Deaf Identity for Deaf Children with CIs

On a recent visit to an oral deaf classroom in a hearing school, I was struck by the following things I observed in this school:

-no deaf adults (no deaf teachers, deaf teaching assistants, no deaf administrators, no deaf service workers, etc)
-no mention of ASL/deaf culture
-no posters specifically about deaf people (history, sign language, advocacy)
-many teachers/support service staff knew ASL but did not use it in front of students
-no plans to introduce ASL to deaf children
-deaf students in the minority, majority is hearing students
-plenty of audiological/speech support

Imagine if it was a classroom with black students in an all-white school. Now imagine the reaction of the black community to that classroom. This helps us understand the reactions of the deaf community when they find out deaf children are in a similar situation.

Many deaf adults who grew up oral without any knowledge of ASL and deaf culture often say that they wish that they had been exposed to ASL and had deaf role models while growing up.

It all boils down to this: Deaf children need deaf role models. ASL and deaf culture are deaf children's birthright. Having a strong deaf identity is essential to becoming a confident deaf adult.

I am a culturally deaf parent of a deaf child with a CI. I want my child to be exposed to both spoken and signed languages, and I am having a tough time finding an appropriate setting that celebrates being deaf yet provides ample access to spoken English. In deaf schools, spoken English is basically nonexistent outside the speech therapist's office, not to mention the prejudice my child would be facing in deaf schools. In oral deaf classrooms, my child would feel as if being hearing is something to strive towards, instead of being proud to be part of the deaf community with its own language and culture.

What can we learn from THE ENEMY?

So the goal is to teach our implanted children how to speak and how to sign ASL. Now how do we get there? The first step in any campaign is to study the enemy. In this case, to find out what is successful about Auditory/Verbal Therapy (AVT) and Total Communication (TC). The best way to provide a successful ASL/CI model for our kids is to learn what is successful in general, and see what we can use.

If I use the words “speech therapy”, many Deaf folks out there start to sweat. I can already see the painful comments getting written. I have already read many comments on other blogs regarding the frustration and dislike people had for those hateful sessions. Guess what? If there is one thing that has changed, it is speech therapy. It should really be renamed language therapy. And it is FUN. Most kids these days see it as one-on-one play time. It is a necessary part of aural habilitation for getting implants, and it carries over into the home. Parents are taught how to change their habits to incorporate language therapy into everyday events. Everything we do is a language opportunity. AVT and the TC program I was involved with have that in common. You talk to your child (or in my case talk and sign using Signing Exact English) about EVERYTHING. Doing dishes, the laundry, making cookies, cleaning the bedroom, going to the grocery store, playing board games, washing the car, and on and on. The key to teaching your D/deaf child language is to get them to focus on you one-on-one to talk, ask questions, answer questions and basically interact. Hearing kids overhear language between other people. D/deaf kids don’t. Even with the implant, overhearing conversations is harder to do, and easier to ignore, so you need to get their attention and be very deliberate in your interactions.

What most parents have to learn, is that you can’t count on your child picking up language by observation or verbal “osmosis”. What AVT and TC teaches parents, is how to change the way they interact with their child. That formula is a successful one, and can be incorporated into an ASL/CI methodology. Parents will need to learn how to sign to their child, then speak to their child (or vice versa) while their child is focused on them. They need to include their child in everything possible. It is time intensive, and getting chores done will take about three times longer. Oh well. Language acquisition is way more important than the chores. So those of us who have been there will be more than happy to overlook your less than completely clean home, while we watch your child thrive.

K.L.

ASL students educate a hospital about Bilingualism

This is a great video created by ASL students at the University of Penn. There are quotes about the benefit of bilingualism incorporated with different video clips (from movies, TV, and YouTube). These ASL students will be using this film to educate staff members at Children's Hospital of Philadelphia, a leading hospital for cochlear implants.
Hooray! *hand waving*

The Biggest Myths

The following discussion is specifically about profoundly deaf children. Earlier, on Jodi’s blog there was a discussion about myths and inaccuracies. One anonymous commenter chimed in with a comment about how much they disapprove of implanting babies. I know this blog is aimed at families who are already past this discussion, and are more interested in providing both spoken language and ASL for their implanted kids, so I am probably preaching to the choir. However, sometimes we need to go back and visit other issues. Like myths. A common belief that I have encountered is that babies should not be implanted, that the child deserves to make this decision for him/herself. The myth then is that the implant will work as well for older kids and teens as it does for babies. An associated myth is that there is no way to estimate how successful the implant will be with a given individual, or that there is not enough information available to make an informed decision on the best age to implant your child. WRONG. On all counts. While it is true that you cannot guarantee results prior to implantation, there is plenty of information now to get a very good idea of how well the implant will work. The implant does not work the same for everyone, and to determine how well it may work for you, you need to take into account how much residual hearing you have had, how good your verbal speech is, what your hearing history is, how old you are and how determined you are to make it work, among other things.

Last week, my family attended a seminar on early language acquisition, put on by Cochlear Corp. Heather Whitestone McCallum was one of the speakers, and my daughter was invited to be part of her presentation. My daughter was invited because of her early implantation and subsequent success with her implant and verbal language abilities. We really enjoyed the seminar, and got some good information. Some of that information is relevant to this discussion. Dianne Hammes, with the Carle Clinic and Foundation presented a study regarding the outcomes of four groups of children, grouped by age of implantation. The results of her study showed that children implanted by 18 months of age had near normal speech and language ability as they got older, while those implanted after 19 months of age got farther and farther from hearing average the older they got. And the older they were at implantation, the more they deviated from the norm. Please note that this is a study of verbal skills only, and did not take sign language into it.

There has been quite a bit of research regarding age of implant versus level of acquisition of verbal language that supports that study: see here and here and here. These are just a few of the many results I came up with when I Googled “Effects of early implantation on speech and language”. All of them agree that earlier is better, and that children who are implanted by 18 months of age have a very good chance of achieving speech and language abilities in the same range as their hearing peers. This does not make them hearing. It means that their brains can understand verbal language at the same level.

The important point here is that the brain is an integral part of the success of the cochlear implant. How well the brain can integrate sound is directly connected to the age at which the brain is introduced to sound. By the time a child is old enough to decide for him or herself, they are well beyond the age when the brain can easily integrate sound into meaningful understanding. So the parents who choose to wait and let the child decide, are actually choosing against getting the implant. One way or the other, the parents DO decide. It is far better for them to be intentional in their decision making. I know parents who are now very angry at the Deaf Community because they were led to believe that they could wait, and it would not impact the success of the implant. When they found out otherwise, they felt that they had been lied to by the Deaf Community. This serves nobody. It is more important to keep the lines of communication open, and keep the relationship intact than it is to have the parents follow the “ASL only” ideology without full understanding of all of the options.

The children who will have the highest success with both American Sign Language and the verbal English Language are the ones who are implanted prior to 18 months of age and who are instructed in both English and ASL from birth. This will take dedicated parents and a supportive community working together.

K.L.

Support Group for Deaf Parent/s of CI Children: CICDA!

CICDA – Cochlear Implanted Children of Deaf Adults, a new parent support group is founded!

To the deaf parents of CI child(ren) and those in process of receiving CI,

-In what ways have members of the Deaf community reacted to your decision to implant your child?
-What are your reasons for getting a CI for your child?
-Are you trying to figure out the best choices for your CI child?
-Is your CI child struggling with her/his identity? Is she/he transitioning smoothly between Deaf and hearing worlds?
-How interested are you about a possible gathering with other deaf parents and their CI kids?
-Are there other issues that have arisen from having your child implanted, which you would like the CICDA group to support/discuss/ or to which you would like to draw attention? i.e. sharing successes and struggles of our kids.

If you find the above to be issues about which you feel strongly--or about which you are curious, join, learn from, share with and contribute to CICDA, please join the CICDA group and email us at CICDA.group@gmail.com.

CICDA is a new private support group for deaf parents with CI kids who are part of the deaf community with a variety of communication modes such ASL, oral method, cued speech, PSE, etc. This group gives us an opportunity to be able to feel free to share experiences, offer advice, and keep updated with the latest research and developments. The number of deaf parents with CI children is small but has been growing steadily.

-Posted by a CICDA member

Faces of ASL CI Users

Note: Not all of the participants in this video are active CI users. The intention of this video is to show diverse members of the Deaf community that happens to have a cochlear implant and use ASL.

Bilingualism and the Future Generations of Gallaudet Students

Gallaudet University is going to have a campus-wide panel discussion about the future generation of deaf students and how bilingualism will impact these students!

Because of the increasing number of mainstreamed deaf students and deaf individuals with cochlear implants, the focus of this panel discussion will be on the impact of bilingualism for these students.

The panel will address questions such as:

• What are the attitudes towards the new "generation" of Gallaudet students, especially those with cochlear implants, those who come from mainstream schools, and new signers?

• How would the new generations of deaf students perceive the term "bilingual university"?
  

Panelists will consist of representatives of different groups on campus: students (undergraduate and graduate), faculty, staff, parents, and teachers of bilingual children.

Please spread the word and encourage others to engage in this healthy campus-wide discussion!

Can't make it?? This event will be recorded and hopefully broad-casted on the Gallaudet website when the video is ready.

What are your thoughts?

Good morning. It dawned on me over the weekend that it would be a lot easier to answer questions and clear up confusion if I actually knew what the questions and confusion was. So here is your chance to ask questions. Please try to limit them to cochlear implants, early language acquisition, or speech and sign language issues. I may not have the answers, but I will do my best to track them down. Some of the other bloggers on this site may also be the ones taking the reins and answering some of the questions.

I also have a topic for discussion. Within the Signing Exact English group that I have been involved in, the sign for the cochlear implant (snake bite behind the ear) was seen as derogatory and somewhat insulting. We instead used the letter C to I at or just behind the ear. This issue was discussed within the CI Circle several years ago, and since this group is nation and world wide, I know this is not strictly a local issue. The CI Circle also preferred the C to I sign rather than the snake bite sign. So now I want to know what you think. I would love to hear from CI users and those without implants. What are your thoughts?
K.L.

Methodologies

As many of you know, while I support bilingualism, I myself do not know ASL at all. My daughter, who is almost 10 now, lost her hearing at 7 months of age, and was implanted just after her first birthday. We looked at all the early intervention programs, methodologies and school age programs, and went with Total Communication with Signing Exact English (TC-SEE).  Click here to go to the school's website.  We started signing as soon as her hearing loss was diagnosed, even before she was implanted. And she picked up signing quickly. She also picked up spoken English after her implantation, and became primarily oral by the time her second birthday came around. We continued with TC and she entered a private TC school at age three. By age four, her receptive and expressive verbal language was above age level average for hearing kids. And her signing was just as good. Eventually she was mainstreamed, and the signing was dropped, because she simply didn’t need it. Her implant really does work that well for her. However, she is good at signing and we don’t want her to loose that. So she will be learning ASL starting this summer. All that having been said, the question remains, why didn’t we just start out with bilingual ASL and English?

There are primarily two reasons we went with a TC program using SEE instead of ASL. The biggest reason is that there were absolutely no ASL programs that included speech. Sure, if you wanted some speech therapy included, they would bring in a speech-language pathologist (SLP) once a week for a one hour session. But the TC program with SEE had all teachers and kids say and sign everything. All the time. It was a huge difference. And it had more than 20 years of test scores of the students showing that academically, it had high standards and results. The other reason was parental support. The TC program had tons of parental support for both the signing and the verbal aspects of the program. The ASL programs had plenty of ASL support, but absolutely none for the verbal aspects. That is one thing the TC program has in common with AVT. Parental support.

There is a general question floating around the blogosphere. “Why don’t the parents just add ASL to their Auditory Verbal Therapy (AVT) lessons, and make their children bilingual?” It would seem to be a simple and economical solution. It isn’t. To understand the problem, you need to understand AVT. Auditory Verbal Therapy. It is exactly what it sounds like. Hearing and speaking. No signing. It is not only how they teach AVT, it is a basic philosophy. They believe that to maximize the auditory pathway growth in the brain, they spend a great deal of time teaching the child to listen and speak. To add sign, means the child might get the information visually rather than aurally. That would not strengthen the auditory portion of the brain. There are plusses and minuses to this method. A big plus is that for early implanted children, it is exceptionally effective. The minus is that it doesn’t work for all children, and it really has problems with older implanted kids. And it leaves those children without nearly enough language. And those children have no ability to communicate with ASL folks in the Deaf Community.

So why do parents use this method? Parental support is a big reason. Proven results is another. So how do we promote bilingual ASL and spoken English for those families who have chosen cochlear implants? It isn’t enough to simply say “Add ASL to whatever methodology you are currently using”. Most methodologies either already incorporate a different form of sign, or are philosophically against sign altogether. And it is horribly unfair to ask parents to choose a methodology and then have them go against what they have chosen to crib in ASL on top of it. Since most parents are hearing, and generally new to Deaf Culture and such, they are understandably overwhelmed. They need to find a single methodology that supports them, and shows proven results. They need to visit the program, see the kids and talk to the other parents. What they need is an ASL English bilingual program that does everything in one program. One that provides ASL classes, speech and verbal language support and an understanding and acceptance of cochlear implants.

There are lots of ASL programs around the country. How many of them have successful verbal language incorporated into the program? If there are any, those programs need to be emulated by other ASL programs around the country. If there aren’t any, then a model needs to be created that can then be incorporated by other ASL programs. A national support system needs to be put into place so each of these programs can support each other, and so that continuing education can be implemented.

If we want parents to teach their children ASL and English, then we need to give them the programs to do just that. Do you know of a successful program that does this? We’d like to hear about it.

K.L.