5 years later cochlear implant baby revisited

Almost 5 years ago a YouTube video of an 8 month old deaf baby boy that went viral when his cochlear implant was turned on for the first time capturing the hearts of millions of viewers.




When this video came out many in the culturally deaf community weren't as welcoming and some were just down right cruel while some in deaf run discussion forums were intent on banning hearing parents of deaf children with cochlear implants. Most others were more understanding and reflectively mature about such procedures performed at such a young age on a deaf baby.

The Today website revisited the baby boy who was implanted is now 5 years old shared with readers on the some of the things that weren't known about the circumstances surrounding the reason to implant Jonathan at such a young age.

He's also a bit of a miracle. On Christmas Eve of 2007, when Jonathan was just four months old, he contracted bacterial meningitis, an infection of the membranes covering the brain and spinal cord that can result in brain damage or death. He was hospitalized and recovered; however, the infection took a heavy toll on the boy and his parents.

The article goes on to explain that Jonathan uses a walker to assist him with the walking since the bacterial meningitis he contracted gave him the equivalent of cerebral palsy. It has also left him deaf as well. The parents were given a now or never decision on cochlear implantation on the basis that Jonathan's cochlea was ossifying.

"We were in the hospital and because of the meningitis, we only had a couple of weeks to decide if we were going to do the cochlear implant," says Mark. "The cochlea was hardening because of the meningitis. We had a limited window to make a decision and if we didn't make it, it would completely ossify and we would never be able to do the implant in the future."

The Breauxs decided to go ahead with the surgery -- and to post videos of the results on YouTube in order to help other parents going through the same experience.

The parents explained:

"We spent lots of time praying about it," says Brigette. "We didn't know the side effects of the meningitis. We didn't know his physical limitations, if he'd be able to sign. We tried to give him the best quality of life."

Both parents say they're now positive they did the right thing. Indeed. If the boy was faced with the possibility of physical limits brought on by cerebral palsy like condition he should be afforded every opportunity on access to communication and language, and that includes having the cochlear implant.

How is he doing today?

Today, Jonathan is in kindergarten, attends speech therapy three times a week and uses both sign language and speech to communicate with others.

"In the last year, we've noticed his vocabulary is growing," says Mark. "A year ago, he was speaking barely one or two words but now he's combining words and enunciating much more clearly because of the speech therapy and just being able to process what we're saying. I think all of the input -- sounds, speech as well as sign language -- have given him multiple elements for communication."

There is another video that has gone semi-viral of baby girl, Marielle, that was implanted about the same time as Jonathan but received received her hearing aid at 3 month, and cochlear implant at 2 1/2 years old.

She is now 6 years old and can speak and read better than majority of her classmates at her neighborhood school. In the YouTube video the parent left a caveat for those haters in the pro-ASL/anti-cochlear implant camp:

Before posting any ill informed comments - she has been exposed to both ASL and cued speech but prefers speaking.

The girl was given three communication options, 1) ASL, 2) Cued Speech, and 3) speaking. It's not a wonder that the girl prefers to speak.  Yet, I think it's good to combine both cochlear implant and sign language at an early age so you have the best of both opportunities and language acquisition.

Dr. Karl White's YouTube Controversial Video?

Controversial only because people appear to be unwilling to watch on the TEDx YouTube presentation of what Dr. Karl White has to say about language, speech, and early detection and intervention on hearing loss in babies based on some of the comments received in YouTube. Virulent comments were made attacking Dr. Karl White for not supporting or recognizing ASL when in fact Dr. White covered ASL at the 6:20 mark to 6:44 whcih discussed two deaf children in their baby car seats who were communicating with each other in ASL.

"In short, American Sign Language is a complete language. They aren't just repeating words or naming things. They are having a conversation with each other. and ASL, if children are given a fluent example in their homes, and if we start early, is capable of doing that. They can communicate every bit as well as hearing people can communicate."

A pretty strong acknowledgement there by Dr. Karl White on ASL and deaf children.

From 1:10 to 2:16 in the video he discussed at length about Helen Keller by showing a video reel of her "reading" the manual alphabet in her hand. Dr. Karl White gets to the point the importance on the ability to engage and communicate with people rather than experience isolation from people. He even put up pictures of well known deaf or hard of hearing successful people such as Marlee Matlin, Beethoven, Vinton Cerf (Father of the Internet), Thomas Edison, Juliette Gordon Low (Founded Girl Scouts of America) and Jonathan Swift (author and clergyman). People who went on to accomplish great things and that deaf people can be extraordinarily productive and successful.

Yet the vindictiveness continue to fly and I wonder if anyone ever bothered to watch the whole video of Dr. Karl White?

I suppose it's not surprising is to see people who think Dr. Karl White made a statement saying that one communication mode is better than another. Hardly. Watch the video and see for yourself. He provided examples on the benefits of providing deaf children early access to language and communication. He even acknowledged that sign language is a "completely appropriate option that is chosen by many." He isn't even excluding the possibility of incorporating sign language as part of parents' early language and communication access for their deaf children if they choose to go that route. He has not once put down ASL in his video.

The whole point of Dr. Karl White's was the importance of early detection on hearing loss in babies and the need for early intervention when it comes to forming a foundation for early language development and communication access. Granted.  His oration was about access sound for language and communication development and the advancement of hearing technology and the huge strides on making those advancements compared to 25 to 35 years ago. He hasn't put down anyone and yet some comments in YouTube were explicitly aimed at Dr. Karl White with vindictive words.  A group who does not respect the right of those who have a different approach on addressing language and communication access in the sincere effort to help deaf children. Dr. Karl White certainly made it clear that his organization focuses on Listening and Speaking and that was the subject of his oration on TEDx.

Barb Digi and Professionalism

Barb Digi publicly resigned from the DBC in a YouTube notification to viewers a few days ago after only a few years in the organization. Despite the numerous controversies regarding the organization she made a point about pursuing an area with greater professionalism in her video if you read the transcript at the end. I agree. Professionalism is key to maintaining and keeping one's own integrity. I've noticed that she has tried to keep Deaf politics out of the way and focus on exemplifying on the positive on how signing can help babies, deaf or hearing, to communicate more effectively with parents.



The simplest approach is to show the positive side of signing (not necessarily "ASL" but signing in general) to parents of deaf and hard of hearing children and leave it at that. I produced a video showing an example of how a simple YouTube of my 1 year old hearing daughter signing at her 1st birthday celebration can carry more weight on delivering a simple message...communication can be understood between a one year old baby and adults.  That simple video message alone carries more weight than for highly visible members connected to an organization to go on a rampage, attacking people and other organizations because their views do not agree with that of DBC.  Once you employ yourself in an organization, what you do or say reflects on the organization's standard of professionalism. Once you abuse that then that organization loses its integrity because of the strong association with an organization and presents a very negative image of that organization. Leaders of any organizations must have a goal in mind on ensuring absolute professionalism. Once you lose that professionalism then any message or goal in an organization would lost or damaged.

Parents simply need to be informed and with that information they can make an informed decision. The parents still hold the trump card because they are the ones who make that crucial decision whether going for a cochlear implant or a hearing, using cued speech, SEE, ASL, SE, PSE, SimCom, or oral-auditory approaches. Even the decision to employ the help from John Tracy Clinic, AGBell or NAD. The key understanding here is that it is ultimately the parents' decision for their deaf or hh child on what they feel is best. The decision does not rest with the DBC. Not Gallaudet University. Not NAD. Not AGBell. Not John Tracy Clinic. They do not own babies with hearing loss. All they can do is provide the necessary information so parents can make an informed decision. Politics will simply turn parents off. That's what professionalism is all about. Informing parents and not let politics get in the way by harassing people for their decision or opinions on other mode of communication or educational approaches that people think are good.  By publicly going after people for having a different opinion or approach would push any message about signing for babies out of the window. I think Barb Digi understands that. So does Amy E. Cohen.

And with that, I sincerely wish Barb Digi all the luck and successes in her professionalism goal and new opportunities in helping parents understand the value of signing for all babies. Politics is not the answer. A simple positive message is the answer. Step into that mud puddle of politics, then you risk tainting your own professionalism and an organization's  own standard.

Good luck, Barb. I mean it.

Make cure for hearing loss mandatory by law for deaf babies if stem cell prove successful?

According to one Deaf person in a deaf forum he felt that deaf babies and toddlers ought to be cured for their hearing loss if stem cell proved successful and see that a law making it mandatory for them to be treated.

stem cell consistently proves to be 100% successful, I will have unwavering support for it and will want to see a law making it mandatory for toddlers, not adults.

Agree or disagree? That day may actually come, and it'd simply be a matter of time. And this is a contention that worries many people.

"Deaf group attacks stem cell researcher for his work on the cure for deafness"

"Arrests were made against a small group of Deaf people who attacked a stem cell researcher for his work on finding a cure for hearing loss. The attack took place at the researcher's home where he sustained multiple injuries. He was treated at a nearby hospital and released. The attack occurred while he was home alone. Graffiti was spray painted on the living room walls and elsewhere in the victim's house with words like 'Audism is wrong,' and 'Deaf babies do not need your help,' along with several epithets. The group, based on the graffiti, named themselve as 'Deaf Crusaders.' "

Could this shocking news conceivably happen someday?

Let's hope not. But with researchers working around the clock all across the United States (and the world) on the cure for hearing loss (see here, here, here, here and here) it would be a matter of time until a cure could be found for various kinds of hearing losses. For some Deaf people they would consider these scientific advancements as a threat to their Deaf culture (see "Will Deaf Culture Die Out Someday - Part I and Part II) should a cure finally be found. And certainly among those few who do view a cure for hearing loss as a threat there could be potentially smaller subset of Deaf extremists who may resort to the use of violence against stem cell researchers on the cure for hearing loss. As with any group there is always a few bad apples who will resort to violence as their means of protesting (see vandalism question at Gallaudet protest). Researchers have been attacked in the past before for their medical work.

Police said several students from the University of California, Santa Cruz (UCSC) attacked a researcher, who uses mice to study breast cancer, at her home Feb. 24. (2008)

The biology professor, who declined to give her name to protect herself and her family from more violence, was at home with her children and husband when the alleged assailants attacked her home just before noon. The suspects attacked the professor’s husband and then fled the scene in a vehicle. Because the incident happened in daylight, the husband, who suffered minor injuries, was able to write down the license plate of the car.

If a bunch of students went after a professor for her medical work on mice to the point of terrorizing and injuring a researcher then it wouldn't be inconceivable that a Deaf person (or a small group of Deaf people) with extremist tendencies to attack a researcher working on a cure for hearing loss. Or for that matter supposingly a cure has been found would a research center get vandalized and broken into in the attempt to "stop" the cure on deafness from getting out. There is always that possibility. It may be small or even non-existant but certainly a possibility based on fear and frustration.

The above news is a hypothetical one but the fact remains that there are always somebody with extremist tendencies who will go further, even to the point of injuring, or heaven forbid, murder a researcher in the name of stopping medical advancements, for example, such as for the cure on hearing loss.

DBC's credibility gap?

Here's the news on AG Bell giving out awards to people who made significant contributions to the hearing loss community that got some Deaf people freaking out over in Alldeaf land. The hatred for AG Bell is just dripping. So, that got me thinking and looking.

On March 1 and 2 there will be an EHDI (Early Hearing Detection Intervention) conference to take place in Chicago. And when I checked out the Exhibitors List I noticed that DBC (Deaf Bilingual Coalition) will have a booth there. So will AG Bell.

Hmmmm.

Now, about the DBC, it's not a surprise that they have a relationship with the AFA (Audism Free America with link via the DBC website) by going "on record as being supportive of AFA" as seen in Dianrez's blog. And the fact that John Egbert and others of DBC attended an AFA protest rally last year in April 2009 tells a bigger story about the DBC's own organization and the people who run it. The AFA is hardly separate from DBC's own organization and its ideology where both groups have specifically targeted AG Bell. DBC has yet to remain neutral in this regard and keep to their mission instead. But the leaders and members of DBC cannot even be kept separate from the AFA group when it comes to DBC's mission as an organization.

"For now, it was an honor to meet many bloggers that first came to my attention through DeafRead. Who could forget meeting in person: John Egbert, Insane Misha, Ella Lentz, David Eberwein, Ruthie Jordan, Aidan Mack, Sharon Duchesneau, Jehanne, Robin Polin, Candace McCullough, Tami Hossler, Patti Durr, Pinky Aiello, Star Greiser, and many others whose faces I recognized but didn't get their names."

Many of the names seen in the Board of Directors and Members list on the DBC website are known to heavily dislike AGBell, even Brian Riley who helped write a letter for DBC used "fighting words" against AG Bell. It sure doesn't make them that much more credible, I can tell you that.

Here's another problem.

The DBC seems to lay claim on ownership of all deaf/hh babies by calling them as "Deaf babies" or "Deaf infants" with a capital "D" (see "Big D, small d") which denotes cultural deafness.

I. What is the Deaf Bilingual Coalition?

A. The Deaf Bilingual Coalition (DBC) is a community of Deaf and hearing people whose goals are to promote language acquisition, social justice, and quality education through the awareness of ASL and its excellence in cultivating the critical intellect of Deaf infants and young Deaf children.

B. The DBC’s mission is two-fold: We emphasize the importance of the social, emotional, linguistic, and cognitive aspects (of ASL and all natural sign languages) pertaining to early visual-language acquisition for all Deaf infants and young children; and to make the general public aware of the prevalence of misconceptions and misinformation that devalues ASL.

C. Since its inception, the DBC has empowered people to set up state chapters to research and explore early intervention programs, the Deaf education system, and to mentor hearing parents of Deaf babies to help equip them with critical information on language acquisition and development.

D. The DBC's original core committee was composed of volunteers who had all experienced bilingualism in their upbringing or been impacted by bilingual education. John Egbert of Minnesota founded the DBC in the summer of 2007.

Babies are born with a hearing loss. Babies are not born "Deaf" if from hearing parents. Maybe so for Deaf parents as they see their own baby as a Deaf baby but certainly not the case for hearing parents. DBC does not own these deaf/hh babies. It's the parents' decision, they decide and not DBC when it comes to their own babies and whether to call their baby a Deaf baby or not.

Next, I question whether DBC really does "mentor" hearing parents of "Deaf" babies. Do they get all pushy to try and somehow force their ideology onto unwitting hearing parents by making them aware? Or is it better to inform parents of deaf/hh babies by using positive examples of ASL rather than resort to conspiracy talks, continued negative remarks and darts and daggers aimed at AGBell whether implied or directly, and the continued bringing up old history rather than to look forward to the future in a positive way?

Having said that. You know what else I think? I think all hearing parents of deaf/hh babies should be informed of DBC's members and leaders past actions so that at least hearing parents can be fully informed about DBC's background and their ulterior agenda lurking in the background by continually attacking AG Bell in one form or another. AG Bell certainly doesn't do that by going after organizations by attacking them and use protesters as their pawns. AGBell has a mission to adhere to but they certainly do not attack ASL and certainly noticed past Deaf protests against them since 2007.

Since July 2007, another group affiliated with AFA has been staging demonstrations at AG Bell national conferences and state chapter meetings claiming that AG Bell is against sign language. In an effort to clarify its position on this issue, the AG Bell Board of Directors approved an official position statement on ASL which states, in part, “AG Bell acknowledges that a chosen approach depends on culture, family interests and desired communication outcome. AG Bell believes that the language and communication approach chosen should be based on an informed decision made by the child’s parents/family and based on their own unique circumstances…AG Bell does not believe that ASL should be prohibited or restricted as achoice, nor does AG Bell advocate against learning ASL as part of a child’s overall development if that is what the child’s parents desire.”

Regardless, AFA initiated this most recent demonstration at AG Bell headquarters and issued a call to action for supporters to demonstrate at oral/aural only programs in their local areas; in other words, to demonstrate at local pre-schools that offer a listening and spoken language educational approach for children who are deaf.

“This latest effort to target pre-schools and pre-school children I can only describe as unconscionable,” stated Graham. “To protest and criticize families who choose a particular communication and language approach is the height of intolerance.”

That way hearing parents can make an informed decision over a variety of issues and concerns, including any hidden agendas, if any. A good way to assess, for example, DBC's own credibility problem. Those on the outside may certainly see them as cry babies.

Next I can't help but wonder what are the odds that there'll be a protest by a bunch of Deaf people outside the conference to raise hackles about AG Bell just as they did over a year ago as noted in AG Bell's press release letter denouncing the protest? What are the odds that a protest will occur, if it ever, and that it'll have connections to AFA and, what else, the DBC organization just like before?

Makes ya wonder, doesn't it? We'll see how it goes March 1 and 2 in a few weeks from now.

*Note: apologies to Cox and Forkum for the cry babies picture that was slightly modified.