Friday, December 11, 2009
Deaf Children and Literacy
That got me to wondering about reading literacy in general. When we first became involved in the early intervention program, the current data at the time ( http://gri.gallaudet.edu/Literacy/ ) coming out of Gaulladet showed a 4th grade reading literacy level for Deaf kids graduating high school. This was 10 years ago. I searched the web, and while I found a lot of small studies, with mixed results, there hasn't been a comprehensive overview that I could find since then! I am stunned and saddened that this issue has been so poorly followed up on. I would have thought that every Methodology out there would want to show the world the Holy Grail of performance, which is a high literacy level in the deaf children who follow their method.
I found a lot of studies touting the importance of (fill in the blank) in teaching deaf children how to read. This includes early ASL language acquisition, which I do not dispute. But even Gally does not have current data to show how early ASL helps with higher literacy levels. What does it take to get enough interest in this issue for academic programs to start requiring regular testing and follow up, and then to get it published?
Maybe I am just missing it, or not using the correct search words. If you know of published studies that actually show literacy levels in high school students graduating high school, that is less than 5 years old, I would love to have it. It would be especially helpful if the study showed what specific educational program they used.
Monday, December 7, 2009
Show and Tell
So, My 11 year old and I will spend the day in her ASL class, talking about implants, sign language, speech therapy, audiologists, mapping, and anything else the kids can think to ask regarding my daughter's journey. My daughter and I have visited other ASL classes, and she loves it. The kids have alwasy been amazing with her and make her feel very special. I hope my niece gets lots of points for inviting us.
Friday, October 16, 2009
Gallaudet Professors' CI Journey
Sunday, September 27, 2009
Anti-CI vlog/movie
Thursday, September 10, 2009
Conundrum – Why Parents Make the Decision
If you truly believe that this is a decision the child should make when they get older, how do you address the reality that by the time they get old enough to decide, they are too old to make good use of the sound the implant will give them? Again, we are only talking about profoundly deaf infants who do not get adequate use of hearing aids.
K.L.
Friday, August 28, 2009
Why Sign Language is So Important
http://souggy.wordpress.com/2009/08/27/deaf-shame/
It so clearly explains some of the hidden pitfalls in the path of kids being raised as oral deaf. As a hearing parent, I have grieved over my child's loss of hearing, and rejoiced over the success she has with her implants. She loves music, and is considered a very successful implant user.
But...
She is still deaf. She does miss out on things being said around her. Going bilateral last year has gone a long way toward helping her expand her hearing range, but she is still deaf.
She is most comfortable around kids like herself. Her favorite summer camp is the one for deaf kids. She is very much looking forward to starting school next week because there will be other deaf kids at school this year.
We have given her as many communication tools as we can. Implants and sign language. She has no problem interacting in the hearing world without needing an interpreter. And she has no problem walking into a Deaf social get-together and having fun.
Middle school can be a difficult time and place for anyone. We will find out soon enough if we have given her enough tools to get her through this difficult growing up time.
Wednesday, August 12, 2009
New Technology for Deaf/Blind
http://seattletimes.nwsource.com/html/education/2009642696_deafblind12m.html
Thursday, July 30, 2009
How Would You Feel about a Deaf Interpreter?
I can actually see her doing both with relative ease. But what intrigues me is the idea of a deaf person being an interpreter for another deaf person. With her bilateral implants she has excellent comprehension in quiet situations, and she can use an FM system in noisier situations. But there may be times when she would need to have something repeated. How would you feel about it? Would it bother you or would you accept her? Would it even be worthy of notice?
K.L.
Monday, July 27, 2009
D.E.A.F. Project
The D.E.A.F. Project
We provide....
Empowerment for families with children who are Deaf or Hard of Hearing so they can receive the most effective services and their children can enjoy the greatest educational opportunities resulting in productive and enriched lives.
We believe....
- Deaf and Hard of Hearing children can accomplish anything!
- Families are the key to any child's accomplishments.
- Diversity of culture and language should be celebrated and shared within families.
- Parent-to-Parent support is your greatest resource.
- Deaf role models are an important part of the Deaf child’s identity and development.
- Parents need opportunities to have positive experiences with Deaf adults.
Through research we know ...
Signed language provides the earliest possible way children can acquire language.
Signed language is known to enhance early communication for children.
All children can learn signs before they are capable of producing speech.
Learning signs gives Deaf and hearing children a way to express themselves long before they can use speech to say what they want.
Social and emotional health, for families and the child, are more positive because early communication is facilitated through language.
Access to visual language can not be replaced by speech therapy and technology.
(Malloy, 2006. A full reprint of this is available at www.deafchildren.org)
Friday, July 17, 2009
Bilateral Progress
We talked it over, and since she was older, felt that she had to be involved in the decision this time around. She wanted to try, and in December 2008 the surgery was performed. Initially, the doctor said that he had gotten half of the electrodes in place, but subsequently, three of them were not able to be mapped. Out of 22 electrodes, she has 8 active. Between that and not having any stimulation on that side for 10 years, we knew that her progress would be slow. But the question still remained. Would she get any benefit from the right implant? The right side was activated in January, and her map stabilized in March. She had her six month mapping check up in early July.
No surprise that her right ear was still unable to understand any of the words in the booth test. With the ossification, and only having 8 active electrodes, she may never be able to use that ear alone to understand speech. Her left ear has 100% understanding in a quiet environment. The real question was how well would she do in noise. With both implants on, the doctor did the test several ways. With the background babble on the right side and the sentences she was supposed to repeat on her left side she tested 12% below normal hearing. When it was switched, and the babble was on her left (good) side, she tested at 13% below normal. When the babble and main voice were equalized, and both sounds were going to both ears (true bilateral hearing) she tested at only 6% below normal hearing.
The audiologist was thrilled with this outcome. She said that it showed that our daughter’s brain was really able to utilize her hearing in her right ear even though she couldn't understand anything in it alone. It also showed that the bilateral hearing was making a big difference when hearing in noise.
We had three things we wanted our daughter to achieve with bilateral hearing that she didn't have with her single implant. Better distance hearing, localization of sound, and better discrimination in noise. All three of those objectives have been achieved, and she has only had her right implant for 6 months. It would be icing on the cake if she could actually understand speech with her right implant alone, but even if that goal is never realized, she has benefited immensely from getting bilateral hearing, and we are thrilled with her progress.
K.L.
Wednesday, July 8, 2009
Wednesday, July 1, 2009
Research Links
http://www.childrenshearing.org/custom/research_articles.html#psy
http://ccdam.gallaudet.edu/pdf/referencelist.pdf
http://archotol.ama-assn.org/cgi/content/full/130/5/547
Friday, June 19, 2009
Where is the Line?
What constitutes threats? Is it ok to say you want to kill somebody if you don't really mean it? How much can or should we tolerate in the name of free speech? How should the D/deaf community respond when someone else threatens violence in the blog comments?
Please say your piece, but please be respectful while doing it. Thanks.
Wednesday, June 17, 2009
Enough with the CI Blogs?
I understand that Deaf Read was originally designed by and for Culturally Deaf people. But is it really advantageous to limit all perspectives but our own? If everybody is of the same opinion, there is no growth. No learning. No thinking. It is through the exchange of ideas that bridges are built and connections are made. Our Founding Fathers knew this. They made the free exchange of information part of our Constitution.
I will take things a step further. I believe that diversity is absolutely necessary, required and designed into us by God. We NEED to be unique. We NEED to have different opinions and ideas. God needs us to learn from each other, grow with each other and help each other. I believe that one of the biggest things we need to learn is tolerance. How do we engage in conflict resolution in a peaceful and respectful manner? We start by respecting and tolerating different people and different ideas.
Does anyone really have the right to say that since they no longer want to read or discuss something, that nobody else should blog about it? These are blog posts people. You have the complete choice on what you click on and what you don’t. If you don’t want to read about someone’s implant surgery, don’t read it. I guarantee that someone else is interested in it and is glad that post was put up.
Diversity, tolerance and respect demand that we try our best to allow each other room for expression. Yes, that blogger has the right to her opinion. She also has the right to tell us about it. I have the right to think that was disrespectful of her. I also have the right to keep blogging about the things that are important to me. And I strongly hope that her negative opinion does not deter other bloggers from putting up the posts they feel strongly about.
K.L.
Tuesday, June 2, 2009
Survey for Adult Signers with CIs
Dear Respondent:
You are invited to participate in a survey on how deaf adult signers
experience cochlear implant. This project has been approved by the
Institutional Review Board of Gallaudet University. It will take
approximately 15 minutes to complete the questionnaire.
Through your participation we hope to provide a descriptive summary of
common as well as unique experiences among deaf adult signers who wear
cochlear implant(s). We believe that the results of the survey will be
useful for other deaf adults who are contemplating cochlear
implantation. The results will be summarized and interpreted in a book
chapter.
Thank you very much for your time and support. Please start with the
demographics and survey now by clicking on
http://cochlearimplantsurvey.
Sincerely,
Khadijat Rashid, Ph.D.
Poorna Kushalnagar, Ph.D.
Raja Kushalnagar, J.D.
--
Poorna Kushalnagar, Ph.D.
Co-Investigator, Texas site
Quality of Life - Deaf/HOH Youth Research Project (
https://depts.washington.edu/
Department of Health Services
School of Public Health and Community Medicine
University of Washington
poornak@u.washington.edu
Thursday, May 21, 2009
Is it Speech or Language Therapy?
I would like to clearly and distinctly refute that claim. First off, I fully agree that teaching ASL teaches language. No question there. But speech therapy today must be way different than 20+ years ago. At least it is for kids learning language with a cochlear implant. Before we go any farther, I want to stress that I believe ASL and verbal language can and should compliment each other. Deaf kids should be taught both. But there is a reason that speech therapy is so important for implant recipients.
The determination of success (or failure) of the cochlear implant comes down to how well the person can make sense of sound. One of the shortcomings of hearing aids is that if there are no residual hair cells in the cochlea, no amount of amplification can get sound through the cochlea to the auditory nerve, and on to the brain. With the implant, if you have a functioning auditory nerve, and can get a good insertion of the electrode array into the cochlea, sound WILL get to the brain. The question really is how well can the brain make sense of the sounds it is now receiving? Think of it like a projector that is out of focus. The sound coming in from the implant is fuzzy. The brain has the ability to make the sound quality better and clearer. In effect, it focuses the projector to sharpen the image. How well the brain can focus the sound is the key to the implant’s success.
In the “olden” days, speech therapy consisted of trying to teach a deaf person how to imitate a sound that they may or may not even be able to understand. It focused on teaching the person how to speak clearly enough to be understood. Many of the sounds they learned to make, they never learned to understand.
With the implant, the key is to understand the sounds you are hearing. Verbal language is all about putting meaning to the sounds you are hearing. Yes, speech articulation is part of it, but the majority of the emphasis is on learning to understand the sounds you are hearing. It is all about the brain. 100%. You learn to make sense of sound, put meaning to words, paraphrase what you see and hear, initiate and reply to conversations. In short, you are learning verbal language. The success of the implant rests on how completely you learn language. And how well you learn language rests on how well your brain is able to interpret the sounds the implant is giving you. Meaningless parroting has no place here. It is all about brain development. Speech therapy is the way the brain learns to focus the sound, so the sound has meaning. I really think it is no longer appropriately named. Maybe calling it speech therapy was what was happening in the “olden” days.
As a parent who has been intimately involved with my daughter’s speech therapy over the years, first with her initial implant and now with her second bilateral implant, I can tell you that there is one thing I know well. It may be called speech therapy. What she is getting is NOT speech therapy. It is LANGUAGE therapy.
K.L.
Monday, May 18, 2009
New Documentary about a Deaf Family with CIs
The Stark family of Chicago: a deaf, ASL using family with cochlear implants. Jeffrey (almost 3 years old) has had a CI since he was 17 months old and and 7 month old Melissa who will get a cochlear implant soon. Their mother, Jill, will get a cochlear implant this month. The documentary will be released soon. Here's the link to the ABC story on this documentary and click here to go to the documentary's website.
Monday, May 11, 2009
Video of an ASL- CI user
Thursday, May 7, 2009
Line in the Sand
Before the ossification in her right ear was discovered, the doctor was fairly unconcerned about how much time would be lost between when she lost her hearing and when the implant would get activated. Her belief that if we implanted somewhere between 15 and 18 months that would be good enough, and that there really wouldn’t be that much lost in the process. The ossification was discovered at about 9 months of age, and that changed everything. If they wanted to get a good insertion of the electrode array into her left ear before it too ossified, they needed to hurry. The ossification process had just begun in her left ear when they operated. They were able to slide the array right through the bit of fibrous tissue they encountered, and got a full insertion. She was the first 12 month old at that hospital, and one of the first in the country to receive an implant at that age.
She is now 11 years old, and will start in middle school in the fall. She is the line in the sand. The number of kids implanted younger than 18 months of age, who are older than my daughter are few and far between. When she was two, the minimum recommended age of implantation lowered to 12 months. When she was three, newborn screening was more common than not, and now it is in place across the country, for all babies. And now, the doctors are far more aware of the brain development that occurs during those critical first three years.
There were no ASL CI programs available when she was little, so we went with a TC program. She still signs SEE, but is learning ASL, and will be around other kids who know ASL when she gets into middle school. But we know of no families with kids in her age group who were implanted as young as she was. We were forging our own path for the most part. When kids enter the teen years, they start to come into their own. How she does in middle school will be the beginning of our parental report card. That is usually when the payoff for early intervention begins. We will see where we did things right, and we will see where we did things wrong. This payoff period will last at least through high school, and into college. But it begins in September.
Up until now, the number of kids implanted early, who are in middle and high school have been a trickle. Most of the teens who have implants got them at over the age of three. However, behind my daughter the trickle will turn into a stream, then a wave. It will be at least five to ten more years before enough early implanted kids get to the upper levels of school before the trend can be seen as to their success. Success with both their implants and with education and language in general. But my daughter is at the head of the wave.
I am looking forward to the journey.
K.L.
Wednesday, May 6, 2009
ASL-CI Families Needed for Book
A Book about Your Family’s Story: In Narrative and Photographs
Families with children who are deaf and who use ASL are invited to participate in a project that gives families an opportunity to share their experiences as a family. Families with deaf child(ren) who use ASL and CI are also welcome. What is life like with a child who is deaf—at home, in the community, and at school. What communication decisions have you made? What are your family’s goals for now and for the future? What kind of literacy experiences does your child have at home?
Our visits with the families will involve informal interviews around these and other topics that come up during the conversation. We will videotape the interviews only to record the information and not to be shown to anyone.
“A picture is worth 1000 words!” Family photographs are an important part of the project. Informal black and white photographs of the families at home will be taken. The purpose of the photographs is to show the overall “spirit” of each family as a group and individual family members; family diversity, communication and bits and pieces of family life can be communicated through photographs.
The overall approach is collaborative between the families and the project leaders. What stories are shared is the decision of the individual family; we will ask questions to keep the discussion going. What photographs are taken is also up to the family; again, we will make suggestions. The family will be the final decision-maker on the photographs and narrative included in the book.
The book will make an important contribution to the literature. Very little information is available today about families who use ASL or who use ASL and CI. This is a unique opportunity to provide information from families to other families, teachers, and anyone who might be interested.
What we are asking of the families who participate:
Usually one (sometimes two) home visit (1 ½ hr.—2 hrs each); family members will be videotaped as they discuss their family stories in an informal interview; families will be photographed informally.
Stipend: We will offer the families a $100 stipend.
Project directors:
Barbara Bodner-Johnson
Department of Education
Gallaudet University
barbara.bodner-johnson@gallaudet.edu
Beth Benedict
Department of Communication
Gallaudet University
Thursday, April 30, 2009
What I hear you saying
Before my daughter lost her hearing, my interaction with the Deaf Community consisted of a single incident. I was a college waitress, and I was trying to take an order from a group of Deaf people. We resorted to writing, as I simply couldn’t understand their speech. I didn’t think they were stupid. I didn’t give them bad service. But it was uncomfortable, and I felt bad that I couldn’t do a better job for them They didn’t come back.
Other than that, it was simply that nobody in my circle of interaction had a hearing loss, other than aging grandparents. I knew about ASL. I had no prejudice against it. It was simply a non-issue to me. Then my daughter lost her hearing to meningitis when she was a baby. All of a sudden, I had a LOT to learn. In case you were wondering, the audiology department at Children’s Hospital did and does have a Deaf advocate on staff. We met with her. All of the staff we interact with know sign language. It is SEE, not ASL, but it is a visual language. We ended up going to the Total Communication early intervention program, along with getting her implanted just after her first birthday. I feel very strongly that the sign language she learned helped her with her verbal language acquisition. They complimented each other.
So why didn’t we simply go ASL, and leave off the implants altogether? As I said at the beginning, I did hear you. I do know what you are trying to get across. I also hear other things. Here is what else I hear:
ASL deaf kids can feel isolated from their hearing families.
ASL adults have a much higher unemployment rate.
Many places, including hospitals don’t provide interpreters when they are needed. And some of the interpreters are not qualified.
Prejudice is rampant among hearing people against Deaf people.
Residential schools have a much higher incidence of sexual abuse than day schools.
Good ASL programs are hard to find in day schools.
And of course, the good old 5th grade reading level among ASL adults. Yes, I heard all about that.
Add all of that to the natural desire of hearing parents to give their child the gift of hearing, and it was a very easy decision to give our daughter an implant. And she thrived. She continues to thrive. She still signs well, and is learning ASL. She has above age level verbal language acquisition and is also above grade level in reading and writing. The only difficulties she has with her hearing, is in noisy environments, and distance hearing. The only accommodation at school is an FM system.
I know this won’t change anyone’s mind on the issue of implants. But it is important for each of us to try to understand each other’s point of view. Here is mine. What is yours?
K.L.
Monday, April 27, 2009
To Help Deaf Babies, Support Hearing Parents
Many Deaf adults want to help support hearing parents, but it is conditional. It has been said that Home is where you are accepted unconditionally. To truly support hearing parents, it has to be like this. Unconditional. Telling them that the best way is ASL only, without cochlear implants, is not unconditional. This message along with the help that goes with it will be rejected by most hearing parents.
To truly reach these parents, you need to meet them at the beginning. In the early intervention programs that will lay the groundwork for the rest of these babies lives. Most parents will have already had a confirmed diagnosis of their child’s hearing loss from the newborn screening process, and the audiological appointments that followed. The audiologist will have most likely given these parents information on hearing aids, cochlear implants, and the different methodologies available. If there are any early intervention programs in the area, this information will also have been given to them. If there was a program that was available that included ASL and verbal language therapy, that information would be included. This is where true support will happen. This is where the parents need you. To be there with an option that currently is not available in most areas. To show them that their children can have the best of both worlds.
Imagine a program that could truly give Deaf babies all the options. ASL for a Deaf Identity, and involvement in the Deaf Community. Verbal speech for easier interaction in the local hearing community, and hearing extended family. A complete language toolkit for optimal success as an adult.
Will it happen? I have no idea. I hope so.
K.L.
Thursday, April 23, 2009
Hearing Aids or Cochlear Implants for Deaf Children
The child in AFA’s story can hear at 30 dB with hearing aids, which means she has access to spoken language (at around 30-60 dB). From an auditory perspective, this child is not deaf but hard of hearing, which means she would be able to benefit from hearing aids. By “benefit” I mean the hard of hearing child is able to access to spoken English through the use of hearing aids only. No parent would willingly put their child through surgery if that can be avoided.
In the case of a profoundly deaf child (with a dB of 90 and up), hearing aids provide access to environmental sounds. With intensive auditory and speech training, a few can lipread and use residual hearing to communicate in spoken English. Most hearing aids, even digital aids, provide some profoundly deaf children access to sounds at the 60 dB level, which is not within the range of spoken English.
With cochlear implants, profoundly deaf children can hear at the 20 dB level, which gives them access to spoken English. This is with auditory and speech training, but at a much less intensive level than with hearing aids.
For example, I had the opportunity to observe the language development of two four-year old profoundly deaf children. Both signed ASL at an age appropriate level. One wore hearing aids all the time and had auditory/speech training, and the other wore a cochlear implant and also had auditory/speech training. The hearing aid user was able to produce vowels and was able to identify some environmental noises (e.g., door bell, phone ringing). The child with a cochlear implant was almost at age appropriate level for spoken English, and was able to understand sentences in spoken English without visual cues. The difference between the children is dramatic, and only underscores the benefits that cochlear implants can provide some profoundly deaf children.
Again, to be crystal clear here, hearing aids provide a greater benefit to hard of hearing children. Cochlear implants levels the playing field for profoundly deaf children.
Wednesday, April 15, 2009
Revisiting AFA, DBC and Cochlear Implants
I'd like to revisit the main topic of that blog post, which is the inequality of assistive technology- hearing aids and cochlear implants in the deaf community. Both serve the same function, however one is much more acceptable than the other.
For CI users and parents of CI users to trust both organizations (AFA and DBC), both technology needs to be on equal footing and no bashing should be allowed anywhere by leaders and followers alike.
If CIs are mentioned as tools of audism, then hearing aids should also be mentioned as well. If hearing aids aren't tools of audism, then CI's should not be either.
The other topic is respect for parents like myself who want to protect our children. I had assumed that this was a given, that people would understand parents' need to protect their children from negative scrutiny. Perhaps this is another issue that needs to be addressed as well, as many other parents like myself of deaf children with CIs feel the same way.
To be honest, I was shocked that AFA would even suggest that their members hold rallies at elementary schools. That to me is crossing the line. Using a bullhorn next to a school is also inappropriate. I could go on and on, but there are appropriate venues for members to reach out to parents and let them know about the benefits of ASL and to teach them about audism. Taunting parents about their valid fears for their children's safety on the blogsphere is not one of them, neither is holding emotional rallies next to schools with very young children.
Tuesday, April 14, 2009
Audism Free America and Cochlear Implants
The discussion regarding audism, reverse audism, dysconsicous audism brings to light the issue of AFA’s position on Cochlear Implants (CIs).
In AFA's list of demands, they ask Alexander Graham Bell Association (AGB) to help them research the effects of CIs on deaf children. However, in their vlogs and videos of Judy Gough and Ruthie Jordan, they make it clear that they view CIs to be as evil as AGB.
In AFA's vlogs it is also clear that data collection on the effects of CIs on deaf children is not their ultimate goal, instead they appear to view CIs as inherently dangerous to deaf children and to the deaf community.
There are already several published books and articles on the psychological impact of CIs (see, for example, Christiansen and Leigh’s book), and educators and scholars are actively discussing how sign language benefits children with CIs (such as CIEC’s conference on sign language and CIs which is occurring this week at Gallaudet).
CIs do not have the same effect on all deaf children, just like hearing aids, as there are so many factors that affect success rate, such as age of implantation, parental involvement, and school support.
Now if CIs are compared with hearing aids, as they are both technology with the purpose of enhancing hearing, the issue becomes more clear. In the past, those who wore hearing aids in the deaf community were looked down on until hearing aids became more widespread and acceptable. The same seems to go for CIs today.
However, in this case, many of the AFA and Deaf Bilingual Coalition (DBC) leaders themselves wear hearing aids and can hear and speak. If we look closely at hearing aids and CIs, hearing aids are most beneficial when worn by those with residual hearing. CIs help those who are profoundly deaf hear as well as hard of hearing people with hearing aids, or even better.
Many of the deaf children who were implanted early can hear at 20 dB and understand speech clearly without any visual cues at all.
Now, leaders of AFA and DBC who wear hearing aids and bash CIs- what is their motivation? Why do they wear hearing aids at rallies and denounce CIs? Is it to keep the status quo- the "closeted" hard of hearing members holding a place of privilege in the deaf community?