Eric Seneca's blog

The moment #cochlear #ci #hard-of-hearing

What is that horrific noise! I slam my hand down on the snooze button to end the devilish racket that pierces the silence of the early morning in south Louisiana. As I stir from my slumber and shift into just-awake, groggy autopilot. It’s a routine, shuffle to the kitchen; get a drink, turn on the radio, take a shower and prepare for the days events. With eyes half-opened I force myself from bed. I walk to the kitchen, go into the cabinet and get a glass. Closing the door less mindful than normal, it creates a large bam that could wake the dead; and me! I fill the glass with slow cascade of water from the kitchen faucet; more awake now, but still have in dreamland. As my slippers slide across the wooden floor like sandpaper on wood, I proudly navigate the various landmine of toys left by the children the night before without significant injury. Entering bathroom, the fog of the morning begins to clear. I flip on the music of south Louisiana and start to warm up the shower with a sudden rush of water. My mind turns to the events of the day.

It has been a wild six weeks, the birth of a new child, the events at work, the wonders of mind numbing mid-night feeding; thank God for my wife. It will be a busy day, major transitions at work and meeting about new software to be acquired. Oh wait. I forgot, our newborn son needs a follow-up visit with an audiologist. I cannot believe I have to waste my time to do this, why cannot my wife just handle it? Oh, I do not mind doing my share of doctor’s appointments, but I just returned to work after two weeks off from the birth, I hate not being available for work. And, this is a waste of time, we have been through this before, yes, I know, he failed this hearing test at the hospital. Seriously, our last son had fluid in his ears when they tested him at the hospital. Six weeks later, he was just fine and I had to pay to find out what I already knew. SLAM, I close the bathroom sink drawer. Now I need to go pay for another appointment, take time away from work, just for them to explain to me about fluid in the ears after birth and that everything is ok, something I already know. It is obvious nothing is wrong with the little tike; he responds, he cries, he laughs, he smiles and makes all manner of noise. Ah the baby is waking up as he begins to cry. See, nothing wrong, as my wife brings the little guy to see me. A morning yawn, a bottle, a cuddling on Momma, clean diaper and a bit of baby babble and all is right in the world. This will be a waste of my time, but the sooner I get it over the more quickly I can get back to something more significant for that day. Time to get this over with, lets load up the car.

Stepping outside this morning I find a beautiful October morning in south Louisiana. The repressive, stagnant heat of August has been replaced with a cool, crisp fall morning that reveals the impending onset of winter. As the wind whispers through the trees, the dogs of the neighborhood bark, the birds chirp in the distance and the annual duck migration flies over and lands in the lake behind our house. With coolness in the fall air, we struggle to get all three boys in the car and we are off to the appointment. As I start the engine and turn on the radio, my mind wonders to the coming examination, the ABR? Why is this even necessary? This is our third child and all have failed initial hearing tests; it’s usually fluid in the ears. Why are they going to the extreme of testing him while he is asleep? Makes no sense. As I pull out into traffic, I change the station from country to classical music. As usual, the monotony of rush hour traffic was an uneventful as ever. Finally, we arrive.

As we arrive, I start explaining to my wife how this is a waste of time an unimportant compared to what I have to do the rest of the day. Although she does not seem to agree, I try to convince her and myself that it is true, why is she worried? As we step up to the receptionist desk, the login process is normal. Landon is beginning to get cranky because we skipped his morning meal; he begins to stir. The uneventful login process and hundred forms to be filled out take the usual 20 minutes of time, but this must be done. They come out to us and let us know to try to get the little guy asleep. So in goes the bottle and after a full belly, he is out like a light. Then we wait and begin to think only distracted by the morning news playing in the background. “Seneca”, the nurse exclaims. We enter this long narrow hallway full of exam rooms. At the end we see a woman standing in the door waiting to greet us. The audiologist that will conduct the ABR test. She introduces herself in a whispered voice and suggests we begin the test. She hooks him up to the machine, and lowers the lights.  Suddenly, silence and the infernal beeping of this machine drown out the noise of the world. A repetitions beep of the ABR machine, a short “hum” from the audiologist. Another beep, another hum. I become vaguely aware that the tone of these utterings is not positive. After what seems an eternity, the test is complete and the lights come on. The audiologist turns to my wife and says, “I am sorry, your son has profound bilateral sensorineural hearing loss.” My response, “Wait, what, does that mean he is deaf?” Her reply, “Yes.” In that moment, I hear my wife softly cry, my mind wanders into shock and disbelief; everything falls into silence. I think to myself, “Now what?”

Method to my madness, #cochlear #ci #implant #research

To gather the largest diversity of participants for this manuscript, I decided to use Internet base support groups to get information. There are a number of large and active online communities surrounding the issue of cochlear implants. As the parent of a child with a cochlear implant, the primary investigator has been engaged with these communities for a number of years. Many of these are dedicated exclusively to parents of children with cochlear implants. After receiving institutional review board approval and consent of moderators of these online support groups, the investigator sent our a preliminary survey, consisting of 10 questions, to the following online support groups; CI Circle (groups.yahoo.com), CI Hear (groups.yahoo.com and facebook.com), Parents of Cochlear Kids (facebook.com) and Parents of Kids with Cochlear Implants (facebook.com), Cochlear Experiences (facebook.com) with only one group, Listen-up (groups.yahoo.com), declining to participate in the study.

The instrument consisted of five demographic questions and five open-ended questions about the decision making process of parents. For those parents that consented, follow-up interviews were conducted to get a deeper understanding of the meaning behind some answers via email. The initial survey remained open for the period of three weeks. The response rate on the initial open-ended survey was 42.53% or 42 parents choosing to answer. After reviewing all the submissions by parents, 33 agreed to answer questions beyond the initial survey. Of those parents that answered, 91.89% describe themselves as mothers and 8.11% describe themselves as fathers. The majority of parents, 78.38% indicated their children where bilaterally implanted with 21.62% indicating their children were unilaterally implanted. The mean amount time that has elapsed since implantation of their children was 4.78 years. Two parents indicated their child’s implantation had taken place within the past six months and one respondent indicated their child’s implantation was 20 years ago. It is important to note that many of these groups are worldwide including multiple cultures and languages. The countries represented by those that volunteered to participate in the study cover North America, Europe and the Indian subcontinent. All approach the decision making process with their own cultural influences. Despite the differences in culture, there was a commonality to the experience of each participant.

After the initial conversation, parents were contacted and thanked for participation in the study. Each received a series of electronic mail questions with follow up conversations. All interviews were conducted over the length of the study via asynchronous electronic means. All participants agreed to conduct the interviews in English given the potential language barriers between the researcher and some participants. Finally, synonyms have been used to protect the identity of participants.

In addition to this survey, I have been recording a personal journal of observations of Landon. That journal contains thoughts and research on the decision making process we underwent during the period after diagnosis and before implantation.The approach to this manuscript was to determine if there were any intersections of experiences between the primary investigator's journal and the reactions of those surveyed. My goal was to  explain the lived experiences of the researcher as well as that of other parents of CI children with the context of making a decision about implantation and its immediate aftermath. I ask questions of the participants about the positive and negative effects of implantation and subsequently reported. The researcher trusts the reader to draw their own conclusion as to the validity of these findings. 

Research, manuscripts, flooding and #cochlear #implants

Well, it has been more than a while since I have been able to update this blog, but I am excited to report back after such a long delay. Back in the summer of 2015 I began a research project that I expected to take a year. The effort produced about 35,000 words of a manuscript. This manuscript included all my field notes since Landon was born, research from my doctoral studies and a new survey I conducted with parents of CI children from around the world.  This manuscript was written over a nine-month period when I delivered a draft of it over to a former professor for review.

I thought about compiling a book, but given my limited publishing experience as well as the additional time it would take to get the manuscript published, I decided to take the writings and divide it up into a series of blog posts on this site. Then, the unexpected happened. In August of last year our house was flooded in the Great Flood of 2016 in South Louisiana. Jennifer and I have spent the past 6 months rebuilding the house, which is now livable. So, here I am a year and half after my last post ready to start sharing my most recent research project. To that end, I will start with a few mechanical issues first; reflexivity and methodology.

Disclosure

I have a bias. I feel it is important for me to state this fact upfront to you. This is not an easy statement to make; all my educational training has been geared toward becoming an “unbiased” or “detached” researcher. But, I cannot divorce myself from the fact that both my wife and I decided to have our newborn son implanted with a cochlear implants at a very young age. Let me be clear, I am a normal hearing person, unless you ask my wife. But, eight years ago, my wife and I made a decision for our son that introduced us to a new, rich subculture. Although I do not have a cochlear implant myself, my role as a parental advocate does not allow me to detach myself from the community, which I have been observing for eight years. I acknowledge that my writing, research and conclusions agree that implanting a pre-lingual child is a positive decision. As a parent who has decided to implant a pre-lingual child, I cannot detach myself from that decision and I tend to view that decision in a positive context. To combat this tendency, I have not cherry-picked the research surrounding cochlear implants. My goal with this book is to inform you the reader of my journey and that of other parents. As a member of the cochlear community, I believe that I am position to provide a unique viewpoint of that community and its struggles and needs. I am keenly aware of the ethics of studying a community for which I am a member. Given the issue of reflexivity in this form of qualitative research and the potential influence of my position as a member of the community that I am studying, the goal of this work is to give the reader an insider’s view of aspects of that community.

The idea for this book started as a blog. When my son was diagnosed, I was clueless about implantation and deaf issues. That blog started by my wife, then picked up by me, turned into an academic career that has culminated in a doctoral degree and this manuscript. Specifically, I wanted to produce something that would give others information I did not have when trying to make this decision. Over the past eight years, I have helped a number of families by providing information about learning, cochlear implantation and other issues surrounding this new cochlear community. Over that timespan, I have collected those thoughts in a personal journal, research and field notes and online blog. These sources where created from interviews with other families, research from academic libraries, work with online support groups for cochlear parents and other sources. The goal of this manuscript is to provide you the reader with an inside view of the decision-making process that I went through as opposed to the traditional unbiased, detached view researcher.

This manuscript will explore issues that I wrestled with during the time that my wife and I were trying to decide the best course of action for our deaf child. It will focus on what I have learned about language acquisition and cochlear implantation. It will use not only my words, but the words of other parents that decided to pursue the same route. My goal is to convey my story and the stories of other parents who have faced what you are facing right now. I hope to lay out the latest information about cochlear implants, learning and other aspects of this new cochlear culture that is available at the time of this writing and hopefully arm you with information. It represents the honest understanding of the author in all areas of decision-making and current research in the areas of learning, cochlear implantation, and deaf and hearing cultures.

Many of my professors and colleagues that have been privy to this manuscript in various forms and have encouraged me to publish this as a series of scholarly articles. Over time, I have felt that the constraint of space in a traditional scholarly journal format was not the best venue for this manuscript. Although I feel this is a work of worthy academic scholarship, it is not intended for an audience of academics. It is my intention to write this for you, the parent of a newly diagnosed deaf child. To do that I have divided this book in what I consider a number of unique ways.

To compile this research, I decided to take a grounded ethnographic approach. What does that mean for you as the reader? Ethnography is simply recording the life and events of a particular group. As you have surmised by now, the group I have chosen to look at is the new cochlear community. This group consists of those individuals who have been implanted with a CI and their families. The approach I have taken to collect data and research for this book can be characterized as one that takes a multiple instrument approach to generate a picture of the parental socialization processes post diagnosis of child hearing loss. In typical qualitative research one would review all interview data and code them for meaning. From those coding, a theory might be developed from the “ground” up. With this writing, the lived experience of the researcher is matched with the other similar experience of parents to develop the major themes discussed in this book. Unlike most ethnographies that seek to describe the surroundings of what I see and experience, I have attempted to derive some “patterns” or theory from the data I have collected over the past eight years. Specifically, this manuscript will attempt to document the process of decision making of parents rather than a narrative story about that decision-making. The idea is to give you a conceptual rendering of the thought process that I and many other parents who have chosen to implant their child.

To accomplish this, I documented the vast majority of my thoughts and decisions as part of personal journal during that time period. In many cases, qualitative research looks to the outliers to develop a richer, deeper understanding of an issue. The approach I have chosen to take varies slightly from that perspective. I have chosen not to select any outliers but compose all the collected data to align with my observations throughout my time working with my own son and others. With this approach, I hope to synthesis the most current literature in the areas of cochlear implants, learning and deaf cultural issues.

The next installment of my manuscript will include the methodology I used to gather information for this writing.

Good food, great friends and bilateral #cochlear implants

Last night I had a great dinner with some old college friends I have not seen for a while. It was the first time they had a chance to meet Landon in person. Of course they have been following my post on Landon for years, so they knew the story, but they really got to see him speak and hear in a noisy setting. He was his normal, nine year old self. As we where talking the subject of unilateral versus bilateral implants came up with the question of why bilaterally implant if kids are good with one ear? This is a question I frequently get and it always interesting to answer.

When Landon was implanted, there was much research showing that students with a unilateral implant could achieve high levels of auditory functioning with a single implant. From my research, the issues that seem to be the most concerning to me with the unilateral route was failure of a single implant and sound localization.

As a parent you always wonder, did I make the correct decision. When I got home I started to think about the question deeper and decided to revisit some research on the subject.  At the time, we felt there were many more advantages to bilateral implantation For me, academic outcome is a very good indicator of future success of Landon. I specifically read information on specific outcomes for school age children.

That research uncovered an interesting article, Academic Outcomes for School-Aged Children With Severe–Profound Hearing Loss and Early Unilateral and Bilateral Cochlear Implants. In this study, Sarant, Harris, and Bennet (2015) tested 44 eight year old children with severe to profound hearing loss at birth. These researcher compared the academic performance these implanted children versus normal hearing children. What they found was that implanted children performed lower than expected in comparison to hearing children. Of those 44 children some where bilaterally implanted and some where unilaterally implanted. What the they found was that the children with bilateral implants achieved significantly higher scores in the areas of oral language, math and written languages compared to the unilaterally implanted children. Furthermore, they single greatest predictor of success in their research was the age of second implantation. The younger the child is at the age of implantation, the more likely they are to have later academic success.  They found that, “Bilateral CIs give significant perceptual benefits over unilateral CIs through binaural redundancy (improved speech perception through two ears, because the brain has two opportunities to process the signal), binaural summation (when combined from two ears, the signal is slightly louder), and the headshadow effect (the head shields sound, such that the signal will be softer at the ear further from the source)” (p. 1080).

Of course one study does not make a definitive finding, but given the growing evidence of academic success for students with bilateral implants, it makes me feel more comfortable that my wife and I gave Landon the best chance for success in life.

 

Sarant, J. Z., Harris, D. C., & Bennet, L. A. (2015). Academic Outcomes for School-Aged Children With Severe--Profound Hearing Loss and Early Unilateral and Bilateral Cochlear Implants. Journal Of Speech, Language & Hearing Research58(3), 1017-1032. doi:10.1044/2015_JSLHR-H-14-0075

Research, writing and camping

As you can see, it has been a little while since my last post. The main reason for this lack of posting is the amount of writing I have been doing for my latest research project. Last summer I spend a good bit of time working on a project to interview a number of parents with children that received pre-lingual cochlear implants. Since that time I have taken a new position at Louisiana State University. Over the past year I have been getting adjusted to my new position and writing up the results of the study. So instead of taking some time to write on this blog, I have been putting all my efforts into producing a manuscript for publication.  

My goal for this manuscript is to document all the work I have been doing with Landon over the years. Mainly, it is a synopsis of my personal journal and experiences with the development of mobile applications and the UME website. As Landon says, I am writing about his ears.

My other major pastime has been to take the entire family camping. Last summer, my wife and I decided to purchase a camper and spend some time on weekends with the kids. We have worked to take them into nature and allow them some unplugged time. We hike, fish, cook and just generally enjoy each other’s company. Over those months we have developed a pretty competitive domino league. Typically, Bella and Landon “win.” There will be more to come in the future, this blog has not been abandoned. 

Meeting Jim Patrick at the #Cochlear Celebration #Cochlear2015

Just wanted to share, my 8 yr old son (bilateral CI's at 1) at the Cochlear Celebration at Disney last month. He went up to Mr. Patrick, shook his hand, and said "Thank you for helping to make my ears". To which Mr. Patrick got down, gave him a big hug, and said "Thank you for telling me that". One of those unforgettable moments. (Jim Patrick is the chief scientist for Cochlear that worked with Dr. Graeme Clark to invent the first multichannel cochlear implant)

#Cochlear #Implant day, he is sounding good

Yesterday was national cochlear implant day.  It was wonderful seeing all the great videos on Facebook from the various children and adults who have been implanted. Landon wanted to make a video so his Mom broke out the iPhone. Here is his message to everyone, as you can see we are still working on trying to get him to pronounce words with some precision. He is getting better at it, but still some work to go. The biggest problem he seems to have is with L’s. His sister, Bella, is pronounced Bewwa. It is something that we need to correct him on almost every time he calls her name, and that is a lot. But, this video shows the little guy working hard to get everything correct. He did a great job!

Reflections from the #cochlear celebration #cochlear2015

Well, today it’s my first day back at work after a wonderful vacation/conference experience in Orlando, Florida. As you can see by my last post it has been some time since I have blogged about cochlear implants. Over the past six months, my career has undergone a position upgrade. I was fortunate enough to be hired as Director of Information Technology for the LSU School of Veterinary Medicine. This position has been challenging and rewarding with a number of positive things happening at the vet school. I am lucky to be able to work with such a fine group of people stretching the boundaries of knowledge on a daily basis. This new position has dominated much of my time over the past eight months, but now as I begin to settle into the new position, I am able to focus back on my research and move it forward.

My wife and I booked our trip to the celebration back in August right after starting my new position at LSU. I knew taking this new position; I would not be able to blog as much as I had in the past. But, I also knew that at some point, I would be able to focus some of my time back on my app research.  To that end, I decided that I would use the celebration to as a goal. I wanted to get the information technology operation at my new position in such a condition that I could focus back on my other work. I have accomplished that goal. Just recently I upgraded the Ling 6 at to version 1.8 removing the ads. I am working on fixing an upgrading some sounds on the Learn to Listen app and I have another project in the works.

I thought the breakout sessions at the celebration were excellent. I got to see neat product advancements for the Nucleus 6 product. I also attended a wonderful lecture on the service that student and professionals to use. I met some great people and heard some interesting stories. I think my one criticism of the celebration is there seems to be a hole in the information being presented. In my opinion, not enough time is spent by the CI vendors to help parents understand how people “learn” language. Because CIs are seen through the lens of a medical procedure, there is much left out about how a student learns and acquires vocabulary.  In the future, I would like to see Cochlear America bring in professionals in the area of education and language development to help parents understand what is going on beyond speech therapy.

Building a new sound app for #cochlear children

Over the past month I have spent a lot of time working on a new mobile app for children. Unfortunately, this has not left me with much blogging time. This new app is working on environmental sounds and trying to help children associate sounds to imagery. What is making this app difficult is that I am trying to design it for a child who cannot read. So, it will require audio instructions throughout the entire app. That is a new concept from a human-computer interaction design aspect for me. I hope to have a prototype completed by the end of next week. Till then, I will keep monitoring the boards and Facebook for issues concerning CIs.

Executive Functioning, the math is right, the conclusions are all wrong #cochlear #implants #research

A few weeks back a number of trade magazines had the following type of headline, “Some Kids With Cochlear Implants Face Cognitive Risks.” [1] That headline is an attention grabber; it conjures up in the mind a correlation between cochlear implantation and cognitive risks. This article cites research coming out of Indiana University looking at 73 children implanted before the age of seven in comparison to 78 children with normal hearing. They report that “Delays in executive functioning have been commonly reported by parents and others who work with children with cochlear implants.” [1] In the article, they go on to state that

“In this study, about one third to one half of children with cochlear implants were found to be at risk for delays in areas of parent-rated executive functioning, such as concept formation, memory, controlled attention, and planning,” he said. “This rate was two to five times greater than that seen in normal-hearing children.”

This information was widely reported on multiple CI parents’ websites and the reaction was strong. Many felt the study had no validity because it did not compare CI children to deaf non-implanted children. Still others, I believe, correctly defined the issue. The problem was not the study, it was the headline used by the authors. After reading the headline, article and reviewing the poster presentation for the study, the news article without a doubt puts forward a false correlation, one the researchers did not present in their poster. I guess that should not be a surprise, sensationalism in journalism, but I also think there is a fundamental misunderstanding about children with cochlear implants and their learning curve. To illustrate, lets explore the idea of executive functioning.


What is Executive Functioning? Executive functioning is the application and synthesis of acquired information. In education we like to call it higher order thinking or crucial thinking. Here is a commonly accepted taxonomy for learning called Bloom’s revised taxonomy. If you look at the graph, you will see the various levels of cognition as defined by Bloom. What we call lower-order thinking are simply memorization and understanding a concept. As you progress up the taxonomical triangle, you see that you move from simply acquiring information to applying, analyzing, evaluating and creating with that information.

Executive function would exist at the upper parts of the triangle. It's a learned activity. Students need to be explicitly taught to use these skills. Most speech therapy focuses on sound and the acquisition of words, but in many cases do not give the student the opportunity to apply that information in real and meaningful ways. Much of what I have observed through my own son’s speech therapy is behavioral in nature and exists at a lower taxonomical level. At first this is completely necessary. A child with a CI needs to learn how to identify sound. Their brains need a period where they can start to integrate the auditory sense. But, at some unknown point, their brains understand how to use sound, but in many cases we just keep feeding in lower order information.

What is suspect in this study and many is the idea of the control group and how we as educators go about helping children with CIs. Maybe the reason we continue to find issues with the development of CI children is because our measure and approaches to their education are all wrong. As researchers and educators, we are trained to look at a norm, see a deviation, develop a plan to address that deviation and then compare to the norm to see how the intervention worked. This concept of basic scientific method works as long as the norm you look at is the correct norm. Our math can be completely right, the method sound, the treatment and control group intact, and the conclusion can be all wrong.

Comparing CI children to normal hearing children would seem to be a very good methodology, but it is not. CI children have too many factors different from normal hearing children to ever truly meet their milestones in the compressed time one learns spoken language. The mainstreaming goal is to fast pace a CI student so they can catch up, but the problem with this approach, learning does not happen that way. We learn langue over a long period of time through a recursive process of informed trial and error. During that period a child constructs their own understanding of language through years of exploration, correction, reflection and resolution of ideas and concepts. Understanding words and sounds is a lower order thinking process, but putting together meaningful language requires us to adapt and synthesis language through meaningful social experiences. We do not learn higher order thinking from approaches that ask us to simply identify and memorize.

Finally, maybe it is time for CI researchers to identify a new control group, high performing CI children that were implanted at age one or less. Throughout the literature I continue to see studies that compare CI subjects that have a wide variation in implantation date. For instance a 2011 study that came to the same results about executive functioning risks, looked at children that had been implanted before the age of seven, but the mean implantation age was 33.7 months. So on average, for this study, the average child was functionally deaf for the first three years of their life. Then at age three, they are implanted and introduced to sound. Then over a period of time they are measured for executive functioning and we find a deficiency. That does not seem to me to be a sound method in that we know from the literature factors such as socio-economic status and age of implantation can have significant influence on results. Throughout the literature we see children implanted at a very young age performing high on most scales. We need to recognize that CI children have different developmental experiences and patterns. Those patterns need to be identified and applied to subsequent generations of research as the control.

Source: http://psychcentral.com/news/2014/05/25/some-children-with-cochlear-implants-face-cognitive-risks/70335.html
 

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