education

United by Hearing Loss in Rochester, NY

By Lauren McGrath

Hearing Health Foundation (HHF) proudly attended the 40th annual Hearing Loss Association of America (HLAA) convention last week in Rochester, NY. Rochester, fittingly, is the U.S. city with the highest per capita deaf population and a vibrant hub for hearing loss accessibility.

HHF CEO Timothy Higdon and Director of Marketing and Communications Lauren McGrath were present at the city’s Joseph A. Floreano Riverside Convention Center to speak with thousands of individuals about the significance of hearing loss research and education.

The conference began with a keynote speech from psychotherapist and author Rebecca Alexander, who lives with Usher syndrome and has partnered with HHF Board member Sophia Boccard to raise awareness of the condition. Alexander cited her cochlear implants as a vital tool hat “helped her reconnect with life.” She also reminded the audience of the importance of requesting assistance. “Why are we so averse to asking people for help?” she inquired, reminding her listeners that no one can read our minds when we face difficulties with hearing, vision, or balance.

CEO Timothy Higdon and Director of Marketing & Communications Lauren McGrath at HHF’s booth in the exhibit hall.

CEO Timothy Higdon and Director of Marketing & Communications Lauren McGrath at HHF’s booth in the exhibit hall.

Chief of the Laboratory of Molecular Genetics at the National Institute on Deafness and Other Communication Disorders, Thomas Friedman, Ph.D., who was funded by HHF’s Emerging Research Grants (ERG) program in 1994 and 1995, introduced the conference’s research symposium on genetics and hearing loss. There are 142 genes known to be associated with deafness, and animal models (mice, zebrafish, and fruit flies) are essential to providing such evidence. 

Zheng-Yi Chen, Ph.D. (Mass. Eye and Ear; 1994 ERG), Patricia White, Ph.D. (University of Rochester School of Medicine; 1999 and 2001 ERG), and Hela Azaiez, Ph.D. (University of Iowa), provided supplementary insights about genetic hearing loss and the possibilities for treatment. Further research updates about hereditary deafness will be available in the Summer 2019 issue of Hearing Health in late July. 

In the exhibit hall, HHF had the opportunity to speak to individuals with hearing loss interested to learn about new advances in research, including exactly how a chicken is connected to potential cures for hearing loss and tinnitus. At neighboring booths, HHF met with representatives from like-minded nonprofit organizations and hearing loss technology providers.

Beyond the exhibit hall, guests participated in workshops focused on self-efficacy, hearing devices, assistive technology, health insurance, and safe travel, among other topics.

The convention buzzed with curiosity, knowledge and compassion. As always, HHF is grateful to HLAA for uniting many of the nation’s most dedicated hearing loss advocates in a valuable three-day experience.

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Ready to Take On the World

By Neyeah Watson

Beginning at age 4, I had ear pain that caused recurrent infections. My mother, worried, took me to multiple ear specialists, the fourth of whom warned these infections could result in a conductive hearing loss. At 7, I underwent a successful corrective ear surgery that eliminated my infections almost entirely. Though my hearing has been salvaged, I still endure frequent sinus infections and ear pain that require monitoring.

My personal experience makes me grateful Hearing Health Foundation (HHF) has long been a vocal advocate for early intervention for babies and children with hearing loss. HHF’s primary focus is on advancing hearing loss research to find new treatments, and I look forward to what will one day be medically possible for my aunt and grandmother who live with bilateral moderate sensorineural hearing loss. 

Because affordable direct patient services are needed to put HHF’s research findings into practice, I’m also greatly appreciative of organizations like The Sound Start Babies Foundation for Deaf and Hard of Hearing Children, a New Jersey nonprofit that exists to support families of babies with hearing loss during the most critical years of brain development. Public funding in the state covers only about one third of the costs needed for early intervention, and The Sound Start Babies Foundation goal is for all families to have access to this quality of care, regardless of their ability to pay.

Fun in speech! One of Sound Start’s little learners is excited to see how many jungle animals she can stack, while working on the concepts "above" and "below." Credit: Kim Reis.

Fun in speech! One of Sound Start’s little learners is excited to see how many jungle animals she can stack, while working on the concepts "above" and "below." Credit: Kim Reis.

The Sound Start Babies Foundation was founded as Lake Drive Foundation in 1997 by community volunteers and parents of children with hearing loss in Mountain Lakes, New Jersey. Inspired by the foundation’s history and mission, I was eager to interview a few representatives from the organization, Jessica Griffin and Kayley Mayer, who make this work possible.

Griffin, who is President, discovered Sound Start Babies™️ when her son, Ian, was born profoundly deaf. Sound Start Babies™️ was Ian’s early intervention provider and greatly helped her family through his hearing loss journey, which included his cochlear implantation at 10 months. In gratitude, Griffin joined the volunteer Board of Trustees in 2014 and was appointed President after two years of service.

Kayley Mayer is a Teacher of the Deaf and Program Coordinator. She began working for the Sound Start Babies™️ program in 2010, the first year the full-day, inclusive nursery program opened up. For her first eight years, she taught in a nursery classroom and provided home-based services for children with hearing loss and their families. Now, she is teaching in the classroom, providing family training to families, and  working on programming development. Although Mayer, unlike Griffin, does not have a personal connection to hearing loss, she finds fulfillment in the progress that families gain in their short time with program.

Griffin attributes members of the Sound Start Babies™️ staff, like Mayer, with her son’s preparedness for mainstream kindergarten this fall at age 6. Her goal as President is to make sure that every child who has a hearing loss has the same wonderful experience as her son. As Mayer notes, each impactful experience is unique. “Every family is at a different point when we meet them, but by the time the child and family graduate from our program, they are truly ready to take on the world,” Mayer says.

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We are all fortunate for resources like Sound Start Babies™️ that help children who need hearing loss intervention succeed developmentally. Hearing is a precious gift, and I learned at age 7 that your hearing can be stripped from you without notice. I am grateful my doctors and parents acted promptly to ensure my hearing was preserved, making sure I, too, could be ready to take on the world.

HHF marketing and communications intern Neyeah Watson studies communications at Brooklyn College. For more information about Sound Start Babies™️ and The Sound Start Babies Foundation for Deaf and Hard of Hearing Children, see www.soundstartbabies.com.

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Sharper Than They Expected: A Tribute to Nansie Sharpless, Ph.D.

By Neyeah Watson

Women and people with disabilities have been historically underrepresented in science. In 2014, individuals with hearing loss compromised only 1.2% of Scientific & Engineering degree recipients. Women represented only 29% of the science, technology, engineering, and mathematics (STEM) workforce as of the same year.

While these statistics remain low, women and people with disabilities have seen overwhelming growth in opportunity in the past 50 years, which we can attribute changes in policy, personal attitudes, and the success of some exceptional individuals. One such pioneering individual was Nansie Sharpless, Ph.D., a biochemist who lived with bilateral hearing loss. HHF has chosen to highlight her victories this Women’s History Month. Her motivation to push barriers strengthened the confidence society has in women in science today.

Sharpless was born in Pennsylvania in 1932. Though this year saw breakthroughs for women, such as the election of the first female Senator, Hattie Wyatt Caraway, and Amelia Earhart becoming the first woman to fly solo across the Atlantic Ocean, limitations remained. Women’s suffrage had just become a law 12 years prior, and the Equal Rights Amendment, which mandated gender equality and prohibits discrimination on the basis of sex, did not yet exist. During childhood, Sharpless gravitated toward science, mathematics, and education. Tragically, at 14 Sharpless contracted meningitis, a disease that was still considered fatal at this time. Sharpless recovered but was left with a profound hearing loss in both ears.

Credit: American Association for the Advancement of Science

Credit: American Association for the Advancement of Science

Sharpless’ hearing loss did not halt her academic goals despite the lack of accommodations for students with disabilities at this time. The Education of All Handicapped Children's Act—which mandated schools to provide students with learning, mental and/or physical disabilities equal access to education and to protect them from harassment and discrimination—was not passed until 1975.

Still, Sharpless defeated the odds. In 1960, only 35% of the total bachelor’s degrees achieved were women. In comparison to today, over 57.34% of total bachelor’s degrees are women. In 1954 Sharpless earned a bachelor’s degree in zoology from Oberlin College. Although Sharpless thrived in school academically, she struggled to listen in the classroom. She was fortunate to have classmates who assisted with her notetaking.

Sharpless faced similar communicative challenges in her pursuit of a master’s degree in medical technology at Wayne State University. She attended meetings, learned innovative techniques, and developed strategies to alleviate her learning obstacles.

At Wayne, Sharpless’ strong educational performance was unprecedented—and unsupported. Administrators were discouraging; in fact, the director of admissions for Wayne State University warned Sharpless she’d face unusual scrutiny in which she would be expected to achieve a perfect grade point average in order to prove that she could handle the work. Sharpless was undeterred and went on to receive her doctorate from Wayne as well.

After graduation, Sharpless was hired to conduct biochemistry research at Mayo Clinic, where she focused on the correlations between chemicals and mental disorders. Some of her most notable work includes the studying of the L-dopa metabolism in spinal fluid and its relationship with Parkinson’s Disease. Her research showcased the patterns of dystonia, a movement disorder, in response to L-dopa therapy for Parkinson's disease.

Sharpless was also fortunate to defy expectations by joining the Albert Einstein Medical College faculty as an associate professor. She was later promoted to the position of Chief of the Albert Einstein Medical College’s Neuropsychopharmacological laboratory.

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Sharpless passed at the age of 55 while still serving in the Chief position at the Albert Einstein Medical College. In her career, Sharpless published over 50 papers and penned 11 books. Through her triumphs, Sharpless illustrated that hearing loss did not limit her. She was able to utilize her passion for science to become a dominant voice within research and advancement for women and for individuals with disabilities.

March celebrates the journeys of resilient women around the world. Gender and disabilities have presented challenges to individuals, especially before protective laws were in place. Sharpless fought to be outside of the statistic, seeking her purpose within what she loved most—science.

HHF intern Neyeah Watson studies communications at Brooklyn College.

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Flying My Way

By Ryan Vlazny

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Airplanes and learning about their mechanisms have always made me feel alive. My longtime fascination with all things aerospace inspired my desire to work with computers for a living. But, at times, my hearing and vision loss caused some turbulence.

I was born profoundly deaf and later diagnosed with Usher syndrome―which combines deafness, retinitis pigmentosa (progressive vision loss), and problems with balance―at 8 years old.

Lucky for me, Usher lets me enjoy roller coaster rides with a perspective different than people with typical hearing and vision. I can more acutely feel the car’s ascent up the hill, the hang time at the top, the speed on the drops, the toggling back and forth on the track, and all the loops and twists in between. These sensations are most fun when I ride an inverted coaster―like my first “serious” ride in Oslo, Norway―with the track above me and my feet hanging in the air. I feel like I am flying.

My parents, heavily involved in the Deaf community, decided I’d learn Signing Exact English (SEE)―a manual communication system that, unlike ASL, matches English language and vocabulary―in place of spoken language. By the time I was in the eighth grade, I was fully emerged in mainstream classes, thanks to my parents’ commitment to my language development, and had undergone cochlear implantation. While I cannot understand spoken language with my cochlear implants (CIs), they allow me to hear laughter, birds, music, and the roar of a rollercoaster.

A few years after my CI surgery, airplanes replaced my passion for roller coasters. For my 17th birthday, I had the thrill of riding in an Pitts aerobatic airplane at the airport in Pompano Beach. The 20-minute charter ride felt like being on a roller coaster ride with 4,000 foot drops above the Everglades. The pilot, Jim, did a tricks that felt similar vertical loops on a roller coaster.

My mom and I took an (ordinary) airplane ride to Tallahassee when it was time for me to take the Florida Comprehensive Assessment Test (FCAT), a requirement to graduate high school in the state. There we spoke with government officials about making the test optional for students with hearing loss, and we were successful. Still, after three tries, I passed the FCAT even though the requirement had been eliminated.

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For the remainder of high school I continued on track, taking advantage of computer-related courses like web design and engineering. I was accepted to the Pre-Baccalaureate Engineering Program at the National Technical Institute for the Deaf at Rochester Institute of Technology (RIT), where I enrolled with a major in mechanical engineering concentrating in aerospace. Some math classes, especially differential equations, were too difficult, and with the support of my advisor, I changed my major to information technology (IT). Unlike with engineering, I felt I was able to fully understand and apply the concepts of IT.

As an IT student, I created a greeting card in Adobe Flash, a multimedia software program, about greeting a new student on my make-believe RIT World Airlines. The greeting card was even commended by the university president, Dr. William Destler in a one-on-one meeting.

Few college experiences compare with my opportunity to build my own airplane game in an application development class, though. The game simulated landing a plane, which other students found fun to play. Even though I wasn’t an aerospace student, I still got to enjoy some exciting plane rides at RIT.

Today I work as a Java developer for a financial technology firm, where I couldn’t be happier. I’m proud to be the pilot of my own career.

BIO: Ryan W. Vlazny lives in Pennsylvania.

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How One Institution is Changing South Africa’s Approach to Pediatric Hearing Loss

By Vicky Chan

Carel du Toit Center (CDT) has been at the forefront of hearing loss education for the past 45 years—offering a mainstream education and speech development programs for children aging from infancy to 10 years old in Cape Town, South Africa. Although an estimated 6,000 babies are diagnosed annually with permanent bilateral hearing loss in the country, early detection and intervention programs are extremely uncommon. CDT is one of the only institutions in the area that offers an early intervention program for children with hearing loss and their parents.

A young student with hearing loss. Credit:    Carel du Toit   .

A young student with hearing loss. Credit: Carel du Toit.

Because the damaging effects of hearing loss are widely dismissed by South African legislation, 72% of the nation’s hospitals do not offer any form of hearing tests and fewer than 1% plan to implement newborn hearing screenings. Consequently, 90% of newborns do not have access to a hearing test and families do not receive information about pediatric hearing loss.

Hearing loss is usually detected only after the child’s caregiver notices unusual behavior or speech and language delays. The average age of diagnosis for a child with hearing loss in South Africa is 31 months old, and the typical age at which one is first fitted with hearing aids is 39 months. This is well beyond the critical time period for a child's speech and language development, which depends immensely on the brain’s responses to hearing in the first two years of life.

To help parents understand their child’s hearing loss, the school provides a family-centered early intervention program in their CHAT (Children Hear And Talk) Centre. Coaching families about how to cope with hearing loss is a key component in teaching a child to talk. Parents are encouraged to attend weekly sessions at the CHAT Centre where they are taught to incorporate speech into their family’s daily routine so their child can continue to develop language and social skills at home. The CHAT also provides weekly sessions for children who are too young for school so they can be enrolled in an early intervention program as soon as possible.

“This is your journey with your child and you are absolutely equipped to teach your child to talk through listening,” one teacher says of CHAT. “It may not have been what you were expecting—but embrace it.”

The school employs more than 60 staff, including teachers, early interventionists, social workers, audiologists, psychologists, and speech therapists, who strive to create a natural environment that promotes listening experiences and intensive speech training. Students are fitted with the appropriate hearing technology and learn with the support of the school staff and their parents.

“I had a passion for special needs children and ended up in deaf education,” reflects an CDT educator. Echoing this sentiment, another teacher comments, “Teaching a child a new word or concept everyday makes it very rewarding. You are changing their lives on a daily basis.”

CDT understands that early diagnosis and intervention is the cornerstone for obtaining the best outcome for infants with hearing loss, which is why the center also partners with social services and South Africa’s State Health Department to provide equipment and personnel to test high-risk babies in the largest hospital in West Cape. With a mission to ensure all children in South Africa can function optimally in a hearing world, CDT is making strides to change outcomes for those with hearing loss nationwide.

For more, visit http://careldutoit.co.za/.

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Teaching on a Different Route

By Lauren McGrath

Assistant Teacher Ms. Tiana Brown with two of her preschool students at Clarke.

Assistant Teacher Ms. Tiana Brown with two of her preschool students at Clarke.

The clock moves toward 9:00 AM as two teachers oversee the listening check with their preschool students, ages four to five, to verify that their hearing devices are operating properly. A critical test for children with hearing loss, the check is step one each day for colleagues Ms. Kathryn Smith, Teacher of the Deaf, and Ms. Tiana Brown, Assistant Teacher at Clarke Schools for Hearing and Speech in New York.

Assured that all devices allow optimal access to sound, Ms. Kathryn and Ms. Tiana are ready to begin a busy day in the classroom. Beyond following a typical preschool curriculum with pre-reading, pre-academics, math, science, art, music, and language, the two teachers lead social and emotional development and self-help instruction. Throughout the day, Ms. Kathryn and Ms. Tiana track students’ progress toward goals they've defined as part of each child’s professional team. Each team is comprised of a unique set of professionals, based on individual students' strengths and needs.

Both Ms. Kathryn and Ms. Tiana have long been passionate about working with children. Ms. Tiana takes pride in being an advocate who can provide emotional support to kids and Ms. Kathryn feels fortunate to spend her career working with young people who are full of wonder and excitement.

Ms. Kathryn Smith, Teacher of the Deaf, smiles with a student.

Ms. Kathryn Smith, Teacher of the Deaf, smiles with a student.

Ms. Kathryn holds a Bachelor's in Communication Disorders with a minor in Deaf Studies from SUNY New Paltz and a Master’s in Deaf Education from Hunter College. Ms. Tiana completed her Bachelor’s in Communication Disorders at St. John’s University. After developing interests in aural rehabilitation in school, working with children who are deaf or hard-of-hearing—where they can contribute to the success of many children with unique perspectives and experiences—was a natural career choice for both Ms. Kathryn and Ms. Tiana.

The progress that Clarke students make, despite not having the same abilities as their typical-hearing peers, impresses the teachers. Though the children have an “added challenge at the starting line,” they experience tremendous growth as a result of their efforts made both independently and in collaboration with their families and professionals, says Ms. Kathryn. She recalls a few of her classroom’s latest accomplishments. One child is celebrating her newfound ability to put her FM system on all by herself. Another student who recently received a cochlear implant is regularly responsive to the sound of his name in the noisy classroom.

Ms. Tiana reflects on positive experiences outside the classroom, such as daily trips to the park, which she particularly enjoys. “As soon as we step outside, a whole new world opens up for them. They tell me about the sounds they hear and the sights they observe—and I know they’re not missing out on a single piece of life.” She feels most rewarded at work when a student expresses gratitude for help she provided.

At 2:30 PM, the Clarke students make their way out of school and home to their families. As staff, Ms. Kathryn and Ms. Tiana also build relationships with the school’s families who, like the students, greatly admire the teachers and look to them for guidance. Ms. Kathryn reminds parents and families not to lose sight of their child in the diagnosis. “Your child has a hearing loss, but it is not all of them. Your hopes and dreams for your child can still be achieved; they may just take a different route.”

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The Best Lesson Yet

By Layla Rudy

I was diagnosed with bilateral sensorineural hearing loss at age 3, after a series of unsuccessful doctor visits. Two years later, I was going to the audiologist to get my hearing aids for the first time. I remember being frightened by a picture in the waiting room of the shiny tube that comes out of the ear molds attached to hearing aids. My little brother was crying in the stroller as we left the doctor’s office for brunch.

Layla, age 5, with one of her brothers, James

Layla, age 5, with one of her brothers, James

I went to speech therapy for the next four or five years; during school, along with two other kids, I was pulled out of class a few times a week. I remember thinking that I didn’t belong there, that I was “normal,” and that everything was fine with me. But the teachers and administration didn’t know what to do with me—they thought something was wrong with me, and they just threw me in the same boat as the kids with speech problems or ADHD.

I was the only kid in my elementary school with hearing loss. While it was great that my mom wanted to mainstream me, looking back, it was clear the school didn’t know how to handle a student like me.

The problem was ignorance more than a lack of resources—although that was an issue, as well. My teachers plopped me in a desk—not always in the front of the room—and, not understanding how important the FM system was for me to hear in their classrooms, didn’t wear it. I thought the teachers didn’t care about me, but it turns out they just never learned how to deal with students with hearing loss. I was too embarrassed to say anything, so the FM systems often went completely unused. For the same reasons, I was never assigned a note-taker. I was the outlier in a room full of typical children.

Identical issues continued in middle school and high school. I developed anxiety from a young age and, by adolescence, the effects were more severe. In retrospect, a lot of my anxiety stemmed from my worries that my peers were talking about me, or that I was not fully aware of my surroundings. To put it simply, I was anxious because I couldn’t hear.

My mom had always told me that college would be easier—I could get a note-taker and finally have the resources I never had. When I applied to Brooklyn College, I found the Center for Student Disabilities Services on their website. I was thrilled to find that they had a section devoted to hearing loss and deafness. Better yet, professors were given a guide to understand how each disability was to be handled and treated.

So, when I arrived at their offices, I filled out forms and submitted my hearing test results. They had told me to come back in a few days, at which point I would have everything I had wished for in elementary school.

Ironically, I never bothered to go back to their offices, and I never bothered with their accommodations.

I have spent my whole life going home and teaching myself what the teacher had taught us in class (that I could not hear)—taking my own meticulous notes that my classmates begged to borrow. I have always wanted a note-taker, an FM system that gets consistently used, and empathetic teachers. Now that I finally have access to all of this, I don’t need it.

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I realize I’ve subconsciously trained myself not to rely on anyone else; it’s not that I don’t want to ask for help, or that I’m too embarrassed. I know that if I need it, I can ask, unlike when I was in elementary school. But my hearing loss, my disability, has enabled me to rely on myself, to be aware of my surroundings, to better communicate with others.

And to me, self-reliance is the best lesson yet.

New Jersey native Layla Rudy is a freshman at Brooklyn College planning on studying biology to eventually conduct auditory research. She is also a participant in HHF’s “Faces of Hearing Loss” campaign.

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