Life is Bliss - Lily's Cochlear Implant Journey

7th Grade Cello Update

Lily is still playing the cello in the middle school orchestra. In fact, this winter she won an award from her orchestra teacher and local friends of chamber music group that was described as: 1) A student that exemplifies teamwork, camaraderie and positive communication with their peers and 2) A student who perform individually very well, but that takes second place to the traits of an effective member of a musical ensemble: teamwork, camaraderie and positive communication. Who would have ever guessed?

Although school ended at Spring Break and the final concert was never held, Lily put on a few online concerts for her family. In this video, she plays a piece she was supposed to perform, along with the rest of the 7th and 8th grade orchestra. Hard to understand all of the music since the cellos rarely have the melody, but you can see the progression of her skill, rhythm, and listening abilities. 

 

Lily Plays the Cello - Year 2

This is Lily's second year of cello.  As a 5th grader she is currently preparing for her upcoming winter concert. It's pretty amazing to see her listening to the notes, rhythms and melodies so carefully.  She is now working on tuning her cello and knowing if the notes are sharp or flat.  We never dreamed that this would be possible. 

Here's a very interesting recent literature review on music and cochlear implants called What does music sound like with a Cochlear Implant.  Very technical, but worth the read.  

However, Lily would disagree with much of the research.   She believes it's hard to understand how kids implanted pre-lingually with cochlear implants hear music. 

 

Phonak Pen Review - Experiences of a 4th grader

Lily has been testing out the Phonak Pen for a month now.  We're impressed! 

The primary objective in purchasing the pen was to try the omni-directional mic in the lunchroom for a better listening experience.  Lily has always struggled in this noisy environment and nothing except sitting in a different room helps.  The omni-directional mic, which is incorporated in the pen, seems to be a great improvement over the traditional directional mic of a Phonak Inspiro in this situation, and allows Lily to hear multiple kids at the same time in different directions.

The challenge in the lunchroom comes when the students get too loud and instead of being able to figure out what voice to amplify, the pen amplifies everything including dishes clanking and voices from other tables that are not involved in the primary conversation. At this point, the pen needs to become a traditional directional mic to be useful.  However, the pen's small and light profile makes it less intrusive to hang around someone's neck and truly feels and looks like a pen.  

Lily is also using the pen on the playground.  The pen's capacity to "beam" when pointed at someone, gives Lily increased hearing advantages.  On the playground, she either wears the pen on her neck, keeps it in her hand to beam or hangs it on another kid if they are running around. The disadvantage here is that the range for the pen is much shorter than the Phonak Inspiro, but Lily is use to staying fairly close to her peers to hear the conversation.   

We have not been able to try the new Phonak Inspiro Touchscreen which incorporates the microphone into the transmitter (eliminating the long cord and small microphone that gets tangled on everything) and also has an omni-directional microphone when set flat. This is a great improvement for the Inspiro. Unfortunately, the pen doesn't network with the Phonak Inspiro, which is a major disappointment for these different use cases, but it does network with other pens.  The pen also doesn't network with the classroom media hub. Lily must connect with each device as she changes between them and while this isn't hard, it does require a little time and knowhow.    

As for durability, the Inspiro feels slightly heavier, like it could withstand more abuse, but so far we haven't had any problems with the durability of the pen.  The pen does come with a lanyard which cleverly attaches to the pen's clip.  

Another time that Lily uses the pen is in her reading group.  Again Lily uses the omni-directional feature to hear the kids around a table and if needed, she or the teacher will slide the pen on the table closer to the quieter students.  Lily prefers this set up to having additional large student microphones around a table.  

Phonak has also come out with a flat low-profile table microphone, which looks ideal in this "reading group" situation but it has a fairly high price point, so we haven't had the opportunity to try it.  

Overall the Phonak Pen has been a great addition to our hearing technology tools. 

Lily discusses her new cello and plays jingle bells

Lily discusses her new cello journey and plays jingle bells after a month of lessons at school.  

Never did I expect Lily to take on playing a stringed instrument. She takes great joy in making the music and being able to hear whether her notes are sharp or flat.  Who knew this would be possible.  A real dream come true.   

The video also allows new families on this hearing journey to hear what a 9-year-old with CIs might sound like.  

 

Fourth grade and preschool bound!

Today is the start of fourth grade for Lily and another year of preschool for Bodie. Who would have ever imagined? Lily continues to achieve at very high levels and remains passionate about reading (and life!). She just finished the new Harry Potter script, after a summer of pouring through books.

Lily has her darling Kindergarten teacher again for the fourth grade. We are lucky she is such a strong teacher and will challenge Lily and help her grow.  

Unfortunately, our favorite principal retired this summer. This was a huge blow to the amazing school and culture she developed.  We are ever indebted to her leadership, advocacy and inclusion focus in a growing school. Hopefully we will cross paths again.  However, our new principal will be great too and has already shown great interest in "hearing issues" and providing strong support and inclusion.  

We are also lucky to be with other families and kids at the school who wear CIs.  We are able to support each other in our kids' hearing journeys.  I'm not sure where we'd be without them!   

Lily continues to wear her Neptunes, and we hope new AB BTEs will come out next year. Lily's been seeing some new advantages in BTEs like using headphones and some directional microphones. She continues to utilize a Phonak Inspiro in the classroom, in addition to a soundfield and Dyna-mics. And the best part is that all the technology worked on the first day of school!  Lily's hearing resource teacher gave a great training to the school's staff last week to prepare them for the technology and best teaching practices.

For new technology, we've got our eye on the new Phonak Inspiro touchscreen because of the Omni Directional Mic capabilities that can be utilized with small group discussions (and no mic wires) or a Phonak Pen (although not able to connect to other devices) or table Mics. Small group situations, especially in noise are very challenging for Lily. When there is one other student, they can wear the FM, but with many students, it's a real challenge.  

So much to think about and stay on top of this year but we're ready!  

 

IEP Goal for Third Grade and Lily update

Lily's just finished her second week of third grade.  It's hard to believe.  When she was born the days were so long.  Now the days fly by and Lily is growing into a "pre-teen." She's continues to be at the top of her class and gets to sit next to her best friend. Lily loves reading and she pours through books as fast as we can check them out.  She is still doing gymnastics and will be starting Girl Scouts and Destination Imagination soon.     

Here's Lily's new big IEP goal that covers many topics.  

Goal:  During discussion of challenging listening or social situations, Lily will use problem solving steps to increase her independence from a baseline of 6 points to 15 points out of 16 point rubric on self-advocacy rubric.  

This year, Lily has a new hearing resource teacher who I think will be great.  Lots of energy, passion and high expectations for kids with hearing loss.  She will check in with Lily for 20 mins a week (3x per month), either in or out of the classroom.  

Lily's new third grade teacher seems terrific.  She's expressed her openness to learn/collaborate about hearing and said Lily has been helping her remember the FM and captions.  She is also pregnant, so hopefully will put all the supports in place with a substitute when she's gone.  All great things. Both teachers have indicated things are going well.

Lily continues to wear an FM and her school classrooms all use sound fields.  We are also experimenting with a Dynamic, connected to the sound field, inside the classroom and the lunchroom.  

Other issues we identified on the IEP that continue to be a focus:

• Helping new teachers know how to use equipment
• Helping subs use the equipment
• Effective small group experiences - use equipment, staying on topic, one person talking at a time, clarification strategies
• Strategies in noisy listening environmnets
• Giving feedback that equipment is being used correctly and consistently
• Social engagement strategies with peers (reading others feedback, greetings, developing best friends)
• Understand how her hearing loss may impact her in a variety of social situations
• Understands characteristics to make or keep friends
• Respects physical space/boundaries of others specifically when trying to hear better.  

Another area we have started to focus on is CC or closed captions. When dealing with videos or TV, captions  help significantly in understanding the content and have helped Lily to become a super reader.  Captions move fast and so your reading practice and speed have to match.  They fill in all those words you didn't even know you missed.

This week when Lily's teacher turned on a Kahn Academy video in the classroom, the captions were in Czech.  Eventually we figured out how to translate them back into English. 

It's all such amazing technology.  We just have to stay on top of the various components to make sure they are working seamlessly.  

IEP Goals - Second Grade

I share Lily's ongoing IEP goals to help other families in their hearing journeys.  

In IEP meetings, parents are always asked, "What do you want your child's goals to be?"  Especially in the early years, it's extremely difficult to know what is possible, what can help my child, or what should be without spending hours researching and contacting outside professionals for guidance.    

I hope by sharing our story, other families with similar journeys can use these goals as a starting place.  Each goal below has a complex matrix to measure progress.  

Goals:

1.   Contribute to discussions without dominating, accept topic of others by adding relevant information to the conversation and ask for clarification or for confirmation if not sure of what was said. 

2.  Given various coping strategies, Lily will have a conversation with her peers on the playground and in the lunchroom.  (These are noisy difficult listening environments)

3. Improve her ability to advocate for herself by increasing her vocabulary and understanding of the functions of the parts of her CI and FM, her responsibility for monitoring her CI and FM system and by communicating her needs with her teachers.

Second Grade

Second grade seems to be going well.   We had a "pre-meeting" the day before school started with all the second grade teachers and new staff at the school. This was in addition to the regular IEP team transition meeting which also had new faces like a new SLP and Assistant Principal.  It reminded me of the critical need of training and re-training teachers to maximize the educational experience for our kids.   

The new SLP, who was just out of graduate school, told me that she's already met Lily.   Then she adds that as a student she attended our local parent group meeting Amplify, where we have SLP students "babysit" and she was able to meet kids with CIs.   Feels like a small success that this may have been her exposure to kids with CIs.  

Video - School Poetry performance

Lily reads her poem about bubbles during a first-grade poetry celebration.  

 

Destination Imagination Club

I just finished co-coaching a Destination Imagination group for Lily's school.   Our club contained nine first through third graders and we met each week to focus on Science, Technology, Engineering, Math and Art themes.  

Because this was the first year of the parent-led program, there was lot of experiementing and educating the adults, but overall it was a tremendous experience.  We explored issues of water, verhicles and transportation, communities, insects and spiders, space and animals.  

We discovered that these kids had limitless energy, imagination and creativity.   Hopefully Destination Imagination is one tool that can help to nuture and encourage this type of thinking for many years to come.  

 

Last day comments - 1st Grade

The following are comments made on a sheet of paper brought home today called "One thing I like about Lily Bliss is..."  Certain there were many examples provided for her entire class by her lovely first grade teacher, but it still may give us a little glimpse into the life of Lily.

Lily is funny, you are my friend, you are very kind, you are always listening (my favorite), you have very good hand writing, you are good at playing nicely, you are a good friend, you are very nice, you are very nice and funny, you are the smartest girl on the earth and you are so nice, funny and really smart, I like you, she helps me stay quite in the halls, you are helpful and kind, you are funny, you are nice, you are funny, you are funny, and you are nice. 

Teacher added:  funny, good friend, super speller, and learner.  

Metal Slide Journey

 

It's been a huge week.  After two years of requests, Lily and the other kids with cochlear implants at her school, can now go down one metal slide without fear of damaging their electronic hearing equipment from electrostatic discharge.  It's a dream come true.   The slide is very fast and very popular with all the kids.  Lily says the slide is a "madhouse."  Building new vocabulary is just another advantage.

We celebrated the slide's accessibility, our donors and supporters with a ribbon breaking, speeches and cookies.  The school's leadership has been so supportive.   Many of the families were there to watch with amazement when the kids' hair didn't stand on end as they sailed down the slide.  Having a metal slide makes it a little easier to breathe knowing our kids have one less barrier and risk to hearing.  

I was proud to work with the other CI families to help to begin to make our school's playground accessible for all kids. This journey has moved the school's PTO to invest in "inclusive" playground equipment going forward. In fact, another new piece of equipment is going in this week.  I was thrilled to hear that other parents thought that all kids, no matter the ability or disability, should be able to access the playground and not just be able to get on the rubber surrounding the playground. 

While the two-year-old equipment was ADA accessible, it wasn't inclusive.  With kids of varying abilities served in mainstream classrooms, it seems playgrounds are an area that needs to be given another look. 

Science Fair: Social Contagion

LIly's second elementary science fair experience was a success.  She studied Social Contagion, the idea that if we observe people who are tired, sad or bored, we become tired and start yawning.   The same is true when we study people who are happy and laughing.  We feel happy and start smiling with those we observe.  

Of course it didn't take much encouragement for Lily to develop a video of herself acting out both roles.  

Next year we hope to complete a cochlear implant or acoustics study, but this year we didn't find the right approach for a first grader.  Backwards engineering or reprogramming her CI seemed a little daunting.  Last year's project measured the noise in her school (there's a lot of it!!).  

Let us know if you have any great ideas for a science fair project we could attempt. 

Lily's U Rock Valentines

 

 

 

 

 

 

 

 

 

With a no candy requirement, Lily created wonderful "U Rock" valentines for her classmates. Each rock was custom painted.  Such a fun way to celebrate Valentines day.  

Lily's quoted in the newspaper

Reading the morning paper, I saw a story about Lily's elementary school and a new local food program.  Half way through the article I read, "First-grader Lily sat in the elementary lunchroom, bit into the day's barbecue-coated lesson and summed up her experience with a single word:  Delicious."   The reporter was directed to Lily because the Vice Principal knew Lily would have something positive to say.  HA!  

Lily now thinks she is famous and wonders when Bodie will be the newspaper.   Just another amazing day!

Hear to Learn coverage in eschool news

More exciting coverage of our Hear to Learn project in eschool news.  It's a publication for daily tech news and innovation. 

Family uses media effectively to gain cochlear implant coverage

Great story of a family overcoming an insurance denial by Conventry for Cochlear Implant coverage.  He even received Advanced Bionics.  

 

Barriers for children with hearing loss K-12 in the classroom

New report released by the Laurent Clerc National Deaf Education Center at Gallaudet University to describe the barriers that children with hearing loss aged birth to 21 face in the classroom and with school administration.

Long-term improvements in oral communication and peer relations in children with CIs: parental testimony

New study out of Penn State showing long-term positive outcomes of cochlear implantation. 

The research shows that on average, children improve in oral communication skills and have better peer relationships years after implantation, rather than immediately after. Even implant recipients who performed poorly several years after the procedure continue to improve....What helps deaf adolescents cope in middle school? The findings of their study suggest that deaf children should be supported in their early development to build healthy levels of self-esteem and confidence. The degree to which implanted children are accepted by mainstream schools – whether they are understood by their teachers and peers – can also help improve their peer relationships.

 

Supporting Success for Children with Hearing Loss

Supporting Success for Children with Hearing Loss is a great new resource filled with information about the learning and social issues of children with hearing loss and what you can do to better support the future success of these children. Resources are at no cost, designed to be easy to understand quickly, and practical to use.

Hear to Learn coverage - LJS

Thankful for more coverage of our Hear to Learn celebration - Moms give thanks — loud and clear — to supporters of amplifier project in the Lincoln Journal Star

 

A purpose? We found it!

I haven't posted forever, but think I'm coming up for air now.  I ran across this post on a blog which I've followed for a number of years and thought it perfectly captured how I'm feeling now.  We met this family at AGBell last year.  Just substitute Lily's name and I could have written it myself.  However this Mom has boy triplets who are seven-years-old (one of which has CIs and one with hearing aids) and one three-year-old girl with her own set of challenges.  The family is amazing.  When does she have time to blog?

http://thelawrencetriplets.blogspot.com/2013/10/a-reason-purpose.html

Her blog post is titled "A Reason, A purpose?"  And I think it captures a big part of Lily and my purpose, at least right now.  We've connected and mentored and been mentored by so many families around the world and in our hometown, many of who have become very close friends.  And many who have gone on to mentor others.  Which is amazingly cool.  Families almost always thank us for giving them "hope" which is so desperately needed, especially in the early days.  

It seems everywhere I go, we are introduced to people with hearing loss or people with children with hearing loss.  It may be fate or our network crossing, but it truly is some of the most satisfying work I do.

Lily inspires them all.  She too, like Cormac in the blog post, has a love of life and the ability to inspire others.  She also has a great skill at listening and spoken language, something we've focused hard on since she was two months old. It's paid off.

She received all 4s, the highest grade in Language Arts, which is dreamy. Her reading test, after the first quarter of the first grade, placed her at the end of the third grade. She could read beyond this, but began to lose some comprehension.  She also received 4s in "Confidence in Self" and "Singing," among others, which is pretty awesome. These are both areas which we have worried about for years.   

But I also see Lily's 22-month-old brother listening with ease, picking up words out of songs on the radio and speaking in four-plus word sentences already.  He probably knows more than 500 words.   At the the same point in Lily's life, she was not yet putting two words together, but she knew 200 words or so and we documented each one.  That early childhood hearing matters.  Lily's certainly caught up, but we certainly can't let up.  

Lily struggles hearing especially when it's noisy or kids have soft voices.  I watch how much she misses when I volunteer in the classroom or when Lily is outside the school.  It's tough.  

One Mom told us she used to tell her daughter with CIs, who is now in high school, just to run after the girls when they run, even though her daughter had no idea what game they were playing or why they were running because she couldn't always hear the conversations.  The Mom said the girls would make it very clear if they didn't want her daughter there.  I think that was pretty good advice. :)  

Class presentation on cochlear implants and other fun stuff

Lily and I have now given two presentations on hearing and cochlear implants at her school.  The first was a presentation to her own class.  We started by asking if there was anything different about Lily.  One child said she had braids in her hair.  Then another one said she had strings on her back.  Love it.  Lily answered all their questions, showed off her Buddy/Melody and American Girl Doll with CIs, and tried to act out each point we made about Dos/Don'ts, FMs and how her CIs worked.  The kids were most interested in the FM and radio waves, as well as the stuffed animals. 

Then one day after school a third grade teacher, who was instructing her class about sound, asked if we could come talk about Cochlear Implants and hearing.  Her class had read a small piece about cochlear implants in their textbook and they were very interested in the subject. 

This presentation was a little more complex with descriptions of the ear, why people have different types of hearing, how a CI works and then questions.  Every child had their hand in the air and they asked dozens and dozens of terrific questions until the bell rang.  They all said that they had tubes or an ear infection at one point, so they could understand when someone was not hearing as well.  A very compassionate bunch.   Their questions ranged from how does a CI work to what happens if someone can't pay for an implant. 

We tried to inspire the students to become scientists, engineers or inventors that helped people.  At the end of the presentation, Lily had taken her headpieces off to "demonstrate" so many times, that her batteries died.  I'd left my purse in the car, which always has batteries in it, and Lily had left her backpack down the hall, which also has batteries in it. 

So....in a small panic...I looked around and saw remote controls in front of me.  I began to open them up and in the second remote I found a AAA battery.  I took it out, put it in Lily's CIs and crossed my fingers that it had enough power.  It worked.  The third graders cheered and clapped and thought it was very cool. The teacher said Lily may now have a third grade "fan club."  LIly was perplexed by the comment, but soon was thrilled by the idea.  Always a language opportunity. 

CI Toolkit for parents and teachers

Recently I received The Cochlear Implant School Toolkit which was funded by a Small Business Innovation Research Grant from the National Insitute on Deafness and other Communication Disorders for review. 

Included in the toolkit were:

• A Parent’s Guide to help parents prepare their children, their children’s schools, and themselves for their children’s entries into mainstream classrooms
• A lesson plan and DVD for typical children with activities to create peer acceptance and to smooth the integration of children with cochlear implants into mainstream classrooms
• A website with supportive and interactive features for parents, teachers, and children
• A Teachers’ Guide & DVD that provide concrete strategies and examples for teaching a student with a cochlear implant, tips for creating an inclusive classroom, suggestions for classroom modifications, and testimonials from parents and teachers who have been through the mainstreaming process with a child with a cochlear implant.

All of the pieces are well done and an impressive advisory panel guided the toolkit's development. 

The research-based teacher's toolkit should be standard reading for each teacher that has a child with a cochlear implant.  The guide has been espeically useful for Lily's school.  Lily's teacher is very willing and open to learning everything and anything we provide to her.   It includes basics information such as learning about CIs and hearing loss, working as part of a TEAM, understanding challenges, setting up a classroom and refining and reporting your progress.  It is easy and quick to read while providing tons of resource materials. 

The company that developed this toolkit is also working on The Cochlear Implant University which will support high school and college students with cochlear implants and their parents as the student transitions to higher education.

The toolkit is a must read for all famlies and teachers who work with kids with Cochlear Implants. 

Kindergarten science fair project on sound

Lily's first school science fair was a huge success.  Of course her project was on sound. 

Titled "How loud is my school?" Lily and I measured various classrooms with my phone sound meter.  Lily made predictions, documented all the measurements and then created a graph with the readings. She learned the word "vestibule"  for the school's entryway, knows decibel is a measure of sound, and can now explain what the "speech banana" is all about. 

While the kindergartners weren't judged on their projects, Lily knew she won when her family came for her "official" presentation, she received a ribbon and her amazing school principal (seen below) discussed the project with her. 

 

Dana Suskind, CI Surgeon and language advocate

Loving this recent article in the Chicago Tribune about Dana Suskind, a Chicago area CI Surgeon and language advocate.  Her research program, outlined below, particularly resonated with me.  

Teaching parents about the importance of language is a key component that must drive early intervention engagement.  Tools like LENA help bring awareness to how much and how you are talking and it gives parents a 30,000 word benchmark for real direction.  And this could be applied to any family, not only to those with a child with hearing loss.  

Suskind worked with her University of Chicago colleagues to launch 30 Million Words, a program that sends research assistants to the homes of at-risk children for 13 weeks and educates their parents about the importance of engaging their children in an ongoing dialogue — and, equally important, offers them the tools to do so.

Researchers work with the parents to develop weekly word goals, with an ongoing emphasis on "the three Ts: Tune in, talk more, take turns," Suskind says.

"Babies aren't born smart," she says. "They're made smart. And how are they made smart? Your words."

"All parents should be allowed to know the power they have. If we can change how parents view their language and the power they have to impact their kids' trajectories, it will be amazing."

 

Holidays - Looking back and forward

We've made it through all the holidays.   For some reason it felt like the best holiday season yet. 

Bodie turned one right before Christmas and we can already see the challenges these December babies face.  We're going to have to get much better at Birthday parties, Christmas gifts, stocking stuffers, etc. 

Lily kept questioning us on why she was the only one that got any toys in her stocking.  She's already getting far to clever to trick.  She also kept asking about the logistics of Santa delivering toys around the world.  However, she already understands the concept that you have to "believe" for Santa to come. 

This year was such a great one for Lily's hearing.   She received her new waterproof Neptunes this spring, as well as the ClearVoice software that helps her hear in noise.  The ability to go in water and still hear has been remarkable and has changed our lives in so many ways.  The waterproof thrill is not lost on Lily.  She still tells everyone her Neptunes are "WATERPROOF....CAN YOU BELIEVE IT?" 

Lily also started Kindergarten with a personal FM and a soundfield in her Kindergaten room (with a teacher and student microphone).  It has been a remarkable combination.  While she still misses some of the quiet chit chat, she is picking up on a tremendous amount.  Probably more than some of the hearing kids. Her teachers have been a dream and so easy to work with.  This has made a huge difference. 

Lily's soundfield use has also helped launch my drive and work to develop the Hear to Learn project, where we are putting 100 soundfields in 100 classrooms in four elementary schools. Thank you everyone for supporting this project with your donations and encouragement.  We have truly been blessed with kind family and friends who support our dreams.  The project and fundraising is really starting to come together.  Can't wait for you all to see it in action.   

Here's a few more pictures to fill in the last month.  Where has the time gone?

 

Bodie's first birthday

Mannheimsteam Roller at the Lied

Putting reindeer glitter out on Christmas Eve. 

Husker basketball game to watch Uncle Philip's band

Our favorite gift.  Lily's work from computer class.

Bodie is very busy these days.

Service above self starts early. 

Music perception - What can Lily hear?

I had a wonderful discussion with one of our blog readers about how Lily might hear the different notes on the piano.  I'm appreciative of her expert explanation and feedback.  
 
Lily, depending on where you play the notes on the keyboard, may be able to tell the difference of 1-4 semitones. In some areas, she’ll be able to tell you that C-C# sound different (when not looking) but may not always be able to tell you which direction they are going. In other areas of the keyboard, she may have to have C-E or larger to tell a difference. In addition, most implants are programmed for speech at around 250Hz, which is the F# below middle C. This usually knocks out the rest of the notes below there, but not always. Her larger challenge would be telling major from minor chords (and honestly, as a trained musician, it can be challenging).
 
Regarding music you have ‘The Good, The Bad and the Ugly.’  The good is rhythm, the bad is timbre and the ugly is pitch. Mainly that is  because rhythm is a significant part of speech and helps us so it’s conveyed very well. Timbre, the ability to detect different tone qualities is harder, but can be learned.   It is hard because of its complex spectral quality. Think about how similar a clarinet and saxophone sound, for instance, now add in the complexity of a cochlear implant’s processing strategy.  Finally,pitch is the hardest, simply because you and I have 30,000 hair cells (each of which responds to one frequency) and Lily now has 18 electrodes to represent those same 30,000 hairs cells. That’s not to say she won’t be amazing (she clearly already is), but that she may have a “sweet spot” for certain types of music perception and production (ie., singing on key in a specific range).

Then Lily's fabulous music teacher, who shows so much interest in this topic (thank you), told us the following:

Semitone is another word for a half step, which would be the difference between one note next to another one on the piano, like B-C, E-F, or B flat-B. Lily was able to sing descending Major triads starting on Eb (E flat) and ending on G below middle C (which is pretty low for a kindergartner) So she sang descending triads in the Major keys of Eb, D, Db, C, B, Bb, A, Ab, and G. I'm convinced she can hear the difference between 1 semitone.

Amazing!

Lily's Report Card

I'm posting part of Lily's report card to give hope and motivation to parents starting on this Hearing/Cochlear Implant journey.  

Although Lily has just completed one quarter of Kindergarten instruction, her report card covers everything you can imagine, including language arts (reading/writing/speaking and listening) and music.  These are two subject areas that kids with hearing loss might have trouble with.  Grades are 1 to 4, with 4 being Exceeding Expectations.  

Intensive early intervention pays great dividends for the future.  We're so proud!

CI Traveling Awareness Bear - A visit from Christi

Two weeks ago, we received a Traveling Awareness Bear in the mail.  Her T-shirt says, "Hi I'm Christi, I have a Cochlear Implant."    Sure enough, attached to her bear ear was a little cochlear implant.  

The bear also came with a passport and a thick binder with journals and photos of the bear's previous adventures.  Lots of cute stories of little girls with CIs/Hearing Aids attending dancing, AVT, audiologists, parties, meals and travels.  

Lily took Christi to Kindergarten and had some great experiences including reading, math, lunch, the playground, and art.  Lily's teacher even had her speak to the entire class about Christi and her Cochlear Implant.  We have no idea what Lily said, but her teacher indicated that she did an excellent job explaining everything.  Another worry to cross off the list.

It turns out, one of our friends, with a CI kiddo, signed us up for the bear months ago (Thanks!).  The Traveling Awareness Bear organization has dozens of bears with all kinds of challenges.  These bears have now been traveling around the world for the past two years, creating tons of memories and helping kids see someone just like them.   What a great idea.  Lily loved Christi's visit.  

Lily Rocks Elementary School's Dedication Ceremony

We were proud parents as Lily was chosen to represent the 80 kindergarten students at the dedication ceremony for her new elementary school. Lily had to read a paragraph about the time capsule the kids put together to be opened in the year 2037. She did great in front of a crowd of 200+ people and was excited to be a part of this special occasion.

Top 6 things to bring to Kindergarten for kids with CIs

1)  Backpack full of backup batteries.

2)  Five cans of static spray for the plastic slides, plastic risers, big plastic things in the gym and anything else that crackles.

3)  Audio cords for the laptops if using Neptunes.  Make sure the laptops are unplugged when using the audio cord.  Also make sure you test the setup when using both the FM and the audio cord at the same time.

4)  Articles for the music teachers on "what my kid hears."  Or the recent article in the Volta Voices on "What I wish my Music Teacher knew."  This was a happy accident.  The music teacher was very interested in Lily's ability to hear notes close together.  He brought Lily into the music room to sing a third and she did it.  He was amazed.  We were too.  We knew she could sing reasonably well, but repeating the notes so close together was impressive.  

5)  A pre-meeting should be held with the classroom teacher and others on hearing technology management.  Make sure there is a management plan in place especially for the FM.  Then review everything again the first few days.  There are so many moving parts.  

6) Cookies for the teachers.

We have been blessed with a group of fabulous teachers and administrators who have really gone out of their way to make sure Lily is hearing everything.  I know things are working because Lily has come home each day with elaborate songs containing lots of details, numerous "rules for life" sayings like "I can be OK even when others are not," and specifics about what the media teacher has told them like details of her favorite book as a child.  

Feeling lucky!

First Week of Kindergarten - CHECK!

The first week of Kindergarten was a great success.  The school administration and teachers have been fantastic.  They are eager to learn, respond immediately and have a positive attitude.  

I can tell they are using the assistive technology effectively because Lily is coming home with lots of details like words to songs, facts about the Media Specialist and explanations about the man who the school was named after.  In the first week, I've sent Lily's teachers articles about listening to music with CIs, cans of static spray for slides and other static making plastic and audio cords for computer time.  

At the end of the first day, Lily annouced that, "This was the best day of the year."  She threw her hands up in the air and was ready to go back.  

My other favorite part of the first day was when picking Lily up.  Her teacher asked, "Lily can read?"  I said, "Yes."  Then she said, "No I mean, Lily can REALLY read?"  I said "Yes, she has been practicing since she was two months old."  

Grandma told Lily that we were proud of her because her teacher noticed that she was a reader.  As Lily merrily skipped along, she responded by patting her head and saying, "That is because of my CIs." And while I'm sure Lily would have been ready for Kindergarten, in this case I think she might be right.  Her hearing journey has certainly given her a great start.  

 

A few nights before Kindergarten

We are to this moment.  A moment I've thought about often.  Lily entering mainstream Kindergarten on time.  While she is young for her grade, she is beyond ready. 

When a person told us four and a half years ago that it was the Gold Standard to enter Kindergarten on time for kids with hearing loss, and then she asked us what our goal was for Lily, we reluctantly said I guess enter Kindergarten on time?  Well..here we are.  Wish we could have seen the future, but then maybe we wouldn't have worked so hard to get to this point. 

This week we have our final pre-Kindergarten IEP meeting.  Our school's motto is kids get what they need here.  I like that.  Lily enters with very minimal services and good hearing technology support.  We have two IEP goals going forward:

1)  Given an interaction with a teacher or a peer and without adult prompting or support, Lily will improve her social communication skills by maintaining/staying on topic of conversation for 6 or more exchanges and advocating for herself when she doesn't hear or understand a teacher's or peer's comment or question, improving from a baseline of 3 points in an optimal acoustic environment to 4 points in a more challenging acoustic environment as measured by the SLP Social Skills Rubric. 

2)  Given a classroom activity or discussion, Lily will respond to levels of abstraction questions/directions, increasing from a baseline of 50% to 90% as measured by SLP Levels of Abstraction Data Form, Level 3. 

These goals focus on common challenges for kids with hearing loss including social emotional/self advocacy and auditory memory/linguistic concepts.  I'm also very interested in doing some listening in noise practice. 

There is so much to think about and information to share with a whole new set of teachers and administrators.  However, I am confident that Lily will continue to soar. 

Let's Hear It For Almigal - Book Review

We picked up a sweet little book at AGBell called "Let's Hear it for Almigal" by Wendy Kupfer.  

The story is about Almigal or "Ali," a happy, spunky little girl with a BIG personality who feels unlucky because she can’t hear everything she wants to hear. Written in a similar style to Fancy Nancy and illustrated just as beautifully, Almigal loves to celebrate her friends differences including her own hearing aids.  One day, Almigal can't hear as well and must get Cochlear Implants.  

When I read this book to Lily, the moment I said Cochlear Implants, her eyes got big and her mouth fell open.  I didnt realize just how impactful this type of story could be for her.  Seeing a lively little girl who talks non-stop, loves pink and wears cochlear implants was definitely someone she could relate to.

The story continues with Almigal jumping in a pool and getting in trouble because her CIs aren't waterproof.  Lily instantly started asking why she didn't wear Neptunes.  (My how times change so quickly.)  And then Almigal's dog ran off with her CIs.  While this is something Lily's dog would have done if given the opportunity, there is no way Lily would allow this to happen.  She doesn't take her CIs off.  

The story ends with Almigal's parents putting her to bed and now she can hear them saying that they love her.  Tears!  Great book. Thanks for writing it Wendy.

Improving literacy for children with cochlear implants

Two new studies have been referenced by the Hearing Review concerning children and Cochlear Implants.  This is particularly interesting for Lily who is entering Kindergarten this fall with minimal services. This research recommends that we remain vigilant with intensive language supports, at least through the early elementary years.  

Both papers are based on a decade-long study that has followed over 100 children with hearing loss and normal hearing, some from birth, with a goal of establishing predictors of future language abilities and the long-term extent of support needed for their success. The studies offer a look at what measures are the most accurate predictors, and the types of interventions that may improve literacy.

In "Measuring what matters: Effectively predicting language and literacy in children with cochlear implants," published in International Journal of Pediatric Otorhinolaryngology, her goal was to evaluate how well various language measures typically used with very young children after they receive cochlear implants predict language and literacy skills as they enter school. The study included 50 children, some with normal hearing and some with cochlear implants. She concluded that before 24 months of age, the best predictor of later language success is language comprehension. In general, measures that index a child's cognitive processing of language are the most sensitive predictors of school-age language abilities.

The second article published in Ear and Hearing, "Emergent Literacy in Kindergartners with Cochlear Implants," examined the early or emergent literacy of young cochlear implant recipients. The study looked at 27 deaf children with CIs, who had just completed kindergarten and had been tested on emergent literacy, and on cognitive and linguistic skills that support emergent literacy.

They found that intensive language support needs to continue through at least the early elementary grades for these patients. Also, a period of bimodal stimulation during the preschool years can help boost emergent literacy skills to some extent.

 

iHear - Online Therapy in Nebraska

iHear, an on-line therapy program for children with hearing loss, is ready to assist families in Nebraska who have children with a hearing loss.

Thanks to the Omaha Hearing School Foundation, St. Joseph Institute for the Deaf has received a grant to provide speech and language therapy services via the Internet to children in Nebraska and western Iowa.  

This is an incredible opportunity for families to receive high quality therapy from SLPs or Hearing Resource teachers that are certified AVTs or AVEds and also LSLS certified who work with kids with hearing loss everyday.  

On-line therapy is a great addition or supplement to a child's current therapy or as an alternative for families who cannot access highly-trained therapists in their area.  

For more information, see http://ihearlearning.org/

Nebraska Early Hearing Detection and Intervention Annual Report 2011 - Newborn Hearing Screen Results

The Nebraska Early Hearing Detection and Intervention Annual Report for 2011 has just been released.   This is a must read for anyone trying to gain a broader understanding of the hearing detection and intervention work being done in Nebraska.  (See PDF of 2011 Newborn Screening Annual Report) 

Some of the interesting highlights include:

• Hearing Screens were reported on 25,746 newborns or 98.98% of those born, prior to discharge from the hospital.  This is a dramatic increase since reporting began in 2000, when only slightly more than one-third of newborns received a hearing screening during birth admission.
• 94.92% of newborns passed the inpatient hearing screening, 4.06% did not pass the screening, .64% did not receive inpatient screening and .37% of newborns died.
• 114 infants received a complete audiologic evaluation.
• 43 infants were diagnosed with hearing loss in one or both ears.  Thirty-four were identified with bilateral hearing loss and nine infants were identified with unilateral hearing loss.  The degree of hearing loss breaks down as 33% profound, 12% severe, 46% moderate, and 9% mild.  
• 74% of the 43 infants were referred to the state's early intervention Early Development Network within six months, 9.3% were referred after six months and 16.3% were not referred directly by the audiologist or medical home.    
• There are currently approximately 770 children in Nebraska who are identified by the Nebraska Department of Education with a primary diagnosis of deaf or hard of hearing.   

 

Lily and her SLP Carole

Carole has been Lily's speech teacher since she was 10 month old.  That means we've seen her approximately every week for four years.  Now that Lily is almost five, she will move on to very limited speech services in her elementary school this fall.  

We are truly saddened to have to say goodbye to a wonderful resource and friend.  Carole's been positive, supportive, creative, resourceful, engaging and connective.  She taught us so much about speech, ourselves and about life.  I hope we were able to teach her a few things too.  

Carole is definitely a big factor in Lily's success and we thank her from the bottom of our hearts.  

FM classroom simulation for kids with hearing loss - Video

Excellent "how to" and "why" video on using an FM in the classroom.  Teachers take note!

 

Classroom Acoustics - 40%+ say they can't hear

Always interested in understanding the importance of hearing in classrooms.  Here is a new Swedish study that says four out of ten students experience problems with their sound environment during their education.

 

 

TEDMed Talk by CI Surgeon - CIs and Music

Very interesting TEDMed talk (16 mins) by cochlear implant (CI) surgeon and musician Charles Limb, associate professor, Otolaryngology, Head & Neck Surgery, at Johns Hopkins.  He explains the challenges of CI patients hearing music and the brain research that is being done to help restore the full range of human hearing abilities.  The talk even shows a video of a cat with a CI responding to a trumpet. 

Lily loves music and has recently figured out the phrase "That song is stuck in my head."  Her newest trick is dancing around the house singing "I got the mooooooooooooves like Jager" over and over again.  More focus and attention on music therapy would be an incredible addition to the speech therapy that now helps kids with CIs learn langauge. 

 

Music changes our brains

Excellent article on how music changes our brains.   We've long been a believer in incorporating "music therapy" in all forms in Lily's auditory rehab, as there is growing evidence in its impact for listening and language.    

I'm often reminded of the person who told me "there was no proof, I was wrong in believing this, and that they wouldn't even consider this as a part of LIly's therapy."   Glad we didn't listen to this advice.  

Apps - An Emerging Tool for SLPs

Excellent article on Useful Apps for SLPs and parents.  Now Lily will want her own IPad or IPhone.  

Technology has changed the teaching of deaf students

Interesting article from the National Association of State Directors of Special Education concluding that Technology has changed the teaching of deaf students

What parents want from physicians

Great article about what parents want from physicians after their child has failed a hearing test or been diagnosed with a hearing loss.  All these were true in our case. 

Preschool Update

Lily is now in her second year of mainstream preschool.  She attends two different preschools and is loving it.  She has grown from a more reserved three year old, to a eager four year old answering and asking endless questions.  

For Lily's new preschool this year, we (my public school SLP, TOD and I) met with the teachers before class started and discussed good teaching strategies for kids with hearing loss, as well as "how tos" with her CIs and FMs. It's the "how tos" and the "this could happen but probably won't" that scares the teachers the most.  We also asked the preschool to use static spray on the plastic slides and plastic play structure.

They took it all in, asked great questions and have placed static spray around the building :).  We've had no problems with the CIs or FMs at preschool.  In fact one of her teachers said she loved the FM.  Great to hear.   I love the FM too.  Such a great tool, especially in noise.  

Already during the second week of preschool, Lily was eager to serve as a host for a new student, showing her the ropes. Lily's made lots of new friends and is off to a great start. 

We continue to work with our public school SLP three times a month, through home-based services and have a TOD visit once a month, typically to Lily's preschools or on-call for technology issues.   This has been a perfect fit of services for our family and has helped Lily to thrive.   

An intro to FM - Terrific Phonak Seminar/Video

Here is a terrific seminar/video on FM technology from Phonak.  Well worth the time to watch.  It covers everything from SNR to how scores for "hearing in noise" improves as people get older. It also describes those who would benefit from an FM including children and adults with hearing loss (even unilateral hearing loss), people with MS, children with autism, non native learners, those with auditory processing disorders, etc.

 

$1 in EI Services = $2 of Benefit

Social and economic benefits of early intervention for deaf children far outweigh investment cost says new report.

"Every dollar invested in early intervention services for deaf children produces almost two dollars worth of social, educational, vocational and economic benefit"

IEP - 4 years old

At 4 years old, the following are Lily's IEP goals for the next year.

- Given visual/verbal cues, Lily will improve her speech production of /l/, /l/ blends and initial and final /th/ from the baseline of 10% accuracy in imitation of single words to 80% accuracy in sentences and structured speech as measured by the LPS SLP Articulation Data Collection Chart.

- Given a structured activity, Lily will produce phrases/sentences with correct use of comparatives and superlatives, words denoting time, nouns with two descriptive adjectives, and a variety of prepositional phrases (at least 12 each) improving from a baseline of 25% to 80% as measured by the LPS ECSE Grammar Rubric.

- Given an interaction with a teacher or a peer, Lily will improve her social communication skills (maintain/stay on topic of conversation for 3-4 turns, advocate for herself when she doesn't hear or understand a peer's comments or questions), improving from a baseline of 2 points to 4 points,as measured by the LPS SLP Social Skills Rubric.