Life is Bliss - Lily's Cochlear Implant Journey

Hearing First - Impressive new LSL resource

Hearing First is an impressive new resource that presents the various aspects of a Listening and Spoken Language (LSL) approach.  

http://www.hearingfirst.org

Through a variety of informational resources, families and professionals can use this site to learn about strategies used to improve outcomes when teaching children with hearing loss to talk and listen.  

iHear - Online Therapy in Nebraska

iHear, an on-line therapy program for children with hearing loss, is ready to assist families in Nebraska who have children with a hearing loss.

Thanks to the Omaha Hearing School Foundation, St. Joseph Institute for the Deaf has received a grant to provide speech and language therapy services via the Internet to children in Nebraska and western Iowa.  

This is an incredible opportunity for families to receive high quality therapy from SLPs or Hearing Resource teachers that are certified AVTs or AVEds and also LSLS certified who work with kids with hearing loss everyday.  

On-line therapy is a great addition or supplement to a child's current therapy or as an alternative for families who cannot access highly-trained therapists in their area.  

For more information, see http://ihearlearning.org/

Nebraska 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

 

 

Omaha Hearing School Closes

Our beloved Omaha Hearing School has closed.  

We are so so sad for the community and for the future of kids with hearing loss in Omaha and the surrounding area (actually all of Nebraska) who choose a path of talking and listening. OHS made an enormous difference in Lily's life, and ours, especially in Lily's earliest years.  OHS gave us the tools and made us believe that Lily would succeed beyond our wildest dreams, and she has.  

We are extremely disappointed that the local school districts now choose to go it alone without telling families that they have an option for placement.   We're also disappointed that the money wasn't there to support such excellence.  

There will be a hole in the Omaha landscape and a hole in our heart.  We hope that we will continue to see OHS's impact and legacy, in some form, in the future.  We thank the teachers and staff for their tireless dedication to our daughter and kids like her.   Local newspaper article about the closing.

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.

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. 

The Ls have come

Lily is starting to get the /L/ sound.  While this is a much later developmental sound, she has been making good attempts at the sound consistently for the past week.  You can see her stop to think about getting her tongue to the top of the mouth before saying light, lollipop or leg.  With a name like Lily Bliss, that L sound is so important.  Thanks to her great SLPs and lots of attention to L words.

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

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. 

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. 

First Day of School

This week Lily was off to the Omaha Hearing School.  She is the only kid with a hearing loss in their Neighborhood Preschool.   It's mainstream preschool, but with hearing support backups if needed. We are also doing some SLP sessions and time with a hearing resource teacher after preschool to make sure she stays on the right course.   We really love the Omaha Hearing School.  They have supported us since Lily was a baby. 

Lily came home with rave review from her teachers, something like acting like a three year old, but talking like a 30 year old.  As she left the building she said, "That was fun."   I'm so glad.  Only a few tears from me upon leaving her at preschool. She is certainly growing up. 

Omaha Hearing School Brings Snow

Barb with the Omaha Hearing School is such a delight.  Each time she comes, she brings something unexpected that captures Lily's attention and imagination.  These unique experiences create huge language opportunities, that Lily thrives on.

Last week, Barb brought the book Sadie and the Snowman.  It is about a girl who builds a snowman in her backyard, which melts and gets eaten by various animals.  Sadie is not deterred and rebuilds the snowman over and over again. 

After reading the book, which Barb says is her favorite, Lily and Barb went outside and brought in a huge pan of snow.  Then they built a little snowman in a bowl on our kitchen floor.

The final product was placed outside and has only melted a little since last week.  The "macaroni" nose and the "pipe cleaner" mouth have fallen off, but the rest is intact.  

It was a very cool (no pun intended) language rich activity that we could all do together. 

Pre-Halloween Experiences - Costumes, Books and Song

Lily has been getting lots of pre-Halloween experiences.  She's read a dozen books about haunted houses, pumpkin patches and bony skeleton fingers.  And the big news is that she decided to be a "puppy dog" for Halloween.  Very cute pictures to come soon. 

Here Lily and Barb, from the Omaha Hearing School, are trying to decide what Lily should be for Halloween.  Maybe a ghost?   Then they read/sang a book.  Each page was a Halloween picture. This one was the Ugly Witch - The witch goes "Hee Hee Hee" and of course they made an ugly face.    

The final picture demonstrates that it is getting colder here and Lily is dressed so stylishly in her leapord print and hot pink accessories.  Pretty fancy!

Omaha Hearing School Adventure

Last week we had our weekly visit with the Omaha Hearing School in Omaha.  It was a blast. 

We are now working with Barb, who clearly adores Lily and Lily adores her.  Barb is passionate, aggressive and very creative.  She had worked with Karen for 29 years, who we miss terribly, but thankfully Karen and Barb have a very similar style.  

We played outside in the school's fabulous garden which was all set up for Lily.  Not only was there an obstacle course, but we played on the "static-free" playground, dug in the sand, played basketball and did an active language exercise with paper flowers. 

At the end of the day, the princess was exhausted and fell fast asleep in her tutu for the ride home.

Lily's IFSP Goals - 2.1 years old

We just finished our IFSP goals for Lily.  She is now 2.1 years old and and has 14.3 months of hearing.  At our next IFSP we will be thinking about preschool and the process of moving to an IEP.  However, this IFSP lays it all out and really provides us with a great guide and benchmarks for the next six months. Thanks to everyone who worked on it. 

• Lily will identify and discriminate between at least 10 word pairs that differ by voicing and by place of production in both final consonants and initial consonants of words.
• Lily will identify and discriminate at least 10 phrases with two key words in context/three key words in context, shown by following associated directions correctly.
• Lily will increase her auditory awareness and discrimination of sounds/words presented at greater distances (6 feet, 9 feet, directions coming from another room) and produced in environments with more background noise.
• Lily will be able to do the actions and recite or sing some words of 6-10 songs or finger plays.
• Lily will self-advocate when her C.I. is off or not functioning and will let adults know verbally when she does not hear or does not understand a spoken message.
• Lily will learn to use a louder and stronger voice when calling to others from distances farther away.
• Lily will take 2-3 conversational turns in an adult social-communication interaction.
• Lily will demonstrate an increase in auditory processing and language comprehension skills, shown by: Identifying 10 pictures or objects by function or action and by naming objects or pictures upon request. 
• Respond appropriately or verbally answering 10 each of simple /who/, /where/, /what doing/, and /yes-no/ questions.
• Follow 10 two/three step directions 
• Show understanding of personal pronouns: me, mine, you, he, she 
• Lily will add to her verbal vocabulary: 10 words from the concepts of Quality (descriptors such as color, size, taste), Position/Space(under, in back of, in front, etc.) 5 words from the concepts of Quantity (some, all, a few, numbers), Time (now, later, tonight, tomorrow) 10-15 present progressive verbs (is+verb+ing), e.g. playing, running, eating, sleeping, At least 5 pronouns: me, my, mine, you, your 
• Lily will increase her communication skills by using this vocabulary in 3-5 word phrases for various purposes: naming("that big dog"), notice or greeting("Hi Mommy), recurrence ("more yummy cookie, Daddy") non-existence or negation ("no go bye-bye," "water all gone," "Monkey not happy"), action ("Lily go down slide." "Me (or I) running fast."), location ("apple juice in cup"), possession ("my red ball"), questioning to gain information("What's that?" "Where___?" "What, Mommy?" ), and attributes ("big blue ball"). 
• Lily will use age appropriate speech sounds in all positions of words and will produce speech that is 80% intelligible to familiar listeners.

A Trip to the Zoo - There Is So Much to Talk About

This week we went to the zoo with some of our CI pals that also work with the Omaha Hearing School.  The other kids are about two years older than Lily and are talking beautifully. 

Karen, the director of OHS, commented that all the Moms were seamlessly reinforcing, expanding and correcting everything each other's kids were saying.  We've all had such great training from Karen, I think it is now just second nature.  We are so lucky that the Omaha Hearing School is able to continue serving our community and providing top-notch oral education to this area of the country.

Highlights at the zoo included Lily's first horse ride, catching butterflies, and the worm Karen helped the kids pick up and put back in the dirt.  Oh what she'll do for a language experience. 

Talking...A Lot - 250+ Words

Lily is saying more and more each day.  We're hearing two words being put together more often and new "vocabulary" appears everyday.  We rarely teach her vocabulary, but it is just evolving and she picks it up from our ongoing conversations throughout the day.  We're still talking a lot.  Lily now responds to our questions, not only with YES and NO but with answers or ideas. 

She also recalls events that connect with that word.  For example, I was talking about various food items Lily and Daddy could eat for dinner.  When I mentioned pizza, Lily said "Ivy," because we had eaten pizza with Ivy the previous week.  The girls were chanting PIZZA in the restaurant, so it must have stuck in her memory.  Then I asked who else ate pizza with us.  And Lily said, "Heather."  Correct.  So cool.  We can go back and forth with conversational turn taking.

I've stopped keeping track of Lily's words so specifically.  We'll still be using the MacArthur-Bates, but I think she may have 250+ or more.  It's hard to know.  New words recently include face, spatula, dancing, potty and see. 

Karen Rossi was here today from the Omaha Hearing School.  She is really a language genius and helps us refuel.  One of her suggestions is that we continue to model WH words, so Lily can ask questions.    Omaha Hearing School has also developed a distance learning program for parents.   I am so excited about this, especially for families who are away from professionals or want more Auditory Oral education.   More details to come. 

Sushi at Sunset

We attended Sushi at Sunset last night. Sound intriguing?  It is an annual fund raiser for the Omaha Hearing School.  Last year it was in the backyard of the school, but this year it was at an art gallery with encaustic paintings and all the sushi you could eat.  So delicious.  

At the event, we met a couple whose girls had attended the school many years ago.  They were still big fans and said OHS made all the difference in their daughters' lives.  They told us their girls, now in high school, are both on the honor roll, participating in band, driving all over town and looking forward to college.   They were so proud of their girls and helped us to see that everything will be just fine. 

Here is a picture of Heather and I demonstrating our skills with chopsticks. 

Additional IFSP Goals

One of the great things about working a lot of different professionals, is that you get lots of different ideas.  Sometimes we have tried to coordinate our IFSP goals, but this go around we seem to have created lots of different goals.  You can never have too many ideas or goals that you are working on at this point, because it is all part of the bigger puzzle. 

I thought I'd post some of those additional goals that we've set in the Omaha Hearing School IFSP, for the interest of others that may walk in our shoes.

From the beginning, the professionals have been asking us, "What are your goals for Lily?"  Goals?  Do all parents set goals for their children every six months from the time they are born?   Yes big life goals like go to college or travel around the world or marry someone fabulous, but not many have goals like families in some kind of special education do, for every developmental area of their child's life. 

For some parents, this may have been an easy question, but for us I am not sure that still today we can answer this question with any confidence or authority.  My primary goal or vision for Lily has always been to have her talk and listen as well as she can and love doing it.  I look to the professional on the steps to get us there. 

Here are some of those additional steps we are working towards - from now until Lily is 2.1 years old. 

1.  Lily will name familiar things in response to the prompt "What's that?"  Continue with "Where's...?"
2.  Lily will respond to more novel directions outside of her regular routine.
3.  Lily will respond to familiar 2-step directions.
4.  Lily will say 75 new words to label and to intentionally have her needs met including her own name, 10 action verbs, 5-7 descriptive adjectives, 2 prepositions of location
5.  Lily will use 2-word combinations: N+N, N+V, V+N, A+N, P+N, Question + N, N+N
6.  Lily will sing songs with a sustained voice and pitch changes
7.  Lily will imitate all Ling sounds
8.  Lily will look at people when they are talking to her and will look at people when she is talking to them, unless it is in a natural situation when she is working side by side with another adult or child. 

New Book: I Promise To Be A Good Parent

Karen Rossi, Director of the Omaha Hearing School, and our Oral Guru, has a new book out called I Promise to be a Good Parent - A Book for Families and Friends of Young Children.  It highlights 10 key "promises" (aka language tips) for parents to make to their children.   The promises are all based on creating meaningful interactions between parents and children and optimizing the young child's development of security, confidence, listening skills, and spoken language. The ideas are simple, yet spot-on, and highlight the fundamental language ideas that Karen has drilled into us like engaging your child, involving them in normal everyday activities, and talk, talk, talk.   It would be a beautiful gift for a new parent.

Memories

I met a family the other day of a 10-month old with hearing aids.  This adorable little baby girl looked just like Lily at that age.  The baby only had a mild hearing loss, but her little hearing aids were neatly taped behind her ears.  The mom said she found double-sided tape in the intimate apparel department. Very clever. We had always used the toupee tape from Sally's Beauty Supply,

I'm not sure why her aids caught my eye, but Lily's Dad saw the family in the parking lot and the baby caught his eye too.  Maybe its "Ear-dar."  The never ending quest of searching for others with hearing aids and CIs. 

As Lily is getting bigger, her CIs seem to being getting smaller.  When she was so little, those hearing aids seemed to take up half her head, even though they were very small compared to hearing aids of years past.  Maybe I am getting used to seeing the CIs on her head now or maybe as her little wispy hair is growing in, the CIs don't seem like they are so prominent. 

One of the most memorable things another Omaha Hearing School parent said to me very early on, when it seemed that Lily was all hearing aids, was, "When we see your baby, we see your baby and yeah she has hearing aids.  We don't see her hearing aids and then see your baby."  It is a fine distinction, but it really made a huge difference for me to know someone was seeing her that way.   Maybe a mini lesson for a grieving parent. 

Seeing this 10-month old baby brought back so many memories of when Lily was little and all that we have been through.  And then I have to laugh because Lily was that little just eight months ago.  My how things have changed. 

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.

OHS Play Groups

We are huge fans of the Omaha Hearing School.  Not only does the school have a 50-year history of Oral Education, but they have a fabulous facility, well trained teachers and a strong parents' group.  This summer we've been participating in the OHS play groups.  Although it means a trip to Omaha, we love talking with these smart passionate parents, who have been on the hearing journey three to five years longer than we have.  Some kids have hearing aids and some cochlear implants, but its great to be with parents and kids that know "what is on your kids head."   Abigail, a 6-year old smart sassy well-spoken redheaded bilateral CI wearer, hosted the group at her house today.  If you didn't see Abigail's technology, you'd have no idea that she can't hear without them. This spring, she even testified in front of the Nebraska Legislature, but that is a story for another time.  Amazing!