Life is Bliss - Lily's Cochlear Implant Journey

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."  

AG Bell Adventure

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

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

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

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

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

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

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

 

Post Mother's Day Post

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

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

May 8th, 2010 by Elizabeth

HERE’S TO THE MOMS

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

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

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

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

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

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

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

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

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

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

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

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

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

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. 

Managing Life's Stresses

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

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

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

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

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.

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.

Communicating Her Needs Or Stalling Tactics

Lily is quite the communicator. She's using her new skills to try and convince us to let her stay up later at night. Last night we came home from dinner at Grandma's and before Lily headed upstairs to put on her pajamas she ran over to the kitchen table, jumped into her booster seat, buckled herself in, and said, "I play cards now Mommy". She was referring to activity cards that she played with Mommy earlier in the day from Advanced Bionics Listening Room. She knew that it would be hard for us to say no to just a little more language learning. Clever girl. Here's a photo.

Tonight was a little different. We've been reading the book "Baby Can't Sleep." In it the daddy tries to get baby to fall asleep by counting sheep to her (One sheep chasing fireflies, two sheep playing guitar, three sheep staring at stars, etc.). Lily was a little restless and reached for me to pick her up and said "I count sheep, I count sheep, I count sheep," which sounds remarkably like "I can't sleep." Once I made the connection we counted a few sheep and she promptly relaxed and fell asleep. Ahh the power of language.

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.

Moog Center's Parents Workshop - Changing Expectations

After going through our Moog Center Parents workshop notes this morning, there were three points made by Betsy Moog Brooks that I found especially interesting. 

1.  Moog now has 20 alumni who have reached age 18 or older and all have graduated from high school.  Over 90% of these alumni are attending college.  The first alumnus is now in Graduate School. 

2.  Parents are never wrong when they "know" something about their child.  For example, if the parent thinks that the child would learn better in a different way, the teacher will change what they are doing and try what the parent thinks will work.

3.  If the child is not succeeding, the teacher is not teaching correctly. 

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.

Moog Center's Parent Workshop - We're in Love! Part 1

We spent the last few days at the Moog Center's Parent Workshop.   We are in love with this place.  The workshop had about 15 families with children from one to five years old who had hearing loss.  Some kids wore hearing aids, many wore Cochlear Implants and a few wore both.   

The families were from all over the country and seriously committed to helping their kids learn to talk and listen.  The last question of the seminar from the parents was when can we come back?

The workshop lasted four days and covered topics such as Modeling and Imitation, Simulated Language Learning, Audiology, Benchmarks, Capitalizing on Routine Activities, Mapping, IEPs, Teaching Family and Friends about Communicating with your Child, Parents Share and a Kids Panel made up of first and second graders and their Moms.  Betsy Moog Brooks delivered most of the sessions and seemed to have an answer for every question that the parents asked.   She meant business and was clearly there to make an impact on kids with hearing impairments.   

Bestsy’s mother, Jean Sachar Moog was also there and presented research on Early Educational Placement and Later Language Outcomes.  She highlighted the significant impact two-year-old classes for D/HOH kids can make in later language outcomes.  These two women are leading the way in helping children learn to talk and listen.  What a thrill to be a little a part of their lives.

The research they gave us about the Moog Center says that at three years old 81% of their kids were at or above their age level in receptive vocabulary and 86% were at or above their age level in expressive vocabulary.  At age five, 94% were at or above their age level in receptive vocabulary, 97% in expressive vocabulary, 91% in receptive language and 77% in expressive language.

It seemed nothing at the Center happened by accident.  Everything was recorded, strategic and intentional.  We would move to St Louis in a minute if Lily was not thriving from the services in our area.   Lily had an hour of speech therapy everyday with Laurie, a Moog SLP, and spent the rest of the time talking with Moog teachers in the toddler room.  At the end of the workshop, we knew everything Lily worked on and where they believed we should put our “language and speech” energy.  

They said we should focus on requiring Lily to use two and three word sentences every time she talks.   Lily has a huge receptive and expressive vocabulary, but just needs to move towards more complex sentences.   If Lily doesn’t attempt a two or three word sentence after we model it, they said we shouldn’t give her what she wants.  

This is their model of modeling and imitation.   It seems to already be working.  Lily is talking non-stop and we don’t know where she is coming up with some of the words and sentences she is putting together.  Some of that started before we got to St Louis, but the "strategy" seems to definitely be accelerating her language.  

The facility itself was beautiful, incredibly quiet for the best learning environment and run with an eye for detail.   We are re-energized!!!

Here are some photos of the Moog Center.

(Note the metal slide and static-free play structure)

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. 

Helping Your Child Learn To Talk - Moog Center Workshop in July

The Moog Center for Deaf Education in St. Louis is holding a Parent Education Workshop from July 15-19, 2009.    This workshop is for parents and their children with hearing loss ages two to five.  

The adults will have classes while the children have their own classes, divided by age and language ability.  There is a 1:1 ratio of adult to child and each child will receive daily individual instruction by a staff member of the Moog Center.  

This is the eleventh year of this workshop.  Every family that attends the workshop also has the opportunity to have an individual meeting with a staff member about a topic or concern of their choice.  Each day is packed full of activities for the children and information for the parents. 

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

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

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

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

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

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