Life is Bliss - Lily's Cochlear Implant Journey

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!

 

 

ClearVoice and T-Comm - Advanced Bionics Cochlear Implant Innovations

ClearVoice

Last week Lily received ClearVoice, Advanced Bionics' new sound processing innovation that enhances speech understanding. ClearVoice is also the industry's only sound processing technology that has been clinically proven to deliver superior hearing performance in noise.  

Within seconds of having ClearVoice activated, LIly tested 77% in noise and 100% without noise.  This test was done with sentences that were pretty complicated.  As the test progressed, it seemed her hearing improved.  Lily had a test in noise a year ago and averaged somewhere between 50-70% accurate.  We return in six weeks to do a comparison test.  During this visit we also had her maps slightly adjusted for some of the higher pitches. We like her to hear around 20db or less on all pitches.  

Lily's comments about ClearVoice thus far have been that the car seems quieter and the conversations are easier to hear.  She's also been picking up the words to songs more easily.  We've been using ClearVoice on the Medium setting and are now waiting for a noisy activity to try the high setting.  So very very cool and it was free (except for the cost of our visit of course).  I've had a number of people with "ordinary hearing" ask if they can use ClearVoice. 

T-Comm

The FDA on April 2, 2012 approved the "T-Comm"  T-Mic /Telecoil for Advanced Bionics Neptune CI processor.   See Advanced Bionics website under T-Comm Accessory - Coming to the U.S and Canada in Summer 2012 for more information.  There is even a picture.  Benefits include: 

• Lightweight accessory—compatible with the Neptune™ sound processor 
• Delivers the natural microphone placement of the patented T-Mic™ 
• Offers easy connectivity with the T-Mic that lets you wirelessly use earbuds, headphones, cell phones, and other popular audio devices 
• Features a built-in T-coil, which picks up sound if you have a compatible telephone, neckloop, or other accessory
• Availability in the United States and Canada is planned for summer 2012 at a special introductory offer

 

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.

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.

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.

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.”

Pediatric Audiology Free Online Conference - March 14-18

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

MIT Scientist Captures Son's First 90,000 Hours and First Words

Incredible article and real sound illustration in Fast Company about how sounds develop into words for babies.   Mind blowing!!

Auditory Verbal/Auditory Oral - Why being language focused is critical

This is an excellent blog, written by two Moms of kids with Cochlear Implants.   They advocate for Auditory Verbal Therapy (AVT) and early implantation of Cochlear Implants.   Two things I believe in strongly. 

The blog references interesting articles on How Babies Process Langague and Baby Talk which reinforce the importance of early langague input. 

Another recent early langague article with a twist is called Why Rich Parents Don't Matter.  It speculates that:

When it came to the mental ability of 10-month-olds, the home environment was the key variable, across every socioeconomic class. But results for the 2-year-olds were dramatically different. In children from poorer households, the choices of parents still mattered. In fact, the researchers estimated that the home environment accounted for approximately 80% of the individual variance in mental ability among poor 2-year-olds. The effect of genetics was negligible.

The opposite pattern appeared in 2-year-olds from wealthy households. For these kids, genetics primarily determined performance, accounting for nearly 50% of all variation in mental ability. (The scientists made this conclusion based on the fact that identical twins performed much more similarly than fraternal twins.) The home environment was a distant second. For parents, the correlation appears to be clear: As wealth increases, the choices of adults play a much smaller role in determining the mental ability of their children.

In Nebraska, it is critical that we increase the number of certified AVT and AVEd (Auditory Oral) teachers, especially working in early intervention (birth to five).  This should be a top policy priority.  With advancements in technology, it is vitally important that we continue to develop these skilled AVT/AVED teachers and reinforce auditory communication teaching strategies at every level. 

Music - Resources and Innovation

One of the most frequent inquiries we get to this blog are those from Music Therapists in all corners of the world.  Most of the emails ask for resource ideas to work with kids with Cochlear Implants.  I think this is a growing indication of the language and listening value and benefit that kids can receive from good music therapy.

One of the best music therapy resource is Christine Barton - Check out her 2010 publcation of Music, Spoken Language, and Children with Hearing Loss: Using Music to Develop Spoken Language, as well as all her other publications.  Also Advanced Bionic's Listening Room is an excellent resource for interactive and uniquely designed practice activities for hearing rehabilitation. 

Also check out this interesting story about a music performance designed specifically for Cochlear Implant users.  

 

AG Bell Scholarships

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

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

Lena System Results - 34,627 words

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

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

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

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

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

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

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

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

Dancing, Speaking French and the FM

Lily has taken up dance and she loves it.  She gets to dress up, practice her moves and speak french. 

However, the dancing room is a very difficult listening situation. There are wood floors, cement walls, a big mirror, loud music, etc.  There is nothing that helps with poor acoustics, except for the FM. 

With the FM, the teacher is talking directly to Lily and she is following closer than many of the other normally hearing children, likely because they can't hear the teacher. With the 50/50 split Lily can still hear the music, but her teacher's voice is 50% of the signal she is receiving.   Pretty Cool!!

Have I mentioned my campaign for better acoustics?  

 

Learning To Read

Lily has always loved books and reading. Here's a quick video of her taking a stab at reading herself. She's getting a good start for a 3-year-old. When Lily was first diagnosed I would have thought this impossible. Don't doubt the power of great early intervention, spectacular AB technology, tons of hard work, and a lot of love along the way.

 

Carving Pumpkins = Talking Lily VIDEO

Carving a pumpkin seemed like a perfect time to play around with the video camera.  Our thought was to ask a range of questions to highlight the depth and clarity of Lily's language.   The pumpkin didn't turn out to be too scary, but it did get bilateral BWP Cochlear Implants.   

 

Music Therapy Research - CI Rehab for Toddlers

We receive emails and comments from people all over the world on our blog.  The most common topic people have thoughts or questions about is Music Therapy. 

A few weeks ago we received a note from Felicia, a music therapist from Australia, who is interested in working with children who are deaf and hard of hearing.

She found this great article supporting our argument for including Music Therapy in rehabilitation. The article discusses that a Music Therapist in Israel, working with children with CIs, found that spontaneous communication was more frequent and prolonged when music was used.  This is a rapidly growing field of study and one which should be immediately implemented in rehabilitation strategies.  

We didn't know what to do with Lily and music.  Our approach was a gradual one.  According to this research, that seems to be the right approach.   Now Lily demands music in the car, in the house and pretty much anytime she can get someone to turn it on.  She's had a music therapist, been to Kindermusik and now she has music in preschool.  She sings, she twirls, she makes up songs, she picks up words and says "don't turn it off yet.  I want to listen to the whole song."  

Music is critically important to language learning. 

Lily's Public School Teachers

Here are some of Lily's favorite teachers Faye and Carole. They have both been with our public school for more than 25 years.   Faye (left), a hearing resource teacher, has worked with Lily since she was two months old, and Carole, an SLP, has worked with Lily since she was nine months old.  Both of them were kind enough to come visit Lily's new Nature Center Preschool and help her teachers with different tips and tricks.

They will both periodically be monitoring Lily in her mainstream preschool to make sure she is hearing (with her new Bilateral Phonak FMs - So excited about this technology - WOOOHOOO), engaging with her classmates and meeting her IEP goals.

Lily was tested in the sound booth with and without her new Phonak FMs in noise.  Without an FM, Lily heard 50%-70% of what was said when the noise level was equal to the speakers voice.  When she had her bilateral FMs on, Lily heard 100% of what was said.  Incredible!!!!!

It is such a nice option to be able to put Lily in a mainstream classroom (in addition to her mainstream class at Omaha Hearing School) and still have the support of our public school.  With the proper supports upfront, these kids with hearing loss are reaching new heights and will be able to be mainstreamed earlier with minimal support.

IEP - 3 Years Old - Goals and Objectives

Lily's first IEP, at three years old, includes the following goals and objectives.

Goal 1

When asked a question or given verbal directions, Lily will demonstrate an increase in her auditory and receptive language skills by mastering the following benchmarks, improving from a baseline of 25% to 80%, measured by observation, data collection and language sampling collected quarterly.

Objectives

1. Perform 3-4 step directions correctly that demonstrate understanding of at least 5 phrases each, probing for:  Order or sequence, Words of description, Comparatives and superlatives, Adverbs of time, Regular and irregular past tense verbs, Prepositions showing place, and Conjunctions
2. Perform a requested action by correctly identifying the one word, phrase, sentence, song/fingerplay which matches the requested 4-8 word stimulus item in 10 opportunities
3. Provide an appropriate verbal response to 10 each of "Wh" questions (who, what if, where, why, when, how) when asked a question about a story, recent or past experience or about adult instructions.

Goal 2

Given a verbal model, Lily will imitate and produce phrases and sentences using correct syntax and grammatical structures, listed in the benchmarks that follow. Progress on these benchmarks will be measured in four quarterly language samplings, showing improvement from a baseline of 25% to 100%

Objectives

Correct use of 8 auxiliaries and/or copulas, 8 words showing negation, 8 irregular past tense verbs, 5 conjunctions, 8 prepositional phrases, 5 indefinite pronouns, 5 adverbs of time, 5 comparatives or superlatives, 8 descriptive adjectives with appropriate nouns, and 5 nouns accompanied by 2 descriptive adjectives.  

Goal 3

Given visual/verbal cues, Lily will improve her speech production of targeted sounds /v/, /k/, /g/, initial /l/, /l/ blends from a baseline of 0% accuracy in any context to 60% accuracy in imitation/consonant-vowel combinations/vowel/consonant combinations and single worlds as measured by the SLP Articulation Data Collection Chart.  

Objectives

1. Use of listening activities to achieve correct production of targeted speech sounds
2. Auditory discrimination of paired words contrasting error vs correct sound productions
3. Auditory discrimination of correct/incorrect targeted sound productions in verbal models
4. Auditory discrimination of correct/incorrect targeted sound productions in her own speech

IEPs and a LIttle Reflection

We are knee deep in IEP (Individualized Education Plan)  planning, our first one since Lily turned three.  An IEP lays out what Lily's goals and objectives will be for the next year and the services that will be provided to meet those goals.  It also describes any technology the school will provide to help her meet those goals. 

Last week we received all of Lily's test scores from our public school.  To say she did super fabulous, would about capture the results. 

Are there areas that still could use our focus?  Sure.  Has she built a foundation on which to grow and thrive for the future. Yes!  Do I wish I could have seen this day when I spent months crying about Lily's future.  Yes.  Did I realize this moment would come when she was three?  No. 

Do I remember vividly our "CI expectation counseling appointment" when they asked us our goals for Lily and we said mainstreamed by kindergarten, secretly hoping that it would be much earlier. 

Then the counselor said "Well...that is the Gold Standard" and implied that it was not very likely.  Then she showed us a scale that had "All Signing" on one side and "All Auditory Learner" on the other, and implied that the chance for us to have an all auditory learner was slim.  

So to her I say meet Lily, an all Auditory Learner who is busting nearly every talking and listening curve.  As Carol Flexer says, "It's all about the brain."  Give these kids good access to sound and they should thrive.  

Don't tell parents to set your expectations low.  Did I say that loud enough.  Don't tell parents to set your expectations low.   Tell them to set their expectations high.  It's better to shoot for the moon and miss, than to shoot for the lamppost and hit it.  However,  we also need to tell parents 'this is what it is going to take (eg 30,000 words a day)" and "here are all the tools to help your kid achieve the unachievable."  

AG Bell Adventure

A few weeks ago we were fortunate to attend the Alexander Graham Bell Association Conference in Orlando.  It was fantastic.  We were surrounded with kids and adults with Cochlear Implants and hearing aids and the teachers and audiologists who support them.  

We attended fabulous educational sessions, like stem cell research, working memory strategies and LENA research studies, as well as volunteered as Bionic Ear Association Mentors on behalf of our Cochlear Implant manufacturer Advanced Bionics. 

In Advanced Bionics' booth, we were able to talk to families and professionals about our hearing journey.  We were able to give back and talk face-to-face about something we feel so passionate about.  We were also able to dream about what will be available for Lily in the future. 

While this was only the second time that we attended this conference, it seemed like we saw many old friends.   There were many returning families with young children like Lily, as well as teachers from the Moog center, staff from AB, thought leaders and researchers like Carol Flexer and icons in the AG Bell/Oral world.  

We also saw Lee Woodfruff, wife of the ABC news anchor Bob Woodruff who suffered a Traumatic Brain Injury when he was covering the war in Iraq.  Lee didn't however talk about her husband at this event. Rather, she focused on her daughter who has a hearing loss.  She told us the story of her daughter's diagnosis to receiving hearing aids, all the therapy and stress in between, and how her daughter is doing today.  It was such a similar story to so many in the crowd, that I think most of the 1500+ people in attendance were in tears.   It was quite moving.

Her book, Perfectly Imperfect (see it posted in the left column) is a great read full of stories and journeys of a wife and mother facing dozens of challenges along the way. 

We returned home feeling rejuvenated and excited about continuing with Lily's hearing journey. More posts to come with details of the sessions and our fun time at Disney. 

 

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

Here's part two of my mini-notes.

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

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

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

 

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

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

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Post Mother's Day Post

I read the following last year on Cochlear Implant Online, and loved it.   Elizabeth, the writer, is a young grad student who has the insight and sensitivity of an old soul.  She will be a terrific SLP or hearing resource professional very soon. 

Mother's Day was very special this year.  Lily's Dad and I think about how lucky we are daily.    (My personal edits below are in italics)

May 8th, 2010 by Elizabeth

HERE’S TO THE MOMS

Here’s to the Moms who may not have “signed up” to parent a deaf or hard of hearing child, but do so anyway with grace and love.

Here’s to the Moms who narrate every second of every day, not caring what others may think.

Here’s to the Moms who put miles on their cars driving back and forth to countless therapy sessions, doctor’s appointments, hearing aid fittings, cochlear implant mappings, and more.

Here’s to the Moms who work hard to be their child’s best advocate and primary language role model.

Here’s to the Moms who have had to learn a new language too fast full of Auditory Verbal/Auditory Oral terms and audiological jargon.

Here’s to the Moms who face the “experts” and fight for their child’s best interest in IFSP/IEP meetings and in those meetings where you are just trying to make the system better. 

Here’s to the Moms who can wrestle two CIs or HAs onto a squirming toddler… and replace it 20-40 times each day, even in the car, without loosing their cool.

Here’s to the Moms who can cook dinner, answer the phone, and change a CI/HA battery without breaking a sweat.

Here’s to the Moms who constantly have to explain their child’s “equipment” and answer the question are those forever?

Here’s to the Moms who have ever felt the pain of having a child who is “different”.

Here’s to the Moms who never take a single word for granted.

Here’s to the Moms who never fail to astound me with their capacity to persevere… and to love.

HAPPY MOTHERS DAY!!!
Originally posted May 9, 2009

Managing Life's Stresses

The last month or so I've been under a great deal of stress.  Trying to balance my responsibilities, planning for the future, and having a family with the stomach flu.   Just lots on my plate. 

One stress/anxiety I didn't realize I had continued to carry is the input/output of Lily's daily language.   It's something I put on myself, but having that responsibility/stress has paid off in dividends thus far.  So I will continue with that focus.    

Feeling the stress climax to a place that I hate to be, reminded me of the same feeling I had for the entire first 12 months of Lily's life.  For me, it was a stress that was made up of the unknown, the never ending search for information and the numerous decisions we had to make so early in a little baby's life.  

I don't miss those days, but feel a little robbed of the normal.  Today, I feel we've made it to normal, although we still do 3-4 hours of formal therapy a week and we'll always be carrying around batteries. It's a small price to pay for the ability to talk and listen...well. 

Want to be Inspired?

My goals and expectations for Lily keep getting higher and higher. Do Lily's Dad and I speak another language fluently?  No.  But check this video out.  It is of a young boy with bilateral CIs, who is speaking English, very well, as his second language.  His first language is German.  He also speaks a little French. Why not?  So should Lily learn Spanish or Chinese?  Decisions, Decisions, Decisions.... 

Stimulus Package - Jobs in NE - AVT, AO, SLP/HI

When we started our hearing journey, we were told that we needed to pick an approach to teaching Lily to talk and listen, immediately.  We soon learned that this was a hotly debated subject, with lots of people having lots of differing opinions.   For us, it came down to three approaches:  Auditory Oral, Auditory Verbal or Total Communication.   There are other options, but these three seemed liked the top contenders for a kid who would have bilateral CIs at 10-months old and has no other complicating factors. 

We quickly learned In our town and really state, most of the families and the school system were using the Total Communication method.   This means speaking and signing together.  The Auditory Verbal approach was not even an option, because in Nebraska, there are no certified AV Therapists (AVTs).  In fact, there is not an AVT for hundreds of miles and most professionals have very little experience with the approach. 

However, as luck would have it, we finally connected with the Auditory Oral approach through the Omaha Hearing School.  And that is what has been perfect for us.  After extensive research, we knew wanted an Oral Approach, but at the time (16 months ago) we had no idea how we were going to make that happen or figure out what an ORAL APPROACH actually meant. 

Over the past year, even our public school has moved to a much stronger auditory approach and will hopefully continue to move in that direction.  To me the AO approach seems very close to the AV approach, just some minor differences in where therapy is done and how strict you enforce the looking for other clues as to what was said like lipreading.  Even this seems to depend on the AVT. 

What is missing in all of this are lots of experienced professionals with training and certifications in AO and AVT.  We need more.  And this doesn't begin to address the huge need of of highly qualified SLPs with experience working with kids with hearing impairments and specifically cochlear implants.   Come to Nebraska.  It is a land of unmet need and lots of opportunity to work with world-class programs and world-class kids like Lily. 

LENA - Every Word Counts

Last week during Karen's visit she mentioned that the Omaha Hearing School had just purchased a new speech language measurement system called LENA. It's a new technology that measures and analyzes the amount of language a child receives in their everyday environment. Basically the baby wears a tiny speech listening device that measures sound and then connects to a computer to analyze the conversations that take place throughout the day.

We're excited to check it out. In the meantime, for more info about it, check out LENA's website that offers links to research about language development, sample videos and activities, and some parent testimonials.

Speech Sounds - The Basics

Cochlear has a great resource that provides a rich overview of all the speech sounds, along with activities and examples that can be used everyday. Well worth checking out - Speech Sounds for Parents and Professionals.

Auditory Brain Development

Great PowerPoint on Auditory Brain Development: A Paradigm Shift for Children Who are Deaf or Hard of Hearing by Carol Flexer.  She is a AVT, author, professor and speaks all over the world on developing listening and talking in children with hearing loss.  See her book on the left side of the blog. 

Her main ideas include:

- Hearing is a first-order event for the development of spoken communication and literacy skills.
- Anytime the word “hearing”is used, think “auditory brain development”!!
- Acoustic accessibility of intelligible speech is essential for brain growth.
- Signal-to-Noise Ratio is the key to hearing intelligible speech.