Homesick

Recently, Amelia told me to play a song she had heard called "Homesick" by Dua Lipa. Ironically, I too had stumbled upon the same song in a YouTube rabbit hole. Amelia is my mini-me so I am not surprised we both love the song. The words really hit me today and thus created a space for me to write.

HomeSick by Dua Lipa lyrics:

Here, where the sky's falling
I'm covered in blue
I'm running and I'm crawling
Fighting for you
When the rain stops, then, darling
What will I do?
And I know I go all in
But why do I?

You give me a reason, something to believe in
I know, I know, I know
You give me a meaning, something I can breathe in
I know, I know, I know
It's a bittersweet feeling
Longing, and I'm leaving
I go, I go, I go
But I wish I was there with you
Oh, I wish I was there with you

There's a crack in my window
A bird in my room
Angels all over
That watch over you

Those words are very powerful to me right now. Most of you know that I work and live in the Deaf/Hard of Hearing world in which Amelia brought me into 11 years ago. I have been dealing with some powerful people in my work life who do not see my program's value nor my value as even a person. Over these past few months I have wanted to run, let go, & give up. However, I did not come this far and learn tough life lessons to sit in silence....... it's just not an option for me. They may have power, but I have will power. "I'm running and I'm crawling. Fighting for you" Amelia and other children like you. Those of you who know me know that I speak in lyrics and love music. I saw a phrase the other day that says, "You can cage the singer but not the song." That is where I feel like I am right now, in a cage, but my message, my story, & my truth will get out through the "crack in my window or "A bird in my room" because there are "angels all over that watch over you."

Since I started this blog to keep you informed of Amelia I will give you an update on her. She is in 5th grade & will start middle school next year!  She is mainstreamed, but has a 504 plan with accommodations such as the FM system. Her hearing has been stable all of these years, however we know that could change at anytime.  I learned to not live in fear on that cliff. For those of you who are new friends to our story, our family has the gene for hearing loss. Peter's Grandparents were Deaf & signed. Amelia has moderate/severe bilateral sensorineural hearing loss which we found out about shortly after birth. Colin was late identified at 4y with bilateral sensorineural hearing loss mild high frequency only. Amelia spent years at the Atlanta Speech School & our family spent years making sacrifices to make sure Amelia could communicate with us  & the rest of the world. She deserved what everybody deserves........a "voice."  Amelia can be labeled many things: beautiful, Hard of Hearing, stubborn, fierce, but above all she carries a label that was meant for her.........a fighter. 

My Reflections from H&V Leadership Conference in D.C. 2019

 Reflections from H&V Leadership Conference D.C. 2019
by GA H&V, GBYS Program Coordinator-Scarlett Giles

*I wrote this for my work blog gagbys.blogspot.com 
The Annual Hands & Voices Leadership Conference was this past September in Washington D.C. at Gallaudet University. 
Gallaudet is the world's only Deaf/Hard of Hearing University. 

GA H&V Guide By Your Side Team at the Conference
Left to Right: Kelly Cashion, Scarlett Giles, Katie Hope, Nadia Martinez, & Beth Flaherty

"Learning in the Lounge"

Like I organize my holiday decor, I must also organize my thoughts by coming up with a theme. The theme I came up with for this blog post is "Learning in the Lounge." The most impactful moments/learning for me on this conference trip took place in what I will call "the Lounge." "The Lounge" is those moments that are unstructured & even sometimes pushing the boundaries of comfort.  My work team knows that I am a very "structured" Boss with due dates, emails, etc....ok, so I can be a Micro-Manager. I am a planner. But my team will also tell you that I will push boundaries in a unstructured sometimes chaotic way.  Before I give you my Lounge examples, the Conference sessions & presenters were amazing! 

I jotted down many notes, but I will share 3 quotes from the sessions that impacted me:

1. Lead from a place of empathy, not sympathy.

2. Take the Journey with me not for me.

3. When you forget your "why" you lose your way. 

My "Learning in the Lounge" Examples

1. Lounge Traveling- You sure learn who people are when you travel with them. We all learn each other's picky eating habits, bedtime rituals, & superstitious ways.  By superstitious ways, I mean if you fly with me you must touch the outside of the plane as we board. I had a snickers bar at the airport that said, "Who are you when you are Hungry?"....Hangry people cannot suppress their mood! Below is a picture of us eating authentic Chinese food. I learned a lot as I watched people try to say the name on the menu, ask questions about unknown words, & be delightfully surprised at the taste. Another picture below is our name badges. We got to decorate them & they give you a glimpse into each of our personalities. 

We were able to decorate our name badges.....it tells you a lot about a person. 

Chinese food in Chinatown 

2. Lounge Sightseeing- This trip we flew in a day early for some D.C. sightseeing. I have a friend from college that lives there and took us around the monuments.  Besides the size of the monuments, their words had an even bigger "Lounge learning impact." "Freedom is not Free" sat outside the Korean & Vietnam memorials. 

Deshonda Washington, Scarlett Giles, & their 'personal tour guide of the day Juan, aka Scarlett's friend from college. 

Deshonda Washington (GA H&V Executive Director /ASTra Program Director) & Scarlett Giles touring Washington D.C. 

The MLK Jr. memorial site had many great quotes to ponder. "Out of the mountain of despair. A stone of hope." was inscribed on the statue of Martin Luther King, Jr. as shown above. Another quote by King was "The ultimate measure of a man is not where he stands in moments of comfort and convenience, but where he stands at times of challenge & controversy. The most touching "Lounge moment" was when the three of us were lounging on the stairs of the Lincoln Memorial. Juan said, "You see all those people looking out to the reflecting pool/Washington monument? They are missing the best part. They are standing right where MLK Jr. gave his "I have a Dream" speech.  It’s actually inscribed on the ground, but most people never see it.” The picture above shows the moment when the crowd cleared. Deshonda walked up and looked down. We stood where MLK Jr. stood! As you looked out at the vastness you could hear in your mind the crowds roar back in the day, and we know today that his words traveled way further than those steps.  

Deshonda & Scarlett at the Nat. Museum of African American History

My favorite Lounge Sightseeing moment actually lasted 3 hours. WE, a southern white girl & a southern African American girl, walked together in the National Museum of African American History & Culture.  We walked the highs.....pop culture-Whitney Houston, James Brown, Michael Jordan. We descended literally in an elevator into the lows.... slavery. The only way out was to ascend upwards.  The only way through was to acknowledge it & learn something from it. 

3. Lounge Uptime- Saturday night at the conference is always downtime, but Hands & Voices calls it "Uptime."  Uptime is when you choose to attend a planned social event with fellow conference goers. History tours, local culture, arts/craft fairs, etc. are among the choices each year. H&V also has a tradition to have everyone meet after Uptime at a local restaurant/bar for the ultimate stress relief/bonding......DANCING! It's breaks the ice so to speak. The wall flowers wish they had the nerve to dance & the dancers sometimes wish they had stayed on the wall.  The picture below was actually taken by Hands & Voices, Executive Director, Janet DesGeorges. She is also one of the founders of Hands & Voices. She is pictured in the right bottom corner. I love this picture because we are out dancing, some of us have never met as we are all from different states, but we had a great time bonding. 

GA H&V team (5 of us in the top right) dancing with other H&V members during Uptime.  

4. Lounge Intermission- Our days were packed with sessions, but there was a big "Lounge Moment" for me during a session break.  I went to a presentation by Kentucky H&V in which they had horses & Horseshoes (for luck)for table decor. Afterwards I saw them on the elevator and told them that my daughter Amelia wanted me to bring back her a horse from DC. The next day the ladies from Kentucky H&V handed me their table decor horse and told me to give it to Amelia. Their chapter name for the horse is Harvey. Guess what? HARVEY was Amelia's grandfather whom had Deaf parents. I thought, Hello Harvey from Heaven....message received. 

Picture to go with Kentucky H&V Horse Story above

5. Lounge Lunch Break- During our lunch break, GA H&V team members decided to do a self-guided tour of  Gallaudet University. We walked the campus and came upon a chapel. I, of course, urged everyone to follow me to see if the door was open. Not only was the door open, but we walked into a museum of the university's history. Reading about the political and social history the school had weathered through was touching. Below is a picture of  these amazing ASL hand statues that sat in the museum. I took a picture of each one & sent my two Hard of Hearing children their names in sign. 

Gallaudet University Museum 

In Gallaudet's Museum 

All of these "Learning in the Lounge" moments leads me to a concept I heard about at the conference. It's called the "Lollipop Moment." Many great people, like MLK Jr. had a dream, & as the quote above says, " We still have a Dream." The concept is we have dreams of changing the whole world, but what if you changed one person's world. The story goes in short (long version in video link below) a guy named Drew Dudley was passing out Lollipops at Freshman Orientation for a club cause. He gave one to a shy guy standing in line next to a girl who had planned to later that day tell her parents that she felt like she didn't fit in at the college and wanted to go home. Dudley then told the guy to give this beautiful girl the lollipop. Awkward moment ensued then laughter. 4 years later, the girl found Dudley & said you are the reason I stayed, because you broke the ice and made me feel like I could make this place my home. She also said by the way the guy you made give me the Lollipop has been my boyfriend for these past 4 years. Another year later, Dudley gets an invitation to their wedding. It was a "Lollipop Moment" Dudley did a simple act that had no impact on his life, yet it changed the life of someone else. Full video story link here  https://www.ted.com/talks/drew_dudley_everyday_leadership?language=en&fbclid=IwAR2lu0jmWueO_i2SJKjtg5ukboh21KU0IHn-13mheaoxtjuSFHtROIk6i_4#t-344431

Perhaps you might have changed somebody's life without even knowing it. Is there a "Lollipop Moment" that changed your life?  Did you tell that person? I thought about this concept today and I remembered of a Lollipop text message I received a few months ago from my dear friend and coworker Deshonda. I did a screenshot of the text at the time, because it was so kind & powerful. I hope she doesn't mind me sharing it, but she knows me......so I'm sharing it. 

Thank you Deshonda for giving me a "Lollipop Moment." Deshonda & I have had lots of "Learning in the Lounge" moments over the past 5 years.  In the Lounge is where the real dialogue happens. It's what our souls needs & it's what our community needs. I look forward to sharing more moments with my team, with our GA H&V community, & with H&V chapters all over the world. 
-
GA H&V, Guide By Your Side Program Coordinator- Scarlett Giles

GA H&V team that went to the D.C. Conference 2019

H&V Chapters from all across the United States drawing symbols that define their chapter, but unite us in one banner. 

My Personal Work Bio 2019 (GA H&V, GBYS)

Welcome Home & Welcome to Holland

I don't write on my blog as much anymore......sometimes there are days I should. Writing is therapeutic.

This weekend was our Georgia Hands & Voices, Guide By Your Side Retreat in Blue Ridge. On the way up, I had a moment of self-doubt as I now lead the program as coordinator. This was my first training where I was in charge of everything. I wanted to call my old boss, Terri, & say, "Tell me I can do this", but I didn't need to, because as I pulled up on the cabin I saw a car already there. Terri had come up for the night to bond & support!! By the end of a work retreat or a conference I can barely think straight, but I always leave feeling supported.  I am always comforted & reminded that I have a mama tribe.  The stats & the situations we discuss about our Deaf/Hard of Hearing children can be overwhelming. You know those phrases, "Practice what you preach, Work for a living, live to work?" Well......I live my work.  I provide families with resources & support along their hearing loss journey. I leave my desk & provide resources/support to my family who has 2 Hard of Hearing children living in it. It's exhausting to live what you work.  I have learned to navigate the parent hat vs. the professional hat, but it's always something of a challenge.  At the end of every Hands & Voices Leadership conference we do the Naming Circle.  I decided to integrate that sacred tradition into our GA H&V chapter training closing. It's like saying "Welcome Home"...a place where your heart is.  I tried to put into words how it works:

Closing- The H&V Naming Circle

The tradition that closes every H&V Leadership Conference!

We gather in a circle & hold hands.

We speak and/or Sign the names of our Deaf/Hard of Hearing Children.

It’s a speaking into existence a promise to never forget them & to always advocate for them.

We stand in a circle to see that our bond can never be broken.

We hold hands so you can feel that you have someone on this journey with you.

Remember: One of the greatest strengths of a nonprofit is that you don’t work for a living, you work for a cause. One H&V Dad quoted a movie saying, “What we do here echos throughout eternity.” 

We also had some new moms that we were training to be Parent Guides. They had never heard of the poem, "Welcome to Holland." I was given this poem in the beginning of our journey with Amelia & it was very helpful. It's all about perspective. So here it is: 

Lastly, I wanted to share a few pictures of my children. They have grown so much! 9, 11, & 13!

February Love Letter (Work Blog)

This is a post I wrote for my work blog  gagbys.blogspot.com

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)

Work conference-Living it while learning it.

On October  3^rd, 4^th, & 5^th I attended the 7^th 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/ So here you go
Day 1:  Conference

1. Conference Opening-Keynote-Music, Hearing Loss & Cochlear Implants: The Next Frontier by Charles Limb
2. 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 9^th 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 Amelia 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. 

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

1. 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.

1.  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 can 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 we all know the ending is that 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.

1.  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 1^st 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.
2. 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.

1. Session 2-The School Age child

1. 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.
2. 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.
3. 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.) , 3^rd was mechanical, comfort, and support. Roger Pens the kids loved!
4. 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.

• Side Note: (I thought about Sara Price, a Parent Guide, during this. Maybe we all can travel the world one day and help out with this organization.)

 

 

1. Day 2/ Session 3-Hearing Technologies

1.  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.
2. 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 Amelia’s 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 Amelia to have other assistive devices for small groups etc?

1. 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.

1. 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 22^nd next year is Pediatric conference on Unilateral Hearing loss in Philly.
2. 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.)

1. Day 3/Case Conferences & Looking Toward the future

1. 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. 
2. 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. 2013-1^st 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 is 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.

1. 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. Amelia 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 .

1.  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, please watch this touching video and I would like your opinion/feedback/emotion about this- 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 conference was eye opening, hopeful, depressing, reflective, & a great learning experience overall. –Scarlett Giles