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