Life is Bliss - Lily's Cochlear Implant Journey

2017 Lily Update and More

We think about Lily's hearing everyday, but life now seems pretty normal. Hearing doesn't limit Lily's activities or experiences.  In fact, she seems to gravitate to all things talking, listening and music.

I wanted to summarize Lily's activities and growth through 2017 starting with two videos that featured Lily as a guest host.  These videos were targeted to fourth graders and highlighted special things about Nebraska.

 

Cochlear Implants in Noise: SNR loss in children using the BKB-SIN

Lily just finished her semi-annual visit to the audiologist.  We arrived with what turned out to be a broken headpiece, and fortunately, were able to order a new one for delivery the next day.  The headpiece had been cutting in and out for the previous few days and created a number of difficult listening situations with just one side.  

With a loaner headpiece, Lily went into the booth for tests.  

In quiet, Lily does very well.  Tonight, Lily was asking if she hears as well as a "typically" hearing person.  When we said yes, pretty much, she was quite proud.  However, noise continues to be a challenge.  Especially when the noise is variable.  

At the audiologist, Lily took an interesting test - BKB-SIN.  The BKB-SIN is a speech-in-noise test that uses BKB (Bamford-Kowal-Bench) sentences, recorded in four-talker babble. The BKB-SIN can be used to estimate SNR loss in children.   Lily's results were as follows.  Essentially, it says for Lily to get 50% accuracy, the signal has to be at least +9db above the noise floor or +11.5 db more than a normally hearing person (in a bilateral hearing situation).  

BKB-SIN Right CI only   SNR for 50% correct:   SNR loss re: normal Left CI only   SNR for 50% correct:   SNR loss re: normal Bilateral CI’s   SNR for 50% correct:   SNR loss re: normal	+14.5 dB 17 dB   +9.5 dB 12 dB   +9 dB 11.5 dB

An individual with normal hearing sensitivity would be expected to score 50% correct at a signal to noise ratio of -2.5 dB.  The SNR loss is the difference between the signal to noise ratio at which Lily scored 50% correct and -2.5 dB.

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.  

Speech Perception Testing - The Challenge of Noise

We recently went for Lily's six-month CI tune up with her audiologist.  The two hour appointment goes quickly, however this time we were able to do some speech perception testing and examine what happens to Lily's listening abilities when she uses the FM system.

HINT Sentences in quiet:  97%

HINT Sentences in noise (+5 dB signal-to-noise ratio): 71%

HINT sentence materials are at about a 1^st or 2^nd grade reading level, so one might compare her performance on this test to listening to material that is routine or familiar.  A signal-to-noise ratio of +5 dB is not especially uncommon in a typical classroom and noise levels can often be even higher than this.

AZ Bio Sentences in quiet:  84%

AZ Bio Sentences in noise (+5 dB signal-to-noise ratio):  42%

AZ Bio Sentences in noise (+5 dB signal-to-noise ratio) with FM in use:  91%

AZ Bio sentence materials are at about a 6^th grade reading level according to some lectures.  It would be appropriate to use Lily’s performance on this as analogous to listening to material that is unfamiliar or that is new information/vocabulary.

We continue to search for better technology to help Lily hear in noise, especially when it is in a multi-talker environment like the lunchroom or during small group discussion.  

 

Reading upside-down

Lily commonly reads upside down.   She and the book are totally flipped over while her legs wave around in in the air.  Not sure what it means or if there is any research around something like brain stimulation when reading. Maybe this could be Aunt Kelly's new reading research focus???  

Lily continues to devour books and grow in her literacy skills.  We check out bags of books, instead of just a few, because they don't last very long.   

With all this time spent upside down and flipping around, Lily is now enrolled in gymnastics.  We briefed her teachers on tips for communicating, but parents sit behind a glass window in one corner of the gym, so I'm not sure how much she is actually hearing or missing.  The gym is a very challenging listening environment.  However, even with the difficulties hearing, Lily is loving the experience.  

Her Neptunes make a little bump under her leotard, but don't seem to give her much inconvenience.  The headpieces stay on well in their ponytail setup, even when she's spinning around and around and around.  No limitations for this kid!

Video - School Poetry performance

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

 

Hearing Research - Lily's contribution

Lily and her "hearing enabled" colleagues are on the forefront of a generation of kids who are able to maximize technology to hear.  

Because of this, we believe it's important to participate in hearing research whenever possible.  We do it both to benefit Lily's future and the families that will walk in our path.  Over Lily's lifetime we've done a half-dozen studies on language learning and listening.

This summer, Lily will add two more to her research resume.  One study earlier this summer involved a research van coming to our home.  Lily completed numerous listening and language tasks, in the van, to help the University of Iowa understand how kids with hearing loss are learning language, compared to their typically hearing peers.  

The next study will be at Boystown in a few weeks which involves telelearning or telemedicine.   Boystown is studying if providing audiology services for children on-line is as effective as in person mapping.   Here's an Interesting article describing Boystown's future hearing research focus. 

 

 

#HearIam Phonak contest

We entered Phonak's recent #HearIam contest with cute photos of Lily and her Phonak Inspiro FM system.  The prize is a new Phonak Roger Pen, which is a microphone cleverly disguised as a writing pen.  Very cool!  

 

Lily's Card Shop

Sharing a entrepreneurial spirit with her Dad, Lily describes her card shop.  

 

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.

 

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. :)  

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. 

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."

 

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!

Good Speech Apps for IPhone/IPad

Here are a few useful speech apps for IPhone/IPad that you can experiment with for developing expressive and receptive language in toddlers.  These tools can help learn skills like imitating sentences and answering questions with a picture context, as well as following directions embedded in a sentence. 

• My PlayHome - Following directions - Lite version is free. 
• My Scene - Age 2+ Story Creation - Free
• Outdoor Fun - $2.99
• Toddler Seek and Find - Lots of versions - Good reviews - Free to $2.99
• Fun with Directions - Following Directions - $.99
• What's in the bag - (literally) Guessing - Can be used with all ages** - $.99

 

 

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.

AGBell Conference 2012 - Lily's reflection - Video

In the video below, Lily reflects on her trip to Arizona to attend the AGBell conference. Love that Advanced Bionics's mascots Melody and Buddy, as well as Chris Barton the music therapist and author of TuneUps rank right up there at the top of her experiences.  I think she meant to thank AB, instead of AGBell, for her CIs.

Lily also talks about how great it was to swim, but the real thrill was for us to be able to talk with her in the pool because of her waterproof Neptune CIs.   The language, the safety, the fun games...what a difference!

 

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.

 

AgBell Conference 2012 - "Bee" a Champ: Spelling for Improved Literacy

"Bee" a Champ:  Spelling for Improved Literacy
Cynthia Robinson, M.Ed, CED, LSLS Cert. AVED, Co-director of Clarke School, Jacksonville, FL

Braid of literacy
- oral language and reading
- drawing writing
- sound symbols
- favorite words
- compare and contrast words
- make slight changes in words and sounds
- mature as readers and writers they expand their vocabulary through reading

When child is reading auditory cortex lights up - oral activity

Words Their Way - Bear and Invernizzi - important book

Spelling patterns and knowledge are developmental

5 developmental stages

1. Preliterate - no relationship to spoken language - lines shapes pretend to read.  Hold a writing implement and write on paper.  Confuse that drawing is the same as writing.  

Progress includes horizontal writing letters and numbers. Use some letter sound matches.  Draw lines for the words.  

2. Letter name stage - establish directionality, make letter sound substitution based on articulation. Miss vowels and digraphs.  Concept of word.  Read pattern books.  Age 5-9

Progress is when initial final and beginning consonants.  Spell short vowel words.  Get blends and digraphs.  Using memory.  Read pattern books and charts and long vowels.  Word wall

3.  Within word - Single syllables.  Primary and secondary vowels.  Common suffixes .  Confuse low frequency long vowels, common. Inflections, unstressed syllable vowels.    Silent reading.  Reading with expression.  Double vowels.  Age 6-12

Progress includes chunks of patterns of sound and meaning.  Experimentation of vowels.  

4.  Syllable juncture - age 10 - to adult
Short and longer vowel are stable.  Spell suffixes.  Confuse vowel and consonant alternations in related pairs.  Reading fluent.  May omit syllables.  

Progress includes spelling and syntax with plurals, learn tion and sion, notice how change in action and stress.

5. Derivational constancy - understand  why structures exist, study meaning of prefix and suffix, spelling and meaning movement. Reading vocab and roots. 


Assessments
- 
Inventory
Bed, train, ship, drive, bump, when, closet, chase, float, went, closet, beaches, preparing, cattle, inspection, popping, caught, confident, flexible, fortunate, appreciation, pleasure, preparing, squirrel 


Kindergarten 
concepts, vocab, letters, sorting, 
By October - spelling assessment - fan, pet, rug, sit, mop
Font sort - sorting letters in different fonts
Rhyming, concept of word

Word study for letter name
Frequency of consonants b,m,r,s,t,g,n,p,c,h,f,d,l,k,I,w,y,z,v,q(u)
Initial sound pictures/word sort
Blend sort

Word study for within word
Long vowel study
Relate meaning to structure
Past tense sort for Ed 

AgBell Conference 2012 - Demystification: Inspiring Children with Hearing Loss Through Self-Knowledge

Demystification: Inspiring Children with Hearing Loss Through Self-Knowledge

Susan Randich, Ph.D., Nancy Smiley, M.S. CCC SLP, LSLS Cert AVEd, Victoria Carlson-Casaregola, M.A. CCC-SLP, St Joseph Institute for the Deaf, St. Louis, MO

Need to empower children through self awareness
Will find a higher degree of success in life
More important than socioeconomic status or parents

How do you demystification?

Mind Map
Visual of competences, challenges, affinities,

On the map include:
Things I like
I am good at these thing
Things I don't like
Things that help me
Things that are hard for me/things that we need to work on

Pictures for younger kids
Word choice

Step 1 - Form an alliance - no one is perfect
Step 2 - Identify interests and affinities
 Can include sensory issues, strengths and weaknesses
Step 3 - identify strengths, assets, talents,  - avoid something all kids can do
Step 4 - identify weaknesses - 2-3, not reading but sounding out words, make it clear that smart kids have similar issues
Step 5 - How will problems be addressed - therapies, strategies and accommodations 

Dealing with resistance and denials - use humor
Write songs about self

AgBell Conference 2012 - Auditory Skill Development: Basics and Beyond

Auditory Skill Development
Betsy Moog Brooks, M.S., CED, LSLS Cert AVEd, Amy Birath, Au.D., CCC-SPL, FAAA, LSLS Cert. AVEd, The Moog Center for Deaf Education, St. Louis , MO

Increased performance expectation because of early hearing aid fitting (They are getting calls from the hospital)

Speech perception test
- early speech perception test
- 18 months should have 25 words, 1 year post implant should have 100, age 3 - using utterances of 3 and 4 words

*****Auditory memory - ability to repeat back items after presentation - attending, listening, processing, storing and recalling.  May produce benefits for kids with Cis

*****Auditory skill development - clef and wisc tests

Activities - 
- digit span - make one presentation, recall numbers in a row
- word span for unrelated items
- words with different number of syllables

Listening in  Noise - value in practicing.  Auditory training in noise improved performance with CIs.   (Og 2011)
- first in quiet
- multi talker babble
     Auditec.com
      Babel babble (app)
- introduce noise at +10 SNR 
- noise should come from behind the child
- studio 6 audio tool - sound level meters 

Activities
- imitating sentences with a picture context
- following directions imbedded in a sentence 1-4 critical elements
- sentences without context 6-8 word sentence in noise
- riddles in sentences in 3-5 words and each riddle has 3-5 sentences 

I have wings
I cannot fly
I can swim

I am at school
I open and close
People read me

Riddles with 6 or more words

I am made of wood but I might be different colors
I have four legs and sometimes I have two arms
People like to sit on me

Stories with illustrations

AgBell Conference 2012 - What does acoustic accessibility look like?

What does acoustic accessibility look like?

Carol Flexer, PH.D., LSLS Cert AVT, The University of Akron, Kent, Ohio and Jane Madell, PH.D., LSLS Cert. AVT, Private Practice, New York, N.Y.

- Audiologist has the critical role because of brain access
- Everyone in a child's life needs to be involved in communication
- Hearing is access to auditory brain
- Sound must be clear
- Kids need more brain development with more repetition 
- SNR is critical - FM is key
- Repetition in classrooms of what other kids say by teacher
- Any unoccupied class should be no more than 35dbs
- Need single events in classrooms for kids to hear
- What is the important sound going on in the classroom.  Don't have two groups at the same time.
- Dominant tissue in brain is auditory designated tissue.  Must be stimulated
- Earlier is better = brain had plasticity
- Earlier= more practice
- Brain is a probability organizer
- Typical babies are born with 20 weeks auditory development
- 20,000 hours of listening as a basis of reading
- Children with hearing loss need three times the exposure to learn new words and exposure
- Eyes open, technology on
- A child with four hours of aids will need six years to equal one year of an ordinary hearing
- Must have all three -Perfect technology, good program, and parents
- The real ear is the brain
- Must use a pediatric audiologists - All audiologists are not the same
- Children with profound loss at age 5 - 44% are progressive
- 40% of hearing aids were under fit (mp)
- Plan for a progressive loss
- Use FM at home
- Auditory access is not just at home
- Always suspect technology first if something is wrong
- Use Ling6 and 44 phonemes ****** (We heard test with phonemes multiple times)
- Noise noise noise - infants should have FMs
- Turn the music off unless it's adult directed
- Always walk out with a copy of the audiology report
- Behavior tests are more important than objective testing
- Do speech perception testing after mapping
- How does kid hear at 50db, 35db and noise at 5db - thresholds and discrimination each ear and binaural
- If you are not sure if your child is hearing they are not
- CIs should be mapped between 15 to 20 db
- Record specific phoneme errors
- Distance hearing
- Voice quality is an indicator
- Do lings naturally 
- Speech perception qualifiers 
   Excellent 90-100
   Good 80-89
   Fair 70-79
   Poor <70%
- Mild hearing loss places child at 10 times risk

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/

Swimming Lessons with Advanced Bionics Neptunes - A whole new experience

Here's another short video of Lily's swimming lessons.  I thought the video illustrated a couple of cool things.  First she jumps in the pool and her CIs stay on.  Then her CIs are underwater while her teacher is giving her directions and she can still hear.  And finally just that Lily can now "save herself" is fabulous.  

Every day I give thanks to the incredible scientists and engineers that invent this stuff, those who fund it and everyone else in between. Keep it up!!   Life changing!

 

 

4 years ago - Hearing Birthday

Lily just celebrated her four year hearing birthday with a Spider-man coloring book.  Hard to believe.  We couldn't be happier with her progress.  She's more than ready for Kindergarten.  

She's also loving having a little brother and he's pretty pleased with her too.

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!

 

Nebraska Online Speech Therapy for kids with hearing loss

UPDATE for online speech therapy opportunity for Nebraska kids with hearing loss

If you are interested in high quality listening and spoken language online speech therapy, go to www.ihearlearning.org....or call direct to Cheryl Broekelmann at ihear 636.532.2672.  

The cost per session is $35/half hour for families.  There is some money for scholarships and St. Joseph staff are currently working to see if insurance plans will cover the cost.

Internet Therapy Offered to Nebraska Children with Hearing Loss

Just when things are wonderful in the Cochlear Implant world, they get even better for kids in Nebraska.

We received a note today letting us know about new Internet Therapy for Nebraska families who have children with hearing loss from the St. Joseph Institute for the Deaf.   (see our iHear Nov 2011 blog post)

Our beloved Omaha Hearing School, although now formally closed, has reformed as a foundation and has funded this opportunity to provide speech and language therapy services over the internet to children in Nebraska and Western Iowa.   Services will be provided though St. Joeseph's innovative and groundbreaking internet therapy program called iHear.  

“By 
working 
with 
St 
Joseph
 Institute 
for 
the 
Deaf, 
the 
mission 
of 
the 
Omaha 
Hearing 
School
 Foundation 
to
teach
 young 
children 
with 
hearing 
loss 
how 
to 
listen 
and 
speak 
remains 
vibrant,” 
says
 Britt 
Thedinger,
 MD,
 an
 otologist 
and
neurotologist 
and 
a 
board
 member 
of 
the 
Omaha
 Hearing
 School 
Foundation.
 

SJI’s 
ihear 
program
 enables 
children 
with 
a 
range 
of 
hearing 
impairments
—
from
 cochlear 
implant
 recipients
to 
those 
who 
use 
hearing
 aids
—
to 
work 
with
 skilled 
listening 
and 
spoken
 language
 specialists 
via 
the 
secure
internet 
link.
  

Essential 
to 
the 
program’s
 success 
is 
its 
collaborative
 coaching 
model,
 in 
which 
the 
ihear 
staff
 coach
 a
 parent 
or 
educator 
present 
with 
the 
child
 in 
each
 ihear
 session.  
The 
coaches 
are 
then 
able 
to 
reinforce
 the 
exercises 
and 
lessons 
learned 
in 
between
 the 
therapy 
sessions.  
Children
 enrolled
 in
 the 
program
 typically 
are 
scheduled
 for 
two, 
half‐hour
 therapy
 sessions 
per 
week.

Thanks Dr. Britt 
Thedinger for your commitment to Nebraska's kids.  We'll provide more details on this program as we receive them.  

For
 more 
information
 about ihear,
 visit www.ihearlearning.org

 

 

Kids 18m - 36m with Cochlear Implants needed for research study at UW Madison

We've participated in a few Cochlear Implant research studies over the last four years.  Every time has been a fabulous learning experience for us and for Lily.  We've also felt a great deal of satisfaction in helping to advance the study of Cochlear Implants.   

A new research opportunity for kids 18m to 36m with at least one Cochlear Implant is starting at the University of Wisconsin - Madison.  This study looks at how toddlers with cochlear implants hear in noisy environments and localize sounds.  We're in a similar study which we've blogged about before.  

The researchers play games with the kids, take lots of breaks, give prizes (Lily took home 20 bouncy balls and her very first Barbie) and there is enough time to have a bit of fun in Madison.  The researchers go to great lenghts to make it a wonderful experience for the whole family.  

If you have any interest in particpating in this or similar research, I'd encourage you to contact the lab.  Let us know if you have any questions. 

DOWNLOAD UW Cochlear Implant Research Flyer for kids 18m-36m

Babies learn language by lipreading from 6-12 months

Facinating research about normally hearing babies learning language by lipreading.  This type of research supports the early implantation argument for cochlear implants and emphasizes the value of getting in the child's face and talking even when there is minimal hearing.  The research also makes me wonder if this process is similar when hearing comes later or does it move faster when there is more cognitive development.  

"Florida scientists discovered that starting around age 6 months, babies begin shifting from the intent eye gaze of early infancy to studying mouths when people talk to them....They found a dramatic shift in attention: When the speaker used English, the 4-month-olds gazed mostly into her eyes. The 6-month-olds spent equal amounts of time looking at the eyes and the mouth. The 8- and 10-month-olds studied mostly the mouth. At 12 months, attention started shifting back toward the speaker's eyes."

The Auditory Brain - Carol Flexer - Speech transcript - So Good!

We are huge fans of Carol Flexer an Audiologist, professor, book author and presenter on The Auditory Brain: Conversations for Pediatric Audiologists.  This link is to a transcript of a presentation and Q&A Dr Flexer made on AudiologyOnline last spring.  So, so, so good!  Mandatory reading.  

Apps for Kids and Adults with Hearing Loss

Great blog by Tina Childress on Apps for Kids and Adults with Hearing Loss.  These apps can be extremely helpful when teaching kids to talk and listen in ways they love to learn.  

Tina is a bilateral CI user and used to be with Advanced Bionics.  She gave a presentation at Boystown four years ago, which Lily's Dad loved.  She was one of the reasons we chose Advanced Bionics.

AB's Neptune Cochlear Implant Approved - WoooHoooo!!!

To say we're excited about Advanced Bionics's Neptune Cochlear Implant being approved by the FDA is an understatement!!!  Now how fast can Lily get one and get in the bathtub or the pool or the beach or get the next greatest thing - ClearVoice?  Let the the countdown begin. 

Advanced Bionics is thrilled to announce that the NEPTUNE™ sound processor has received FDA approval in the United States. Now AB recipients and candidates have the choice of a Neptune or Harmony sound processor for hearing their best with AB.

World’s First Waterproof Sound Processor
AB continues our history of innovation leadership with Neptune, the first and only SWIMMABLE sound processor in the world. Whether you or your child enjoy taking a dip in the pool on a warm day or bonding at baby bath time, Neptune delivers hearing during those important moments.
 
Industry’s First Freestyle Design
The lightweight Neptune processor features the industry’s first freestyle™ design, allowing you or your child to hear the world with the comfort and beauty of nothing on the ear. Neptune gives you the freedom to choose your wearing style—in your hair, on your arm, under your collar, or in your pocket—without compromising performance. Whether you want to show it off or tuck it away discreetly, the freestyle design lets you wear it just how you like.
 
Usability and Durability
Built Kid Tough™ for rugged use, Neptune is ideal for every age and every lifestyle whether you live in a humid area, love to swim, enjoy sports, connect in the classroom, or travel across the globe. Neptune carries an IP68 rating that offers maximum protection against solid particles and various forms of moisture, which means that you can hear your best in all weather, all sports, and all terrain.
 
Performance
To ensure you hear your best all of the time, Neptune is compatible with the industry’s most advanced hearing technology for the best possible hearing performance, including ClearVoice™, HiRes Fidelity 120™, and AutoSound™.

For more information

Quantity of Communication Matters

We've understood that quantity of communication REALLY matters since the beginning of Lily's hearing journey.  Now one of our favorite researchers, Mary Pat Moeller, has recently given a presentation on just that topic.

According to ASHA member Sophie Ambrose and her co-presenters Mark VanDam and Mary Pat Moeller, all from Boystown in Omaha, the research shows that quantity of communication matters for hard of hearing children. Children whose parents engaged them in more conversations were likely to have stronger language skills than toddlers whose parents engaged them in fewer conversations.

Previous research has indicated that to promote parent–child conversations and to otherwise facilitate the language development of toddlers with hearing loss, parents should use speech that is child-friendly, such as short, simple sentences, and talk about things of interest to the child.

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. 

CI Video Story: Implanted at 20 months and now a teen

A beautiful documentary on the life of Skye Carter.  She was first implanted as a child (20 months) and now is in her teen years. 

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.

 

Videos: Lily's language development 9-48 months

Lily was a participant in a longitudinal study in the Language Development Lab at Boystown National Research Hospital, directed by Mary Pat Moeller, Ph.D. The visits occurred between 9 months and 48 months old. Lily received bilateral Advanced Bionics cochlear implants at 10 months old.

9 months old

 

12 months old

 

15 months old

 

18 months old

 

21 months old - (21 month report)  (22.5 month report)

 

24 months old - (24 month report)  (25.5 month report)

 

30 months old - (30 month report)  (32 month report)  (34 month report)

 

36 months old - Receptive language test  (36-38 month report)

 

42 months old - Language test

 

42 months old - Sounds

 

48 months old - Final Language Test

 

 

Apps - An Emerging Tool for SLPs

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

Gifts for Kids with CIs

We were asked recently about what to give a family as a gift after their child is newly implanted. Here's a quick list of ideas:

• Hanna Andersson Hats
• Tune Up CD from Advanced Bionics
• Make a Listening Bag
• LIng Sounds Iphone app
• Toupee tape (depending on their processor)
• Any sort of music toys
• Ag Bell Membership
• Carole Flexer/Elizabeth Cole Book listed on blog under recommended readings

Parents Magazine Covers Cochlear Implants

Great article in the most recent Parents magazine discussing kids and cochlear implants.  

The author, Debbie Waldman, did a great job capturing a positive story about the very engaged Bennett family and their 4-year old daughter.  

It is a real story about a little girl who receives Cochlear Implants and now talks like a champ in a mainstream environment.  This story is sure to educate all families about hearing loss and give those families hope who find themselves on a hearing loss journey.  

It also avoids the old tired story that is often covered in the media which says deaf people hate cochlear implants.  While there certainly are haters, this attitude is rapidly changing.  

Ironically, Lily was going to be the featured kid in this article.  

We spoke with the author at length, multiple times, over two years ago.  It seemed that because Lily was implanted at 10 months (before the 1 year FDA guideline), Parents Magazine editors were worried about running her story.  

Alas...Cochlear Implant implantation before one year is fairly standard and the research continues to show that earlier is better.   While we're disappointed Lily's story wasn't told, we are thrilled that this article ran.  It's a story that should be told every year!!   

Thanks Parents magazine for covering an important issue that impacts thousands of families everyday.  

 

 

Therapy idea: Using old cell phones

Great article on using old cell phones to help kids practice talking and listening.  

From articulation to turn taking, from tone to giving details, here's a new life for an old broken cell phone.  

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.

 

Deaf Education Evolving with Implants

This article describes the impact of cochlear implants on teaching methods for kids who have hearing loss.  Like the Omaha Hearing School, the article provides a good description of the Clarke School for Hearing and Speech, an oral preschool.  While teaching methods are not one-size-fits-all, when children have access to sound at a very young age, an Oral approach maximizes that opportunity for listening and spoken language learning.

Lily's 3rd Hearing Birthday

We had so much to celebrate, we decided to journey to San Francisco for the party. Not only was it our anniversary, but it was also Lily's third hearing birthday.  

It's hard to believe three years ago as her Cochlear Implants were activated, we were hoping to see a response, any response. Fast forward to today. Life is so normal, actually better than normal.  Lily says amazing things like "Can you flare your nostrils" and "we are the same height."  

The only thing that seems different is she beeps at the end of the day when her batteries run down (I suppose we all beep in one form or the other when our batteries die). We are thankful everyday for the miracle of her Cochlear Implants. No one even asks us what they are anymore, but we love to talk about them if they do.

Lily did try and explain to a stranger on the ferry that it was her "hearing birthday and that she has CIs that are stuck to her head with magnets." The stranger just smiled, having no idea what she was talking about.  I just smiled, knowing very well what she was talking about. Lily's Cochlear Implants have allowed her to live fully, without missing a beat, in the hearing world. 

Lily is certainly maturing into a little, or as she sees it, BIG girl. You'll notice the high-flying trampoline that she wanted to do "for her birthday." Absolutely no fear. She flew up in the air about 20 feet as she was strapped to a harness, over and over again.

We also got to see our dear friends in Napa and SF. Thanks for all the hospitality.

One of the best ways to teach new language is through experiences and San Francisco offered endless opportunities for this.  From the great food at Fang's to the various forms of transportation (no a ferry boat does not have wings), from the children's museums to the public art work, we loved it all.  

 

Omaha Hearing School....How do I love thee?

This weekend we attended a fabulous fundraiser for the Omaha Hearing School.  It was at the top of the Midtown Crossing Condos overlooking the city.  A perfect space, with fabulous food from local restaurants, a giant deck with temperatures like bath water and a packed room of supporters.  

At the end of the evening, the Director asked if we would address the crowd and tell Lily's story.  

Talking about Lily comes easy, as did my gratitude and thanks for all the support we've received.  Since Lily was two months old, we've worked weekly with the Omaha Hearing School.  They've shaped the way we teach Lily to talk and listen, with remarkable results.  They've provided unending support for our family.  They've set our goals higher than we ever thought possible.  

After Lily turned three, driving to Omaha for the mainstream preschool twice a week has been a major commitment. However, we sleep well knowing Lily is in an incredibly language-rich environment with great acoustics, and teachers who are highly skilled and committed to maximizing the technology.   The Omaha Hearing School staff is extremely flexible to Lily's needs and they take parent input seriously and act upon it. Dreamy, I know!

After we spoke at the event, a Omaha Hearing School graduate spoke, who is now age 26.  She is a gorgeous young woman who graduated from college at the top of her class and is a successful CPA.  Her family still generously supports the school and feels they can never "Repay" the school for how they have helped their daughter. Her Dad gave us a squeeze and through a few tears said he agreed with everything we said.   Pretty special.  

To any of our readers who want to invest in a organization that changes lives, here's your chance.  The Omaha Hearing School is an incredible 501(c)3 which is making a major difference in the lives of kids who have hearing loss in Nebraska and the surrounding area.  We hope you will consider a contribution.   

All Preschool Programs are Not Created Equal

Good article on Hearing Families called All Preschool Programs are Not Created Equal.  The article examines a study of 8-to-10 year old children with hearing loss who were all in mainstream elementary schools and had always used oral language.

When they compared the outcomes to a comparison group of kids with normal hearing, they found that half of the kids with hearing loss were far behind normal hearing children their own age. But the other half, showed age-appropriate skills, despite their hearing loss.  When they tried to understand the split in the hearing loss group, they saw that all of the kids on age level attended preschool programs that were either specifically for children with hearing loss or private preschools with low teacher-student ratios. The kids whose skills fell behind the kids with normal hearing, all attended special education preschool programs that were not specifically for hearing loss, but had kids with many different kind of disabilities all together.

Whispering in Lily's ear

Sometimes Lily's little friends whisper in her ear.  If they whisper loud enough Lily may hear them with her CI microphone (Lily is now wearing the BWP which has a microphone over the magnet).  If Lily was wearing her Advanced Bionics Harmony with a T-mic, she could definitely hear the whispers.  Lily's really good friends know to whisper right into the headpiece microphone.  

Star Jones apparently forgot Marlee Matlin was Deaf on Celebrity Apprentice and tried to whisper in her ear.  Marlee wears no assistive listening device, but she does have an interpreter - who responded for Marlee - "I'm Deaf.  Star, I can't hear you." 

Flintstones Hearing Loss Video

Fascinating Flintstones video demonstrating how various hearing loss sounds from a Mild loss to a Severe loss.  

1-Sided hearing loss lowers language skills

Interesting article on the impact that even a unilateral hearing loss can have on kids.

“Now our study has shown that, on average, children with hearing loss in one ear have poorer oral language scores than children with hearing in both ears,” she says....“Parents, educators and pediatricians shouldn’t assume that having hearing in one ear means children won’t need additional assistance.”