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!

 

 

4 years ago - Hearing Birthday

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

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

FM classroom simulation for kids with hearing loss - Video

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

 

Nebraska Online Speech Therapy for kids with hearing loss

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

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

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

Internet Therapy Offered to Nebraska Children with Hearing Loss

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

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

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

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

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

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

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

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

 

 

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

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

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

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

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

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

Babies learn language by lipreading from 6-12 months

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

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

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

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

Apps for Kids and Adults with Hearing Loss

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

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

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

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

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

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

For more information

Quantity of Communication Matters

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

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

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

ihear - Long Distance Oral Ed

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

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

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

Resource for teachers of students with hearing impairments

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

 

Videos: Lily's language development 9-48 months

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

9 months old

 

12 months old

 

15 months old

 

18 months old

 

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

 

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

 

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

 

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

 

42 months old - Language test

 

42 months old - Sounds

 

48 months old - Final Language Test

 

 

Apps - An Emerging Tool for SLPs

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

Gifts for Kids with CIs

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

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

Parents Magazine Covers Cochlear Implants

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

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

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

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

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

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

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

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

 

 

Therapy idea: Using old cell phones

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

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

IEP - 4 years old

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

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

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

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

 

Deaf Education Evolving with Implants

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

Lily's 3rd Hearing Birthday

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

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

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

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

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

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

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

 

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

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

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

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

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

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

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

All Preschool Programs are Not Created Equal

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

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

Whispering in Lily's ear

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

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

Flintstones Hearing Loss Video

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

1-Sided hearing loss lowers language skills

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

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

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.

VIDEO: Lily in a Noisy Restaurant

Here is jet lagged Lily, answering questions from Rachel, another CI recipient in a noisy restaurant.  Lily was not so interested in talking, but was quite interested in showing off her colouring book (proper English spelling for my friend Linda).  FUN VIDEO Rachel. Thanks!

2010 - A Year in Review and Looking Forward

I've been trying to recall what happened in 2010 and the implications or impact on our lives.   It was a busy year that went in many different directions.  Lily has grown in so many ways.  She is a little girl who sees no boundaries. 

Hearing issues still remain a major focus for our family, but it is now very manageable.  Our friends and family have been patient and listened to our never ending rants about hearing loss, technology and the challenges we deal with.  It has become who we are. 

Lily started two mainstream preschools this year and is keeping up or exceeding her peers in all areas.  We still work with SLPs and hearing resource teachers at Omaha Hearing School and our public school. The focus and upfront services have paid off and Lily's expressive and receptive language is extremely strong.  

We were fortunate to start using an FM system in preschool, throughout day at noisy times and in the car.  This has made a big impact.   Hopefully 2011 will bring a new BTE and ClearVoice from AB which Lily would transition to this fall.  Hopefully our advocacy with the public schools for improved acoustics in  elementary schools will mean all kids can have better options for hearing.  

Our passion for travel continued this year and we were fortunate to travel abroad, as well as to Chicago, Pittsburgh, Madison for a hearing study, and we attended AG Bell in Florida to both continue our education and represent the Bionic Ear Association.

LIly is rapidly developing her own interests including dancing, swimming, nature, music and art.   She's starting to read and never stops singing or dancing.  She loves her family and her life-long friends. 

Our families continue to provide major support to making our crazy lives work.  Without them, we wouldn't have the flexibility to go in so many different directions.  Thank You!!  It means the world to us and Lily thrives from your involvement. 

I think 2011 will bring many new ideas and activities, improved hearing and more advocacy, and maybe a grand adventure or two.  Lily loves surprises and so do we.  Who knows what the future will hold.

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.

Audiology Visit - 2.6 years post CI activation

We made our semi-annual visit to the Audiologist this week. 

Lily was tested in the sound booth first.  Left/Rt ear thresholds (quietest electric stimulation she could recognize) at 250 Hz 25dB/10dB, 500 Hz 15db/10db, 1000 Hz 15db/15db, 2000 Hz 30db/25db, 4000 Hz 15db/10db, 6000 Hz 30db/25db.   

Then they plug her in to the computer and adjust the map (software on her CIs).  Lily saw the cord and said, "Look, I have a leash."  Every electrode was tested on both sides.  Those around the 2000 Hz and 6000 Hz were adjusted up to see if we could improve Lily's thresholds in those frequencies. The rest were working well and only slightly adjusted.

They also did a Nu-Chips test which is a open-set word recognition/repetition test (R: 24/25 and L: 24/25) and a TAC Subtest 6 where she had to remember four critical elements and then match it to a picture (14/15).

Conclusion - Lily continues to do very well!

Chickens, Cakes and Cold - K and G Sounds

LIly has been working hard in speech therapy.  Here is a note we received last week from her SLP at OHS.

Just wanted to let you know how great LiIy is coming along with her "g" and "k" productions especially at the beginning of words.  She sometimes needs a reminder to put her tongue back but when she is focused on that sound she does real well.  In spontaneous production she still needs quite a few reminders, but can correct her production when I repeat her mispronunciation.  These sounds at the end or middle of words is still harder, which is expected.  She is still working hard to produce the "l".  She has been comparing this sound to the "n" sound which is placed in the same spot but with a little length difference. She can make the "n" sound several times before attempting the "l" to help her place the "l" tongue tip in the correct spot instead of flicking it...So she would say "n", "n", "n" (quietly) "lion."  Hopefully this will encourage her tongue to not flick so much. 

FMs - Thanks to Faye

Lily has been wearing a Phonak Microlink CI S receiver with a MicroLink FM transmitter during preschool, noisy activities, and therapy, until last week when one of the wires on her receiver pulled out of its casing.

I called Faye, our public school Hearing Resource teacher and within two hours, she brought a new receiver to our home.  This is AMAZING customer service!!!!   THANK YOU FAYE!!!  We really appreciate her responsiveness and attention to Lily's needs.   Lily never missed a beat and loves wearing her FMs.  They make a huge difference, especially in noise. 

Phonak, the maker of Lily's FMs, now owns Lily's Cochlear Implant company Advanced Bionics.  We are looking forward to a next generation Cochlear Implant that combines both of their technologies with out of this world results. 

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.

 

Keeping it PC - Terms about Hearing or not

I've been reading a number of interesting discussions about using appropriate terms to describe someone who has hearing loss.   Here are some options:

• Hard of hearing
• Hearing impaired
• Hearing loss
• Deaf/deaf
• Profound Hearing Loss
• Hears with Cochlear Implants

I'm sure there are more.  There were a number of adults arguing that they were not impaired and the term hearing impaired was offensive, especially when used in films such as "Closed Captioned for the Hearing Impaired."   Some liked Deaf/deaf, but others argued they could hear with their technology and deaf brought with it a number of assumptions that they couldn't hear.   Others say they have profound hearing loss, but unless you are talking with others "in the field," people don't know how to respond to this.  

On this hearing journey, we've come to use "Lily hears with Cochlear Implants."  Not right for everyone, but for now, it works for us.

 

 

 

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.   

 

Playing in the Leaves and READING

Playing in the leaves was a perfect way to spend a beautiful fall day.  

Lily knew that leaves rustle and crackle.   And of course they "fall from the trees because winter is coming."   Leaves and trees have been a theme at Nature preschool which she continues to enjoy.  

Speaking of Crackle - Lily is starting to read.  The Rice Crispy Box was in front of her and she sounded out "POP!"  "And there is an exclamation point," she said.  We also put the bowl of cereal up to her microphone and she said she could hear it cracking.  Now that is a very quiet sound.  

Last week she also read her first sentence in a library book that she had never seen before.  It said "I Love Dogs."  What an exciting moment.   Who would have ever imagined that she would start to read at 3.4 years old.    

 

Classroom Acoustics - Fantastic ASHA Article

Significant progress has been made recently in classroom acoustics standards development.  A great ASHA article describes the recent action by the U.S. Access Board, which is charged with developing accessibility guidelines for the Americans with Disabilities Act and Architectural Barriers Act.   If the standards become part of the rules, any entity accepting federal funding—including all public and some private schools—would be required to comply. 

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. 

DVDs Don’t Turn Toddlers Into Vocabulary Einsteins

More research showing that putting your kid in front of the TV doesn't work. Reported on in ScienceNews. What does work is to bathing them in language. Talk, talk, talk.

Omaha Hearing School - Two-Way Mirrors

One of the things I love about the physical structure of the Omaha Hearing School besides the unbelievable acoustics are the little observation rooms attached to every classroom.  What an incredible way to promote parent interaction without disturbing the class and teacher.

Does your kid act the same when you are not around?  Now you can find out.

Here is a picture of Lily working with her new SLP Lisa.  It was taken through a two-way mirror.  When I showed it to Lily, she said "How did you get this picture.  You weren't there."  Oooops.

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

Omaha Hearing School - Day Two

Day two continued to be a success at the Omaha Hearing School.  While Lily is in the neighborhood preschool, she is the only kid with any hearing apparatus on.  Of course some kids are curious and some kids pay no attention at all to her CIs. 

On Monday one of the other little girls was quite curious about Lily's CIs so the staff did a little show and tell today.   They said everybody is different (hair, glasses, eyes, CIs, hearing aids, etc), we have five senses, Lily has a magnet in her head and you don't, and if Lily is looking away and you want to talk with her you start by saying, "Lily" then she will turn around and you can talk with her.  Apparently this is a "best practice" when communicating between 3 and 4 year old kiddos, so they practiced it.  

Lily also mastered the use of the word "upset" today.  Not as in I am mad at you, but as in "the cat upset the trash can."  Barb reported that she was reading a book with Lily trying to teach "everywhere, somewhere" concepts, but that Lily was more interested in the word "upset".   It was probably because Barb let her upset the trash cans more than once.  

Lily also reported as we were getting ready to leave, that she loves school and her Mommy.   Ahhh. 

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."