Did You Grow Up with Hearing Loss? Lipreading Mom Needs Your Help with “Project Language & Literacy”

 

My first experience with hearing loss occurred in kindergarten. When the teacher asked the class to listen to and respond to questions through headphones, all I heard through them was garbled speech. The audiologist later told my parents that I could hear normally, but that I just needed to pay attention. From the age of six to the age of 27, I lived with a misdiagnosis of “can’t pay attention” instead of hearing loss. This misdiagnosis  meant that teachers, friends, and family members thought I was daydreaming or tuning them out when, in fact, I couldn’t hear them clearly. Years later after my oldest child was born, I received the official diagnosis of sensorineural progressive hearing loss. This meant that I could not hear many speech sounds clearly, and the doctors determined I had probably lived with the hearing loss for years.

Because of growing up as the girl who “can’t pay attention”, I have such a heart for children who have hearing loss and I want to be an advocate for them. If you know a young child who has hearing loss, I am sure you feel the same way.

Here is how Lipreading Mom needs your help: “Project Language & Literacy”

As part of my graduate school work to become a special education teacher, I am researching the language and literacy development of children with hearing loss or deafness. I am also researching teaching methods and interventions to help preschool-age children with hearing loss/deafness develop strong communication skills.

I am looking for teachers or parents of children with hearing loss/deafness as well as adults who grew up with hearing loss/deafness to answer a few questions related to language and literacy. Here are some of my questions:

  • Which communication method do you prefer: speech, sign language, Cued Speech, or speech and sign?
  • What teaching strategies worked best for you or your child in developing language and literacy skills?
  • If you had it to do all over again with you or your child growing up with hearing loss, what would you change?

Share your answers in the Comments below, or contact Lipreading Mom at lipreadingmom@gmail.com (Subject: Project Language & Literacy).

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17 thoughts on “Did You Grow Up with Hearing Loss? Lipreading Mom Needs Your Help with “Project Language & Literacy”

  1. Pingback: Did You Grow Up with Hearing Loss? Lipreading Mom Needs Your Help with “Project Language & Literacy” | Katherine Bouton

  2. Lost partial hearing in one ear as a child as a result of whooping cough/ear infection. Fortunately I have excellent hearing in the other ear or would have had more problems. Did well in school somehow. I only recall thoughtless people once in a while saying, “What’s the matter? Are you deaf?” It hurt but I survived. Hearing decreased in that ear as I aged and even though grade school noted it, nothing was done. As an adult, all hearing in that ear was gone and I got a bi-cros hearing aid set. Awkward, but OK. Not ideal as I didn’t know where sound was coming from. I gave it up after about 2 years of trying. I always used speech as my communication but frequently had to turn my head, point to my hearing ear and explain. Got tired of saying, “I’m deaf in that ear.” I could never use a phone on that side. My first audiologist (adult at this time) required me to attend a hearing training class which was a big help. Wish there was more patient support through my growing up years. Learned some ASL which gave me more confidence but more hearing people are aware of that language so it’s a lonely road. Got a Baha 2 years ago and love it. Still learning and self-training though Cochlear online courses. Summary” oral speech is my primary language; hearing training helps and gives confidence; highly recommend yearly hearing tests – with support from hearing people.

  3. My daughter Julia (currently age 13) was recently diagnosed with audiological neuropathy. Essentially, her ears work perfectly but her nerve is not working correctly so it is difficult for her brain to interpret what she has heard. For years and years, I knew she seems like she wasn’t able to hear me well, but she passed hearing tests and doctors wouldn’t listen to me. Finally, this summer we insisted on another hearing test and this time the audiologist took my daughter’s complaint seriously and tested her using an ABR test which gave us the diagnosis.

    Here are our answers to your questions:

    1. Julia and I mostly use speech. However, now that we know we aren’t “crazy” and that she really does have a hearing disorder, we are started to use some cued speech and are beginning to learn ASL as well. Julia does lip-read and over the years we have learned to get her attention and communicate in a place with very little background noise.

    2. Julia is homeschooled. While not exactly a teaching strategy, it is something that works incredibly well for us. She is in a quiet place with one-on-one instruction. I am able to coach her to focus and listen without the shuffling of feet, books, papers, noisy AC or heating units, etc. Julia was the slowest of all my children to learn how to read, but once she learned she truly blossomed. She is still a poor speller, and struggles with things like rhyming words. But as she has grown older, I am teaching her how to spell check, etc. Mostly what Julia and I employ is just lots of awareness … awareness of her weak spots, awareness of the need to learn in a place where she can hear at her best (quiet, etc), awareness that her struggle is not indicative of her intelligence or capability to learn.

    3. I would have been more insistent with her doctors on getting further testing. There was no need for her diagnosis to come so late in her childhood. My mother has a cochlear implant. While she has never been diagnosed with audiological neuropathy, she does have many shared characteristics with my daughter. I regret not having pushed sooner for further testing or doing my own research to know what tests to even ask for … i didn’t realize there were other ways to test her hearing other than standard method.

    hope this helps you,
    Paige Hamilton
    paigehamilton@lusfiber.net

  4. I have severe to profound sensorineural hearing loss. I am 32 years old and wear BTEs. In elementary school I used what they called an auditory trainer that connected to my hearing aids and the teacher wore a microphone. I hated it because it made me “different.” I relied on lip reading in most other settings. I have a bachelor’s degree and relied on lip reading in all my classes. I often read the material before class so I had an idea of what was being discussed. I started speech therapy at 2 years old which was very beneficial. My mom was my advocate in elementary school by meeting with teachers before school started to help them understand my needs: mainly to be able to see their faces. She taught me to be my own advocate with teachers by the time I entered college. I was not a good advocate with my own peers, though. I tried to hide my “disability” and often made things worse for myself. If I had to do it over again, I would try to be more open with everyone about my situation.

  5. I used to wear behind ear hearing aid for years and now I’m using one cochlear implant N6 that helps me.

    Which communication method do you prefer: speech, sign language, Cued Speech, or speech and sign? “I preferred Speech and SIGNS (Total Communication)”

    What teaching strategies worked best for you or your child in developing language and literacy skills? “For me…My folks had me to go to KUMC Hearing and Speech center for me to learn to hear and speak (head phones etc) and body hearing aids.. Went to Pre school and Elem school with all oral classes. Then I went to jr high and high school without an interpreter!”

    If you had it to do all over again with you or your child growing up with hearing loss, what would you change? “Technology was not around the in early 60’s & 70’s and interpreter was not around that time.. It would be nice that i would learn both speech and signs so I don’t feel left out”! See what Nyle says!! “ASL is very important to early childhood”!!

  6. I have moderate hearing loss in both years. I use speech for communication. During my school days, I only wore one hearing aid. Teachers were told I had a hearing loss and I was always put in a desk in front of the classroom. College days were a little more challenging. Sometimes I would take a small recorder to a class and record the class. I started wearing two hearing aids 10 years ago. What a difference two hearing aids that work with each other makes. If they would of had these type of hearing aids back then I would of not struggled as much to hear. I have seen how the change in technology in hearing aids over the years has improved greatly for me.

  7. My father, my brother and I had severe mixed conductive and sensorineural hearing loss. Dad grew up in the 20’s and 30’s but didn’t go to a school for the Deaf until he was 12. He didn’t use sign language. My brother’s loss was found when he started school and then they tested me. I was 3. Both parents read to us often. We were gifted and could read before starting school, though we were late starting to talk. We had hearing aids and sat in the front of the room at school. I had speech therapy for a lisp in 8th grade. In college and medical school I sat at the front of the room. Assistive devices would have helped (I use them in meetings now) but weren’t available then. My biggest trouble was with professors with foreign accents or who spoke softly and faced away from the class.
    I learned to be open about my hearing loss when I joined SHHH (now Hearing Loss Association of America). I also learned about assistive devices from them. My medical school instructors were unaware of the needs of someone with hearing loss. The person with hearing loss needs to be specific about what he or she needs to hear, and to realize that they have a right to hear (especially if paying tuition)!

    • Hi Priscilla – Thank you for sharing about yours and your family’s experiences with mixed conductive and sensorineural hearing loss. I would like to ask you some additional questions related to your experiences. If you would be willing to answer more questions, please email me at lipreadingmom@gmail.com, or let me know the best way to email you. Blessings!

  8. Hi friend! With our daughter we prefer speech, however we do want to make sure that she is fluent in sign also. She and I started learing sign this summer and are hoping to continue this coming Spring/Summer. I am sure that she uses lip reading at times too, though.
    As far as school goes, she has an fm system that she uses at school. She takes the microphone to each of her specials too for those teachers to use. She doesn’t have a lot of accomodations, although she did have a few more when she was younger. I believe that she is able to take certain tests in a one on one environment, she uses over the ear headphones instead of the earbuds that the other kids use, and the videos that they watch in the classroom as supposed to be closed captioned for her. Katie has become a really good self-advocate and has learned to speak up when there is something additional that she needs to have repeated, etc.
    I don’t know that there is anything that we would changed as far as Katie and her hearing loss.
    Hope this is insightful. Please let me know if you need additional information from me.

  9. had hearing loss all my life, used hearing aids at 6 months old
    (used all total communication 1st and spoke when I was 6 yrs old)
    my mom is late deafened since 2014, got dxed October 2014 and with hearing aids at 54.
    *hers is from noisy environment where she worked, mine is definitely from the cigarettes during her pregnancy which can damage a baby’s auditory nerves so that’s my good theory here*
    and I have a grandmother using hearing aids too (same brand as me)

  10. I am a 22 year old senior in college with moderate-severe sensorineural HL since birth. Due to me being premature 2 months, they expected some challenges, so my parents taped BTE HA onto my ears because my outer ear cartilage was not formed yet (This we found out advanced me tremendously in the speech department, compared to others who were diagnosed much later). From Pre-K to 4th grade the teacher wore the mic that went directly to my HA (hated it as the only reason they were wearing it was because of me, which wasn’t normal). Then graduated special ed by middle school where I stopped getting pulled out of class for speech, but I was always in the general classroom as I went to private schools until college. Then in HS I did a lot of meeting with teachers in office hours to triple check my notes that I maybe didn’t hear, while sitting up in front of the classroom to hear and lip-read the teacher better. In college I am registered with disability services for students so they all understand if I go to them for extra clarification, but the fact that most of college is out of the textbook, I have a 3.5 gpa with mostly doing all the readings and never missing a class. As I have gotten better at lip-reading the last 15 years of school I no longer sit in the front of the class, I just make sure I can see them talking. Most of the challenge is at the beginning of the semester when I have to retrain my ears to understand a professor’s dialect and tone of voice. A unique thing with my diagnoses, is because I have always had HA and regular care from ENT’s I have never learned ASL, and don’t plan on it. The only thing I would have done better growing up, (which is very hard to do)is learned to accept the HA and embrace the the fact that I am an amazing lip-reader because of it, in addition to educate my peers at a young age. Also I think if parents explained to their children how life can be more fun if they wear their HA to participate in life more efficiently, rather a child wanting to be normal by not wearing his hearing aids, then get made fun of for having to constantly ask people to repeat themselves (this was mostly during jr. high when I got made fun of). Lastly a big educational tool for people with HL is to be educated and educate those around them, people with HL don’t know what sounds they are missing because they never heard them (this was a huge eye opener for me, and now I often use this example when people get frustrated with me for not responding to them trying to get my attention… sorry I didn’t hear you and then nicely remind them that you have a HL).

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