Bump in the Road

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!

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

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

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...

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

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

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

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

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