This is a quick, brief response to the NAD post in their advocacy blog about their work in Early Hearing Detection and Intervention Programs. The point at which parents must be told about the availability of ASL as a positive option in addition to the cochlear implant, is at the point of identification after birth. At last count, I have 21 CI Kid blogs in my collection of CI Kid blogs to follow, and a clear pattern is emerging. Parents are leaving the hospital with their newly identified deaf newborns, already aware of and determined to get cochlear implants and focused on hearing and speech as the sole goal. They are not being told about sign language as a positive option. If they are told about sign language at all, it is often not in a positive way.
The ones who have the most influence on the parents at a very vulnerable time are the ones who inform the parents of their child's deafness. That person is usually a medical professional at the hospital. These medical professionals, as we already know, are focused on the treatment aspect, not seeing sign language as a valid form of additional "treatment." And that's if they have a hospital caring enough to have someone talk to them. In one CI kid blog that I read, the parents found out about their baby's deafness through a notification card left in the baby's going-home basket. Needless to say, that blog left me stunned at the callousness of the hospital.
Recommendations from the NAD are not going to help unless the medical professional who notifies parents about their baby's deafness is routinely accompanied by a non-medical professional who can simultaneously notify the parents that they have additional options. We may need new laws to ensure that this takes place. If the NAD has supported EHDI for so many years, then why do we still routinely have only the medical professionals notify the parents of their child's deafness? We need to have mentors knowledgeable about sign language on-call by the hospital - and the hospitals need to be required to call that mentor.
If there is interest, I can do a follow-up post with actual examples from the CI Kid blogs of how the parents found out their child was deaf and how they were treated/informed at that point in time.
Monday, October 01, 2007
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There you go, girl.
I had to reprimand NAD because they have been really silence UNTIL Amy Cohen Efron announced about the "Greatest Irony" in her vlog. All of a sudden, NAD decided to break the silence and post the blog telling us that they are taking action for deaf babies and made the proposal to the congress.
NAD has been supportive of the EDHI for long time, if they did, why did NAD not promote the medical and non-medical (audiologists, speech therapists, etc.) community in nationwide that there are additional options for the newly parents to decide and choose?
I get the feeling is that the AG Bell and NAD are having the limited communication over the issues. It is something that there might be the fishy situation between both of them. Eventhough, they are part of the deaf community. I could be wrong about this but I cannot judge any of them for what they were doing for the deaf community.
NAD must recognize and honor Amy Cohen Efron for her hard work and send the message to the nationwide in the information technology.
White Ghost
As a Ci parent, maybe I should record this story in the form of a post. I've never talked about it in the blog before. We had a bizarre experience with it too...
When my daughter Vivienne was diagnosed with deafness in Children Hospital in Washington, DC, we were not told about sign language at all. When we asked about American Sign Language, they quickly responded that it was not part of language acquisition and development that Vivienne needed. That was a little over 20 years ago.
Interesting that NAD hasn';t
wrestled with AGB emphasizing
ASL ASL ASL. Nothing. Zero!
Wish Amy Cohen Efron were
prezy of the NAD board a
long time ago. Now AGB's
so powerful with 50,000 CI!
Too late!!!
That post is like NAD swinging an old sword in the air. Nothing to strike or hit.
Yes, Jamie, bring out those CI kids stories with parents telling how they were told of their child's deafness and of the counseling they received subsequently.
I was informed on my baby boy's second day that he "did not pass" his hearing screening test. Period. The only thing given us was a follow up test at the audiologist's that included a brainstem test and confirmed his deafness.
We then went on our own to survey the local schools for the deaf and chose one to enroll him at the age of three months in their infant education program. Being deaf parents probably was the reason we were given absolutely no guidance whatsoever.
Only in casual conversation were we asked about CI's and we took care of that for all time with one word. In effect, we designed our child's early intervention by default.
I know I've written piecemeal about our experience on my blog. but I'll try to succinctly describe it here: When E failed his newborn hearing screen, we didn't even know it! They said he was "referred" (and I'm like, "to whom? isn't that a transitive verb?"). Thankfully they followed up with us to see if we had gotten additional tests, which was my first clue that we should. So then we started a series of tests with one audiologist at Temple Childrens (we're in Philly). He did all the tests, tested for fluids, did the ABR, and told us there was "no response". We didn't even know the level of his hearing loss. No mention was made of assisstive devices. They didn't give us any more information except a packet of numbers for Early Intervention of surrounding counties. So the ball was in our court.
Sometimes the fateful phone call to Early Intervention just haunts me. I talked to the coordinator and she wanted to know if we wanted to sign with him. Since my only experience with deafness previous in my life was Linda on Sesame Street, I said, yes. And from then on we got services from Pennsylvania School for the Deaf instead of Clarke. I had zero knowledge of anything at that point except this vague idea that deaf people sign.
Since Temple was so unhelpful, we switched over to Children's Hospital of Philadelphia when E was about 7 or 8 months. They gave us a clear diagnosis right away, gave him a hearing aid, and gave us a packet on CIs. They, too, were pretty hands-off on educational recommendations. Throughout our process with them, they have continued to support our now much more articulated goal of bilingualism. Their main concern is that people are getting some educational support, but they leave it up to the parents to decide what kind. Since we were already receiving EI services, I don't know what they would've told a newly diagnosed kid.
I appreciated hearing dianarez's story. I wonder how deaf parents' experiences are different.
I find it very interesting how the tables have turned. 20 years ago, when my daughter's deafness was first diagnosed, the professionals told us only about total communication and a school for the deaf that really wasn't even TC but was, instead, conducted only in sign with speech taught one period a day. From the way that they presented the information, we thought that that was our only option. However, through some fortunate connections, we learned about A.G. Bell, Auditory-Verbal and, eventually, cochlear implants. Today, my 20-year-old, whom the professionals said would never speak English, scores 100% on tests of auditory-only comprehension and not only speaks beautifully but also does so fluently in two languages, English and French.
For the past 20 years, I have fought for parents' rights to get accurate information about all approaches so that they can make an educated decision that is the best decision for their family.
So, I would say to all of you that yes, parents should be told about the various forms of sign language, but they should also be given accurate information about CIs and the facts about their success as they truly exist and not from the uninformed and misleading viewpoint that I read on the deaf blogs. Perhaps if you focused only on the positive, that is what you think is good about your way of doing things instead of focusing on how terrible you think we Auditory-Verbal CI parents are, your message would come across better. You could then leave the presentation of the FACTS about CIs and Auditory-Verbal to those of us who have lived that approach.
When my child didn't pass the newborn hearing screen a few years ago, the hospital referred us to an audiologist at the Children's Hospital in DC. The audiologist performed an ABR test and diagnosed her with deafness. She gave us excellent recommendations including education options such as deaf schools, oral school, public schools, etc. The audiologist attended Gallaudet Univ. and received her degree there and that s probably why she was good at recommending all the options even if we were deaf parents. She didn't push us for a CI or anything. She did ask us if we'd like to receive hearing aids for our child and they were free of charge from donations at the hospital. We were very lucky to have a good audiologist who was sensitive and caring. If all the audiologists were required to attend Gallaudet and learn about the Deaf community, that'd probably make a difference.
As a parent of a 5 year old diagnosed at 18 months of age, we were given all of the communication options in an unbiased fashion. We were not only informed by our medical professionals but by our early intervention specialists as well. The Deaf Community expends a great amount of energy telling parents, like myself and my husband, that we are wrong. What you must remember is that our right as parents is to make choices that WE deem appropriate and best for our children. We did that in a thorough and extremely educated manner. We are proud of our choice, and we are in no way ashamed of his deafness nor is he. We have not denied him an inalienable right by allowing him to listen and speak rather than sign. It may be beneficial to look at statistics that might impact a parent's choice, such as average reading level of a high school graduate who uses ASL as his/her primary mode of communication. In my state, that's 4th grade. This statistic along with many others factor into parents' decision making. Again I stress, a parent's choice, not a "community's" choice. I feel strongly that had the technologies available now been available 30 or 40 years ago, many who now advocate for the Deaf Community would themselves be listening speaking adults just as our children will be in the future.
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