Life is Bliss - Lily's Cochlear Implant Journey

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.