Life is Bliss - Lily's Cochlear Implant Journey

Hearing First - Impressive new LSL resource

Hearing First is an impressive new resource that presents the various aspects of a Listening and Spoken Language (LSL) approach.  

http://www.hearingfirst.org

Through a variety of informational resources, families and professionals can use this site to learn about strategies used to improve outcomes when teaching children with hearing loss to talk and listen.  

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.  

Hearing Resources

Three great hearing resources for families with kids with hearing loss.  

Jane Madell - A list of PDFs and videos on a variety of hearing related subjects.  I especially like this video showing how to use an FM in the classroom.

Success for Kids with Hearing Loss - Karen Anderson has a fresh approach and highlights many interesting tools and resources.  As Lily gets older, I'm interested in learning more about Interact-AS a school speech-to-text captioning device.  

American Cochlear Implant Alliance - View materials from their plenary and special sessions at their recent conference.  

 

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.

Hearing Our Way Magazine

Interesting new magazine called Hearing Our Way for children and teens with hearing loss.  Subscribe on the website to get a free subscription mailed to you today.  

Hearing Our Way is an educational magazine for children and teens with hearing loss designed with language, listening, self-advocacy, and cognitive skills in mind. Independent readers will enjoy the magazine on their own, though students of all ages and reading levels can benefit from using the magazine as a classroom reader guided by a teacher or parent. Articles and features are great discussion starters, and content can be easily implemented into current curriculum, IEP goals, and Common Core standards. 

 

 

 

Huskers' Spring Game

Lily and Bodie experienced their first Husker Red/White spring game.  Feels a little like Where's Waldo.  Can you find them on the field?  

While the sound system in the stadium was really loud, it often times wasn't that clear.  Announcements, calls and music should have been captioned for those who are deaf or hard of hearing.  

Some sports stadiums are moving to IPads where people can follow the captioned action, but I hope that progressive stadiums will figure out Jumbrotron captioning before they are legally required to.  

Therapy via IPads for children with cochlear implants

Great story on using IPads for teletherapy in a program called BabyTalk.  For newly implanted children under three, this program helps babies in Northern California learn how to listen and speak.  It's a partnership between Stanford School of Medicine and Jean Weingarten Peninsula Oral School.  

Lucile is one of about 17 other hearing-impaired toddlers from across Northern California — from Salinas to the Oregon border — to participate in a new "teletherapy" program called BabyTalk, a collaboration between the Stanford School of Medicine's Department of Otolaryngology and the Jean Weingarten Peninsula Oral School for the Deaf in Redwood City. - See more at: http://med.stanford.edu/ism/2013/december/babytalk-1209.html#sthash.OYDThTLM.dpuf

Lucile is one of about 17 other hearing-impaired toddlers from across Northern California — from Salinas to the Oregon border — to participate in a new "teletherapy" program called BabyTalk, a collaboration between the Stanford School of Medicine's Department of Otolaryngology and the Jean Weingarten Peninsula Oral School for the Deaf in Redwood City. - See more at: http://med.stanford.edu/ism/2013/december/babytalk-1209.html#sthash.OYDThTLM.dpuf

Lucile is one of about 17 other hearing-impaired toddlers from across Northern California — from Salinas to the Oregon border — to participate in a new "teletherapy" program called BabyTalk, a collaboration between the Stanford School of Medicine's Department of Otolaryngology and the Jean Weingarten Peninsula Oral School for the Deaf in Redwood City. - See more at: http://med.stanford.edu/ism/2013/december/babytalk-1209.html#sthash.OYDThTLM.dpuf

Lucile is one of about 17 other hearing-impaired toddlers from across Northern California — from Salinas to the Oregon border — to participate in a new "teletherapy" program called BabyTalk, a collaboration between the Stanford School of Medicine's Department of Otolaryngology and the Jean Weingarten Peninsula Oral School for the Deaf in Redwood City. - See more at: http://med.stanford.edu/ism/2013/december/babytalk-1209.html#sthash.OYDThTLM.dpuf

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.

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

 

Huffington Post Coverage of Hear To Learn Project

Lily's Mom is amazing (regular readers already knows this). As usual she continues to make an impact for Lily and others. Today she got some much deserved national coverage for her Hear To Learn project to bring amplification to elementary schools here in Nebraska. Check out the Huffington Post blog post and the video (Lily makes a cameo as well).

Technology Can Help Ensure Our Students Hear, Learn, and Achieve.

So proud of the work she does day in and day out.

 

Oberkotter Foundation establishes new national center for professional learning in LSL

Oberkotter Foundation plans to establish a new national center for professional learning in listening and spoken language. It will be launched in spring of 2015. 

This is such a needed resource to support professionals teaching children with hearing loss.  It can't come soon enough. 

EHDI Resource Guide

Extensive free Resource Guide for Early Hearing Detection and Intervention from the National Center for Hearing Assessment and Management at Utah State University. 

Stanford's School of Medicine highlights Lily's blog

Love being featured on Stanford's School of Medicine's blog about Going back to School with hearing loss.  

They have identified other excellent resources in this post like our friend Drew's Blog and our friend Rachel's website called Cochlear Implant Online.

Ironically, Stanford is one of the places Lily's Dad and I joke about Lily attending.  When we ask Lily where she is planning on going to college, she says, "Mom, I'm just in Kindergarten."  Maybe Lily can include this coverage on her admissions application.    

Nebraska Hearing Aid Banks

Great collaboration in Nebraska with three different hearing aid banks targeting everyone from babies to seniors.  Find out more at http://cehs.unl.edu/barkley/HearU/index.shtml

 

Listen to an FM through a hearing aid

I've been thinking and studying FM systems and Soundfields a lot lately.  

Found this fantastic simulation of what speech sounds like when recorded first through a hearing aid, and then through a personal FM system linked to the hearng aid.

The demonstration takes place in an empty classroom while the presenter walks toward and away from the "listener" and while competing voices are played in background. 

If you aren't a believer in Assistive Listening Devices like FMs or Soundfields, you soon will be!!!

 

 

 

Ask Doctor K

This article by Dr. Anthony Komaroff of Harvard Medical School was in our local paper today.  He was answering a question from someone with severe hearing loss that was inquiring about candidacy for cochlear implants.  Very good basic explanation.  

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/

HearU Nebraska

HearU Nebraska, a hearing "fund" for families, has been started by Stacie Ray, a Mom of a child with hearing loss and professor at the University of Nebraska.

The mission of HearU Nebraska is to make sure children are fit with appropriate hearing devices immediately after diagnosis and for the devices to be maintained or replaced as needed, throughout childhood.  

With the high costs of hearing devices, accessories and batteries, there are always expenses to keep our children hearing to their greatest potential.  

We are fortunate to have decent insurance, despite having to "fight denials" for items that are covered or should be covered by our policy.  However, even with insurance, we've met our family insurance deductible four out of the last five years and this doesn't include all of the out-of-pocket costs we've incured such as transportation and private therapy.  

For hearing aid and Baha users, the costs of the technology are often "exempt" from coverage. This is a glaring hole in insurance coverage, especially for children, and one that has been addressed in over 20 states through an insurance mandate requiring coverage.  

HearU Nebraska currently has hearing aids, a Baha and care kits available for qualifying children in Nebraska.   They are also working on raising additional funds to support this misson.  Annually there are approximately 45-50 babies born in Nebraska with a permanent hearing loss.  That is about 1-2 children out of every 1000 born.   

For more information, contact Stacie Ray at 402-472-2075 or [email protected]

Cochlear Implant Help - New information resource

Great new information resource on Cochlear Implants - Cochlearimplanthelp.com

 

 

20 iPad Apps for hearing loss

Here is site highlighting 20 iPad Apps for Hearing Loss.  They range from apps that check your hearing and will find captioned movies, to apps that teach you about hearing loss and provide tools for augmented communication.  

Lily's Dad and I proposed giving a session about this very subject and more at the 2012 AG Bell conference. Hope someone speaks to this incredibly valuable and rapidly growing resource this summer. 

Inside of the ear video

An interesting 7-minute video that takes viewers through the inside of the ear, to the acoustic accompaniment of classical music.  A narrator describes how the sound waves travel through each portion of the ear, and how hair cells translate the vibrations they induce into nerve impulses.  

For anyone trying to understand how the ear works, this is the video to watch.

 

What difference can an FM make?

I'm always interested in how things sound for LIly.  

This page contains recordings of speech through a Comtek FM system in quiet and in noise, through the FM (on the lapel of the speaker) and/or environmental (on the body of the listener) microphones, at a distance of three and twelve feet from the listener. Multi-talker babble speech noise was presented from behind the listener at a level of about 60 dBA.

It is not clear if these recordings are through an additional listening device like a hearing aid or cochlear implant, but the differences are still facinating.  

ihear - Long Distance Oral Ed

Distance learning is getting better and better, especially for kids with hearing loss, in remote or rural places, with a lack of accessible services.  Check out IHear by St Joseph Institute for the Deaf. 

Resource for teachers of students with hearing impairments

Good resource of learning activities for young kids with hearing impairments (or any kids for that matter). It is written by a teacher of HI kids so has language targets, vocab, etc.

 

Apps - An Emerging Tool for SLPs

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

Hearing Care in Developing Countries

Great article explains promise and challenges of bringing hearing care to developing countries.

Curtains that squelch noise

Interesting article about the use of modern sound absorbing cutains that squelch noise.  Think of all the possible uses.

The Birth of a Word - TED Video

Here's a TED Video on the "Birth of a Word" by Deb Roy.  We referenced him in a previous post. He is the MIT scientist who captured his son's first 90,000 hours and first words.  The speech is 20 min, but worth the time to watch.  Take note as the word water is said over and over and how it evolves over time.  It is mind blowing.   

Fun Hearing Test

Here is a fun hearing test to see what sounds you can hear.  What is the highest frequency you can hear?  

Soundbite Dental Hearing Aids

Hearing Aids in your mouth?  Interesting!  

"With functions similar to a cochlear implant, this dental hearing aid receives audio signals from a transmitter in the ear and in turn resonates the cochlea, through the teeth. It is designed to deliver sound across a broad frequency range of 250 to more than 12,000 Hz."

Pediatric Audiology Free Online Conference - March 14-18

AudiologyOnline Virtual Conference starting tomorrow - Pediatric Audiology-Raising the Bar - Tremendous!!!   Worth signing up if you only listen to Carol Flexer.  A lot of other top notch pros as well.  

Helmets and Cochlear Implant Use

Interesting blog post by XSports Protective on ideas for helmets and cochlear implant use.

Also posted this blog post from Funny Old Life on the same subject before, but it has been updated.

I hope we're only one or two Cochlear Implant generations away from not having this as an issue at all.

Can you tell I'm thinking spring again?

Self-Service Hearing Aids on Your IPhone

via www.ear-machine.com

EARs lets you use your iPhone, iPod Touch, or iPad as a hearing aid. The app amplifies the sounds around you in real time and allows you to easily shape their tone so you can hear clear, crisp speech. With EARs’ innovative interface, improving the sounds is as easy as moving one finger. EARs can be helpful when you are having a hard time understanding a conversation in a loud room, or when you want the television to be louder without bothering others.

This is facinating.  I don't know if this application actually works as it indicates to improve hearing, but the idea and application of self-service hearing aids through your phone is game changing.

Hearing Aid Museum

Interesting website called the Hearing Aid Museum.  It displays hearing aids and related devices for the last 100+ years. 

AG Bell Scholarships

The Alexander Graham Bell Association for the Deaf and Hard of Hearing (AG Bell) offers several scholarships for full-time students who are deaf and hard of hearing and who are pursuing an undergraduate or graduate degree at an accredited mainstream college or university.

This is a merit-based scholarship program with award selection being extremely competitive. While the number and value of awards varies from year to year. In 2010, 144 eligible applications were received and 18 awards were granted, which ranged from $1,000 to $10,000.

Audiologist - 9th Best Job for 2011

According to careercast.com  - Audiologist is the 9th best job for 2011.   Good work environment, low stress, low physical demand and strong hiring outlook. Average income: $63,208.00

What is a Cochlear Implant - Man on the Street Video

Interesting "Man on the street video" asking people if they know what a Cochlear Implant is.  Uhhh What?   Certainly demonstrates the need for more education about hearing loss and cochlear implants.

 

Lena System Results - 34,627 words

Researchers Hart and Risley, conducted nearly 10 years of research to learn why some children perform better than others in school. 

They concluded the quantity of talk and interactions that parents had with their child predicted a child’s IQ and vocabulary size more so than any other variable, including parents’ education or socioeconomic status.  They also indicated that to ensure your baby’s optimal growth, your baby needs to hear 30 million words in the first four years of life.

We have been using the Lena System (a little digital voice recorder) once a month as part of a study with the Omaha Hearing School and I always find the results fascinating and eye-opening.  The study is trying to gauge whether knowing you and your child's language results from the Lena system, impacts your ability to increase conversations with your child. 

This month we used the Lena on a day Lily attended preschool. 

As we saw last month, conversational turns decline during the preschool period, as do child vocalizations.  However, Lily was the "line leader" during this recording so it seemed she had more opportunity to talk. We also see a lot more Distant Speech during the preschool period, instead of Meaningful Speech.  The Distant Speech is either that of other children or is hopefully being addressed through the use of an FM system. 

Adult words for this day were at 34,627. That is well above our daily goal of 30,000. Total conversational turns were at 1,660 and Child Vocalizations were at 5,129.

At 30,000 words a day (and this is up at the 99th percentile and takes lot of very intentional talking), Lily would hear 42 million words over four years.  However, since she didn't hear for for the first 10+ months, we have to subtract 9 million+ words.  That means were back to around 33 million words, which is above the 30 million, but not by much.    

For me, this certainly strenghtens the arugement for earier implantation and front loading services.  Parents don't have enough time to fill these language databases up, before the windows start closing.

Annual Noisy Toy List

Did you purchase any of the 2010 Top 10 Noisiest Toys?   Each year, the Sight and Hearing Association, along with researchers from the University of Minnesota, tests toys and puts out a list to help parents combat hearing loss in children. 

Hearing loss can be cumulative, meaning that hearing loss occurs from being exposed to loud noises consistently, over time.  Avoid toys that are louder than the recommended 85 dB.  

2010 Ten Noisiest Toys

1. Bell Riderz Block Blaster  from Bell Sports, Inc. - 129.2 dB
2. Cars Shake ‘N Go Ramone from Mattel, Inc. -.119.5 dB
3. Transformers Optimus Prime Cyber Sword from Hasbro - 110.1 dB
4. True Heroes Sonic Battle Blasters from Geoffrey, LLC - 110 dB
5. CAT Mini Mover from Toy State Intl Ltd. - 104.8 dB
6. Rocket Boost Iron Man 2 from  Hasbro - 103.2 dB
7. Road Rippers Rush & Rescue Fire Truck from Toy State Intl Ltd.-101.6 dB
8. Interaction Morris from Learning Curve Brands, Inc. - 98.7 dB
9. Proto Bat-Bot Figure from Mattel, Inc. - 98.6 dB
10. CAT Honk & Rumble Wheel from Toy State Intl Ltd. - 96.6 dB

Hearing Loss in Children - Great Resource by the CDC

The U.S. Center for Disease Control recently launched a very thorough page on Hearing Loss in Children.  Worth some time reviewing, especially those newer to the hearing journey.

Visit from the Fire Department

The Lincoln Fire Department came to our house last week to install a flashing strobe fire alarm, a clock that hears this frequency and activates a vibrating disk located under Lily's pillow, and regular fire alarms for the rest of the house that can active the same clock. 

Apparently our fire department received a large grant to provide these life saving tools to people with hearing loss in our community.  I've been thinking about how we would do this for years.  In one hour, they answered all my concerns, installed everything and even let Lily climb in the front seat of the ladder truck.  Very Cool.  Loving the Fire Department.

 

Rosie's Ranch: Ride - Listen - Speak

While at AgBell, we found this interesting ranch in Colorado called Rosie's Ranch that identifies itself as a therapeutic riding center for listening and spoken language development. 

Their vision says "At Rosie's Ranch, we dream of providing a therapeutic, family-centered, authentic western atmosphere where, by engaging with horses, children with deafness or other oral language hurdles will expand verbal, listening and reading skills."   How Cool!!! 

Carol Flexer - It's All About the Brain (Part 2)

Here's part two of my mini-notes.

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• Sound field device is a strong teaching tool.
• FMs need to be programmed to the individual child by the audiologist with sound room testing and listening in the classroom. All that is at stake is their brain.
• +6dB is what adults require to hear in noise. Twice as loud as background sounds. 
• 10 times louder is required by all children +15-20dB
• Most classrooms have inconsistent SNR. Proximity to speaker does not work alone.
• Six year olds can't navigate like a 50 year old.

Carol Flexer - It's All About the Brain (Part 1)

Had the opportunity this weekend to spend some time with Carol Flexer at the Aurora Leadership Center where she came to speak to parents and professionals about hearing loss. We've promoted her book Children With Hearing Loss: Developing Listening and Talking Birth to Six in our Amazon list since we started this blog and it was nice to finally meet her and get some first hand teachings and insights. 

 

She spent two days presenting on a variety of topics - all relevant, engaging, and spot on to our hearing journey and others. Can't recommend enough to see her speak if you get the chance (She'll be speaking the AG Bell Conference we mentioned last post). 

Anyway, here's a series of mini notes I took during the sessions.

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Ling 6 Test - Iphone/Ipod App

Here's a new Iphone/Ipad application to test the Ling 6 Sounds

This app creates a quick, easy and fun way to check and see that a child detects those sounds that lie within the speech spectrum of hearing and can be used daily to insure that cochlear implants are functioning properly.  In the "old days" we used a big bag of toys. 

Great Idea!!!

Spatial Hearing Study

We are off to Wisconsin this month to participate in a Study on Spatial Hearing:  Speech and Language in Toddlers who use Cochlear Implants.  Dr. Ruth Litovsky is the Director of The Binaural Hearing and Speech Lab at the University of Wisconsin - Waisman Center.  She studies how young children learn to locate sounds in their environment.  We are excited to participate in this research and hope it can help shape the future of Cochlear Implant research.   More to come.  

Music Benefits

Another study looking at the benefits of music for cochlear implant users. Lily loves her Kinder Music classes.

Scientists Decipher How Brain Handles Silence

Interesting article regarding research into how the brain detects and uses silence in speech processing. According to the article, "U.S. researchers say they've spotted mechanisms used by the brain to switch off sound processing at key moments. "Being able to perceive when sound stops is very important for speech processing. One of the really hard problems in speech is finding the boundaries between the different parts of words. It is really not well understood how the brain does that," psychology professor Michael Wehr, a member of the university's Institute of Neuroscience, said in a news release."

Noise - Phonak FM Simulation and ClearVoice

Very cool simulation from Phonak about the power of their Dynamic FM system.  In the simulation you can adjust all the sound parameters including ambient noise, speakers voice and distance from speaker.   It also totals the SNR - Sound to Noise Ratio, which is increasingly important to understand for kids with Cochlear Implants.  New research is showing that keeping the background noise down is so critical.  While Lily can hear down to 20dbs in quiet, her hearing drops dramatically in noise.  Advanced Bionics is coming out with software called ClearVoice that makes important adjustments for this.   While approved in Canada, it is still in clinical trials in the US.