Life is Bliss - Lily's Cochlear Implant Journey

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!

 

Classroom Acoustics - 40%+ say they can't hear

Always interested in understanding the importance of hearing in classrooms.  Here is a new Swedish study that says four out of ten students experience problems with their sound environment during their education.

 

 

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. 

 

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.  

Apps - An Emerging Tool for SLPs

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

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. 

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"

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.

 

Wrightslaw Boot Camp for parents - Advocacy Training

Providing advocacy training for parents of children with special needs (Wrightslaw Boot Camp)

July 29 & 30, 2011

9:00 a.m. to 4:30 p.m.

Scottish Rite Temple
332 Centennial Mall South
Lincoln, NE 68508

All children qualifying for special education services are required to have an Individualized Education Program (IEP).  The IEP specifies the special education and related services necessary to ensure the child a free appropriate public education.  The IEP process can be overwhelming for parents due to complex federal laws and regulations.  Down Syndrome Association for Families (DSAF) is hosting an intensive, two-day Wrightslaw training on special education and advocacy.

If you are a parent or guardian of a child receiving special education services, or a professional wanting to better serve kids with disabilities, you don't want to miss this 2-day training!

Participants will learn about:

• special education statutes and regulations to get answers to their questions
• tests and measurements to measure educational progress
• charting out test scores
• writing SMART IEP goals and objectives
• using No Child Left Behind as a tool to open doors to services
• creating paper trails and writing effective letters
• advocacy strategies to negotiate for appropriate special educational programs

For a Schedule and to Register

GAO Report on Fed Support for Developing Language and Literacy

New report out from the U.S. GAO on "Deaf and Hard of Hearing Children: Federal Support for Developing Language and Literacy."

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.

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. 

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.

Assistive Technology Advocacy

Interesting new article on Assistive Technology Advocacy

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. 

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. 

Nature Preschool - Day 1

Lily is going to a second preschool we are calling Nature Preschool.  This gives her incredible nature and outdoor experiental learning opportunities.  

Leaving today was much easier (for me).  Lily said "OK bye Mom" and off she went. We haven't gotten much info about what happened yet, except the class was ouside a lot of the time and they weren't allowed to pick anything up on their hike today. 

Lily also arrived to school with the FM on and the mute button pushed.  That way I just had her teacher put the FM on and explained that when she was ready to talk to Lily in a small group/large group she could just unmute it.   After the class, her teacher said they spent a lot of time outside, so didn't use the FM much, but that Lily seemed to hear and understand everything.   It's really hard to tell.

Hopefully our great public school teachers can observe in the next few weeks and offer any pointers on incorporating this technology into the preschool practice. I am going to continue to encourage them to use the FM as much as possible because of the amazing difference it can make.

So excited that Lily can have this very cool opportunity.  Lily is very excited too and she is ready to go back again.

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."  

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

Here's part two of my mini-notes.

--------------------------

• 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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IEP Goal Bank

Here's an IEP Bank full of ideas on writing language and listening goals for kids.  As Lily approaches three this summer, we are starting to think about this transition. 

New Resource on IDEA for Parents

The Let Them Hear Foundation has launched a resource center for parents and professionals working with children with disabilities to provide a fundamental understanding of the key concepts of the Individuals with Disabilities Education Act 2004 (IDEA 2004).  

While the information will be useful for parents and professionals dealing with a child with any of the thirteen disability categories defined by IDEA 2004, the primary focus is to provide information to parents and professionals on issues related to the specific category of hearing impairment (including deafness). 

The Let Them Hear Foundation was formerly the group that battled the insurance companies to cover Cochlear Implants.  Now taking on the issue of appropriate therapy and treatment for kids with hearing loss is a very logical extension of their great work. 

Upcoming Moog Center Workshops

As you may remember we had a fantastic experience this summer attending the "Helping Your Children Learn to Talk" workshop in St. Louis. It was without a doubt one of the best couple days you can spend and well worth the investment. Well, the Moog Center is taking applications for this summer's training and offering a variety of other programs for parents and educators alike. Here's a listing. Check it out and don't forget to tell your educational professionals as well.

January 21-22, 2010 - $300 

Pediatric Cochlear Implant Programming 

A workshop for cochlear implant audiologists who work with infants and children. This workshop will focus on cochlear implant programming techniques for optimizing access to sound for infants and young children.  Protocols for monitoring progress in children at various developmental levels will be discussed.  Instruction will include live demonstrations, videos, and presentation of relevant case studies.  Seating for this interactive workshop is limited. CEU’s available.  Contact:  Connie Ciavirella at 314-692-7172 or cciavirella@moogcenter.org 

 

February 18-20, 2010 - $350 

The Earlier They Get Started, The Faster They Learn To Talk. 

For teachers and SLPs providing early intervention services to children with hearing loss. This workshop will focus on techniques for helping parents work with their own children and strategies for professionals working with very young children to develop spoken language skills.  Instruction will include live demonstrations, videos and hands-on opportunities.  Seating is limited. CEU’s available.  Contact:  Betsy Moog Brooks at 314-692-7172 or bbrooks@moogcenter.org 

 

July 7-11, 2010 - $150 

Helping Your Child Learn To Talk 

A Workshop for Parents of Children who are Deaf or Hard of Hearing, ages 2 to 5 

This four-day workshop will provide parents with opportunities to learn strategies to help their children learn to talk while their children receive daily individualized instruction by a staff member of the Moog Center.  Each day is packed full of activities for the children and information for the parents.  Children over age 3 may receive speech and language evaluations, for an additional fee.  Contact:  Betsy Moog Brooks at 314-692-7172 or bbrooks@moogcenter.org 

 

September 2010 – Date to be determined. $150 

Strategies for Professionals of Mainstreamed Students with Hearing Loss 

For SLPs and teachers who have a student with hearing loss in their classroom. Learn effective strategies that work with students with hearing loss who are mainstreamed into your school setting.  Topics to be 

discussed include:  hearing loss and effects on language, academic difficulties, assistive listening devices, and support services. Contact:  Connie Ciavirella at 314-692-7172 or cciavirella@moogcenter.org 

 

October 2010 – Date to be determined. $300 

From Assessment to Practice:  Developing Spoken Language Skills in Children with Hearing Loss For SLPs and Teachers of the Deaf 

This workshop will focus on accurately assessing language levels, identifying areas for language instruction, selecting appropriate goals and objectives, and planning lessons for children with hearing loss.  Topics include:  Using norm-referenced language evaluation tools to diagnose strengths and weaknesses, using criterion-referenced language rating forms to select goals and mark progress, and implementing targets into a variety of language lessons. CEUs available. Contact:  Connie Ciavirella at 314-692-7172 or cciavirella@moogcenter.org 

 

November 2010 – Date to be determined. $300 

Conversational Language Activities for Deaf Children For SLPs and Teachers of the Deaf 

This workshop will focus on implementing language goals into a variety of conversational language activities for children with hearing loss.  Topics include:  Modeling and imitation techniques for correction and expansion of language, selecting appropriate language goals, planning conversational language activities to meet language goals and a variety of ideas for many different kinds of conversational activities.  This workshop will also include classroom observations and some hands-on practice. CEUs available.  Contact:  Connie Ciavirella at 314-692-7172 or cciavirella@moogcenter.org 

 

For your convenience, the Moog Center offers onsite workshops for larger groups.  If your staff or district is interested in scheduling one of the above workshops onsite, please contact Connie Ciavirella at 314-692-7172 or cciavirella@moogcenter.org 

 

Visit the website at www.moogcenter.org for complete workshop listings and information about the Moog Center’s publications.

Are You Fancy? No, I'm Just Lily.

Fancy Nancy by Jane O'Connor is a big hit in our house this week.  Faye, Lily's hearing resource teacher, brought us the book.  She reasoned that if Lily loved fairy wings, she'd love Fancy Nancy.  She was right. 

Fancy Nancy loves to make everything fancy including her family members and she loves to eat parfaits.  Both are things Lily loves too.     

If we ask Lily if she is fancy, she says "No, I'm just Lily Bliss." 

Education Resource for Public School Teachers on Hearing Loss

Interesting resource developed in Missouri to educate public school mainstream teachers about childhood deafness and to help them understand communication and educational issues relevant to children who are deaf and hard of hearing who use hearing aids and cochlear implants.  It's just the basics, but provides a great introduction.

Music Therapy and Its Link to Listening and Reading

New research on music therapy and its effectiveness at teaching listening skills, especially in noise. 

Incorporating a music therapist for kids in early intervention, for a range of issues, seems like an increasingly good public policy idea. 

"The findings strongly support the potential therapeutic and rehabilitation use of musical training to address auditory processing and communication disorders throughout the life span.....Better perception in noise was linked with better working memory and tone discrimination ability. The results imply that musical training enhances the ability to hear speech in challenging listening environments by strengthening auditory memory and the representation of important acoustic features."

The researchers have also looked at the link between music and reading.

"The Auditory Neuroscience Lab at Northwestern has helped establish the relationship between sound encoding in the brain and linguistic abilities by showing that the very neural sound transcription processes that are deficient in children with dyslexia are enhanced in people with musical experience. Based on this collective work, poor readers may show greater benefits from training programs that include music as well as speech sounds."

My Favorite Panel at the Moog Center Workshop

One of my favorite panels at the Moog Center Parents Workshop was the Kids and their Moms panel.  We've seen a number of panels before, but this one really resonated for me because the experiences of these kids at seven, eight and nine were going to be most like Lily's experiences.   These kids were all implanted with CIs relatively young, they were all bilateral and were all educated with an Oral approach at the Moog Center. 

Each kid mainstreamed in the first grade and continued to do very well.   They all described their "best friends" when asked about a social life.   It was really moving.  Certainly the kids continued to have certain challenges like hearing in very noisy places such as the lunchroom and of course swimming.  (This topic always comes up so please Advanced Bionics, Cochlear and Med-El hurry up with the water proof CIs.)  These parents also had to figure out how to advocate for their kid in this new environment, after leaving the safety and security of the Moog Center. 

It really made me weapy to hear how these kids talked with ease and could answer questions from other parents that were posed from across the room.  It just reaffirmed for me that even though there will be lots of challenges, Lily is going to do very well.

Regional Planning Team Parent Rep

Nebraska is divided up into "special education" regions that are monitored by the state.  Our region is just our town's public school district, but many rural areas represent multiple towns and counties.    Each region is represented by a Regional Planning Team which is made up of service providers, school staff and parents.   I am on that Regional Planning Team as a parent representative.  It is the first time there has been a parent representative of a child with a hearing impairment. 

The goals of the regional planing team include marketing the early intervention services, monitoring the process and time line from referral to identification to IFSP/IEP, and parent involvement and awareness. 

One of the parent initiatives has been to create a Google Group/Listserv for local families of children with a hearing loss.  The online group will allow parents to ask questions of others, post information, discuss hot topics and help families of newly identified kids.   If the models works, we will look to replicate this tool.  Some special needs groups in our community are very organized, interestingly the families of kids with a hearing loss are not.  This could be because kids with hearing loss represent a range of needs (signing and not), loss (mild to profound), technology (CIs, hearing aids or bone conductors) and other additional issues.  

Whether this tool is successful or not, our aim is to create a stronger bond and voice for local families of kids with a hearing loss. 

LPS Meeting and Language Tools

Our public school is now having quarterly meetings with parents of students who are deaf or hard of hearing, which I think is fabulous.  It is not only a time to share information and provide training, but it also a time for discussion of what is or is not working.  There are 26 kids under five and only four parents showed up to this week's meeting.  Not good.  I'll have to recruit more for the January meeting. 

The training piece was done by one of the SLPs.  She talked about Experience Books and Treasure Walks. Experience Books, which I am now the proud creator of one about Lily's visit to the Prairie, help enhance and expand language.  They create opportunities for new vocabulary, concept works and attach meaningful, fun experiences to the language.  The Treasure Walks involve collecting items "with a theme" as you go for a walk. When you return, you can put the items into a collage.  This sensory, hands-on experience helps to connect abstract language to concrete items and the objects become visual supports for listening.

Karen from OHS was also here today and she recognized some of Lily's words, so that is good confirmation to move them from the words in progress list, to the words mastered list.  And when I say mastered, they may still be missing a syllable or two, but she uses them consistently and they sound pretty close.  Progress.

Lily Featured in SNRP Publication

With Lily's great personality, brilliant mind and striking good looks, it's likely she'll be featured in all kinds of publications someday.  Maybe the cover of Rolling Stone.  Perhaps Time Magazine.  Certainly Yoga Today.  Already Lily, and our trip to the AGBell Conference, was featured in the Fall edition of the Southeast Nebraska Regional Program (SNRP) newsletter.  See page three - Parent-to-Parent Corner. 

Download SNRP Fall 2008 Newsletter.pdf

After the Legislature closed the Nebraska School for the Deaf, they divided up the state into regions to serve students who are deaf or hard of hearing.  For our region, SNRP provides a variety of services from lending materials and sign classes to social events and training opportunities.   

Progress with the Public School

After the LPS meeting last night, we felt like progress was definitely being made.  Our public school rolled out this year's plan for kids five and under in the hearing impaired program.  The changes are in large part due to parent input (my observation) and LPS points to more resources being available because the hearing impaired population (26 kids under 5) grew at a rate only outdone by kids with Autism. 

Brief Highlights:

-  Two sections of preschool, five days a week, with longer session times

-  Each pre-school session has six kids that will be co-taught by a SLP and TOD, both with master's degrees

-  Classes all focus first on Oral learning with supports given after oral has been tried various ways

 including pictures, gestures and then sign. 

-  The Admins agreed to meet with Omaha Hearing School early this fall to "learn" what is going on there.  This hopefully will be the start of a very valuable partnership for LPS.

-  The best news is that we get to keep our favorite SLP Carole!!!!!!!!  We are very lucky with this one  and pressed hard to get her.  I think she pressed hard to keep us too.  It is amazing when you just  click with someone you've know for such a short time.  She is like a favorite Aunt that we've known for our entire life.  And she has been having a lot of dreams about Lily talking so we knew we had to keep  her around.