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I never would have thought a plain hospital parking garage could elicit such powerful memories.But as I unbuckled my 3-year-old son from his car seat and urged him to walk quickly so we would make it to our appointment on time today, memories from the last time I visited Elkhart General Hospital flooded back.I was cutting the timing close for that appointment, too, and I recall another woman rushing past me in the stairwell as she pulled a white lab coat over her shoulders.“I’m glad I’m not the only one,” I said. She laughed and told me that at least I got a free pass because I was carrying an infant in a car seat.The woman in the stairwell was actually the audiologist we were scheduled to see for Max’s auditory brainstem response test that morning.After Max failed his newborn hearing screening, we were referred to a local hearing center with an appointment a few months out. On the day of the follow-up tests, some of the equipment was broken and our referral was passed to another audiologist in the area.The next day, I answered an urgent call asking if we could schedule the tests for the following week. The audiologist wanted to see Max as soon as possible, as infants older than 3 months are more likely to need sedation for the test as the results are only accurate if there is no movement or external noise. Natural sleep is much safer than sedated sleep for an infant, and we were about to miss that window.The test was scheduled for Max's 3-month birthday and we were given instructions to wake him early and wait to feed him until we were in the testing booth. If we timed it right, he would be hungry and tired enough that a bottle would put him in a deep sleep to allow for accurate results.When we got settled into the noise-proof testing booth, the audiologist described the test and told me that she would be sending signals of various frequencies and volumes and measuring the response through electrical sensors on his forehead.She asked me if I wanted to know the results as she was conducting the test or if I would rather wait until my husband could join when she was done.“If you’re not sure how you would handle bad news, it's better to wait,” she said. An emotional outburst would put a quick end to the test.My job was to remain still and calm, and I knew my nervous energy would be a disruption if I was wondering what the audiologist was recording the entire time.“Tell me as you go,” I told her. The machine started sending beeps through the baby-sized earbuds and the audiologist watched a chart on her computer. As the beeps went higher in frequency, she whispered that she was not registering a response.&nbsp;The longer we could keep Max asleep, the more tones and frequencies the audiologist could test. Max stirred after about an hour, so we took a break while I nursed him back to sleep for another hour or so.&nbsp; The audiologist flipped on the lights, invited my husband back into the booth and summarized the results: mild-to-moderate sensorineural hearing loss with a slope to the right, meaning higher frequencies are harder to hear. She sat with us for more than an hour and answered all the questions we didn't realize we had about hearing loss. Will his hearing get worse over time? What caused his hearing loss? Will he need to learn sign language? Will he need hearing aids or a cochlear implant? Will he develop language at the same pace as his peers? How can we help him? She didn't have all the answers, but she recommended a game plan: We would get Max fitted with hearing aids as soon as possible. Every day we waited, he was missing out on the sounds that would help him develop language.&nbsp; Max's hearing aids were activated three years ago, and he is now filled with hundreds of words and questions to show for it (the early interventions through First Steps and the Elkhart County Special Education Cooperative helped, too).&nbsp; We were back at the hospital today for an appointment with a genetics counselor. I'm certain we were offered a referral for genetics testing when Max was younger, but Travis and I both agreed: It won't change anything, so we don't need to know. But when Max was sick with a mysterious infection, I realized the importance of the test. Without knowing the cause of Max's hearing loss, every runny nose or stomachache would make me wonder if the symptoms were actually a rare genetic condition finally making itself known.&nbsp; The results of a genetics test can't change Max's hearing loss, but they can help us prepare for future health complications in the case that his hearing loss is caused by a syndromic gene mutation. After a quick cheek swab, Max's saliva sample is on its way to the lab to screen for 200 of the most common gene mutations that cause hearing loss. In a few weeks, we'll know if Max's hearing loss is genetic (which is likely, given no other apparent cause), and whether it is associated with other symptoms (unlikely, but possible). There are a few genes that I am terrified of seeing on the positive list from the results, like one that can cause a disease called Usher syndrome which also causes progressive vision loss starting in late adolescence.&nbsp; I remember leaving the hospital after Max's ABR. My husband and I sat in the car and let Max play with the steering wheel while we attempted to process the diagnosis. We weren't sure what his life would look like, but we knew he would be fine.&nbsp; As Max and I left his appointment today, I know we were right: Thanks to early intervention, Max is a talkative toddler with Paw Patrol hearing aids. He will be just fine.

From ABR to genetics counseling: Reflecting on hearing loss testing

Michelle Sokol

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Before my own son was born with hearing loss, I did not know much about how the ears worked. As it turns out, most people don't understand hearing loss – even medical professionals. At Max's three-month checkup &nbsp;– after his ABR and before we received his hearing aids – his pediatrician turned to leave the room but paused for a moment. She clapped her hands and loudly exclaimed: “BYE, MAXWELL!”Max and I both startled at the sudden noise, and the pediatrician noticed.&nbsp;“See, he can hear just fine,” she said with a wink as she walked out the door.&nbsp;At his next appointment, she again hinted that his hearing was fine and that he would "grow out" of his hearing aids.I explained that his hearing loss was most likely permanent and that he may “grow out” of the hearing aids some day, but right now they are critical to help him develop language. She shrugged and told me she had seen bigger miracles in her career.If that encounter had happened today – now that I have several years of experience as an advocate for Max and his hearing loss – I would have used the exchange as a teaching moment. I would have explained the importance of recognizing hearing loss and the impact even mild losses can have on brain function.&nbsp;Instead, I turned to a Facebook community for parents with hearing loss for reassurance that I was not overreacting about the situation.&nbsp;More than 50 parents commented on my post, many sharing their own similar experiences. One mom shared that her child's doctor refused to provide a referral to audiologist or ENT, meaning that her insurance would not cover the specialty visits. Another shared that a teacher would continuously lower her voice during parent-teacher conferences to a whisper, just to see if her kid was “faking it.”Most comments encouraged me to find a new pediatrician. As someone who has always avoided conflict, the thought of asking for a new doctor made me anxious.But a few weeks later, we returned to the pediatrician's office with an ear infection. A new doctor was working the acute clinic that day, and he paused before looking in Max's ear.&nbsp;“I need to be honest, I've never treated a child with hearing aids. Is there anything I should know before the exam? Does he need any special accommodations because of his hearing loss?” By admitting that he did not have much experience or knowledge about hearing loss, he gained my trust immediately.&nbsp;After seeing a clearly infected ear and prescribing the necessary antibiotics, the doctor asked if I had any more questions: “Yes, are you accepting new patients?”On the way out of the office, I stopped at the front desk and asked to be transferred to the new doctor. While it may not have counted as a dramatic “firing,” it was the first time I stepped out of my own comfort zone to advocate for my son. I know it won't be the last. When Max caught the flu and ended up with another ear infection this year, we visited the pediatrician. His ear was hurting too much to wear his hearing aids, so it was the first time the doctor had interacted with Max without technology. When Max answered a question himself, his doctor turned to me with a surprised face and asked with genuine curiosity: “He heard that? What kind of sounds can he hear on his own?" I pulled up Max's audiogram on my phone and showed him that his loss means he can hear most sounds, but loses some of the most important language noises. I was so grateful for the exchange and the opportunity to help a medical professional better understand hearing loss. Although his audiogram is now complete – we have charted his loss through years of various testing – there are still things I do not understand about Max's hearing loss. I'm still baffled when Max wakes up from a deep sleep to the sound of his dad fluffing his pillow downstairs, yet sleeps through a blaring fire alarm.&nbsp;I'm still learning, and I encourage everyone in Max's life to do the same. I love answering questions about Max's hearing loss and how he is experiencing the world.&nbsp;But please, don't "test" his hearing. We have an audiologist for that.

Why I Fired My Son's Pediatrician For Clapping

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I once heard someone describe raising a child with hearing loss as dancing in the dark, and I have carried that with me.&nbsp; I knew nothing about hearing loss until my own son was born with moderate to severe bilateral sensorineural hearing loss, and I still struggle with the knowledge that he is experiencing the world in a way that I never have. Raising Max has been a dance in the dark as I have tried my best to advocate for him without truly understanding his needs or his challenges.Thankfully, early intervention for Max also included training and information for his parents. Through First Steps, we qualified for an online therapy called iHEAR through the St. Joseph Institute for the Deaf and Hard of Hearing. For 2.5 years, we met with a speech language pathologist every week to learn new ways to incorporate language into our normal play. Max was battling a cold one week early in our iHEAR journey, and I didn't want to wake him from his nap. Instead of skipping the session, our iHEAR coach asked, “Have you ever heard of the speech banana?” She shared her screen and showed me an audiogram with a yellow band highlighted in the middle. It looked like a banana. An audiogram is a graph that represents a range of sounds, with Decibels (loudness) on the vertical axis and frequency (pitch) on the horizontal axis. A person with normal hearing will have a line that is mostly flat and close to the top of the graph, while a person with hearing loss will have a line that dips down at certain frequencies, indicating that they have difficulty hearing those sounds.A dog barking, which is generally low-pitched and loud, would be plotted on one corner of the graph while a bird chirping, high-pitched and quiet, would be on the opposite corner. Any sound we encounter in the world can be plotted on an audiogram, including the individual sounds that we us when speaking words and sentences.When the most common speech sounds are plotted on an audiogram, the narrow band takes the shape of a banana. It's called the “speech banana,” and it is the single most helpful tool I have found to understand hearing loss.&nbsp; Our iHEAR coach pulled Max's most recent audiogram from his file and drew a green line across the chart and through the banana.&nbsp; &nbsp;<figure class="image image_resized" style="width:61.61%;"><img src="https://res.cloudinary.com/listenup/image/upload/v1674837370/Max_s_Speech_Banana_a96c1c51c7.png" alt="Max's Speech Banana" srcset="https://res.cloudinary.com/listenup/image/upload/v1674837370/thumbnail_Max_s_Speech_Banana_a96c1c51c7.png 164w,https://res.cloudinary.com/listenup/image/upload/v1674837372/small_Max_s_Speech_Banana_a96c1c51c7.png 500w,https://res.cloudinary.com/listenup/image/upload/v1674837372/medium_Max_s_Speech_Banana_a96c1c51c7.png 750w,https://res.cloudinary.com/listenup/image/upload/v1674837372/large_Max_s_Speech_Banana_a96c1c51c7.png 1000w," sizes="100vw"><figcaption>Charting Max's audiogram across the speech banana helped me finally understand his hearing loss.</figcaption></figure>She explained that without hearing aids, Max has difficulty hearing any sound above the green line. Half of the sounds that makes up language was above the green line.&nbsp; While Max was responding to our voices and most sounds, he was missing the individual sounds that help us decipher words. His brain would be on overdrive to compensate, trying to fill in the gaps and use other context to comprehend what was being said. Hearing aids aren't like glasses. They don't magically make sound clear, but they can be programmed to amplify the most important sounds and help fill in the gaps.&nbsp; Recent research has shown a strong link between hearing loss and dementia. Studies have found that older adults with hearing loss are more likely to develop dementia than those with normal hearing. This is thought to be because the brain has to work harder to compensate for missing sounds, which can lead to cognitive decline over time.Research has not yet been published to show whether hearing aids can slow or prevent dementia, but there is plenty of evidence to show that they will help Max develop language and learn to communicate. Hearing aids are rarely covered by insurance, but I'm hopeful the new research will change that.

How A Banana Helped Me Understand Hearing Loss

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I turn 30 in one week, and I'm dedicating this one to the St. Joseph Institute for the Deaf.&nbsp;Max has been receiving speech therapy services from St. Joe for more than a year now, and there's no doubt that his weekly sessions are helping him learn to talk.One of the first questions that usually comes up about Max's hearing aids is how we discovered his hearing loss. The official diagnosis took a few months, but the delay allowed Travis and I time to process the complete shock on the day Max was born.Thankfully, newborn hearing screenings have been mandated in Indiana since 2000. Because it's just one of dozens of tests that newborns go through in the hospital (when everything is a blur anyway), a lot of parents don't give it much thought unless their child fails.When Max failed his first hearing test in the hospital, no one seemed too concerned. When he failed a second time, we were told it was probably fluid in his ears since he was delivered early due to my preeclampsia. I can't recall how many more times they attempted the test during our stay at the hospital, but we were sent home with a referral for diagnostic evaluation.Something that still bothers me to this day: When we received our referral, we were told that many parents actually end up skipping the follow-up testing because it's so expensive and it's usually just fluid in the ears that clears up.Both those points may be true, but shouldn’t be a factor in pursuing more evaluations. More than 70 percent of newborns who fail their screening in the hospital are ultimately identified with normal hearing in Indiana. And the testing IS expensive. When we booked Max for follow-up testing with an audiologist, we were required to sign a waiver to acknowledge that we would likely be responsible for $1,500+ because so few insurance carriers cover the necessary testing.It took us a few months to get scheduled for follow-up testing, which meant we spent a lot of time wondering whether those tests in the hospital were wrong. Max would startle easily when the dogs barked and seemed to follow our voices, so we almost considered blowing off the testing ourselves. Max literally woke up to the sound of Travis fluffing his pillow on from the other side of the house, but then he slept right through the ear-shattering alarm that we accidentally set off at my parent’s house. Even Max’s *former* pediatrician clapped her hands loudly and said “see, he can hear just fine” when he responded. We weren’t sure what to think, but soon discovered stats that that showed that without early intervention, kids with mild-moderate hearing loss will fall one to four grade levels behind their peers. The cost and hassle of testing suddenly seemed so small.Preparing for Max’s hearing test felt harder than any exam in school. Because they can’t really raise their right hand when they hear a beep in their right ear, infant hearing is tested using auditory brainstem response. Clicking sounds of various frequencies are sent through little baby earphones, and electrodes placed on the head (like the one in the picture) measure whether the brain is responding to the clicking. The kicker? ABR tests take 1-2 hours and can only be completed during a deep sleep. A newborn’s sleep schedule isn’t exactly predictable, so we were given a long list of instructions to make sure the test could be completed without sedation: Wake Max up early on test day, keep him busy all morning, don’t let him eat for 2-3 hours before the appointment, make sure someone rides in the back of the car with him on the way to the hospital to keep him awake. Somehow we managed to make it to the hospital and through the registration process with an infant who hadn’t eaten or slept for several hours.The testing room at the hospital is tiny, so only one of us was able to sit through the test with Max. I selflessly volunteered to snuggle my boy for 2 hours.The nice thing about ABR testing is that the results are immediate. After the test, the audiologist invited Travis back into the room and told us what she had found: Max has mild-moderate hearing loss in both ears. The loss is permanent and sensorineural (which means it is caused by a problem in the inner ear or auditory nerve rather than an issue with the structure of his ear). The audiologist was honest but kind as she told us that Max’s hearing won’t improve in the future, but there’s a chance that it could be progressive. She was generous with her time while she answered all of our questions and gave us easy ways to contact her if we thought of more after we left (and we definitely did).Within two months of that appointment, Max had his hearing aids. They don’t ‘fix’ his hearing and he’ll still encounter challenges with hearing, especially in environments with a lot of background noise, but they allow him to pick up on more of the speech sounds that he needs to develop language. We know they’re working because he is adding new words to his vocabulary weekly (although his favorite by far is still “ball”).We’ve had a few ABR tests since the first one and have now graduated to behavioral booth testing, where the audiologist plays a tone through earphones. If Max looks toward the sound, the audiologist rewards him by activating a light-up animatronic dog that is inside a box on the wall. After each tone, we refocus his attention to the front of the booth. We’ve been through enough sessions now that he is trained to look for the dog to light up when he hears the tone. The audiologist is able to measure his hearing based on if he turns his head to look for the dog or not.We’re still filling in the gaps of Max’s hearing chart so the audiologist can program his hearing aids perfectly, but his loss has remained in line with the original diagnosis for every test. Our newest challenge is that it’s hard to determine whether Max is not responding in the booth because his hearing has declined since his last appointment, or if he’s just being a stubborn toddler. We have an appointment tomorrow, so let’s hope he gets a kick out of that light-up dog in the booth (and doesn’t rip the earphones out a dozen times).&nbsp;The hearing loss diagnosis was an expensive and challenging process, but we're so grateful for early intervention and that our path led us to St. Joe! Max is all smiles on Wednesday mornings when he 'talks' to Ms. Colleen (even if he does try to hang up on her several times a session by closing the computer screen) during his speech therapy sessions.I would be so grateful if you would consider a donation to St. Joseph Institute for the Deaf in honor of my birthday and/or Max. Thank you to my incredible friends and family who have already supported this organization that means so much to us!

Blog list

From ABR to genetics counseling: Reflecting on hearing loss testing

Why I Fired My Son's Pediatrician For Clapping

How A Banana Helped Me Understand Hearing Loss

Why I'm Dedicating This Birthday To The St. Joseph Institute For The Deaf

Blog list

Blog Section

From ABR to genetics counseling: Reflecting on hearing loss testing

Why I Fired My Son's Pediatrician For Clapping

How A Banana Helped Me Understand Hearing Loss

Why I'm Dedicating This Birthday To The St. Joseph Institute For The Deaf