Hyperacusis is a rare and poorly understood medical condition that causes people to experience physical pain from normal noise.  The ADA guarantees full access and enjoyment of public places for people with disabilities. Schools are public places. Students with hyperacusis are unable to have full access and enjoyment at school, as they experience pain from noise. Therefore there needs to be a specialized school program for students with hyperacusis so that they can receive a pain free education.

I propose the State of Maryland to have one statewide school program for K-12 students with hyperacusis. I suggest the hyperacusis school program be located in Prince George’s county the geographic center of Maryland. The hyperacusis school program would need to have soundproof hallways, soundproof classrooms, soundproof separate rooms, no intercom system, silent bells, quiet appliances, and carpeting in most places. The hyperacusis school program does not need its own building, part of an existing quiet State owned building may be used. 

     Everyday noises “such as: running water, car engines, conversations, kitchen appliances, voices speaking on the telephone, bicycle pedals, crunching leaves, or vacuum cleaners” are physically painful for people with hyperacusis. Students with hyperacusis experience continuous pain from the noises of attending school.  Examples of general school noise may include; transportation, industries and plants, teaching equipment, hallway noise, students/teachers talking, custodial staff, bells, furniture moving/falling, kids screaming, intercom system, videos/music, etc. According to a 2019 survey by Sanford CORDS the the pain lingers after the noise is gone. “The pain cycle lasted weeks or longer for 28% of the respondents, and several days for 18%.” Since the pain from noise lingers, students with hyperacusis experience elevated pain levels even on days off from school. 

According to the ADA the definition of a disability is “a physical or mental impairment that substantially limits one or more major life activities.”  According to Anthony Ochoa, a hyperacusis sufferer, “There are a lot of people suffering silent suffering with hyperacusis. They barricade themselves in cellars in their houses or upstairs in rooms and close all the windows and shades because they cannot tolerate the noise.” Daniel Fink, Board member of The Quiet Coalition, explains “people with hyperacusis often cannot work, and cannot go to restaurants or many stores without hearing protection because the ambient noise is too loud for them. Moderate ambient noise and unanticipated noise worsen symptoms.” 

According to the Hearing Health Foundation, “hyperacusis affects an estimated one in 50,000 people,” that is approximately 17 K-12 students in Maryland public schools with hyperacusis. Unfortunately many people with Hyperacusis are often not diagnosed or misdiagnosed as having anxiety, photophobia, depression, misophonia, autistic or ocd tendencies. Therefore there are many more students in the state of Maryland with Hyperacusis then people think. The hyperacusis school program will not have the cost of construction or utility bills, only the cost of school staff, teaching materials, and soundproofing. You can drive through Maryland in about two hours via i-95. The school will have soundproof electric cars that pick up its students from across the state. I personally suffer from severe hyperacusis and experience daily pain from the noise at school. I am sure that you will understand that every student deserves to have a pain-free education. Please contact me to set up a time to discuss this issue further. I can be reached via email at Hyperacussis.awareness@gmail.com or via phone at 410-741-2937

           
The Hyperacusis School program

1. be located in the geographic Center of Maryland or easily accessible location

2.  cars with soundproofing on the  doors, the floor, the engine compartment, trunk will take students back-and-forth to school 

3. Part of an existing quiet state owned building may be used 

4. The  hyperacusis school program will need five classrooms, four bathrooms, five small separate rooms (private quiet rooms for students), one room to be used for related arts, one small non-echoey room to be used for PE, one room to be used as a Science lab

5.  The Hyperacusis school program will be a K-12 school

6.  The Hyperacusis school program must have soundproofing in  hallways, soundproofing in all classrooms, soundproofing in all separate quiet rooms, soundproofing in all bathrooms, soundproofing in the related arts room, soundproofing in the PE room, soundproofing in the Science lab

7. The Hyperacusis School program must be mostly carpeted 

8. Hyperacusis School program will have no bells or intercom system, no walkie talkies staff will communicate through texting, School phones will flash instead of ring

9. hyperacusis school program will have approximately at 17 students (probably more to under diagnosis I misdiagnosis)

10. The hyperacusis School program would need about 6 K-12 teachers, One principal, One school nurse, one School therapist, One related arts teacher, five para educators

11. The Hyperacusis school will need general school supplies and teaching equipment 

12. The hyperacusis school program will need computers and technology for telepresence and distance learning

13. The hyperacusis school program will need lots of sticky back craft foam and felt as well as thick foam tablecloths and place mats

14. The hyperacusis school program will need alternative forms of communication including vibration haptics and sign language

15. All of the staff we need to be trained in quiet teaching and how to be sensitive to hyperacusis

 

If you or a loved one  is a student in Maryland with hyperacusis please reach out and contact me on Facebook at Hyperacusis Awareness or on Instagram at hyperacusis_Awareness by uniting the students and families with hyperacusis we can make a difference. We are not only looking to get in contact with students and families Who have been formally diagnosed with hyperacusis, we are looking for any students who experience daily physical pain from normal everyday examples: people talking and laughing, telephone ringing, dishes clanking, Music or TV, lawnmowers, running water, refrigerators, etc. 

 If you’re interested in helping to raise money for the Hyperacusis school program click on the following link

https://www.gofundme.com/f/hyperacusis-school-program?utm_medium=copy_link&utm_source=customer&utm_campaign=p_na+share-sheet&rcid=d992201652fb450b8f8e6fe50361f8e8 

Also check out Hyperacusis Research nonprofit organization dedicated to finding the cure for noise induced pain

https://hyperacusisresearch.org/

 

below is my personal testimony and account of my 

My personal testimony as a student with Hyperacusis

I have had and I EP since I was in kindergarten as I am low vision legally blind when I got Hyperacusis in around the Second grade, it was added onto my IEP. In the second and third grade I attended running Brook Elementary school for part of the school year, they try to make accommodations such as: allowing me to eat lunch in a separate location, not going to PE music or art class, coming in after arrival and leaving before dismissal. All the noise from students and teachers talking in class kids in the hallways, noises from other classrooms such as videos and music, multiple people talking and laughing, announcements and intercom system, furniture or object moving was too painful for me though.  I would come home every day in a lot of pain and have to lay down for hours I had a lot of absences, and eventually ended up on home and hospital for most of my second and third-grade years.

           For third-grade home hospital, they put me in an office building which worked well and was  less painful for me as, I in a room in part of the building that was mostly empty. In fourth grade, they transferred me to Fulton Elementary school because they had a regional program which they said had only about six students, so they thought it would be quieter. They did make accommodations such as giving me a shortened day schedule,  having adaptive one on one PE, not going to recess music art or the cafeteria.

          Going to Fulton was extremely painful, although there were only about six students in my class, they had severe behavioral challenges and would often scream and bang on the walls and throw furniture. Attending school every day was a nightmare for me, I was in pain every day, and when I got home, I would sleep for hours in my closet. The pain would linger, and I would still be in pain from school several days later, which resulted in me having a lot of absences. Eventually, the pain became too much, and I was no longer able to continue to attend school for about a month I was just mostly laying in bed. I also suffered from a step back from my Hyperacusis due to the elevated pain levels and sound exposure over a long period of time, now even the sound of my refrigerator in the kitchen was painful for me. They put me on home and hospital instruction in the office building again which went well, and I was at least able to go to a place to learn and get my education without it being a painful experience. They again placed me in a room in a part of the building without many people, just me and the teacher. In fifth grade, they again wanted me to try to return to school they told us that I would not be in the room with the children who were screaming so they put me in a separate room at school,  right next to the music room. Again, they did make accommodations such as the ones listed before, and I was not even in the room with other students. It was very painful for me, and I eventually could no longer continue to attend and ended up on home and hospital at the office building again.  Again, this worked very well for me and I really Hope that they would allow me to continue to stay in the low noise, non-painful learning environment.

         Unfortunately though in the sixth grade, they decided to have me go to the Bridges program at the Homewood center. Which is a special-education program with small classes. They did make accommodations for me such as: allowing me to leave the classroom when it is too noisy, allowing me to transition in the hallways separate from the other students, not going to the cafeteria, or music class or wood shop class, minimizing my time spent in core (an even louder part of the school), creating a special hand gesture I can use with students and staff when it’s too loud,  allowing me to leave the classroom when there is movies or music, etc. Despite all of this attending Homewood is very painful for me. The sounds of students and teachers talking in the hallways, noise from other classrooms, objects moving or falling, bells, walkie-talkies, intercom system, multiple people talking and laughing are very painful. I am not only in pain while I am at school, but I am also in pain after school, on the weekends, and days off.  I am now currently in the 10th grade and have been attending Homewood for five years. Although I have managed to attend Homewood, The pain level is intense but just below intolerable. I am on able to do homework after school or do much of anything after school as the pain is very severe. Most of the time I just want to rest and lay down; it's hard for me to get up in the morning and still be in pain from the day before and know that it’s going to get worse when I go to school. It’s very difficult for me to attend five-day weeks and when there is not a day off. I usually end up being  absent one day

due to the pain buildup. Despite all of this, they do not want to do home and hospital because it is not a long-term solution due to LRE (least restrictive environment). I have been in contact with Hyperacusis Research and organization dedicated to finding a cure for Hyperacusis. ( Hyperacusis Research Limited) I follow the research very closely and am in communication with the President Bryan Pollard. (bryan@hyperacusisresearch.org). Bryan Pollard has agreed to set up for me to have media coverage in the newspaper and TV about my efforts to get a Hyperacusis school program. This  he says will help promote my efforts as well as hopefully allow me to connect with the other approximately 16 students in Maryland with Hyperacusis.  Below is my personal account of all of the different sounds throughout my school day that are painful and what the pain sensations are like to help do you understand why these students need a specialized hyperacusis school program.

 

 

 

Attending School With Hyperacusis My Experience

         I put on my backpack and my Sony headphones and opened the car door. I walked briskly to the school door. I hope someone comes to open the door soon. My four head throbs from the car engines and other outside noises. Mr. H opens the door,  I walk down the hallway I can hear women talking and laughing loudly it worsens The throbbing pain on my four head and the sides of my head above my ears I try not to cringe. I set my backpack down on the floor and took out my iPad locker key and phone.  I push the button on my locker and swipe the key in front of it. It makes a loud automated half beeping half crunching sound which causes both sharp pain in my temple and ear and throbbing on my forehead. I tried to wrestle my backpack into my locker. The zippers on my backpack are metal and clank against the locker walls this and sharp pain into my ear and temple. I walk into the storage closet and get my backpack  then I unplug my Vizio and shut Mr. L’s door before the other kids start to arrive. I walk over and sit down at my desk carefully not to let the chair leg touch the desk leg and put my Vizio iPad cell phone and locker key into my backpack. The kids start to enter and they open the classroom door increasing the level of noise coming from the hallway. One of the students closes the door and they all sit down, someone's chair clangs against the desk creating sharp pain in my temple and ear.  “All right everyone let’s circle up Mr. L says”. I turn my chair around carefully to face the circle. Mr. L goes over the agenda for the day and talks about some other events happening later in the week someone says something and then Dr. F and Mr. L start talking and laughing to loud. This causes more throbbing pain on my forehead and The side of my head above my ears. My watch vibrates silently on my wrist letting me know it’s time to go sit in BSI before the transition. I turned around my chair and pushed it in carefully then I took the handle on my backpack and tried to carefully roll up with the chairs so that it doesn’t make noise. I open the door and walk down the hallway I can hear people talking loudly which causes throbbing pain on my forehead. I walk into Miss Y’s office and shut the door I walk over to the volume control and turn it down to zero about two minutes later the bell rings  even with The speaker on zero I can hear it from the hallway but luckily it’s not as painful. A bunch of students and staff walked through the hallways talking and laughing very loudly the throbbing pain on my forehead and the sides of my head above my ears increases, they do this for about three minutes. Then the second bell rings people are still in the hallways talking loudly for about another minute. I wait for the hallways to clear then I walk down the hall to Mrs. LT’s room for Spanish class. I close the door carefully as I walk in the door squeaks sending sharp pain in my ear in Temple. I try to pull out my chair carefully so as not to hit the table E and O and Mr. G is already sitting at the table I pull out my iPad and start working on the packet for this week. As I work I can hear the sounds of people talking loudly in the hallways. It is painful. Miss LT rummages around in her desk. It sounds like she’s banging it causes throbbing pain in my forehead and the sides of my head above my ear. I keep working on my iPad, luckily O and E have very quiet voices. I share my document with Mr. G then my watch vibrates letting me know it’s time for me to go. I put my stuff in my backpack and walked over to the door I managed to open it without it squeaking I walked down the hallway to Mr. H office. I gently shut the door and then walk over and turn off his music then I set the announcement volume on zero. About a minute later the bell rings students and staff talk loudly in the hallways intensifying my pain. This continues for about three minutes then the bell rings, fortunately they settle down pretty quickly. I slowly open the door and walk down the hallway which is still painfully loud for me to Mrs. F room. I close the door gently so that it doesn’t make noise then I walk over to my desk and try to carefully pull out my chair. I took my Vizio out of my backpack and tried to gently set it down on the table then I start working on my math worksheet. I can hear people talking loudly in the hallways, my forehead and the side of my head above my ears intensify the throbbing pain. About halfway through class Miss B comes in.  Later my watch vibrates I try to quickly and quietly pack up my stuff I walk out the door and into the hallway to Miss Y’s room   

I go in and shut the door A few seconds later Miss B comes in.  The bell rings and students and staff start talking loudly. Their voices cause more throbbing pain. The second bell rings but the hallways take a while to quiet down  then Miss B and I walk to the double doors leading outside. Even though it’s loud outside it’s quieter to walk around the outside of the building then through the hallways. Someone started using a power tool which  causes the throbbing pain on my forehead and The sides of my head above my ears to increase I run to try to get away from the noise. Miss B opens the door and I wait in the vestibule while Miss B asks people to be quiet because the students are talking very loudly in the hallways. Their voices are very painful and cause sharp pain on my temples and throbbing pain on my forehead. She’s finally able to get the students to quiet down for long enough for me to run to the room Mrs. B puts the quiet sign on the outside of the door and then closes it. I start reading braille but after about a few minutes the kids are shouting and there’s a lot of banging noises I cringe because the shouting and banging causes throbbing and stabbing pain in my ears, temples, forehead and The sides of my head above my ears it feels like I am being punched repeatedly with something sharp. Miss B goes out into the hallway to try to get the students and to staff quiet down. They quiet down slightly but then later on start shouting again, which intensifies my pain. I do some brailing on my brailler I try to push down on the keys gently but it still sounds sharp pains into my ear and temple. My watch vibrates  letting me know it’s time to go. I start to pack up then Miss B walks outside to ask the students to quiet down so I can run to the vestibule. I walk with Miss B around the school building and back into Bridges. The kids are transitioning so I wait. People are talking loudly in the hallways, my head throbs. Finally the hallways begin to clear and I walk down the hallway to Miss LT’s room there still people talking loudly in the hallways which is painful for me. I open the door and step inside and gently close the door. I walk over to my desk and try to gently pull out my chair so that it doesn’t make noise. I take out my iPad and Visio and start working on my work. Some people are talking loudly in the hallways which makes my forehead throb with pain. Mr. H opens the door to bring in my snack. The door squeaks sending sharp pain through my ears and temples. I eat my snack and continue working on my work. I wish I could just put my head down and rest. I'm in so much pain from the daily noise so far today but I know I need to keep working on my work. The pain is starting to make me feel very tired and exhausted. My watch vibrates letting me know it’s time for me to go, I pack up my stuff and gently push my chair in  I walked down the hallway into Mr. H’s office and turn off his music and make sure the announcement volume is set to zero. Then I shut the door, about two minutes later the bell rings and people start talking loudly during the transition. The pain now makes me feel weak and exhausted. Just three and a half more hours left until the pain would at least stop increasing about 3 1/2 hours I tell myself. The second bell rings I wait for the hallways to clear then walk to Mr. L’S room. I tried to gently close the door behind me then I tried to carefully pull out my chair so as not to hit the desk. I pull out my iPad and start working on my work. Mr. L’s is explaining the assignment to the class. I put up my signal to remind him to lower his voice as he is speaking painfully loud. I work on my work my head is throbbing with pain I can hear them watching a movie in Mrs. LT’s  room. It is loud and causes more throbbing pain on the sides of my head above my ears. I can hear Miss LT talking loudly through the wall as well. Finally my watch vibrates letting me know it’s time to go I pack up my iPad and try to gently push my chair in I walk down the hallway towards Miss Y’s office I can hear the sound of someone walking with high heels on it sends sharp pains through my ears and temples. I walk to Miss  Y’s office and turn down the volume on the speaker then I gently close the door. The bell rings and the hallways get even louder  students and staff start talking loudly creating more throbbing pain on the side of my head above my ears and on my forehead. After about three minutes the halls begin to clear and the second bell rings I get my locker key and head into the hallway. I can hear staff talking loudly and someone else walking in heels which increases my pain. I press the button on my locker and swipe my card in front of it makes that loud half crunching have a beeping noise again causing sharp pain in my temple and ear and throbbing pain on my forehead. I open up my backpack and take out my lunchbox and then walk back into Miss Y’s office. I carefully pull out the chair and then gently unwrap the tinfoil on my bagel so it doesn’t make noise. I eat my lunch then the bell rings for sixth period. The halls get louder again as students and staff transition. Miss Y steps out and tries to quickly close the door behind her. The noise in the hallway only intensifies my pain. The second bell rings but I wait a while for the hallway to clear. I carry my lunchbox over to my locker press the button and swipe my key. Again the locker makes a loud Half crunching half beeping noise sending sharp pain into my temple and ear and throbbing pain on my forehead. I walk to Mr. C’s room for government class The hallways are noisy my head pulses with pain so I speed up and then try to quickly close the door as soon as I get into Mr. C’s room. I try to carefully pull out my chair so that it doesn’t make noise when I sit down and take out my iPad to do my work  A few minutes later some kids are making a lot of noise outside of Mr. C’s window which increases my pain Mrs. Cn tries to signal to them to quiet down. After a while my watch vibrates letting me know it is time for me to leave I pack up my iPad and gently push my chair in I walk through the hallway into Miss Y’s office and gently close the door behind me. The bell rings about a minute later and the hallway gets loud again. My head throbs with pain finally the hallways begin to settle down and the second bell rings. I open the door and walk down the hallway to Miss LT room I tried to gently close the door behind me but it still squeaks sending sharp pain through my ears and temples. My four head and temples ears and the sides of my head above my ears all hurt so badly I just want to put my head down and rest this pain is so tiring. I pull out my chair carefully and sit down. I take out my Vizio book and try to gently place it on the table I work on my work. The noise from the hallway continues to increase the throbbing pain on my four head and the sides of my head above my ears. Finally my watch vibrates letting me know that it’s time to pack up to go home. I plug in my Vizio book and take out my iPad locker key and phone from my backpack. I swiped my locker key in front of my locker and press the button again it makes the half beeping half crunches noise causing more sharp pain in my temples and ears and throbbing pain on my forehead I get the backpack from inside my locker and put my phone, iPad and locker key in there then I take my school backpack and put it in the storage closet. I go stand in the vestibule, my mother walks up to the door and I walk with her back to the car there’s a lot of buses with their engines going it is exacerbating the throbbing pain on my forehead and the sides of my head above my ears.