GA H&V, GBYS February Love Letters Blog Event- You've got mail- Letter #4

Ga H&V, GBYS February Love Letters Blog Event
You've got mail! Letter #4

For my February Love Letter to my daughter, Amelia, I decided to speak our love language......music. Besides, What's more romantic than a mixed tape?  Amelia and I's mixed tape would consist of the following 3 songs:

1.  "Love Is A Battlefield" by Pat Benatar. Amelia & I know how to love & know how to fight. We are so similar!  It's a hot/cold Aries meeting a stubborn/clever Libra. I love that she has that fight in her especially since she has to advocate for herself a lot with her hearing loss.
We are young
Heartache to heartache
We stand
No promises
No demands
Love is a battlefield
We are strong
No one can tell us we're wrong
Searching our hearts for so long
Both of us knowing
Love is a battlefield
You're begging me to go
Then making me stay
Why do you hurt me so bad
It would help me to know
Do I stand in your way
Or am I the best thing you've had
Believe me
Believe me
I can't tell you why
But I'm trapped by your love
And I'm chained to your side
When I'm losing control
Will you turn me away
Or touch me deep inside
And when all this gets old
Will it still feel the same
There's no way this will die
But if we get much closer
I could lose control
And if your heart surrenders
You'll need me to hold

2. "Diamonds: by Rihanna-Amelia & I use to turn the radio up & sing this song as we sat in Atlanta traffic with a long commute to the Atlanta Speech School for therapy/speech. We both love all things sparkly! 

Shine bright like a diamond

Shine bright like a diamond
Find light in the beautiful sea, I choose to be happy
You and I, you and I, we’re like diamonds in the sky
You’re a shooting star I see, a vision of ecstasy
When you hold me, I’m alive
We’re like diamonds in the sky
I knew that we’d become one right away
Oh, right away
At first sight I felt the energy of sun rays
I saw the life inside your eyes
So shine bright tonight,
You and I
We’re beautiful like diamonds in the sky
Eye to eye,
So alive
We’re beautiful like diamonds in the sky

3. "Girl on Fire" by Alicia Keys- I remember the day she started singing this song & I recorded her. She (my deaf little girl) was singing clearly & on pitch. In that moment, I saw the beautiful results of all of the hard work she had put in at school to learn to listen/speak & it was worth all we had sacrificed as a family. 
She's living in a world, and it's on fire
Feeling the catastrophe, but she knows she can fly away
Oh, she got both feet on the ground
And she's burning it down
Oh, she got her head in the clouds
And she's not backing down
This girl is on fire
This girl is on fire
She's walking on fire
This girl is on fire
Looks like a girl, but she's a flame
So bright, she can burn your eyes
Better look the other way
You can try but you'll never forget her name
She's on top of the world.

So Amelia, you are strong! You are a our fire!  We will always be chained to each other's side. And remember to always shine bright like a diamond. 
Love Mom,
(Scarlett Giles is the GA H&V, GBYS Program Coordinator)


GA H&V, GBYS February Love Letters Blog Event- You've got mail! Letter #3

Ga H&V, GBYS February Love Letters Blog Event
You've got mail! Letter #3

To my son:
You have brought me so much joy in the last 16 years. Your spunkiness and strong will have both inspired me and drove me crazy! I joke that you have given me all my gray hairs. Your determination is inspiring. You have always had a smile and charm and way about you that lights up a room and draws people to you.

Your hearing loss is only one part of you. It hasn’t stopped you from being a great athlete or a great student. Most importantly, your hearing loss hasn’t gotten in the way for being the kind-hearted, caring person you are. You are created perfectly and God has created a perfect plan for your life; your hearing loss is a perfect part of his plans for you!

Although you have challenges because of your hearing loss, it has also taught you and me so much. It has allowed me to have more empathy and understanding for other parents and people.  I have met some awesome kids, parents and families because of your hearing loss. And the same is true for your father, your brother and your sister. 

Thank you for blessing us and loving us the way we love you, Caleb!

-Written by Kelly Cashion, GA H&V Parent Guide


Ga H&V, GBYS February Love Letters Blog Event- You've got mail #2

Ga H&V, GBYS February Love Letters Blog Event
You've got mail! Letter #2

Dear Lilia,
We look back on our journey, and we are in constant awe of you. Lilia you have continued to defy the odds. As we began our journey on starting a family, it was not as simple as we thought. Countless doctor’s appointments and two years flew by as we prepared our bodies to bring you into this world. We were told by our doctors and specialists; biological children may not be part of your future. We relied on our faith to help us through, and knew no matter the outcome we would be blessed. After a grueling and lengthy process, we were told you only have one embryo. The chances of this embryo “sticking” are not in your favor. Two weeks later, we go in for our blood draw and sure enough we were pregnant! Still extremely early, we followed up weekly and those weeks turned into months and our sweet Shorty was due on July 9th, 2009. You had other plans, you decided not to come until July 17th. After almost 20 hours of preparing and laboring, we hear your cries and we were elated. And after that we realized, we forgot to ask is it a boy or a girl? Girl! Lilia Shirazeh is here! She is perfect in every way.

You were in a precious pre-school when one of your teachers commented on noticing you were not turning around as quickly as before when she called your name. We had no reason to be worried, so we waited until we moved to schedule your hearing test at CHOA. Lewis and I never missed any doctor’s appointment, any school function, we missed absolutely nothing. We scheduled this hearing test at 5:30pm in the evening so we could both be there. And that was another day that our lives changed. Next thing we know; we are in a sedated ABR the next morning. As the audiologist and the pediatric ENT walked into the room and shared the results. They said words that we never imagined we would hear. We were stopped cold, and life stopped. We second guessed everything we had ever done. What did I do wrong, while I was pregnant? Was it the IVF? Was is the football games we took her to, or was it the band concerts we attended? What happened and why? We tried so hard to get you here, and we failed you? We mourned and grieved what we thought we would never have, and we were thrown into this new world. Will she be able to speak? Will she be able to go to school, to college, and what will her future look like? She can’t hear??!!

You took every doctor’s appointment, every blood draw, every therapy session, every fitting, and surgery like a rock star. We were in awe of you. You were 20 months old when you were diagnosed with hearing loss. You were fitted with hearing aids, and on New Year’s Eve 2010 we got the call with our answer. You inherited a gene from both me and Daddy. Your hearing loss was due to Pendred’s Syndrome. This meant you would have a high probability of completely losing your hearing as you got older. Your right ear progressed to profound and in May 2011, you became a recipient of a cochlear implant.

You worked so hard. You took every therapy session in stride. You were enrolled in a special school and you worked so hard at the tender age of 3 from 8am until 3pm every single day. We will never forget you standing on stage, the day of your graduation and doing your speech, and we sat there with tears of pride streaming down our faces. And we realized at that moment, you could do anything. You were 4.5 years old. That day would not have happened without Lilia and the amazing teachers, therapists, audiologists, doctors, and incredible group of amazing families we met along the way. Lilia’s dream team. Mommy and Daddy’s dream team.

You are now 8 years old. Nothing has ever slowed you down. You relish in the fact in teaching your family and friends about your special ears. Your confidence and your acceptance of who you are is something I wish I could bottle and share with the world. Your kind heart is infectious, and your smile lights up a room.  You love your family and friends. You love playing outdoors, music, cooking, reading, dancing, ballet, and singing at the top of your lungs. Your violin teacher is impressed with your ability to hear tone and to read music. You continue to thrive as a student at the Atlanta Ballet. You are the best big sister, and an incredible example to your twin brothers. You are also a role model to one of your brothers who also has Pendred’s. You continuously amaze us.

This past fall you auditioned for a tiny part in the Nutcracker. You were chosen to play one of the mice. On a remarkable December snowy evening in Atlanta, we sat on the second row at the Fox Theater and through our tears you make your debut. You did it! You never looked back, and you worked so hard to get there. Thank you God for the many blessings that been woven into our lives because of this hearing loss journey. Thank you dream team. Thank you Phonak and thank you Advanced Bionics. Thank you Lilia for your relentless focus, for your strong will, and thank you for introducing us to such an incredible world through your eyes and special ears.

Love always and forever,
Mommy and Baba Joon
(Laila Lawrence "Mommy" is a Parent Guide with GA H&V, GBYS Program.)


Ga H&V, GBYS February Love Letters Blog Event You've got mail! #1

Ga H&V, GBYS February Love Letters Blog Event
You've got mail! 

To our precious Alec...the "baby" of our family,

 Alec, for so many years I prayed for a child to complete our family.  God picked you out just for me and he had you grow in my heart.  When I received the phone call that a young woman had selected me to be your mommy, it was one of the happiest days of my life.  On June 28, 2001, the moment you were born the doctor immediately placed you in my arms and I knew that my life was forever changed for the better.  My baby boy...I made a promise to you that day, that I would place you before myself, be your biggest cheerleader in life, we would laugh endlessly, I would lift you up in times or sorrow, fight for you...lay down my life for you.  That day, God knew that I would make those promises to you...and HE knew that was why he had picked me to be your mommy.  There would be obstacles that you would face in life but we would face them together.  From the moment that I heard the doctor's say the words, "deaf/hard of hearing", I looked at it as a blessing.  I believe that God does not give us more than we can endure and through every challenge we face there is a lesson to be learned and you then have the opportunity to bless someone else.  Little did I know that God would use you to teach me too.  Through hours and hours of therapy...private schools...special education...deaf/hard of hearing specialists...speech...surgeries...etc., I watched you grow and learn and succeed.  Success was never an option for you.  The determination that you had within you was admirable to everyone who met you.  I didn't have to teach you to do your best...give it your all...not take "NO" for an answer.  My sweet boy, you had those gifts in you all along...you taught me.

Look at you now...16 years old...driving...a fantastic percussionist...marching with the East Coweta Marching Indians, one of the most well-known marching bands in the state of Georgia...invited to Georgia Tech for a summer Engineering program...Advanced/AP student...I could go on and on.  Alec, you are a role model for all children who are told that they won't be able to do something because they are different.  Of all the accomplishments you have achieved in your 16 years, what I am most proud of is that you embrace your differences and teach others compassion, acceptance and kindness.  I thank God every single day for the gift of you.  I am so excited to watch you change the world.  

"For I know the plans I have for you," declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future."  Jeremiah 29:11

I will love you forever, I will like you for always, as long as I'm living my baby you'll be...

Janne' Sharpe is a Parent Guide for GA H&V, Guide By Your Side Program


Georgia Hands & Voices, GBYS Feb. Love Letter Blog Event

Georgia Hands & Voices
Guide By Your Side
February Love Letters Blog Event

February, the month of love, is a perfect time for parents to write a love letter/note to their children who are Deaf/Hard Of Hearing to let them know how 
inspiring, amazing, & special they are!

We would love to share them on our GA H&V, GBYS blog. http://gagbys.blogspot.com/

Email love letters/notes (a paragraph is just fine) to Scarlett Giles, GA H&V, GBYS Coordinator sgiles@doe.k12.ga.us.
 Email letters anytime between February 1st & February 28th. Frequently check our blog as we will try to upload letters 2 to 3 days after you email them.


"So this blog is not about my hard of hearing child and his successes in spite of his hearing loss; this blog is about me and the present day experience of watching my little boy grow up…"

I have been hesitant to write anything on our GBYS blog in the two years we have had it up and running. I have been thinking and analyzing what exactly I was hesitant about. I think it has to do with my sense of vulnerability. I love to talk and carry on conversations and I am not afraid of opening up with people. However, putting my thoughts and feelings out there for anyone to see is a little intimidating.

 If I am being completely honest with myself, I would admit that there is a bigger reason. And that has to do with the stage of parenting I am currently in. Parenting teens...yikes! Actually, it has been very rewarding watching these little babies of mine grow into their own unique individuals (despite the moodiness and typical teenage ways!). This is the real hesitation of blogging; I have to be careful not to cross the line of what is me and what is them. My son would not mind me sharing that he has severe hearing loss that he wears two hearing aids and that he was diagnosed at age 4. He would not mind me sharing that he is a sophomore in high school that he is bright but does not always feel like studying and doing homework. He would not mind me bragging on him a bit that he is a pretty good baseball player and played on JV and Varsity this year and is now playing on a travel summer team. OK, OK, he probably would mind me bragging on him! But he is no longer a child and I don’t think it is fair to share the struggles he has had due to his hearing loss. It is too personal to share his feelings, fears and challenges of being a teen with hearing loss. He is a separate individual from me and that is his “stuff” to share with whoever he chooses, when and if he chooses.

As all mothers experience, it’s sometimes hard to let go of our little ones and it can be difficult to not always be in charge and to realize that you no longer can or should be making all decisions for them.  Or to remember to let them do things for themselves even if they make mistakes. It’s such a strong urge to protect our kiddos- especially if they have hearing loss. (Besides having my almost 16 year old son and another 8 year old son, I also have a daughter leaving for her freshman year in college so the struggle has been very real for me lately!!) 

So how can I blog about hearing loss without stepping in to my son’s personal territory? That is what I have been thinking on before sitting to write this. I can go on about my fears of letting my son go out into the world without me there to protect him- what if someone doesn’t realize he can’t hear them very well? What if he loses his hearing aid or something isn’t working and he lives too far away for me to take care of it? What if he takes off his hearing aids at night and doesn’t hear something going on while he is sleeping? The list goes on and on… But, honestly, it doesn’t matter if a child has hearing loss or not, I believe mothers will always worry about letting their children go. Letting go is the next step in my parenthood and, although difficult at times, it is also exciting and fun to see the people they are becoming. So this blog is not about my hard of hearing child and his successes in spite of his hearing loss; this blog is about me and the present day experience of watching my little boy grow up…  

Kelly Cashion
Parent Guide, Georgia Hands & Voices Guide By Your Side Program


Learning It, Living It!

Hello Parents of D/HH children,

I titled this post "Learning It, Living It." I have learned a lot from two conferences I attended these past few months and I want to share with you this info. I have been "living it" as well which refers to the world of hearing loss. Two of my three children are Hard Of Hearing. So at these work conferences, I am learning it while living it.

In September, I attended the 13th annual Hands & Voices leadership conference in Estes Park, Colorado. Wow, the view and fresh, thin, hard to breathe in air! This was H&V's 20th year celebration. H&V was established in Colorado in 1996 with the mission statement, "What works for your child is what makes the choice right." I was there as a parent & as a Parent Guide through my work with the Georgia Guide By Your Side Program.  Friday night we opened with a powerful intro mixer after dinner. Jonah Berger, owner of The Rhythm Within, gave us all (hearing, Deaf, deaf, & HH) music instruments such as shakers. His message was not only the power of music bonding people, but that our Deaf/HH children can 'hear" the music whether it be through vibrations, visual cues, or via assistive technology. Saturday, the first Plenary was "In the Hands & Voices Beginning: The Genesis of Genius." The three women who helped start H & V: Leeanne Seaver, Cheryl Johnson, & Janet DesGeorges, did a poetry slam of the story of how H&V came to be. The title, 'Do it anyway' meaning above all odds & obstacles do what is in your gut and heart.  I wish I had it on video...will look. Plenary II's, The Nebraska Way: Collaborating for Success, speaker was John Wyvill from Nebraska. He did a very eye-opening activity. He asked us to raise our hands if we knew who was running for president. Everybody did. Then he went from national, to state, to local official knowledge, and people started putting their hands down. Is point was a great one in that laws that affect our children directly and on a daily basis come from our local governments. He wanted to challenge us to become knowledgeable of our local officials and to collaborate with them for advocacy of our D/HH children. I loved the part where he said don't go ask for favors...invite them to your events just to educate them, build that relationship and then over time maybe they will be able to help you out legislatively. Saturday night is bonding time. We have what is called "up-time activities." Conference participants got to choose from nature walks, jewelry making, wine tours, & Stanley Hotel Haunting tour. On Sunday, the last day, Plenary III was about Support Stewardship: Self Care & Sustainability. Jessica Dallman talked about common pitfalls of working in a role that supports other people, rewarding but mentally taxing. We ended the conference with what is called, "The Naming Circle." It's always the most intimate & emotional time. I always want to capture it in a picture or video, but it's so personal I never do. We all hold hands and as the microphone is passed around you say (lift up) your Deaf/HH child(ren)'s name(s.) We are standing in that moment and using our voices to lift up those that don't have a voice (literally or figuratively.)

In October, I attended the 7th International Pediatric Audiology Conference in Atlanta, Georgia. The theme was A Sound Foundation Through Early Amplification 2016 and was sponsored by Phonak. I professionally went as a Parent Guide for the Georgia Hands & Voices Guide By Your Side Program. Below are the notes that I took. I want to share with my hearing loss moms and people in the field. I did my best to interpret the facts right even though sometimes the information was heavy in Audiology, and as you know I am not a doctor. The conference had many personal moments for me as well, because I am a mother of two children that have hearing loss. I wanted to go to the conference to learn more about emerging technology to share with our Guide families and for my personal kids. After, the first day, I was very affected by what I had heard. Everything they talked about in facts, statistics, & technology translates into my daily life.  I live what they preach. They were talking about my family. I was humbled & appreciated this group of professionals that had dedicated their life’s work to helping our kids. I was expecting an air of boasting at this conference about technological advances, afterall, the conference was sponsored by a technology company, Phonak. They were very proud& excited about how far technology has come, but I was dumbfounded at how they talked about technology exceptions, failures, & loopholes. They really owed their shortcomings and strived for a better future for our children.  So I learned a lot , I appreciated their dedication, but in all honesty, this conference really had me questioning have I done enough to help my own children, especially in the classroom. Notes below. Like I said I wrote down speaker’s statements and all of it is heavily based on research which they showed via graphs/diagrams/case studies. Disclaimer-My notes from the conference were written as factually & objectively as possible. I have included my "mom opinion notes" which is my opinion or interpretation of these facts. They are my personal opinion not that necessarily of H & V.

Day 1:  Conference

1. Conference Opening-Keynote-Music, Hearing Loss & Cochlear Implants: The Next Frontier by Charles Limb

  • Music is a tool for hearing. Music has a broader range than speech. Hearing aids filter so might not hear music as clearly. CI Users-not hearing music great like pitch and tuning. Musical emotion is altered in CI users because not hearing major & minor…just fast and slow tempos. Beethoven was profoundly Deaf by the time he wrote the 9th symphony. This is amazing based on research mentioned above. He lost hearing, but already had trained the brain musically.  His brain was still “hearing” even though he wasn’t’. So this guy wants to focus on music as a tool for hearing, because he believes music is very important to the brain. Solutions-personalized pitch mapping & Music training for kids. His example-He said that white cats are prone to be born Deaf. He showed a video of a cat that got an implant. The cat only would respond to the song that was associated with him getting food. He showed no response to other songs. Connecting that the brain can be trained via music. 
  •  My Mom opinions-I felt sad and did not know that CI users were not hearing music like hearing peers. We think it is cute that our daughter sings & hums out of tune around the house, but sadly it might be reflective of how her hearing aids are translating music to her. They showed a couple of videos of adult musicians that had lost their hearing in adulthood and they were upset that they had lost the music fine tuning that we take for granted. I also know that many of us music lover moms were concerned when we found out about our kids. We did not want them to miss out on the music. The positive is though, they hear music, the technology community is working to fix these issues, and they are also focusing in on the importance of music. 

2. Session 1: Back to the Basics: Current Approaches in Infant Hearing Assessment

  • The Use of CE-Chirp Stimuli-Yvonne Sininger-CE Chirp is a stimulus that reorganizes time of spectral stimulus to synchronize cochlear response. If I can correctly interpret this, she is saying this is new technology reading for more accurate ABRs. She also showed the cochlea and where the ranges are found which was very interesting.   So you can personalize it by seeing which part of your child’s cochlea is affected  while looking at your audiogram.
  • OAEs-Carolina Abdala-OAEs are low level sounds produced in the cochlea. When sound stimulates the cochlea, the outer hair cells vibrate. The vibration produces a nearly inaudible sound that echoes back into the middle ear. Healthy hair cells are required to produce oticostic emissions. Cochlea makes normal sounds as well. 2 types of OAEs distortion (healthy cochlea creates combination tones) & reflection (natural biological roughness of cochlea meaning it has natural bumps.) So the OAE test is checking for this. What affects the test? Interesting was Aspirin, cochlear immaturity, aging
  • My mom opinion-notice that there was no talk of “well maybe there is fluid in the ear from a c-section” that we have been told ourselves or parents commonly tell us the newborn hearing screeners say this to them in the hospital. I have read that fluid can be present, but we find that it either sets parents up for a false hope or a lack  of urgency.
  • ABR & OAE both needed for hearing loss confirmation. OAE screening does not test all frequencies and has a 90% hit rate for detecting hearing loss IF BEYOND 40D.  Reflection emissions come from peaks and can detect mild hearing loss. OAE’s miss mild hearing loss many times hence why they suggest doing ABR & OAEs.
  • My mom opinion-My oldest failed the OAE hearing screening in the hospital. Two weeks later he was given it again and they said “passed”, but at the age of 4 he was diagnosed with bilateral high frequency hearing loss. So I would like newborn hearing screenings to do ABR & OAEs in hospital or if they fail the lst OAE then the follow up should not be another OAE…it should be an ABR.
  • Bridging the gap between early hearing device fitting & behavioral assessments-Kevin Munro- He is from the UK. He started with a powerful statement. “36 families during this conference will find out they have a Deaf baby.” England was the 1st country to have universal hearing screening program. 10 months was avg. age in the past to get Hearing aids. Now it is 2 to 3 months. Parents want to be reassured that HA are making a difference. Parents have a lot going on.
  • Infants, Auditory Steady-state responses-Susan Small from Canada- Her talk was making a case for a better system than ABRs called ASSRs (auditory steady-state responses.) ABR-brief tones (new version is using Chirps which I already discussed above), takes a lot of skill to read and need training, subjective, where as ASSRs are frequency specific, objective,  takes 2/3 the time of an ABR, and you can do both ears at once.

3. Session 2-The School Age child
  • Understanding Listening-Induced Fatigue in School Age Children with Hearing loss. –Ben Hornsby- WARNING TO PARENTS-This was the toughest presentation I sat through. This researcher was interested in how fatigued our hearing loss children are. He showed many graphs and data and based on that he said something shocking. Fatigue sometimes for our children is greater than of a chronic ill child with diseases such as cancer or MS!! Physiologically ,Stress is needed in order to avoid depression. Cortisol is regulated by hypothalamus and levels go up when stressed. Cortisol is rapidly released when you wake up and then declines through the day. Abnormal cortisol caused by stress. HL kids have higher cortisol awakening…saying burnout stress like adults. Listening fatigue can lead to behavior problems. Relax, avoid high fats, & exercise.

  • There’s a Brain between those Cochleae-Dawna Lewis-This researcher had  been in the field for a long time and was talking about how she personally and the medical community has started to understand more about how the brain hears not the ear. You could check out Boystown National Research hospitial https://www.boystownhospital.org/. Bilateral HL hard to focus and pay attention to 2 speakers & noise. Unilateral HL have localization problems.

  • The Path to Self Determination-Cheryl Johnson (Yes-that is our Cheryl from Hands & Voices National.) She talked about self-advocacy. Developing an Identity-get groups of D/HH peers together. Disability is not a deficiency, but a difference. The group of kids she surveyed –Only 12% using FM-why? 50% social reasons, then next was because didn’t see the benefit (Side note-I didn’t understand this, but I did later after I heard about how FM system needs evolving b/c classrooms are changing. However,Another speaker said that the FM system is still the most significant tool developed for HL kids.) , 3rd was mechanical, comfort, and support. Roger Pens the kids loved!
  • Hear the World Foundation-Dr seewald- http://www.hear-the-world.com/This man gave a dose of perspective in the room. Up until this point of the day, people had been focusing on advancing technology which is wonderful..but this guy told us about the Dominican Republic is just trying to get a hearing clinic up and running. If you go to the website below you can see the amazing work they are doing by providing grants to countries in order to help kids with hearing loss. On their about page- One of the biggest challenges is that 80 percent of people with hearing loss live in low- to middle-income countries and often do not have any access to audiological or medical care. In low-income countries, for example, only one in 40 people with hearing loss wears a hearing aid.
Day 2 conference:

1. Session 3-Hearing Technologies

  •  Influences of Auditory Experience on the outcomes of children with hearing aids-Mary Pat Moeller- Degree of HL and correlation of outcomes is inconsistent in research. What’s important is Duration of HA use, having HA, and linguistic input.  Outcomes Acronym- ACCESS (Audibility, carefully fit and closely monitored, consistently worn(  at least 7 to 13 hours a day for school age kids), environmental conducive, selected at-risk areas, service provision. The greater the HL, the poorer language outcomes are. By 6y of age we see kids have a major separation in language if aids aren’t benefiting them b/c of the ACCESS above. Need more than 10 hours of HA wear. If stop wearing them or inconsistently wearing them then outcomes are inconsistent. Research shows kids with mild hearing loss benefit by wearing ha and puts them more in the normal hearing language group. Grammar is at greater risk than vocabulary for our kids. Risk for underestimation of service needs can produced big differences by the time 5/6y old.
  • Teen Tech Users-Christine Jones- Kids are working more in groups at school now not the old teacher lecture style. FM system-teacher focused-old model. 80% of day kids are in speech & noise. 22% frontal instruction 34% group work. Survey done on kids age 13-18. 64% HA, 5% CI, 28% had moderate hearing loss, 50% used Roger, 50% used FM. Why do you like using FM or Roger- 1. Hear teacher, understand peers, media. 2. Improve confidence 3. Focus on attention, 4. Better grades. Less important for them was being tired or use because their parents want them to  J. Reason why they stopped using this important assistive technology? 1. Cosmetically, the feel, didn’t see benefit, don’t hear the peers. Note-they didn’t mind giving the fm to the teacher to wear. So this researcher found that this technology was beneficial, but self consciousness played a role in them not using it. So maybe some confidence building. The ones that said did not see benefit is not b/c the technology is not beneficial it’s because of this ladies whole topic of how the classroom has changed. FM system might work in younger years, but they have come out with Roger Pen which has directional microphones and Roger Touchscreen mic that is used for small group settings.
  • My mom opinion-This speaker had me really rethinking use of technology at school. We really love the FM system at school and see it’s great importance…..however, If only a small portion of the day is the teacher talking then do I need to have other assistive devices for small groups etc?
  • Hear well or Hearsay?-Jace Wolfe-He talked about auditory brain development and how crucial it is to implant and aid early. A cat’s critical period was before 5 months. They implanted after that and there was significant delays. Kids after 3 years will experience delays, but earlier the better for outcomes. Dynamic FM is better than a traditional FM. Outside the classroom, kids really struggle-in the car seat, on bus, in stroller, shopping carts. There distance away from you could also be helped with a personal device such as Roger.  Surveys say that the most helpful device was in this order : Roger Pen, Roger Touchscreen, Minimic 2(omnidirectional), Minimic, just Has.
  • My mom opinion- I am thinking now about personal assistive devices at home and at play such as in sports.
  • Technology for Unilateral hearing loss Panel- Profound UHL affected speech and language. Causes of UL-cochlear nerve deficiency (something about use to think this was mumps?), inner ear malformations. No firm conclusions can be drawn on whether to implant UHL. *No device restores normal hearing…something we need to be honest about to parents…the panel said. Then they debated CROS hearing aids for UHL. If I am right it is where HA wore on good ear and transmits to poor ear. Most on panel were not in favor of them due to losing audibility with noise and distance. CROS aids not recommended until a child is able to control their environment and turn different settings on and off. One doctor stood up and said that he has seen kids indentified early having UHL and cochlear implants were successful. And then added…What is success for the family? To be able to hear, talk, or both. Oct 22nd next year is Pediatric conference on Unilateral Hearing loss in Philly.
  • Parent-to-Parent Support-Shelia Moodie from Canada. Evidence of course shows parent support is helpful. She had a model for family based early intervention which included this relationship between the supporting parent and the learning parent. 3 categories under this plan: well being(child self determination, participation, goals, emotional support), knowledge(impacts, advocacy, system navigation, education, transitions), & empowerment(competence, confidence, problem solving.)

Day 3- conference

1. Case Conferences & Looking Toward the future

  • Hearing aid fitting in Canada-Marlene Pigeon – Get ready for this amazing process in Canada. In Canada this was an example of their process-Day of diagnosis-they do a CMV test, genetic test, ENT referral (appt within a month). One week later-communication development plan, av therapy partners once a week, counseling for family, and visit home/daycare. At 3 months get HA (fitting audiologist and av therapist work together.) Most babies fit with FM capability soon after..wow! Track speech. Help in transition meetings. 
  • Auditory Brainstem Implantation in children-Craig buchman- 3 in 1000 babies have HL. $1 mill in a child’s lifetime is the cost of not “treating them.” Which I understood what he meant. the figures show that if they would pay for hearing aids on the front end and focus on early intervention it saves the state special education on the back in.  Criteria for ABI-sev to profound SNHL and other requirements that he said too fast. 2012 FDA approved. 2013-1st child implanted. Results of 5 kids at his clinic that he implanted with ABIs: 3 had CIs before, 2 to 5 y in age, 2 of the 5 had CHARGE syndrome. All use total communication. 2 had complications of CF leakage & meningitis…but lived. It gets real here: 3 years later-all have AUDITORY AWARENESS. They WILL NOT establish oral language only environmental awareness. Limited speech perception. Then he talked about based on these outcomes you have to have pioneer spirit parents that’s desired outcome is not listening and spoken language but auditory/environmental awareness. Kids will need visual cues as well…some of his patients use Cued speech, some sign language, some SEE.
  • My mom opinion- He showed us pics of the surgery. It seems more dangerous that CIs. It’s outcomes are not like CI users who are obtaining language. I have had one family asking me about this procedure and I had to quickly read up on it.  It seems really high risk for small outcomes, but we are all on our different paths. They are hoping to also 3d print cochleas in the future.
  • Next-Gen Newborn Hearing Screening-Cynthia Morton –This lady is a geneticist. Fortunately for me I was a biology teacher so I could understand all the language. Why is genetic testing important? Some facts and a little genetics lesson she gave: Deaf x Deaf mating results in 90% of time hearing kids. Most Deaf babies are born to hearing parents. 50% of HL found in racial/minorities. 1 in 2 cases genetic. 1 in 4 from maternal complications etc. 1 in 3 over 65y of age have HL. In 2030 20% of population over 76y. More prevalent in males. Complex trait. Conductive is Outer & Middle ear. Sensorineural is inner ear. If genetics caused your child’s hearing loss ( they can test for 123 of the most common genes for Hearing loss)  30% of them are Syndromic(meaning the child has a syndrome) and 70% are Nonsyndromic ( Autosomal Recessive 77%, Autosomal Dominant 22%, X linked, Y linked, Maternal/mictochondrial.) Most common of the recessive, nonsyndromic hearing loss is GJB2.  the gene that makes the protein Connexin 26 which maintains potassium levels in the ear for it to form correctly and for cells to mature in the cochlea. 5% HL is Dominant syndromic (Waardenburg syndrome, Branchio-0t0-renal syndrome, neurofibromatosis type II, Stickler syndrome, Treacher-collins syndrome.) http://www.babyhearing.org/hearingamplification/causes/genetics.asp. 20%HL is recessive syndromic (Usher syndrome, Alport syndrome, Jervell and Lange-nielson syndrome, Pendred syndrome.) Less common syndromic Hearing loss types (CHARGE.) Then the speaker moved into Newborn hearing screening and how she felt genetics testing should be automatically included. 98% babies screened in the us. 45% loss to follow up. One reason to know the reason for the hearing loss is to give you a better sense of your communication options. For example: GJB2 HL kids benefit from a cochlear implant whereas PJVK HL kids carrying that gene have been found to be harmed more if amplified.  In the past genetic testing was not as common and people would have to spend a lot of money and wait time to find out if their child’s hearing loss was genetic. Now they are arguing that every HL child needs genetic testing. New program called SEQaBoo (SEQuencing a Baby for an Optimal Outcome) will translate high-throughput genomic approaches into routine newborn screening for hearing loss (HL). http://grantome.com/grant/NIH/R01-DC015052-01. Another upcoming research project is the Kids First Gabriella Miller https://commonfund.nih.gov/KidsFirst/overview
  • My mom opinion-well it was awkward at times to be in a room of people talking about your family. Our child was tested and she has Connexin 26 hearing loss. As a mom I felt like I wanted to find out reasons why she had hearing loss more than my husband, because I carried her and wondered if I had done something wrong in pregnancy.  I think genetic testing is important to make sure the family is not missing a syndrome with early diagnosis.  The costs of genetic testing is going down so that is good .
  • Audiology in the age of Cloud & Apps-Francois Julita- This guy was the tech/app guru. He talked about digital transformation. I am going to just list all of the web videos he showed below, but his purpose was to get the audiologists to start thinking about the evolving healthcare field. For example, what if in the future and an audiologist could adjust hearing aids/CIs from app using info the technology records and sends via the cloud. One audiologist stood up and said let’s invent an app to find a lost CI or HA…great idea! -MyCareApp, Twine, HealthTap, Orthocare, Teleaudiology by phonak, soundwave, mimio, hearables, dash, lumafit. And lastly, watch UNI by motionsavvy. It’s a new tablet that ASL users sign to and the table translates it into speech so they interact with a hearing child without that child having to know sign. https://www.youtube.com/watch?v=sqAbOZMZp_E

2. Closing—Angela Pelosi- Looking into the past for a glimpse into our future- She talked about the past…got to watch this video of old hearing aid/glasses!! 1950s https://www.youtube.com/watch?v=nJbHyxSI2t4. In the future-bioprinting ears for microatresia & 3d cochlea.

So in summary, the conferences were eye opening, hopeful, depressing, reflective, & a great learning experience overall. Let us all keep learning as we keeping living. -Scarlett Giles