children

Comfortable

By Joe Mussomeli

Being uncomfortable can be nerve-wracking, strange, and sometimes scary. For my brother, Alex, 14, being uncomfortable is all of these things. Born with a hearing loss, Alex has felt uncomfortable so many times in his life it’s impossible to count them all. He recently found himself in an especially uncomfortable situation when he was invited for a swim and sleepover at a friend’s house.

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To most teenagers, these activities aren’t uncomfortable; they’re fun. But when Alex received his invitation, he was overcome by anxiety related to his hearing loss. He worried he’d take too long to change into his swimming clothes, which include a shirt that attaches to his waterproof cochlear implant (CI). He dreaded others seeing him wear this. He feared he wouldn’t understand every word the other kids said in the pool. Above all, he was nervous the other kids would distance themselves from him because he was different.

Swimming wasn’t even the most distressing part. It was the mention of a sleepover that troubled Alex most. Just the mention of the word “sleepover” made his stomach tie into a knot. Every night, he removes his CI and hearing aid. He places the devices in a dry and store dehumidifier box, powers on the box, and then, finally, goes to sleep. Carrying out this routine at a sleepover would be, in theory, extremely difficult. Alex would have to keep his hearing devices on while talking to his friends at night. At the conversation’s end, Alex would have to take off his devices, but if it resumed, he would have to go through the hassle of putting his devices back on, or he would have to be left out. The whole situation would be unconventional and nerve-wracking for him. Essentially, it would be uncomfortable.

Alex was so uncomfortable that he almost declined the invitation until our dad pointed him in a different direction. The morning before the sleepover, Alex asked Dad if he should go to his friend's house. My dad told him that he should. Alex was quiet for a moment before he poured out all of his anxiety. He told him about how nervous he was and all of his other discomforts. Dad responded, “I won’t tell you what to do, but I will tell you this: Do you want to be uncomfortable your whole life, or are you willing to take a chance?” He left Alex to think over these words.

In the end, Alex didn’t go to the sleepover, but he went for a swim. Yes, it did take him longer than the other kids to change for the pool, and yes, he didn’t hear every word his friends said in the pool. But he still went, he dove into a pool of discomfort, dealt with it, and to his surprise, he had a bit of fun. He texted my dad an hour later asking if he could stay until at least 9 PM. My dad replied with three words: “If you’re comfortable.” Alex replied with two: “I am.”

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How to Create a Healthy Hearing Environment for Children

By Alyson McBryde

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“How many times do I have to repeat myself?” If you’re a parent or guardian, chances are you’ve said this to your child before. Indeed, a part of parenting is repeating yourself―but what if it becomes part of a bigger issue?

In 2015, the World Health Organization (WHO) estimated “1.1 billion teenagers and young adults are at risk of hearing loss due to the unsafe use of personal audio devices including smartphones, and exposure to damaging levels of sound in noisy entertainment venues such as nightclubs, bars, and sporting events.”

The WHO indicates “unsafe levels of sound can be, for example, exposure to in excess of 85 decibels (dB) for eight hours of 100 dB for 15 minutes.” Exposure to dangerously loud sounds could damage the sensitive structures of our inner ear and lead to permanent hearing loss. Here’s the thing about noise-induced hearing loss: it is 100% preventable.  

As a parent or guardian, you can implement fun and effective hearing loss prevention activities and strategies like these:

Lead a Learning Experience
Look for science videos and activities that demonstrate how sound, the ear, and hearing work. Great examples include Hearing Health Foundation (HHF)’s interactive, captioned video, Kids Health, and The Magic School Bus.

Watch Out for Noisy Toys
A study on sounds emitted by children’s toys found “the average sound levels of the various toys were 106.8 dB measured at a point nearest the sound source,” according to ASHA. Use a decibel-measuring app to check out your kids’ toys before they play.

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Limit Time with Electronics
NBC News reports: “Each new generation of teenagers has found a new technology to blast music – from the bulky headphones of the 1960s to the handheld Sony Walkmans of the 1980s. Today’s young people are listening longer, more than twice as long as previous generations.” Remember when our elders told us to “go outside and play”? Encourage your kids to do the same.

Turn Down the Volume
Enforce the 60-60 rule: Allow your child to listen at 60% volume for 60 minutes at a time. Look into apps that allow you to set parental controls on volume levels and encourage your kids to take a break from nonstop sound! 

Beware of Noise Levels at Live Events
Did you know a live ballgame can reach 120 decibels? Live sporting events can be extremely dangerous for little ears. The same goes for live music shows. Bring along a pair of foam or custom-made earplugs!

Keep Those Little Ears Warm
If you live in a place with cold winters, make sure you kids have earmuffs or hats that cover their ears. Cold air may affect hearing with exostosis, known as “surfer’s ear,” which happens when abnormal bone growths interfere with the auditory process.

Swim Safely
During the summer, while attending swim lessons, or on vacation, protect your kids’ ears with swim plugs. Swim plugs help to prevent swimmer’s ear, or otitis externa, caused by bacteria inside the ear canal, which can lead to trouble hearing.

Treat Ear Infections Immediately
Kids experience ear infections far more regularly than adults due to the size and positioning of their Eustachian tubes. Seeking immediate treatment from an ear-nose-throat (ENT) specialist for otitis media―ear infections―could help prevent hearing loss in kids.

Invest in Earplugs
Whether they are made of generic foam or are custom-molded to fit in their ears, earplugs are a great barrier between little ears and dangerous levels of sound. Carry a pair wherever you go―you never know when you may need them! 

Get Their Hearing Tested
Hearing health should be treated no differently than any other part of your kids’ overall health. In the same way your kids get a full physical and vision test annually, build a hearing test into the routine! Hearing tests keep track of your kids’ hearing abilities, and if anything changes, your hearing health professional can help find a solution.

Alyson McBryde leads the customer success team for HearStore.

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You Are the Reason

By Elizabeth Keithley, Ph.D.

Your partnership with Hearing Health Foundation (HHF) is fundamental to new treatments and cures for hearing and balance conditions.

I am so grateful you are part of our mission—which, as a hearing scientist, I have always embraced.

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Support from you creates new possibilities for people of all ages, including brothers Anthony, Andersen, and Ayden, all born with bilateral hearing loss.

The boys wear hearing aids and are happy, social, and active students in a mainstream school.

They’re fortunate to have a mother who sacrifices for their hearing health, including five-hour round trip drives to their audiologist.

I am pleased to have witnessed so much extraordinary work funded by HHF that will better the lives of so many people just like these boys.

And I know someday, hearing restoration— which already exists in birds, fish, and young mice — will be possible for millions of folks who have hearing loss.

Progress cannot happen without you.

Please, if you are able, give today to bring us closer to realizing that dream.

Your generosity is urgently needed to accelerate new treatments and cures. We appreciate your consideration to give to HHF’s life-changing work.

Thank you and happy holidays!

 
 
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My Magic Ear Kid

By Joey Lynn Resciniti

Julia was a full-term baby born exactly one week before her due date. She was healthy and perfect. She passed her newborn hearing screening.

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The hospital bassinet had a cabinet underneath where the diapers were stored. If I wasn’t very careful with the doors, they would slam loudly. Julia would startle and cry.

At least she can hear, I thought. This would prove ironic to me when Julia showed signs of having problems hearing. When Julia was 15 months old, I became concerned with her speech—or its lack. She’d babbled a little bit as an infant and then didn’t say much until at a year or so when she said hi, once.

No one wanted to admit there was a problem. My husband was even a little defensive about the subject. Grandparents chimed in that she was just a “late talker.” When I mentioned my concerns to the pediatrician, he recommended the state’s early intervention program, which led to our qualifying for twice-weekly speech language pathologist visits.

All this time, no one suspected Julia wasn’t hearing. With the specialist’s help, small gains were made in her speech. She developed a vocabulary of a few dozen words but never progressed to speaking two-word sentences or multisyllabic words.

So by the time we made it to the audiologist over a year later, when she was nearly 3, I had come to terms with Julia having some level of hearing loss. I knew when she turned her back to me, she wouldn’t respond if I called, and that was a big sign to me.

A Series of Tests

Sitting on my lap in the soundproof booth, Julia turned toward the speaker that was making a loud sound. But as the sounds got quieter, I got a heavy feeling in my stomach. She stopped turning toward the speaker. Finally the audiologist leaned into the microphone and told me she was coming over to our room. I willed myself not to cry as she said she’d found a moderate hearing loss in both ears.

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The audiologist next used little headphones to transmit sound directly to Julia’s auditory nerve. The results showed Julia’s hearing loss is sensorineural, a nerve problem, and not a mechanical problem like a tube that is too small in the ear. I was told that it is not uncommon for a newborn to pass a hearing screening, like Julia did, and then find something later. The audiologist reassured me that we’d found it sooner rather than later, and that intense speech therapy would catch her up.

The next few months were tough. We scheduled an auditory brainstem response (ABR) test. For this test, the audiologist sedates the child and plays a series of clicks while measuring brain activity. This test is often done for young children to confirm their hearing loss before they’re fitted for hearing aids.

Our family was not ready to accept the first diagnosis and kept questioning the results. But I was with Julia in the booth, and knew it was correct. So when the ABR confirmed the hearing loss, I set to work managing the appointments and paperwork that would eventually help my daughter speak and thrive.

The first thing the audiologist showed us after the ABR testing was the “speech banana.” This was a confusing bit of information at first—banana? Speech? The speech banana is a visual aid for a very quick introduction to hearing loss and the varying levels of severity.

Normal hearing is in the 0 to 20 decibel (dB) range at the top of the banana. All speech sounds (vowels as well as consonants and consonant pairs) are above where Julia can hear with her 55 dB loss. Theoretically, without hearing aids she can’t hear any of those sounds.

Things louder than 55 dB, like a dog barking or a piano, would be accessible for her without hearing aids. But the tricky part is that it isn’t so cut and dry. Julia wasn’t unable to hear all language, and she also wasn’t always able to hear dogs barking.

Instant Change

We ordered hearing aids and earmolds. The audiologist showed us how to insert the tiny size 13 battery and talked to us about school accommodations and speech therapy as she programmed the little hearing aids for Julia’s specific hearing loss.

I’d thought about the moment she’d first hear with her new hearing aids. It was going to be the first time she’d hear my voice. Maybe the first time ever. I wanted to say, “I love you.” I wanted to say something nice, something comforting.

The audiologist worked the molds into her ears and clicked the battery doors shut. Julia’s eyes opened wide and her hands clenched on the arms of her chair. She could hear—and she was terrified!

“These are your new magic ears,” the audiologist said.

I didn’t say anything nice or comforting. I couldn’t help myself, I started to laugh! She looked so adorable, like she was on a roller coaster rather than an office chair. I forgot all about making a grand first speech and instead just beamed at her. Julia’s head swiveled to the ceiling. I noticed an obnoxiously loud fan for the first time.

On the way home, Julia tried to repeat just about everything we said. She could hear above the banana, all the vowel and consonant sounds. She began mimicking speech immediately. Every noisy thing that I had never taken the time to notice before was new and interesting.

We were warned that it might be difficult to get Julia to wear her new magic ears. The audiologist told us to be very firm so she wore the devices during all waking hours. If she tried to take them out, back in they went.

Eventually, at age 5, Julia learned to insert her hearing aids herself, with the promise of a sleepover once she could show responsibility. She began to take ownership of the aids, poring over earmold colors and designs (striped, swirled, polka-dotted) with the practiced eye of a stylish tween (she wasn’t yet 8). She became a connoisseur of the hand-shaped earmold (great) vs. one that is made through an automated process (not so great).

Responsibility Shifts

As time goes by, those early years begin to fall into their proper perspective. I used to think it would mean something to me if Julia could someday tell me that she heard me when she was a toddler. Time and distance have shown that she doesn’t remember much of anything from her prelingual years. Her memories start when she was about 4. Everything prior to that comes from pictures and videos.

Some of the videos, like one when she is about 2 showing her fascination with lightning bugs, are painful for me to watch. In the video, you can hear me prompting Julia to say the word “bug” over and over, and watching it now I see plainly that she is confused and cannot hear us saying the word.

I wish I’d realized back then that she needed help. I wish I hadn’t spent a whole year frustrating myself and my baby. If I had to do it again, I would tell myself to get her hearing tested. And also that she was going to be okay and that in three short years she’d be saying so much more than “bug.”  

Life with a 13-year-old hearing aid user is much easier. Julia is an independent seventh grader who gets straight As. We have as a family weathered ear infections with the potential to wreak havoc on a spelling test, late-night searches for a hearing aid battery among tangled twin sheets, and hearing aids that can’t be worn in the pool.

Now there are whole chunks of time when I don’t think about her ears, a blessing made possible by experience. We agonized when Julia’s hearing ability dropped another 15 dB to 70 dB, putting her in the severe category, and feared her hearing would progress even more, but it did not.

At the very first diagnosis, the ENT (ear, nose, and throat specialist, or otolaryngologist) assumed Julia’s loss is genetic, but the markers haven’t been discovered yet. The overwhelming majority of children with hearing loss—more than 90 percent—have typical hearing parents. We just don’t know.

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Years later Julia’s audiologist explained the drop: “Sometimes with a change in a child’s ear canal size, it may seem as if there is a 10 to 15 dB change in hearing across the frequency range. As the ear grows, a little more sound pressure may be needed to detect sound. This will result in what looks like a change in hearing but may just be growth of the ear canal.” This makes sense. After eight years of steady audiograms and this explanation, I am finally able to let go of those lost decibels and my fear of losing more.

Every now and then there’s a head cold, dead battery, or damaged bit of ear tubing, and I am once again that younger mother, riddled with anxiety about taking care of Julia’s hearing. But the shift in responsibility has become hers. Julia is the one taking the lead on troubleshooting her technology at home, school, the pool, wherever she goes. At 13, she is the one always needing to think about her ears. Perhaps that’s what we’ve been working toward all along.

This article originally appeared on the cover of the Summer '18 issue of Hearing Health magazine with a supporting story from Julia Resciniti  

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Hearing Better Through the Ages

By Rebecca Huzzy, Au.D.

Chances are, you visit your doctor for an annual physical, wear a seatbelt, and use sunscreen. These are just a few small efforts we regularly make to stay healthy and injury-free.

Tending to the health of our hearing is another important, simple way we can maintain our overall physical and emotional well-being. Supporting hearing health begins at birth, when we test newborns for hearing loss, and continues into our elder years, when assistive technology can vastly improve overall health and quality of life.

Diagnosing Newborns & Infants

According to the Centers for Disease Control and Prevention, hearing loss is one of the most common congenital conditions, impacting approximately 12,000 infants per year. About half of these cases are linked to certain genetic syndromes, such as Down syndrome, Treacher Collins, and Usher syndrome.

But with the advent of universal newborn hearing screening programs in the early 1990s, hearing loss can now be identified and treated very early. According to what we call the “1-3-6” EHDI (Early Hearing Detection and Intervention) national goals, infants should be screened by age 1 month; diagnosed by age 3 months; and in an early intervention program by age 6 months.

“The effects of providing acoustic stimulation to the immature neurological system, including the brain, and combining the input with a rich and meaningful environmental experience, allows children to develop sufficient auditory skills to learn spoken language at a very young age,” says Janice C. Gatty, Ed.D., the director of Child & Family Services at Clarke Schools for Hearing and Speech.

This means families should expose their infants to sound frequently and consistently—talking to them, naming objects, narrating actions, singing, and reading books. With access to sound and an early intervention program at this young age, a child with hearing loss can begin learning to listen, babble, and eventually talk.

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Common Risks for Adolescents & Teens

Since the prevailing cause of hearing loss in young people with typical hearing is noise exposure, we need to educate kids early, as many begin listening to music on personal devices, playing in bands, and attending concerts at a young age.

According to the American Speech-Language-Hearing Association, exposure to sound that is higher than 85 decibels (the volume of a blender, hair dryer, or siren) for an extended period of time can cause permanent hearing damage. And the maximum output of most MP3 players is a powerful 110 decibels!

Fortunately, there are options for volume-limiting software that can mitigate unhealthy sound levels. Many devices offer parental controls and volume-controlling apps that limit noise levels, and there are various kid-friendly, hearing-healthy headphones available.

Follow the 80/90 rule: Set the maximum headphone volume to be 80 percent (not 100 percent), and listen for up to 90 minutes daily. If you listen for longer, lower the volume even more.

How Sound Exposure Catches Up With Us in Middle Age

“Adult onset hearing loss typically progresses slowly over the course of a number of years,” says audiologist John Mazzeo, Au.D., the audiology supervisor at Nemours/Alfred I. duPont Hospital for Children in Wilmington, Delaware.

Noise-induced hearing loss (NIHL) can have a sneaky, cumulative effect, similar to the impact of years of exposure to the sun. The people at the highest risk for NIHL work in noisy professions and include musicians, farmers, dentists, airport workers, and military service members. For those who spend time in loud environments, wearing hearing protection is the best way to guard against NIHL.

Ototoxic drugs (drugs harmful to hearing) and certain conditions, such as Ménière’s disease, can also contribute to progressive hearing loss over time. Regular screenings, prior to the recommended age of 50, are especially important if hearing loss runs in the family, or if you have symptoms associated with hearing loss, such as tinnitus, dizziness, or a perceived decrease in hearing.

Caring for Seniors as Hearing Abilities Change

Hearing loss becomes much more prevalent with age, affecting more than 30 percent of people over age 65, and 80 percent of adults over 80.

Hearing loss in seniors is linked to serious health conditions, including dementia. When communication is difficult, many people will avoid social situations, and research shows that social isolation is linked to cognitive decline, a key symptom of dementia. Additionally, difficulty hearing can impact the effectiveness of our other neural processes.

The risk of falls also becomes more likely with age, due to both decreased spatial awareness and increased cognitive load. A 2012 Johns Hopkins study found that older adults with mild hearing loss were nearly three times more likely to have a history of falling.

Staying Fit

If you’re diagnosed with a hearing loss, remember: Hearing loss is not only very common, it’s also very treatable! A licensed audiologist or hearing healthcare professional can discuss options with you, including hearing aids and assistive listening devices.

When it’s a loved one struggling to hear, or being stubborn about getting help, be patient. Gain their attention before talking, rephrase sentences instead of repeating them, and encourage trying out some kind of amplification.

Think of your hearing health as essential to your body’s complete performance. Our bodily systems are all interconnected; neglecting to protect our ears or refusing helpful interventions can have cascading health effects. When you take even small steps to protect your hearing health and that of loved ones, such as through regular hearing screenings and using earplugs in noisy environments, take heart in knowing you have bolstered your overall well-being.

Rebecca Huzzy, Au.D., CCC-A, is an educational audiologist at Clarke Schools for Hearing and Speech at its Philadelphia location and a clinical audiologist at Nemours/Alfred I. duPont Hospital for Children in Wilmington, Delaware. For more, see clarkeschools.org. This article also appeared in the Spring 2018 issue of Hearing Health magazine. For references, see hhf.org/spring2018-references.

Receive updates on life-changing hearing research and resources by subscribing to HHF's free quarterly magazine and e-newsletter.

 
 
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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 Power of a Mother’s Advocacy

By Vicky Chan

Like most moms, Brandy has always been a champion for her three sons, Anthony, 12, Andersyn, 10, and Ayden, 7. Her sons are unlike most sons; each has bilateral sensorineural hearing loss and enlarged vestibular aqueduct syndrome.

Brandy’s journey as a parent-advocate had a difficult start. She was completely unfamiliar with hearing loss in children before she became a mother, and accessing proper treatment for the trio was a challenge. Brandy juggled numerous audiologist appointments that were a five-hour round-trip drive from home. And, for her oldest child, Anthony, a hearing loss diagnosis came two years delayed.

Clockwise from left: Ayden, Andersyn, Anthony, and Brandy.

Clockwise from left: Ayden, Andersyn, Anthony, and Brandy.

Anthony had typical speech development and passed all his first- and second-year wellness and hearing checks by his pediatrician. When he was 2, Anthony fell and hit his head. Brandy suspected the trauma had caused either hearing loss or a cognitive disorder, but the doctors assured her Anthony suffered no permanent damage and took no action for him.

Brandy’s instincts were correct. When her second child, Andersyn, was diagnosed with hearing loss at birth a few months after Anthony’s head injury, she insisted Anthony receive a detailed hearing evaluation. Born in 2005, Anthony never received a newborn screening despite the passage of the Newborn and Infant Hearing Screening and Intervention Act of 1999, which mandated the practice.

The legislation quickly improved the rate of newborn hearing screening. In 2005, 94.2% of babies in the U.S. were screened, but some states lagged behind. In Tennessee, where all three of Brandy’s sons were born, only 66.9% of newborns were tested—the lowest in the nation. Unfortunately, Anthony was among the 30.1% of Tennessee’s babies not screened. However, by Andersyn’s birth in 2007, the state’s rate increased to 91%. It was only due to Brandy’s perseverance that Anthony was ultimately given a comprehensive exam, diagnosed with severe bilateral hearing loss, and fitted for hearing aids.

Brandy’s message is that newborn screening is vital. “If your child has hearing loss, it is best to start intervention as soon as possible and have your child fitted for hearing aids or cochlear implants if they need them.”

With his hearing aids, Anthony was fascinated by all the new sounds he could hear—including the squishy sound of Brandy’s flip-flops as the pair walked through a parking lot. At that moment, Brandy realized it was likely that Anthony, like Andersyn, was born with hearing loss, but it only became detectable to her after his head injury.

Andersyn was given a newborn hearing test so Brandy knew immediately that he had severe bilateral hearing loss. Later on, one audiologist suggested he wasn’t benefiting from his hearing aids, but Brandy knew differently; with Andersyn’s hearing aids turned up, a sound as subtle as crinkling paper near his ears would startle him. Andersyn now does exceptionally well with hearing aids, as does Brandy’s third and youngest child, Ayden, who was also born with severe hearing loss in both ears. The boys’ doctors have cited a genetic connection of unknown cause.

Today, hearing loss is an ordinary part of life for her three boys, thanks to Brandy’s tireless advocacy. With help from FM systems and speech therapy, Anthony, Andersyn, and Ayden all receive a mainstream education. They enjoy baseball, basketball, hunting, swimming, riding four wheelers, and fishing. HHF’s CEO, Nadine Dehgan, exclaims, “All three boys are incredibly fortunate to have Brandy, a devoted mother who has prioritized their hearing health.”

Anthony, Andersyn, and Ayden are participants in HHF's "Faces of Hearing Loss" campaign.

Receive updates on life-changing hearing research and resources by subscribing to HHF's free quarterly magazine and e-newsletter.

 
 
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The Next Two Million Days

By Lauren McGrath

The future sounds clearer and looks brighter for Ethan, age 6, who recently began wearing ReSound LiNX 3D hearing aids recommended by his audiologist. His new hearing aids were very generously donated to him by ReSound.

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Ethan was born with mild-to-moderate hearing loss in his right ear and moderate hearing loss in his left. Thanks to universal newborn hearing screening legislation, an initiative promoted by Hearing Health Foundation and other organizations, Ethan was diagnosed at birth and able to receive immediate intervention. In 1993, only 5 percent of newborns were tested at birth for hearing loss; today 97 percent of babies are screened before they leave the hospital. Since age 6 weeks, Ethan has worn hearing aids and received speech therapy. He is now a happy first grader at a New Jersey school with many on-site services for students with hearing loss.

Ethan is an older brother to twin girls, an avid self-taught reader, a math enthusiast, a soccer player, and a martial arts student. He is ecstatic that his new hearing aids have already improved his life; from the moment he put them on, he noted how much more easily he could hear with them compared with his previous pair.

He especially appreciates their small size; the devices do not impede his favorite activities and don’t fall out. As Ethan is easily overwhelmed by noise, he also likes that he can seamlessly adjust the volume on his hearing aids through the ReSound Smart 3D smartphone app. He’s so proud of their style and features that he brags about them to his soccer teammates.

“Ethan asked me, ‘Can I wear my new hearing aids for the next two million days?’” says Jason, Ethan’s dad. It speaks volumes to Ethan’s experience that he is ready to make a 5,500-year commitment to his new hearing aids. At a young age, he is already on track to overcome the challenges associated with hearing loss. Ethan is confident about his hearing loss, and he and his family are thankful he was graciously provided with hearing devices that make him happy.

Ethan is one of our youngest participants in "Faces of Hearing Loss." This article originally appeared in the Winter 2018 issue of Hearing Health magazine

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I Will Never Know What It’s Like to Not Feel Dizzy: My Ménière's Journey

By Lauren Edmiston

I can still remember the beginning—it’s my earliest childhood memory.

I was in the hallway of a house with my mom, my grandfather, and my brother when I started to feel weird, so I ducked into a walk-in closet to recover. Down on my hands and knees in the closet, the floor was caving in. I began falling in lightning speed, couldn't grab anything, and could only see bits and pieces of light. My surroundings were blurry.

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I was a four-year-old girl simply exploring the hallway of a house. That first memory was, in fact, my first ever full-blown episode of vertigo.

I was taken to the hospital for my first of many tests and doctor's visits as a child. Vertigo was not on anyone’s radar, much less Ménière's disease for someone so young. I was misdiagnosed repeatedly, starting with potential brain tumors and neurological disorders.

The dizzy spells continued throughout my childhood and became normal to me. Waking up some mornings and not being able to get out of bed was normal. Not being able to function with tall ceilings was normal. Sitting at church knowing that if I stood up from the pew to take about five steps I’d have an episode was normal. That sensation that starts out much like an anxiety attack, a sensation that I’d feel through my entire body before suddenly spinning uncontrollably, was normal. But it wasn't normal. I advocate for that little girl today because now I know the truth. It was a hard journey learning that I was different.

I was homeschooled, so it wasn’t until around age eight when I realized that not all kids functioned like I did and that there was something "wrong" with me. I was determined to do things my friends did, like gymnastics and soccer. Yes, I did both. Yes, I fell on the balance beam. Yes, I fell on the field. But I kept going.

Adulthood is not easy with Ménière's disease. But childhood with Ménière's disease? It shouldn't happen. Ménière's disease was still not an option or even discussed because of my age. I was 10 when my mother's best friend was diagnosed with Ménière's and recommended a doctor at the ear clinic. My mother’s friend and I always had similar quirks, after all.

I went and, just like that, I was diagnosed—officially this time. Six years of being “just a little different" instantly explained. But also, just like that, there was the realization that not a whole lot could be done. It was not very common to be a child with Ménière's disease—in both ears.

I entered a remission phase at 19 and I'm now 26 with two kids. I still have Ménière's and I will never know what it's like to not be dizzy. I still experience the dreaded ringing and fullness. I'm still incredibly sound-sensitive and I still have days where I wonder how I'm going to get through it with my kids.

I tell my story for parents that might be going through Ménière's with their children. I tell it for people that read my words and can relate to every single one. You’re not alone. You’re not just sensitive to your surroundings. You’re not over exaggerating; you fight a silent illness, you navigate an alternate universe. Never stop fighting for a better quality of life.

But, also, remember to share your story with honor. If you can relate, you can help impact lives of people just like you and me.

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Helpful Tips for Parents of Children with Hearing Loss

By Nadine Dehgan

You just learned your child has a hearing loss. It is common (and normal!) to feel overwhelmed, scared, and have many, many questions. Hearing loss is a loss. It’s not uncommon to grieve after receiving a diagnosis. Take some time to come to terms with the news, and know that there are professionals ready to help and there are many resources at your disposal. There are also countless families who have gone through this same experience and have found success.

Here are some helpful tips Hearing Health Foundation cultivated from parents just like you:

Accept your child and cherish them for who they are as a person. This will encourage your child to accept themselves and their hearing loss, providing them with the confidence and assurance that they will be accepted by their peers and community, despite their hearing loss.

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Help your child develop a fun, but informative, answer to educate their friends and others about their hearing loss and assistive devices, should they ask when you’re not around. This will help them develop self-advocacy skills they will need later in life.

Discussing your child’s hearing loss with their siblings may be something you dread. Simple is key. Let them ask questions and answer them as honestly, and positively as possible.

If your child’s chosen method of communication is sign language, make lessons a family activity, if the rest of the family communicates orally. It’s important that your child with a hearing loss feels and is included in all conversations, especially those taking place in the household.

Ask your child’s audiologist for recommendations for a speech pathologist, education consultants, and materials to set up your child for success. (*Laura, HHF’s communications and programs manager, mother used and was very thankful for the free resources from the John Tracy Clinic).

If your child is school-aged, set up a meeting with the school district’s Department of Special Education Services and start the Individual Education Plan (IEP) process. Cultivate and maintain the relationships made with Special Services—your child’s academic success depends on it.

  • Know the laws related to disabilities and special education, so you’re properly equipped to be your child’s best advocate.

  • Have regular check-ins with your child’s teachers to identify any gaps and ensure they are developing appropriately for their age, both socially and academically.

Have a folder/binder and notebook where you house all the paperwork of test and reports, dates of appointments and procedures. This would be a good place to keep any and all hearing aid, BAHA or cochlear implant warranty information.

  • Hearing loss accidents happen and sometimes you just have to laugh them off: When Laura was in kindergarten, she used to take a bath after dinner, and her mother would scream down the hall, “Take out your hearing aids!” One day, she forgot to remind Laura, and into the bath those hearing aids went!

  • Take issues that arise from bullying and other social incidences and turn them into a life lesson about diversity and that being unique is not a bad thing, but something to embrace.

If you’d like to connect to others going through similar situations, or with those who have dealt with these circumstances before, please email us at info@hhf.org. We also encourage you to check out our Pediatrics page for more information and tips.

Receive updates on life-changing hearing research and resources by subscribing to HHF's free quarterly magazine and e-newsletter.

 
 
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