Turn On My Ears!

Improving Literacy Outcomes in Children who are Deaf or Hard of Hearing

2008-10-09T14:32:00.000-04:00

Drew's Dad and I were finally able to attend Deaf Initiatives Navigating Your Child's Future presentation this past weekend. The presentation was supposed to take place back in March, but was postponed due to a snow storm.

One of the areas we have been concerned about is literacy. As the parent of a newly diagnosed child with hearing loss, it can be startling to learn that many deaf and hard of hearing individuals only reach a third to fourth grade reading level. I have learned that this is often because deaf or hard of hearing children are taught "whole word" reading, where they actually memorize the look of the word. Whereas, typical reading skills are developed by phonics, but required the ability to hear and say all 47 phenoms of the English language. With technology providing many options for proper amplification for our deaf or hard of hearing children, through cochlear implants and digital hearing aids, these outcomes will improve.

Karen Roudybush gave a wonderful presentation on "Bringing Literacy Home," which provided me with many activities and ideas on how to help establish a strong foundation for literacy. She shared with us that research demonstrates that the size of a child's vocabulary is a strong predictor of future reading skills, so it is important to develop a large vocabulary early on. Giving children rich language experiences throughout the day by telling and reading stories, describing the world around them and expanding on word choice (big, huge, giant, jumbo) are all ways to expand a child's vocabulary. She even gave us some activities that we can do to help expand our child's vocabulary:

Write on several pieces of paper different words describing "something", for example: small, tiny, little, minute. Then have your child rank the different words in terms of which one is smaller than the other. To me, minute describes something very, very small, where as tiny would mean something a little bit bigger than minute. This expands on a child's vocabulary and gives them additional ways to describe something that is small.
Grocery Shopping: She suggested that we always have a grocery list when shopping! (More work for me!) Hand the list to the child, complete with the word written out, and maybe a small sketch or drawing of the object. Then, have the child help you find the item in the store. This can be done even with very little children, and will help them learn to identify key grocery items, and expand their food vocabulary.
Purchase small Dry Erase boards and place throughout the house. Write little notes on them each day for your children. Something like, "I love you!" or "School Today" will help children learn how to read (left to right, top to bottom) and will help them realize when letters are upside down and how letters are put together to form words and sentences.

She also gave several book selections that will help enhance vocabulary and literacy. There are many different types of books, so it is important to know what you want to work on when reading. For example, if you want to work with your child on sequencing of the days of the week, a book like Cookie's Week is excellent. She gave several selection idea. I know our family has some book shopping to do:

For repetition: I Went Walking, Good Night Moon, Brown Bear, Brown Bear
For Cumulative Sequence: The Napping House
For Known Sequence: Cookie's Week, The Very Hungry Caterpillar, Grouchy Ladybug

Kathy also suggested reading books that revolve around daily routines, like bedtime, books about the changing seasons, classic stories, like The Three Bears or The Three Little Pigs, and series books, like Curious George. (Kohl's Cares for Kids is an excellent program, and is currently promoting the Curious George series. It is a great opportunity to purchase the books and toys at a great price, while giving back to the community.)

First Deaf NBA Basketball Player Lance Allred Cut

2008-10-09T10:06:00.005-04:00

I just heard on the radio that Lance Allred, the first deaf NBA basketball player was cut by the Cleveland Cavaliers. We wrote about him in March when Lance was first signed by the Cavs and then later detailing his battle with bigotry and discrimination.

Lance is currently writing a book detailing his life growing up in a polygamist sect in Utah, and how he dealt with his hearing loss. We wish him the best of luck in signing with another team, or with whatever he chooses to do next.

What Did You Say?

2008-10-08T14:30:00.000-04:00

The list of questions I never thought I would hear just got longer.

While standing on the elevator at Children's Hospital one day, a lady on the elevator looked at me and asked, "What is that crap on your son's head?"

I'll let you guess how I responded.

An Amazing Experience: Meeting MLB Pitcher Jim Abbott

2008-10-06T10:00:00.001-04:00

On a recent trip to California, Drew's Dad and I met Olympic Gold Medalist and former Major League Baseball pitcher Jim Abbott. We were fortunate enough to attend a meeting my company was holding where Jim was the keynote speaker. It was such an amazing experience to listen to him speak about his ability to become a successful baseball player, against all odds.

Born without a right hand, Jim Abbott defied all of the odds to become a major league baseball pitcher. Despite being born with a disability, he truly believes that more has given to him than was ever taken away by his birth defect. He talked to our group about the need to A.D.A.P.T. in order to overcome our circumstances and achieve our goals:

Adjustability: Thinking of a different way to do things, given your circumstances. For Jim, he had to make adjustments just to be able to tie his shoes. For Drew, we use a food saver to water proof his cochlear implants for swimming. No matter what the circumstance, little adjustments can make just about any situation work.
Determination: We are constantly told about the things we can not do. If we start to believe that we can not do something, it limits our abilities. We must filter out all of the negativity in order to reach our goals.
Accountability: Never let the circumstances of life be an excuse for not meeting your goals. You are accountable for your actions. Have you made the most of your talents today?
Perseverance: At times, your goals may not seem possible. But so much is possible if you just hang on to your goal and keep working!
Trust: The ability to know that you are prepared and can do anything! Bring trust into every situation! You can achieve just about anything if you trust in your abilities.

During the presentation, Jim demonstrated little adaptations he had to make in order to be able not only to pitch, but field his position. He showed us how he would get his glove back on after pitching the ball, in order to field his position. In fact, I was the one that got to play catch with him during this part of the presentation! Check playing catch with a New York Yankee pitcher-that-threw-a-no-hitter off of my "to-do" list!

This presentation was designed to speak to my inner "sales representative" soul, in a time of economic strife, but instead struck special cord as a mom of a child with special needs. There were points during his presentation where I could feel myself tearing up. What did Jim's parents do to raise such a strong, secure, determined son? How had Jim handled being made fun of for being and looking different? When did Jim learn of his disability, and what did his parents tell him about it? There were so many questions that ran through my mind. I wanted to learn as much as I could from him on how I can impower Drew to be self-confidant, determined, successful and proud of being different.

Fortunately, Drew's Dad and I were able to spend a considerable amount of time one-on-one with Jim, and were able to talk about our personal situation. We asked Jim if he could give us any advice on how to empower Drew. Jim told us of his Dad, and that one of his dad's key motto's to him was "Be a leader today!" Jim's Dad talked with him each day about the choices he had to make, and that if Jim was a leader, all of his friends and classmates would follow.

Jim also spoke of how being a part of a team, as baseball provided, was a great way to help him "fit in". He strongly encouraged having Drew participate and lead in team sports, which would lead to acceptance without questioning his differences.

If you believe in yourself, nothing can stop you, and then amazing things can happen. We left with an autographed baseball: "To Drew, Anything is Possible!" Jim Abbott

***Drew's Dad here...I just wanted to add this video in case one of you hadn't heard of Jim Abbott. Enjoy!***

Moving Forward

2008-10-04T19:13:00.003-04:00

I should not have left that last post up for so long. We have been extraordinarily busy, and while the list of blog ideas is rapidly growing in my mind, I just haven't had time to write. I shared with you this struggle we are going through for several reasons, but mostly because someone reading may encounter a similar situation in the future. We have created such a valuable support network through this blog, complete with your help in the comments, that we hope to help someone else in the future.

Drew's Dad and I decided to have a meeting with the manager of our speech therapist, to discuss the concerns we shared with you in my last post. We decided to do this quickly, as we didn't want to go much longer without sufficient resources. Drew was without therapy much of the summer, and the first month of the fall was not good. So instead of waiting, and leaving Drew in a poor situation, we decided to voice our concerns. Our talking points were:

We were left without services for two months, waiting on a replacement therapist, which we were told would have significant experience with hearing impaired children following an AVT approach. Our expectation is that we are provided with a therapist equal to the level of service we were receiving.

Drew's current level of listening and speech is irrelevant to the conversation.

The new therapist clearly did not review information on Drew prior to our first appointment. She had no knowledge of his current language skills, implant history or current goals. She did not develop any goals with me.

Therapy is needed to provide me with techniques that will facilitate higher order thinking and advance language. I need her to coach me on listening and language techniques and provide “homework material” that will enforce key concepts. Drew is awake an average of 84 hours a week, but only spends one hour in therapy.

I need to see a clear lesson plan for Drew, with age and language appropriate activities that will push Drew to the next level in his listening and learning. I expect a session to have an observation period where we discuss things that are going well and things that we need to work on. This should be followed by a period of action, where specific techniques and activities are introduced to help Drew reach the next level in his listening and spoken language development. Finally, the session should include a period of reflection where we decide if this activity elicited the response we were looking for, and then a summary of what we did today with discussion on how we can incorporate into daily play.

Provide homework and written notes from the session within 24 hours.

Your comments and suggestions were very helpful to me in establishing this outline for our meeting, so I thank you. I think many of you would be surprised by the way our therapy sessions have been structured, and I use that term loosely. There has been no discussion, no plan for the session, no notes, no homework and the list goes on. Our concerns, however, are going to be addressed in a timely manner, which we hope will bring back the left of service to which we are accustom. Many changes should be in place by our session this week.

The most immediate change will be to follow the typical session agenda, as presented above. The manager we spoke with thought this was the way the sessions were being run, and seemed quite surprised that the sessions actually had no structure or focus. In addition, we will be provided session notes within 24 hours of the session. I am very pleased with all of this.

In addition, we discussed the need for a more experience based therapy. Drew really enjoys activities, and it seems fitting to provide him with activities that would enrich his language while doing something fun. For example, one we did in the past, when he was a bit young to really take a lot from it, was to glue different objects with different textures to a piece of paper. We used words like soft, hard, fuzzy, prickly, tough, slick, just by using simple items off of the shelf of a Jo Ann Fabric store. It was an excellent activity, where Drew didn't even know he was learning! The goal is to establish a theme each month that will incorporate these types of activities. For example, October will be "All About Fall," with a pumpkin carving, leaf project and spooky story. We are really looking forward to seeing this implemented, as Drew is at the perfect age to enjoy these activities!

Overall, we feel very positive that the level of service will be improved. I would encourage anyone going through a similar situation to discuss their concerns. Our experience is that they generally want to provide the best service possible for our children, and with constructive feedback, they can make them better for all of our children.

Bump in the Road

2008-09-25T20:30:00.003-04:00

I always hesitate to write when what I have to say is not positive. Not because I want to provide an image that everything is always sunny in our world, but because one of the downfalls of having a public blog is not knowing who is reading. So, in large part, Drew's Dad and I have chosen to keep our more problematic situations and debates between us, instead of sharing it with the cyber world.

Having said that, we have been going through a rather rough patch with Drew's cochlear implant services. We have been so fortunate to be surrounded by such wonderful doctors, audiologists and therapists throughout the past two years. But recent transitions have not been going well, and Drew's Dad and I are now facing some difficult decisions.

We learned back in May that Drew's primary therapist was moving. Her husband accepted a job offer on the east coast. We were devastated to learn of her departure. (In fact, I don't even know if I wished her luck when she told me the news I was so upset!) Drew responded so well with her. She had this nature about her that echoed a quite confidence. She knew when to talk a lot to Drew and when to let him quietly investigate the task. She provided invaluable guidance for our family. She worked so well with Drew's audiologist, providing detailed information on how Drew was responding in therapy, and potential areas for adjustment to his MAPs. Her personality just clicked with our family, and we felt like we were not only loosing Drew's therapist, but a wonderful advocate and friend.

The search thus began for a new therapist. Our old one departed in July, and we actually missed our last appointment with her, due to Drew's bout with Roseola. There was no replacement immediately in place, so we took nearly a two month hiatus from therapy. While I was not thrilled with this, Drew enjoyed the summer months, and it made coordinating all of his therapy with the fact that his sister did not have school much easier.

Now we find ourselves working with the new therapist. While she is an extraordinarily nice woman, she is not providing the level of service we are accustom to. So, I am left questioning our situation. What should a therapy session look like? How much interaction should take place between the therapist and child? The therapist and parent? What "homework" should be given? Do you learn something new at each therapy session? The list goes on.

Part of me knows that we were very blessed to have someone as talented as our previous therapist, so I know that I can not hold anyone to her standard. But I have concerns after our appointments this month about the way the sessions are being conducted, and I certainly have not learned anything new. Maybe it will get better, but I feel so helpless right now. While Drew is doing so well, we have worked so hard to get him to this point, I don't want to lose momentum now. The difference in language between a two year old and three year old is outrageous, so this transition is not happening at a good time. In addition, Drew's Dad and I both work full time, so taking him elsewhere for services would be challenging. We will do anything we have to for Drew, but I feel like we shouldn't have to do that.

My question to you is, what are your therapy sessions like? Do you see "lesson plans"? Do you leave with a focus or homework to do for the next week? What can we do to help make this transition better? How long should I give this transition period before I change therapists? Any comments you have would be greatly appreciated.

My Little Superhero is Two!

2008-09-24T19:46:00.005-04:00

Happy 2nd Birthday, Drew!

It is appropriate that Drew had preschool today, as they sent home the first "What I Did Today" letter. So, at exactly two years of age, Drew's read:

"Today I"...

Tried and tried to close the lid on the 'bear in the box' toy. After three attempts I asked for help.

Said "more please" and "thank you" during snack time.

Called all of my classmates by name.

Jumped and danced during music time with Ms. Karen, and appropriately made all of the hand motions to 'Itsy Bitsy Spider'.

Two years ago I knew nothing of hearing loss. In fact, I think that September 24, 2006 was the last day that the words "hearing loss" didn't enter my thoughts throughout the day. Two years ago I could never have imagined what bright, funny, athletic and amazing little boy Drew would become. He truly is the best!

Oh, and on his second birthday he finally learned the word "yes!" It is so wonderful to hear him answer a question with a word other than "no."

Happy Birthday Drew, Drewsie, Buddy, Drewser, Drewmolisher! We love you!

Back in Business

2008-09-21T20:52:00.003-04:00

We have power! It was restored late on Thursday evening. I have never been so happy to do laundry and grocery shopping in my life! (Although our fridge and freezer is still sparse; it will take a while to replenish all we lost.)

There are still tens of thousands of people in Ohio, many of our friends, still waiting on power to be restored. And then there are those in Texas where Ike came ashore that could be without power for weeks. We send our thoughts their way; five days without power was very difficult. I can't imagine longer.

Picture of the boat ropes used during the storm to tie the electrical pole to the tree. It broke at ground level from the 70+ mph winds:

Picture of the debris pile in our yard. It runs the length of our property, and before it settled was waist high:

Powerless

2008-09-18T09:06:00.003-04:00

Literally. We woke for the fourth day in row to a home without electrical power. Sure, there were signs of hope on day three, like the seven power trucks in our driveway early last night, but in the end, we are powerless.

The electrical company was hard at work yesterday, trying to restore power to us and hundreds around us. They were successful in fixing the downed power lines just up the street from us and next to our house. They had everything ready to be restored as we departed for Drew's Sister's dance class. We were happy, energized and for the first time in days, hopeful.

We returned home to no power. We couldn't understand what the problem was until we were told that a neighbor, and I use that term loosely, had failed to report the chopped-in-half electrical pole in his yard. Moron. The electrical company could not restore our power, as it is supplied through that pole area, and would knock off the transformers again. So, they have to bring in a new electrical pole, which could take days. We've even been told power won't be restored until next week!

Laurie left an interesting comment on my last post, Ike Came and Went, wondering what people with hearing loss do in these circumstances. In our situation we are very fortunate. Drew is too young to need to listen to weather reports or communicate on the phone; we are doing all of that for him. He doesn't rely on closed captioned television of use a relay system with the telephone. Many of the assistive devices for the deaf and hard of hearing are either not age appropriate or not needed.

We have, however, had issues with battery power for his implants. We used our two sets of rechargeable batteries on Sunday and Monday, but by Tuesday morning they were all dead with no way to recharge them. So, we are now using disposable batteries. We are very fortunate to have a full box of batteries, enough to last about ten days. From now on I will always have on hand a full weeks supply of disposable batteries, just in case this situation happens again. Batteries are in high demand right now, and very hard to find. While I'm sure it is not impossible to find them right now, there were points when stores were without power to sell them and there were points where the shelves were bare. I could not handle the stress of trying to find power for Drew to hear, so we will always maintain a supply large enough to last one week.

Hopefully we won't need these in the future, but who knows?

Ike Came and Went...

2008-09-17T10:53:00.004-04:00

Hurricane Ike came roaring through Ohio on Sunday, unlike anything we have ever seen. With winds still in excess of 70 mph, he knocked down trees and power lines, leaving hundreds of thousands without power.

We have been without power since Sunday evening, with little hope of it returning anytime soon. Right now the estimates are anywhere between today and Sunday. Drew's Dad and I have found a Panera Bread with power, so we have been able to connect to the outside world for the first time in days.

We had several tree limbs fall and lost a couple of roof shingles and some trim around the windows. Our large oak tree is currently holding up the electrical pole that runs along our property. We emptied the refrigerator of all of its spoiled contents. While we have had some damage and a lot of clean up, we are much more lucky than others right around us. We are ready for life to return to normal.

I really don't know how those that live in Hurricane areas do this year after year. We have gone from station to station looking for gas, have had issues finding milk and water. No one has any ice. Anywhere. Some restaurants will have food but no drinks. Others, the opposite. My kids haven't had milk in nearly a week. We were really unprepared for this to happen, so maybe that is part of the problem, but it has been emotionally and physically draining. I feel for those that do this multiple times a year, year after year.

First Day of School

2008-09-10T15:10:00.005-04:00

Drew started preschool today! Drew's Dad and I decided to enroll Drew in a mainstream preschool program one day a week at a local church. It is the same program that Drew's Sister has been attending for the previous two years. Drew has two teachers and there are five other children in the classroom.

Our main reason for starting Drew in preschool this year, instead of waiting until next year when he will transition to an IEP and attend a preschool for children who are deaf or hard of hearing, is to socialize him with other children his own age and hopefully reduce his separation anxiety. Drew is very attached to his Mommy and Grandma, and we fear another year of no outside program could make for a difficult transition!

Drew's teachers reported a fun-filled first day, and they actually think that Drew is one of their more verbal students! Go figure!

This is the first time Drew's preschool has had a hearing impaired child in their classroom. They have been wonderful about learning about hearing loss, Drew's cochlear implants and setting up their classroom as a listening environment. Here are some things we have found helpful when working with a mainstream preschool:

In-service Day: Schedule a meeting with the Preschool Director and Teachers to review information on hearing loss and hearing aids/cochlear implants. We had our teacher through Early Intervention meet with Drew's teachers to discuss his hearing loss, how his cochlear implants work and things that can be done in the classroom to facilitate an excellent listening environment. We also discussed ways they can help with Drew's learning, like providing lesson plans for the month ahead and sending home all musical lessons so we can practice at home.
Classroom Setting: When looking at mainstream preschools, look for classrooms with carpeting and ceiling tiles (to reduce noise). Locate the heating/cooling systems and make sure they don't provide too much background noise.
The Other Students: Drew's teachers had all of the students sit in circle time this morning, and they talked about Drew's CI's and how they help him hear. They took one of them off and let the other children touch it, hoping to cut down on their curiosity. They also set the rule that no one is to touch Drew's ears.
Which Ear is Which?: In the picture above you may notice that Drew is wearing a red microphone cover on his processor. Because Drew has such a variance in map intensity, we wanted the teachers to be able to clearly tell the right ear versus his left. So, going with "red is right", we put a red mic cover on his right processor.

We're really excited to see what this year will bring for Drew. I certainly think it will help us understand exactly how well Drew can hear, primarily in a classroom environment. Drew's Early Intervention teacher is curious, as well, and we are planning on observing to see how Drew performs in this setting.

Knowing him, he'll do great!

Drew's Therapy Notes

2008-09-05T16:53:00.004-04:00

Our teacher through the Regional Infant Hearing Program is absolutely wonderful! Not only does Drew love her, but she is excellent at communicating and educating parents on not only language but cognitive development.

Below you will see Drew's therapy summary from this week. You can see the things we are working on and see how he is progressing. Also, the book we are reading this week, "Dear Zoo," by Rod Campbell, I would highly recommend!

Auditory Objectives/Materials Used:
1. Detect Ling sounds with conditioned response/Pegboard and Hoop
2. Discriminate environmental sounds/Everyday Lotto Sounds and Chips

Child’s Responses:
1. Drew detected and repeated all 6 Lings at 12 feet. He also repeated consonant-vowel and consonant-vowel-consonant patterns with /b/, /p/, /m/.
2. He did great with this even when I added a fourth sound. He discriminated 3/3 w/lion, bell, door, 4/4 w/cry, fire truck, dog, Happy Birthday, and 4/4 w/phone, drum, water, cat.

Language/Speech Objectives/Materials Used:
1. Update LDS
2. Birthday vocabulary/Playdoh and Birthday Bag
3. Follow directions with 2 critical elements/Little People

Child’s Responses:
1. Mom completed and returned it to me on Thursday. Drew had receptive and expressive skills in the 22-24 month old range!
2. He really enjoyed this activity and followed all my directions as we talked about each item in the book and bag. He also used a lot of speech in imitation and spontaneously.
3. Drew did an excellent job with this! He put the baby in the bed and Daddy in the tub with a choice of 3 people and 3 objects.

Cognitive Objectives/Materials Used:
1. Attend to a book: matching, prepositions (in, on top)/Dear Zoo Bag

Child’s Responses:
1. Drew participated with this but was starting to tire by this time. He understood the difference between in and on top but did not want to put the animals on top of the boxes. It was adorable when he told me “no” every time I asked him to put the animals on top instead of in the box. By the end he was doing it spontaneously and saying “on top”.

Recommendations/Notes:
Give him multiple-step directions at home. Make them relevant to something he wants or likes to do. It will help develop his auditory memory as well as following directions.
Continue to use prepositions (in, on or on top, under, over) and prepositional phrases when playing or interacting. Add some harder prepositions such as behind, next to, in front, etc.

Music For New Ears - Creating Music For Cochlear Implant Users

2008-09-02T23:30:00.004-04:00

Mike from Music For New Ears contacted me through Drew's Facebook page today to tell us about their amazing non-profit collaboration which aims to create music especially designed for cochlear implant users.

We all know how big of a deal music appreciation is to many CI users. Imagine a group of speech and language professionals collaborating with musicians to design music created just for those with CI's!

Please take a moment of your time to visit the Music For New Ears page on Ideablob.com and click on the green VOTE button on the right. If they get the most votes, they'll win a $10,000 grant to help develop this music.

Not decided whether you want to spend 2 minutes on this? Here is the description of their idea - in their own words.

Cochlear implants are surgically implanted electronic devices that provide a sense of sound to people with profound deafness. However, many aspects of sound, including pitch and timbre, are almost entirely lost in the process, making it difficult for cochlear implant users to enjoy music.

Music For New Ears is a non-profit collaboration between composers, hearing scientists, and cochlear implant users. We identify sounds that C.I. users can hear with the most clarity and use these sounds to compose new music.

Our mission is to help cochlear implant users better enjoy music by creating music specifically for them and the unique way in which they hear.
What will you do if you win $10,000 for this idea?

1) Pay our primary composer to create full-length music compositions for cochlear implant users.

2) Recruit C.I. users to provide us with valuable input during the composition process.

3) Arrange live performances for audiences of C.I. users in Boston, MA and surrounding areas.

4) Organize a national contest for composers unaffiliated with our organization to create their own pieces of music for C.I. users, with a grand prize of $1,000.

We have everything in place and we are eager to begin working. We simply need the funds to get started.

Sound good? Now go vote - I can't wait for them to get started!

Have a question for Mike? Email him directly at michaelpeterevans@gmail.com, or post your question as a comment so we can all see the response (Mike, let us know if this is ok).

Cochlear Implant Mapping For Children

2008-09-02T07:35:00.000-04:00

Nationwide Children's Hospital is holding a Hearing Team Support Series which discusses important topics for families of children with hearing loss. I attended the Individualized Education Plan session in July and this past week I attended the session on Cochlear Implant Mapping. The presentation was excellent, and I learned a lot of technical information regarding implant mapping, specifically for young children, that I did not know. Cochlear Implant Mapping is very technical, and even a year later, I still have a difficult time understanding it all. As parents, we play a crucial role in the mapping process, so it is important that we understand as much as possible about this technology.

The information I will provide was taught at the presentation and is correct, to the best of my understanding, and is specific to the Cochlear Brand of implants. There are slight differences between the three manufacturers, so the terminology used may vary slightly from one manufacturer to the next. If you feel that any information provided is inaccurate, please leave a comment so I can research further.

There are three parameters of sound that the audiologist is programming during the mapping session that allows the implant to translate external sound into the electrical signal that stimulates the auditory nerve, allowing for perception of sound. These three parameters include pitch, loudness and tempo.

With normal, acoustic hearing pitch is heard from 20 - 20,000 hertz (Hz). Cochlear Implant maps provide pitch across 120 - 7200 Hz, which are the primary speech frequencies. The hertz distribution is coded among the available electrodes providing electrical stimulus for the cochlear implant recipients. Individuals with cochlear implants do not hear the entire distribution of sound like a person with normal hearing. For example, the Middle C of a piano is at a pitch of 250 Hz. As you move down the piano, the hertz get lower and lower, so an individual with electrical hearing can not tell the difference in the pitch of the sound outside of the parameters of their map. Programming the pitch across the electrodes is critical for hearing all of the nuances of speech. Consider the "eeee" sound, for example. "Eeee" is not just one sound, but a collection of sound across different frequencies. In order to develop speech equivalent to hearing peers, pitch programming is essential.

The loudness, or intensity of the sound affects the voltage required to run the map. With acoustical hearing there is a loudness range of about 120 decibels (db). With electrical hearing, there is a range of roughly 40 db's. This is called the dynamic range and it is the difference between the threshold level, T-level and Comfort level, C-level. The T-level is lowest level of stimulation needed to hear. The C-level is the maximum stimulation of sound that can be comfortably tolerated. The difference in the dynamic range is no more than 40 db's for a person with a cochlear implant. For our children, patient participation is not practical, so the audiologist must find a different way to establish the T and C levels. Neural Response Telemetry is software provided by Cochlear that provides the audiologist with with the levels need for an individual to hear. There can be some minimal variability in what the computer suggests as T and C levels for the patient, so the audiologist with also use their past experience, updated information from parents, teachers and therapists and hearing tests (in the sound booth, with conditioned response when age appropriate) in order to program the processor.

I found this area of the presentation to be the most interesting. When looking at the dynamic range, this means that the map actually takes really soft sounds and increases them to the T-level, and it takes very loud sounds and decreases them to the C-level. This finally explains why Drew is so loud sometimes! He has no idea how loud his screams actually sound to me, with my natural acoustic hearing. We can roughly estimate, knowing that the goal for cochlear implant recipients is to hear at 20 db, that Drew is hearing his loud screams at what we would know 60 db's to sound like. With a dynamic range of only 40 db's (versus my range of 120 db's), Drew has no idea how loud he sounds! (I don't know why I didn't understand this prior to this course, but finally his behavior is making sense to me! As a side note, if any parents with older cochlear implant children have any suggestions on how to help Drew understand that he is actually louder than what he hears, please leave a comment.)

The final area of the programming revolves around tempo. This is referring to how fast the speech is coded. With the newest cochlear implant technology, speech can be coded between 250 - 1800 Hz. In layman's (my kind of) terms, this means how many times per second sound is coded through the electrodes in order to stimulate the auditory nerve fibers. This provides the recipient with detailed information on the timing of sound. The default is 900 Hz, which means that the processor codes sound 900 times per second. This can be tweaked for each individual, but apparently faster is not better, because if the sound is coded too fast, the recipient can have a difficult time interpreting sound. For children have little participation in the mapping process, most audiologists use the default settings.

During the time of activation, and shortly thereafter, mapping sessions are quite frequent. As a map is established, there are several ways that a parent can identify the need for a mapping session:

Decrease in child's auditory reaction or alertness to sound
Decrease in vocalizations and/or vocal play
"Slushy" production of previously mastered speech sounds
Any sign of physical discomfort, such as eye or facial twitches
After one month of use, the child should tolerate their everyday program all day. If they require a quieter map to start the day, consult with the audiologist.
Difficulty operating external equipment
Irritation to the skin under the transmitting coil/magnet
Refusal to wear sound processor all day
Child complains of difficulty of hearing

I have found the following on-line resources to be helpful when trying to learn more, and understand, cochlear implant mapping for children:

Audiology On-line

American Speech-Language-Hearing Association

Speech Pathology

Hearing Pocket

Drew Can Say "Go Buckeyes"!

2008-08-30T09:06:00.002-04:00

Last year we showed you how Drew Loves the Ohio State Buckeyes.

This year he can show off his "fanhood" even more by saying "Go Bucks!", and perhaps most importantly can express his thoughts toward "that team up north". Watch Drew in action.

Save the Date

2008-08-28T21:27:00.004-04:00

The Ohio Chapter of The Alexander Graham Bell Association Presents:

Keynote Speaker:

Carol Flexer Ph.D.

http://www.carolflexer.com/

The 2008

Ohio Chapter

Annual Conference

Open to Members & Nonmembers

Saturday, November 1, 2008
10 am – 4 pm

Nationwide Hospital
Columbus, OH

Hampton Inn: Downtown Columbus
Room Block for Conference Attendees for Oct. 31, 2008
Single Occupancy $103.00 or Double Occupancy $113.00
www.hamptoninn.com/hi/columbus-downtown
(614) 559-2000 or 1-800-HAMPTON
Group Code: AG1

*Visit http://www.agbell.org/oh for more info*

"I Want To See God"

2008-08-27T08:30:00.002-04:00

On Sunday evening, our family sat together eating dinner at a restaurant. It hadn't rained for 15 days, so when the sky began to turn gray we were hoping for some relief for our stressed lawn.

Drew was in his high chair exclaiming "chip!" for his tortilla chips he grasped above his head, and his three-year-old sister sat to my left next to the large picture window, overlooking the restaurant's landscaping and the dark skies above.
Our daughter took notice of these clouds, and was asking things such as "where does rain come from?" (the clouds), "can a plane fly in the clouds?" (yes, and actually can fly above them), and "can a plane fly to God"? (no).

She paused for a moment as she ate her quesadilla, contemplating these answers, and a line suddenly appeared on her brow. She had an important question.

"I want to see God", she stated. "Can I see God, daddy?", she asked, her root beer colored eyes looking up at me.

I thought for a second, caught off-guard, and replied, "No, honey, daddy and mommy have to see God first."

Her eyes rumpled with confused strain, and she took another long pause to consider this proposal. She took a breath and pleaded in almost a whisper "No! But who will watch us? I want to go with you."

A dense storm engulfed us. Not just the rain that now rushed off the edge of the walks and overflowed the gutters outside, but in our hearts. Out tears fell like the raindrops opposite the window.

The look on her face, and the tone of her voice were crushing to us. The thought of not having her (and Drew) with us is unbearable, but so is the thought of her feeling left behind.

Such is life, I suppose. We must enjoy these stormy moments (and all moments), uncomfortable as they may be, and live life in a way which will leave us with wonderful memories to carry us through any loss we face, and prepare our kids and other loved ones to move along under their own power without us.

What's the point of living if we don't have anything to lose?

Hearing Aid Tax Credit

2008-08-25T07:00:00.000-04:00

When Drew was first diagnosed with hearing loss, we were disappointed to learn that many, if not all, health insurance providers do not provide coverage for hearing aids. We knew that Drew would in all likely hood not benefit from hearing aids enough to develop normal speech and language, but hearing aids were a critical step to stimulate his auditory nerve with his residual hearing.

Our family was fortunate in two regards: 1. Our state's Early Intervention Program provided Drew with loaner hearing aids at no charge; and 2. Drew would only need hearing aids until his cochlear implant surgery, alleviating the need to purchase.

For many families, hearing aids provide their children with appropriate amplification for life. But these families are faced with the financial burden of paying for the hearing aids themselves, some as much as $5000 per ear. And hearing aids don't last a lifetime. As technology changes, hearing aids are replaced. I recently learned of the Hearing Aid Tax Credit. Please take a moment to write your congressmen/women about this important legislation. I certainly don't think that this legislation is enough, but it is a start. We can all make a difference.

Incidental Learning

2008-08-21T19:00:00.005-04:00

Drew's language is really exploding, as he is adding new words and new two and three word phrases each day. After returning from the beach, even my Mom, who normally sees him on a daily basis, commented on how much more he is talking! Very exciting!

Drew's Dad and I are amazed at how much Drew is learning that we aren't teaching him. One of Drew's favorite phrases right now is, "[Sister's name] take it." Anytime his sister has something he wants, or that she has stolen from him, he whines and says that phrase! The only way we can figure that he learned it is from us asking his sister, "Did you take it from Drew?" It is amazing! We certainly didn't teach him to tell us when she takes things from him. In fact, it can be quite annoying, as we hear it about a thousand times a day!

Also, Drew is learning which restaurant chain has certain types of food. When we are driving and pass a Pizza Hut his will say, "Pizza." When he sees McDonald's he says, "Chicken." Bob Evans? Pancakes. We certainly have not taught him this, he is just learning the food chain logos and associating it with the food he eats at each restaurant. (Maybe we eat out too much?)

This incidental learning is so important, and one area of language development that hearing impaired children typically struggle with. The struggles generally stem from not being able to hear well in noisy situations, or not being able to understand the language without the speaker looking at them (to help with lip reading). It is amazing just how well Drew is able to hear with his implants. And part of the reason that his everyday speech is coming along so well and is in context with different situations is because he is doing well with his incidental learning.

It is so much fun to watch this language development. It is just...so...normal.

Road Trip!

2008-08-20T12:00:00.000-04:00

When we decided to take the kids to the beach this summer, Drew's Dad and I were worried about the long drive. What would we do to keep two kids entertained for 10+ hours of windshield time? We were worried that they would get cranky and make an already rough ride worse with crazy behavior.

I'm excited to report that they could not have been better (on the drive, at the beach is a different story)! I packed plenty of snacks and activities, and we coordinated the drive well with nap time and bed time, so the kids slept a good amount of the time. We split the trip up on the way down, and Drew and his sister enjoyed their first stay in a hotel room!

Drew and His Sister enjoying a morning cartoon.

Drew's Dad and I find that the car is an excellent language environment. There are so many things to look at and talk about while driving in a car, especially when you're driving through new areas of this beautiful country.

As we drove south through Virginia, we went through several tunnels in the Blue Ridge Mountains. Drew loved the tunnels! He would say, "Wow!" the whole time we were driving through one, and as we left the tunnel he would say, "More, tunnel...More TUNNEL!!" He loved them! And now we can add the word tunnel to his vocabulary list.

We also passed a lot of pastures while driving through Virginia. Anytime Drew saw an animal he would make his animal noises. We'd be driving and hear a "moo" or "neigh" from the back seat. Drew would even sing his little song, "Where oh where...cow?" All four of us had fun singing and looking for different things: trucks, cars, cows, horses, sheep, just to name a few. It's amazing how quickly the miles pass as you are playing fun games!

As we got into North Carolina and the sun was setting, the kids were becoming bored of games, songs and movies. We turned the movies off and told Drew and his sister that it was time for bed. They were both just sitting in their seats, settling down for the night when we heard Drew say, "Go Bucks!" It was hilarious! Clearly he was sitting in his car seat, bored, thinking, "Hmmm, I'm bored. I should say something. What should I say?" So, he busted out a "Go Bucks!" and we were all back to laughing, talking and playing games.

While Drew was watching one of his movies, we heard him sing "Twinkle, Twinkle Little Star." It was so sweet to listen to his little voice sing. He was able to say several of the words clearly and was even singing somewhat in tune. It was a wonderful moment as we realize just how special it is that he can even hear music, let alone sing along with it. I don't think Drew's Dad and I have ever smiled more on such a long car ride. It was an excellent reminder of just how far Drew's language has come in this past year. We are forever grateful for this wonderful technology!

What Does A Cochlear Implant Look Like? - Captioned Version

2008-08-20T10:58:00.004-04:00

Last week I posted a video titled "What Does a Cochlear Implant Look Like?", which I thought would be helpful for everyone who hadn't seen one up close before.

In my rush to get it posted (it had been sitting on the camera for months), I neglected to add captions using Overstream. Elizabeth at DeafVillage.com told me she thought the video was really valuable, so I made sure to add the captions to make sure everyone could see what I am describing in the video.

Here is the link to the captioned version of What Does A Cochlear Implant Look Like?

Swimming with Cochlear Implants

2008-08-18T12:00:00.003-04:00

Drew's Dad wrote a post in February after he found a wonderful You Tube! video showing a way to swim with a cochlear implant on. I have to tell you how excited we were to have found this, as I can not imagine Drew not being able to hear at the beach or the pool. He relies solely on oral communication, so it would be very difficult to communicate with him if he was not wearing his cochlear implants. And as Drew is all boy, we need him to hear us tell him no, stop, don't throw that, etc!

On our recent beach vacation we found a couple of modifications to the video helpful:

Sealing: We modified the food saver technique by making two seals on the bag. We would seal the food saver bag once, then move the bag about 1/2" and seal again. This made us 100% confidant that the seals were clean and that the processor would not get any water on it.

Increase Magnet Strength: We increased the strength of the coil magnet to help hold the bag to Drew's head a lot better. Typically Drew wears a strength "1" magnet. While using the food saver method, we used a strength "2", which held the coil in place much better, making it not only easy to get the swim cap on, but also keep the magnet in the proper place as Drew ran, rolled, swam and did all sorts of other crazy thing. (Note: We used a strength "1" on Day 1 at the beach and were very frustrated with the ability to keep his ears on.)

One: For a bilateral child, only use one implant while swimming. We tried using two and it made getting the swim cap on virtually impossible. There is just too much equipment under the swim cap. It seemed like every time we would get one on with the swim cap, the other side was falling off. So, on Day 2 at the beach, we used just one processor, and had excellent results. (Also note, should you have an accident with a processor getting wet, your child will still have an ear to hear from).

Which Ear?: For a bilateral child with varying map intensity, use the ear that has the "weaker" map. Drew's left ear requires much less "power" than his right, so we used the left ear while at the beach, just in case the coil became attached to the wrong ear. When Drew's right processor is accidentally put on his left ear it causes him great pain, so we avoided any accidental issues by "waterproofing" the left ear.

Swim Cap Issues: We had a problem with Drew not liking the fact that the swim cap is tight on his head. We avoided having Drew pull his ear off multiple times by allowing him to wear his regular ears to the beach. We changed Drew to the "waterproofed" ear (note the singularity) before letting him out of the stroller. At this time he had so much to do that he wouldn't try to pull the swim cap off. Then we placed his regular ears in the zip lock bag and placed them in our beach bag until we were ready to leave the beach or pool.

I can honestly say that the food saver bag does waterproof the processor, as Drew pulled his swim cap and ear off while sitting in the ocean! The bag was floating in the water, without a drop of water on the processor. For our next trip to the beach I will be bringing a critter clip with us, so we can attach the food saver bag to Drew's swim trunks so that his ear doesn't float away in the ocean!

Overall, the waterproofing technique worked very well, and we were really happy with how well Drew could hear us, even with only one ear, the background noise of the ocean and a bag covering the microphones. He was clearly able to hear us well, even at a distance. At one point Drew was playing in a water puddle about 50 yards from where I was sitting (with his Dad supervising) and he heard me tell him to "jump" in the puddle.

Both Drew's Dad and I commented that we wish we would have brought one of Drew's Hanna Andersson pilot caps to try as the way to keep the coil on Drew's head. We felt very confidant with the waterproofing of the processor, and we both think that Drew would have been more comfortable with the pilot cap, as opposed to the swim cap, as he is used to wearing those at home.

As I read cochlear implant message boards, it seems as though waterproofing hearing technology is a "hot topic". Is there anything you would like to add that has worked well for your family? If so, please leave a comment.

Beach Bums

2008-08-16T13:08:00.004-04:00

We've just returned from a week at the beach. We enjoyed seeing and hearing the ocean waves, and Drew and his sister enjoyed playing in the sand. Drew's Dad and I are very tired and hoping that the kids' meltdowns subside now that we are home and back to our regular schedule.

Drew learned a lot of new words while we were on vacation and is talking consistently in two and three word sentences. Some of our favorites are "ice cream cone" (which he asks for several times a day), "beach, dig" and "Thank You Mommy."

We will post more with some of the highlights of the trip and little things we learned that might make taking a CI child to the beach just a bit easier.

What Does A Cochlear Implant Look Like?

2008-08-07T07:46:00.006-04:00

I recorded this video several months ago because as I was remembering our confusion and lack of information when we first heard the words "cochlear implant". What exactly was it? What in the world did this implant look like?

At first I was hoping that Drew wouldn't have to wear hearing aids simply because I feared people or children in school would make fun of him. When we discovered his lack of hearing was more serious than that, I was left wondering what the implants looked like.

I searched for cochlear implant pictures, and I found a picture of an implant that looked like it must have been used in medieval Europe. This thing was a GINORMOUS satellite dish on the side of the kids head, with what looked like cat-5 cable tv cords coming out of it, running to a box the size of a laptop tied to the kids back with barbed wire.

Ok, I exaggerate a bit - but that's what it felt like at that time. So, because I want to make sure curious parents or other members of the public can see what the implant looks like and what pieces it's made of, I give you:

What Does A Cochlear Implant Look Like?

Note: This video is showing Cochlear's Freedom processors with babyworn and snug-fit technologies. Bodyworn or BTE (behind-the-ear) setups can be used, but are just not depicted in this video. What this means is that this setup is for little kids. For bigger kids or adults, you wouldn't have that long cable, it would all sit right on your ear (imagine you "erased" the long cable and only have what's shown above it left).

Please let us know if this video is helpful.

***I've added a captioned version of this video through Overstream. Here it is!

CI Picnic

2008-08-03T14:40:00.004-04:00

We attended our second Cochlear Implant Picnic this weekend. It is an annual event hosted by Nationwide Children's Hospital, and is an opportunity for families with children with cochlear implants to meet and talk about their experiences. We had an enjoyable day, although we wish the weather wasn't so hot.

Drew and his surgeon, Dr. Richard Kang

It was such a hot day that we left shortly after eating lunch. Drew was very hot and cranky, so we didn't have a lot of opportunity to talk with others, like last year. We're hopeful that next years picnic falls on an August day where a cold front is moving through the area!