica..."heal" your soul or your ears??? Don't quite understand your comment, Jodi

Jamerica said...

I believe if parents want Jesus to heal their children's ears. Jesus would be more than happy to whole hear deaf or eye blind. Not too late for deafies, they can speak Him with ASL. I am very sure that Jesus would to heals me if I am asking.

I am rather God heals me so I could praise Him more than 50 cent! I don't want WORLD give me the cochlear implant...

Prince Andrew and the Queen Mum said...

Jamerica, i also believe 100% that God could heal DS in an instant! but if you had a broken leg would you get a cast put on it or pray for healing. If you had cancer would you go for treatments. So you believe that deafness is imperfection then right- if you feel God could heal it- so why not treat it as such and use the medical devices available- which ultimately come from God because..well..he gave the Doctors and scientists their brains. I personally have been healed on things physically and mentally. But praise Jesus, he has also provide doctors. If not for them i would have died before I was one year old- i've had 5 open heart surgeries and I equate the implant to be in the same category.

Jamerica said...
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Jamerica said...

I don't need ask God to heal my broken leg, the bone itself will heals. In the bible, Matthew 9:20-21, Mark 5:25-26 and Luke 8:43 Woman who had been bleeding for 12 years that physicians can't heal her. When she saw the Jesus, she was thinking "If I can touch his coat, then I will be healed."

She did touch Jesus, and she was made whole from that hour.

The audiology couldn't give you a RX drugs to heals blind or deaf, but they can put the electronic device. I don't need that stuff, I rather GOD whole me without electronic device. That's so powerful to heals more than cochlear implant...

Jodi Cutler Del Dottore said...

Amy...did not know that...you were certainly here at the right time to field this particular debate...hugs, Jodi

Prince Andrew and the Queen Mum said...

Jamerica are you saying then that you do not take medication for a headache and would not take chemo?

Jamerica said...
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Jamerica said...

I said "The audiology couldn't give you a RX drugs to heals deaf"

Have you seen person got heals without chemo? Yes, I do. Only if you believe Him and called His name (Jesus), He will listen your pray. He would love to heals your children...

Headache medication just help you feel less the pain. I don't think that's miracle if God heals headache. God heals deaf, blind, leprosy, or aids then that would be marvel of God...

Prince Andrew and the Queen Mum said...

Jamerica you said:

"Have you seen person got heals without chemo? Yes, I do. Only if you believe Him and called His name (Jesus), He will listen your pray. He would love to heals your children..."

Are you still deaf? if so and you do believe God will heal you why are you still deaf? Do you not have enough faith then?

God heals people all sorts of ways and the New Testament lists many different ways. some were healed BEFORE they even had faith- they didn't even know who Jesus was. Some were touched directly by Jesus or his desciples, some had relatives that were spoken to and they were healed through that.

I whole heartedly believe that this world has way less healing than it could have- if more people accepted Jesus and truly believed in him and had more faith there would be more healings. Funny that there are more healings in less developed contries- perhaps because more faith is needed on a day to day basis.

So how do you draw such a nice neat little line on what is a 'miracle' and what is not? so headache healings are not. what about chronic migranes. Or chronic broncitus, or the flu. does God not care about that? I 100% was healed tonight by prayer from a headache. DH was planning on going to a concert and I had a headache that was moving into nausea. I went and layed down and prayed that God would provide some relief so that DH could go and have a good time. I woke up w/o a headache. That just doesn't happen w/ the condition that I have. Sometimes he does, sometimes he doesn't do this kind of thing for me but tonight he did.... it isn't JUST about the faith- if it were would we need Jesus? And faith comes from Jesus anyway. WE play a part in the relationship but it all comes from him

Jamerica said...
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Jamerica said...

I still have a enough faith, He will heal me in someday if not then I am still praise God. Because I know my soul is hearing when I am into heaven. I won't give up to pray Him...

Luke 6:46 Jesus said "And why call ye me, Lord, Lord, and do not the things which I say?"

Today, people called Him "Lord, Lord I would like you heals me" or "Lord, Lord I need you bless my finance" Jesus said "Why you call me "Lord, Lord" which you don't the things which I say?" That's why Jesus trying to tell you don't to do drugs, forncation, liar, greedy, idol, lust and sinful. People still won't change their heart and still saying Lord, Lord. He won't listen people's pray until they repent to do stop sins then He would heal or help...

2 Chronicles 7:14 "if My people who are called by My name will humble themselves, and pray and seek My face, and turn from their wicked ways, then I will hear from heaven, and will forgive their sin and heal their land."

I believe if world who are call JESUS, and they have to keep away sinful things. He would forgive their sin and WILL HEAL PEOPLE... Well praise the LORD!!!

Jamerica said...

If you want God to heals you through chronic migrances, chronic broncitus or the flu, go ahead. God would love to miracle you.

I would rather to see God miracle to heal deaf ear to hear, that what I believe that's really MARVEL!

Prince Andrew and the Queen Mum said...

He's big enough to do both. We don't pray to get answers....we pray to get in a relationship with him. It isn't about the prayer or the answer...God LOVES it when we come to him- with a headache, with deafness and in a dying breath. He LOVES his sheep. that is why we pray- because as we do- we know Him better. He already knows us..kwim? he made us. I pray about the big stuff, I pray about the small stuff...it ALL matters to God because we are his Children.

My son als has been dx w/ autism...so I pray about that. i totally understand what you are saying about big and small stuff. Because of the the implant- i consider sometimes Andrew's other isues 'bigger' to pray for, but again, God can do them BOTH- in an INSTANT.
I forgot- i blogged on healing back in October myself if you care to read
http://rdisuperparents.blogspot.com/2007/10/personal-thoughtshealing.html

Anonymous said...

Prince Andrew and the Queen Mum, Jesus healed the Deaf who became normal hearing not like children with cochlear implants will never have normal hearing.(Mark 7:31-37)

Jodi Cutler Del Dottore said...

Jamerica...
You said, "I believe if parents want Jesus to heal their children's ears. Jesus would be more than happy to whole hear deaf or eye blind. Not too late for deafies, they can speak Him with ASL"

You know, I have not only NEVER asked God to "heal" my son's ears, I have never thought they needed to "heal." I have only ever prayed for strength to be a good mother. Jodi

Jodi Cutler Del Dottore said...

Amy,
This "We don't pray to get answers....we pray to get in a relationship with him. " is very interesting, and I'm trying to understand this, "it isn't JUST about the faith- if it were would we need Jesus? And faith comes from Jesus anyway. WE play a part in the relationship but it all comes from him."
Interesting. I have always thought faith was a one-way street coming directly from me, (keep in mind, it isn't Jesus I'm praying to, but the concept is the same)but I imagine that implicit in the concept of "Faith" is the idea that God has faith in me. Never really considered faith as a two-way street...thanks for being you, Jodi

Jamerica said...

Prince Andrew and the Queen Mum...

I believe keep to asking, seeking, knocking, then Jesus will the answer the door...

Luke 11:9-11 Jesus said "So I say to you, ask, and it will be given to you; seek, and you will find; knock, and it will be opened to you. For everyone who asks receives, and he who seeks finds, and to him who knocks it will be opened"

I am still ask Him for heal me and I know I will receive from Him. I am look froward, that what I am looking for the answer. I keep the knock and he will open my deaf ear to hear...

That's true relationship, He love me and he will give me what I am pray for. He will do to all people if they asking, seeking, knocking...

1 Thessalonians 5:17 "pray without ceasing" I am still firm believe God will heal me deaf ear to hear, without Cochlear Implant... Praise God!

Jamerica said...

Jodi.

That's great you prayed to God to be a good mother. Like I saying "Not too late for deafies, they can speak Him with ASL" I believe when your son became adult, and he have a chance to get ask Him. God could do anything, I am sure He will take out your son's Chochlear Implant. He will able hear wihtout CI, that what I want! :)

Jodi Cutler Del Dottore said...

jamerica,
You seem like a very warm person and I hope you find what it is you are searching for within yourself, I think that is the most powerful type of healing. Jodi