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.  

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.

Talking to premature babies

Facinating new study about talking to premature babies by a team at Women & Infants Hospital of Rhode Island and The Warren Alpert Medical School of Brown University.

Researchers found that "Premature babies benefit from being exposed to adult talk as early as possible."  Preterm infants exposed to higher word counts at 32 and 36 weeks gestation have higher cognitive and language scores at seven and 18 months corrected age.

It makes wonder why families still have to fight for early implantation.

 

The greatest museum ever! Exploratorium - San Francisco

We journeyed to San Francisco for a quick trip in December.   While we've been to San Francisco a number of times before, we had never been to the Exploritorium.  It's been open for 50 years, but just recently reopened on Pier 15.  WOW!  

I thought it was the best museum that we'd ever been to. That includes children's museums, science museums, and Smithsonian's all over the world.  The creators captured the balance perfectly between engagement and education, art and science.  There was even a large exhibit on Harold Edgerton, a Nebraska native who invented the strobe light.   Years and years of school science fair experiments in front of us.  We finished the day by riding a cable car ride which Lily insisted we try.  

Lily's Card Shop

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

 

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.

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.

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. :)  

Babies hear their Moms before birth

New research reinforces what many people had believed—babies hear what their moms say and their brains recognize these words after birth. 

The researchers' conclusion was that “The better we know how the fetus’ brain works, the more we’ll know [about] early development of language.   If we know better how language develops very early, we may one day be able to develop very early interventions [for babies with abnormal development].”

Whenever I read research like this it reminds me how critical early intervention is for children with hearing loss.  Not only did Lily miss the first ten months of hearing after she was born, but likely she missed another six or seven months of sound as a fetus.  The implications of that amount of language missed is hard to comprehend. 

You'd never know it today, but it's important for us never to forget. 

Auditory Brain Stem Implants for children in the US

If a Cochlear Implant doesn't work for a child with no auditory nerve, there may be a new option in the US. Check out this recent story about a 3 year old boy implanted with an Auditory Brain Stem Implant.  

This type of implant has been used in Italy for three or four years now, but this is a first Brain Stem implant for a child in the US.  So exciting.  Researchers are not sure if it will give the child full access to language but it certainly gives the child sound.  Great video demonstrates the child's reaction to sound.  

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. 

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!

Research about timing of pediatric cochlear implantation

Here are three studies making the case for early implantation.  Lily was implanted at 10 months of age.  If we did it again, we'd try and get her implanted much earlier.  

Signing in Babies Does Not Accelerate Language Development

Interesting Article about Signing with babies. This topic is always a big decision for families of newly identified kids with hearing loss.  

Researchers from the University of Hertfordshire have found no evidence to support claims that using baby signing with babies helps to accelerate their language development.

Dr Liz Kirk said: "Although babies learnt the gestures and used them to communicate long before they started talking, they did not learn the associated words any quicker than the non-gesturing babies, nor did they did they show enhanced language development."

However, of significant interest, the study's findings did reveal that mothers who gestured with their babies were more responsive to their babies' non-verbal clues and encouraged them to think of their baby as an individual with a mind. This has great potential in clinical situations where early gestures from babies or young children may provide timely interventions where there is risk of language delay or impairment.

 

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

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.   

 

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]

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.  

Observation Report of Lily at Preschool

The following is an interesting observation report of Lily at preschool made by her Hearing Resource teacher.

"I arrived just as they were cleaning up.  Lily helped without any reminders.  Then they met as a group. One of the students has a birthday coming up, so they discussed that.  The kids were shouting out--I'm 3, I'm 4 etc.  Lily is saying I'm 6, I'm 6.  I'm trying to figure out what's going on when she looks at the student beside her and says, "April Fools."  Then they went outside to listen to a book, Twas the night before Easter.   Lily participated when her teacher paused-nonverbally asking for a group response.    Next was the egg hunt.  The teacher had told them that some eggs are easy to see and some are challenging, so decide if you want to find the easy ones or the hard ones.  Well, I guess Lily wanted the hard ones, because she passed a lot of very visible ones and kept looking in some very challenging places.  After a little bit, the kids who had found their one egg were taking them into their backpack.  I guess this motivated Lily to find anything she could, because she immediately picked one up.  She followed all instructions/directions, interacted with peers, and participated actively."

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

New Baby Bodie Graeme

We are excited to introduce our son Bodie Graeme.  He's a perfect little sweet pickle (as Lily calls him) and we couldn't be more thrilled.  The details...

What about the Name?

Bodie is a name we love.  It's happy, sounds good with Lily and doesn't come with a lot of stereotypes or rhyming words.  It's also not in the Top 10 most popular names.   Of course when we picked LIly, the name was not very popular and now it's likely in the Top 20.  We were going to call him Bodin, with Bodie for short, but why not just go with the nickname.  Bodin can be used for the serious situations.

Graeme (sounds like Graham) is a nod to Graeme Clark, one of the first inventors of the multi-channel cochlear implant, and Alexander Graham Bell.  Two people who changed the course of history for our family.  

In my reading about Professor Graeme Clark of Australia, they said he was called Crazy Clark, because his goal since the 60s was to help deaf people hear.  His colleagues doubted him and thought the goal was unreachable.  This story is a good daily reminder to me to believe and reach for the impossible. Never be detered if that is your goal and always say YES, even though it's much easier to say NO.  

I hope this name will give that determination to Bodie.  I know Lily's already got it.  Yesterday she was determined to go outside in 50 MPH winds and snow and fly her kite.  I said NO, it won't work.  She did it anyway, and wouldn't you know...the kite flew...twice.

Birth Story

The Birth Story is quite uneventful, in a positive way, compared to Lily's birth.  With a scheduled C-Section it was peaceful, planned, no drama, no NICU, and no tears.  Well, maybe a few tears of joy.  Everything was calm and quick.   Loved it.  

When Lily first met her new brother, she came in, climbed up on a chair to see him in the bassinet and introduced herself.  "Hi Bodie, I'm your big sister Lily."  So sweet.

Having another child

For years we never thought of having another child, because we didn't want to take our focus off helping LIly succeed.  At some point, as Lily's abilities have skyrocketed, we felt that adding another child to our family would only enrich our experience and Lily's life.  Hearing or not, we were prepared to take the hearing journey again, if need be, and we would meet every need of this child as we have for Lily.  

Nebraska's Newborn Hearing Screen

In Nebraska, the Newborn Hearing Screen is a state mandate (with no enforcement).  Today, approximately 99% of all babies born in Nebraska are given the hearing screen, with about 50 babies annually having some sort of hearing loss.  

About 50% of the hospitals, including ours, are using ABRs for their initial screens.  ABRs have a much lower refer rate (4%-5%) than a tradition OAE (8%-9%).  A refer rate means "failing" the test.  Failing could be for other reasons, besides hearing loss, like fluid in the ears.  A reduced referal rate means a lot fewer parents have to go through the emotional journey of understanding if their baby can hear, reduced cost and reduced use of limited resources.  Bodie passed.  

Is there a difference?

With a newborn baby, it's extremely difficult to tell if the baby is hearing.  Especially for first time parents, if you are not watching for a reaction to sound, you just might miss it.   We see Bodie and LIly with very similar baby behavior, but you can see that Bodie quiets to the Shhhhh sound and reacts to many noises.  

I have noticed that we've gotten used to making lots of noise while Lily sleeps.  Unfortunately or fortunately, gone are the days when we could turn up the TV or music, bang around, cough or vacuum. Restful sleep is a definite advantage for LIly, espcially when Bodie is wide awake in the middle of the night.  

Language

I am very interested to watch Bodie's language develop.  We've been trained by some of the best language pros in the country, and talking everyday all day and creating good listening environments is what we do.

A few Lily quotes

"It's great to be a big sister. "  And this morning, "It's hard to be a big sister.  I don't get any attention."  

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.

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. 

 

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

 

 

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.  

Mild hearing loss = Brain Atrophy in Older Adults = Early Intervention

Interesting article in Science Daily

A new study by researchers from the Perelman School of Medicine at the University of Pennsylvania shows that declines in hearing ability may accelerate gray mater atrophy in auditory areas of the brain and increase the listening effort necessary for older adults to successfully comprehend speech.

What Parents Want from Physicians

Excellent article on "What Parents Want from Physicians" after their child has been identified with hearing loss.  

UW Madison's Binaural Hearing and Speech Lab - Research with CI kids

We spent the last few days at the University of Wisconsin's Binaural Hearing and Speech Lab.  This was our second visit and it's always eye-opening to understand how Lily is hearing. 

Over 2.5 days, Lily participated in a variety of hearing games including:  identifying words and sounds in noise and quiet from various directions, language comprehension, speech perception and production, and non-verbal IQ.  These games were broken up with lots of breaks, stickers, contests and prizes which were real drivers for Lily. 

The researchers that performed the tests were wonderful as well.  They were all  women working as professors at the University or on their undergrad, graduate and post doc degrees in speech or audiology.  And all were focused on careers with CI kids.  Wonderful to see the future of this emerging industry.  Thanks to Shelly, Christie, Kristie, Shelby, Yi, Sara and Sara for all your great work.   

Our observations of the research are that nosie significantly impacts kids' hearing, localization is hard for CI kids and Lily is doing fabulous with her speech, language and listening.  Lily's actual results will come in a month or so.

Here are some pictures of our experience. We also made stops at the Madison Children's Museum, the free Madison Zoo and State Street (downtown hotspots). 

For every family that can make a trip to participate in this research, we highly recommend it.  Check out the UW website for more information. 

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. 

Nebraska's Early Hearing Detection and Intervention Stats

I recently started serving on Nebraska's Early Hearing Detection and Intervention Advisory Committee. The staff just released the 2010 Annual Report starting on page 29.    

Interesting Summary

1. All the current birthing hospitals in Nebraska were conducting newborn hearing screening in 2010. All but one had conducted the hearing screenings during the birth admission. 
2. The benchmark of 95% of newborns having a hearing screening during birth admission by December 1, 2003 established by Neb. Rev. Stat. §71-4742 continues to be met. In 2010, birthing hospitals reported screening the hearing of 99% of newborns during birth admission or prior to discharge home for those babies who were transferred to another hospital.
3. The overall “refer” rate during 2010 for initial hearing screening during birth admission was 4.4%.
4. In 2010, follow-up hearing screenings or audiologic evaluations were initiated within one month of birth for 67.1% of those newborns for which follow-up activities were provided.
5. The average age at the time of the initiation of follow-up hearing screening or diagnostic evaluation was 32.0 days.
6. For the 51 infants identified with a permanent hearing loss, including congenital, later-onset and progressive hearing loss, the average age at confirmation of hearing loss was 125.2 days.
7. There are 350 babies born in 2010 whose hearing was not objectively established and there are 109 who expired before receiving or completing a hearing screening.
8. The incidence of Permanent Congenital Hearing Loss identified and reported to NE- EHDI Program (1.9 per thousand screened in 2010) is within the anticipated range of one to three per thousand.
9. Over 70% of the infants with a permanent congenital hearing loss were verified for early intervention and special education services.

 

Hearing Care in Developing Countries

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

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"