 Ashlee Rose:Tell us about yourself? Jennifer: My name is Jennifer and I fulfill many roles in my life: I’m a mother to three wonderful little boys, I’m married to an amazing man who also happens to be serving in the military, I’m also a part-time employee and student. Never a dull moment in our house! Ashlee Rose:How old was Nathan when he was diagnosed with a hearing loss? Jennifer: Nathan was 22 months old when he was diagnosed with hearing loss. He received his first set of hearing aids when he was 23 months old. Ashlee Rose:What kind of hearing loss? What hearing aids does he have? Jennifer:He has moderate bilateral sensorineural hearing loss. He wears Phonak Sky V hearing aids. Ashlee Rose:As a parent, what is it like to raise a son with a hearing loss? What was it like when you first found out and where are you at now? Jennifer:Finding out that Nate has hearing loss was very unexpected, to say the least. No one on either mine nor my husband’s family has hearing loss. We had some suspicions when he was a baby; sometimes he would respond to sounds, and other times he wouldn’t. When we found out that he needed hearing aids, and will for the rest of his life, we didn’t know what to expect. Would he be able to speak? Would he/we have to learn sign language? What kind of life would he have? We had no idea how to navigate this new journey we were now on. It has been 6 years since he was diagnosed, and the amount of progress he has made just absolutely blows us away! We were lucky and blessed enough to get him enrolled in an amazing school that taught him listening and spoken language. I have had many people tell me that if they didn’t see his hearing aids, they would never know that he has hearing loss. He amazes us everyday with his conversations and understanding. Everyone who has met him knows what a sweet and kind amazing little boy he is, and we couldn’t agree more! Ashlee Rose:Now he is being mainstreamed at school, do you face challenges like fighting for his rights to accommodate his needs at school? Jennifer:His mainstream school has been very supportive when it comes to accommodating his needs. He has had 2 amazing teachers of the deaf, wonderful speech therapists, and another awesome teacher! They have all been so supportive of Nate, and they help make sure he gets what he needs. Ashlee Rose:Does he play sports? Do you do anything to prevent sweat from his hearing aids? Do you guys notify referee at games about his hearing loss? Jennifer:He loves to play sports! He has played soccer and basketball so far. We have used a product called sweat bands to help the sweat from getting in his hearing aids. We haven’t needed to notify the referees at games, but we do let his coaches know about his hearing loss. We use an FM system at home, and we use it at all of his games. It helps tremendously! Ashlee Rose:How does he advocate himself at school or respond to his peers’ questions about his hearing loss? Jennifer:When he gets asked about his hearing aids, he just tells them, “They’re my hearing aids!” He is so cavalier about it that the other kids just go with it. Since he uses an FM system at school, he is in charge of making sure it is connected properly, and is working the way it should be. He also changes his own batteries so he has to communicate to his teacher when he has to do that. Ashlee Rose:What does he like to do? What would he like to be when he grows up? Jennifer:He loves to play with his little brothers. He also loves to play on the computer. His favorite games are Minecraft (he can talk about Minecraft for hours!), Fortnite, and Roblox. He also enjoys watching DanTDM videos on YouTube about all the games he likes to play. Every year I ask him what he wants to be when he grows up, and so far it’s been the same each time: he wants to be like his daddy! Ashlee Rose:Do you have any advices to other parents who are in the same boat as you? A favorite quote to help others to feel inspired throughout their journeys? Jennifer:My advice to other parents is don’t be afraid to ask questions. Whether it be to healthcare professionals, school representatives, or other parents who are on a similar journey. And don’t forget: YOU know your child the best. You are his/her best advocate. You got this!
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 Ashlee Rose: Tell us about yourself
Bella:My name is Bella and I’m a curly hair enthusiast. I’m a mom and wife. I was born in Puerto Rico, raised in New Jersey and currently call Florida my home. I enjoy blogging about hair, makeup, and skincare. Some of my hobbies are singing karaoke and going on bike rides. I love spending time with my husband and children. Ashlee Rose:How old were you when diagnosed with a hearing loss? Bella:I was in my 30’s when I was diagnosed with hearing loss. At the time, I was residing in New Jersey and I noticed that my hearing seemed to be getting worse (I struggled with it for as long as I can remember). My hearing loss was interfering with my interaction with others at work. I made an appointment to see an audiologist and the audiologist confirmed that I in fact was suffering from hearing loss. At that time, I did not get hearing aids. I figured that if I had gone most of my life struggling to hear that I could continue to do it. However, it wasn’t that simple. I work in a “hearing” environment and certain things are expected of me. I had to make a decision. So, about 3-4 years ago, after I had moved to Florida and began a new job, I made another appointment with an audiologist. My diagnosis was the same and they urged me to get hearing aids; they felt that it would help me at work & just with social interaction. It can be very stressful to not hear when you are in a large conference room, sitting in the back, trying to hear the speaker in the front of the room when others can hear a pin drop. It was also affecting my health, to the point of being in tears due to stress because I didn’t want my work to suffer. Eventually the stress got worse and I developed a heart condition. Although it is possible that my heart condition was always present but never fully developed, the stress definitely made it worse. Ashlee Rose: What kind of hearing loss do you have? Was the cause discovered? Bella: I have bilateral sensorineural hearing loss. The cause was not discovered. It is believed to be genetic. My mother was diagnosed with hearing loss recently and my nephew has cochlear implants. Ashlee Rose: What kind of hearing aids do you have? Bella: I have two AGX hearing aids. Ashlee Rose: Do you use ASL or oral approach? Bella:I use the oral approach, but I would like to learn ASL. Ashlee Rose:When you are at work, do you have accommodations or communicating tips with others in a work environment? Bella:I have a phone amplifier for my desk phone. My coworkers know that I am deaf and they are very considerate. Before they knew about it, they thought that I was ignoring them. It wasn’t until I told them that it all made sense to them. Ashlee Rose: You created @HearForTheCurls Instagram account, what inspired you to do it? Bella: I created @HearForTheCurls because I felt as though I had much to share about my experiences. I wanted to reach out to the curly community, but also reach out to anyone who is D/deaf. As I began to reflect on my entire life, I noticed that I struggled with my hearing for as long as I could remember. Because of that, I felt that creating a platform where I could share some of my challenges and how I overcame them was extremely important. I didn’t wake up deaf; I’ve been deaf, even prior to my diagnosis. I still have “aha” moments when I think back about things that happened related to my hearing loss and how they make more sense now. Since creating HFTC, I’ve had people send me private messages telling me how they believe they also have hearing loss or they know someone who has hearing loss. Sometimes people forget that there is an entire population somewhere between Deaf and Hearing. I am not completely Deaf. I’m somewhere in the middle, if that makes sense. I think that I can bring both worlds together to help people be more compassionate and understanding. Being deaf is not a handicap to me. It’s just part of who I am. (Just FYI, Deaf pertains to those who are part of deaf culture, who mostly rely on sign language to communicate. The word deaf, with a lowercase “d”, pertains to those who have hearing loss who are not necessarily heavily involved in deaf culture, but are more part of the hearing world). Ashlee Rose: What story would you like to share with us D/deaf individuals and parents of D/deaf and hard of hearing children about your hearing loss? Bella:I had a coworker who didn’t know that I was deaf. She was under the impression that I did not like her because she would say “good morning” to me (obviously too low for me to hear) and I wouldn’t reply back. She approached another coworker and told her “I don’t think Bella likes me. I say ‘Good Morning’ and she doesn’t reply.”The coworker who knew about my hearing loss said “No, it’s not that. Bella is deaf. You have to speak a little louder and clearer so she can hear you.” Sometimes people are simply uninformed and they base their decisions on what they experience or on what they see. It’s okay to meet people half way, inform them of your situation, ask them to speak up (but not shout). Ashlee Rose: Do you have any advice do you have for parents of deaf and hard of children and other deaf individuals? A favorite quote you would like to share? Bella:My advice is to let your family and friends know what you feel and what bothers you, even if it annoys them. It’s not easy to live in a household where everyone else hears fine. Very loud noises bother me and I cannot comprehend whispers. I have to constantly remind people of this and sometimes they don’t get it and that’s okay. I can’t expect someone else to understand what I’m living with. I can only try to help them understand & be the best version of myself that I can be. In the end, my test is my testimony and they will learn through. If I had to choose a favorite quote, I would choose the following: “Tough times don’t last, but tough people do.”  Ashlee Rose: Tell us about yourself (Anything about yourself, hobbies, dogs, etc) Kate: Hi, I am Kate. I was born with a moderate degenerative hearing loss. Today, I have a severe to profound hearing loss. After high school, I participated in two Americorps programs, the NCCC and the California Conservation Corps-Backcountry Trails. I earned two scholarships completing both programs to use towards school. I was fortunate to work for the Inyo National Forest and the Humboldt-Toiyabe National Forest on the Trail Maintenance crews with the Forest Service for a few years in Mammoth Lakes and Bridgeport, CA. I had a friend on the Trail Crew who brought me and a couple other trail buddies to the Kern River, where he rafted boats in white water on his days off. I fell in love with the river and participated in Guide School with Kern River Tours the following summer. I worked for KRT for 5 seasons. I was responsible ordering and restocking food for day and overnight trips. The manager was my roommate in Mammoth and connected me with this position because of my employment experience in produce, dry goods and cheese. I loved it. I also guided Class 2-3 trips the first two summers until I was confident. You have to keep in mind, I wasn’t able to wear my hearing aids on the water. I learned a lot by watching my peers and jumping on another river guide’s boat any chance I got so I could check off with a Senior guide. I studied how to read the lines and why boats maneuvered the way they did, and got used the vibrations of the loud roaring rapids under my feet. I had to work harder to prove I was capable of being a river guide and I succeeded. When I asked the manager, can I guide Class 4 trips? She was truly concerned. And said “I’m not so sure about that.” The owner of the Whitewater company said “I don’t care if you can’t hear your people in the boat, they need to hear you.” And he looked at the manager and said “Go ahead and put Kate on Class 4 trips.” That was the best thing I “heard.” “Heard” meaning I read their lips. ️ I guided trips on overnights in Class 4 sections for 2 and half more seasons after that. This is probably my proudest accomplishment to list, after my children of course. You could say I was a ski/river bum while I was growing up in my 20s and finding my own identity, while being in the great outdoors where I always felt at home. Currently, I am a stay at home mom of two, and I walk dogs professionally for four permanent clients full time. I love it. And my kids get to come with if they are on school break. Bonus: I am my own boss. Ashlee Rose: How old were you when diagnosed with a hearing loss? Kate: I was born in the mid 70s when hearing screenings were not offered. My mom had her suspicions but they were not confirmed until 5 months before my 3rd birthday. Ashlee Rose:What approach did your parents take? Kate: The family doctor advised early education, hearing aids (BTE-Behind the Ear) and speech. I started early intervention shortly after my diagnosis and attended school with other peers who had some type of hearing loss. Ashlee Rose: How were your experiences in school while growing up? Kate: I loved school at a young age, where I rode the short bus across town to attend a mainstream program with other hard of hearing and Deaf students. I also missed being close to home and my older brother. I asked to attend the same school as my brother in 3rd grade. The first two years were fun, minimal being picked on, until 5th grade when cliques formed. I was bullied heavily until I transferred to MSAD (MN State Academy f/t Deaf) early in my sophomore year. Middle school was a terrible experience for me. On top of being picked on daily, I was failing classes with no help of an interpreter. Being “hearing impaired” was finally catching up and I could only get so far with wearing an amplified telex/microphone and lip reading. I was exhausted, trying to keep up in my studies, trying to read lips nonstop, speech lessons, tutoring after school and I fell into deep depression and dreaded going to school. Sports became my outlet. I played volleyball, basketball and softball. In the summer after 8th grade, I attended camp held for Deaf and HOH teens like me for two weeks. After returning home from camp, I begged my parents to let me go to the Deaf school for over a year and they finally gave in. Ashlee Rose: What device do you have? Have you experience insurance issues for the hearing aids? Kate: I have always worn bi lateral BTE hearing aids. A few years ago, I received my first pair of Digital hearing aids and I dislike them. I’ll wear them on my ears for a visual aid to save a lot of trouble when I am out and about, but often times they are in OFF mode. I miss analog. Yes, I am aware there is an “analog” feature on digital hearing aids but it is not the same. Insurance does not cover hearing aids, no surprise. Fortunately, there are wonderful programs that will assist with new hearing aids. I’ve been fortunate to get assistance from the Hear Now Foundation, the Lions Club and Vocational Rehab. If you are currently employed and need assistance with new hearing aids, contact your local Vocational Rehab office. Ashlee Rose:Do you use the telephone- how do you communicate with offices for doctor appointment, car situations, or anything in general? Kate: I used to own a Caption Call phone but as the last couple of years progressed, my hearing has taken more of a decline and I found myself more comfortable with an app I installed to my smartphone and iPad. It’s the Sorensen Ntouch app and its a wonderful resource if you are fluent in ASL. I make doctor and any other medical, including dental appointments using our MyChart account or email. My children’s schools also use the Class Dojo app which is also another great tool for any Deaf/HOH parent. It alerts me if they need my attention. Ashlee Rose:What is it like parenting to two hearing children? How are they doing with ASL? Kate: I have a 6 year old and a 4 year old. They are both hearing and know American Sign Language. I started signing with my babies right away and their receptive skills are awesome. My son has special needs and using ASL was beneficial to him before he started talking. He may have some developmental delays, and at his recent IEP, they say his language is excellent. His speech is fine. Learning ASL has not stopped my kids from talking in their voices non stop. they also have been learning Spanish words often from their bi lingual (English & Spanish) friends/classmates in school. How cool is that? It’s mind blowing how young children pick up a second or even a third language naturally, if another language is being used in the home full time. I sometimes speak and sign, but now that my son is a little older, I do not use my voice as much. Sometimes I go a whole day at home without putting my hearing aids on. My children understand I cannot hear and are accommodating to my needs. For example, they come to me for attention, my oldest voluntarily signs with me all the time, or lets me know if someone may be at the door. Ashlee Rose:Do you attend CODA events? If so, what is it like? Kate:We attended a language play group offered for deaf, HOH babies ages 0-3 and for children of Deaf adult/s with Hands and Voices in Reno. After my son started attending Special Ed at age 3, we stopped going. Ashlee Rose: Do you have a favorite quote that you would like to share with others? Also, what advice would you give to parents of deaf and hard of hearing children and individuals with a hearing loss? Kate: I love mindful and solitude quotes, many by Thich Nhat Hanh, John Muir, “the mountains are calling and I must go,” and be kind quotes, “Kindness is a language which the deaf can hear and the blind can see.” If anyone was to take my advice, I would encourage Total Communication, both speech, if beneficial long term, and American Sign Language with your child, peer, partner, family member, coworker... etc. It feels good as a Deaf individual to be in an environment where you understand what’s going on 100%. I am 42 years old and it took 36 years to have the first member/s in my family learn ASL fluently, my children. ️   Ashlee Rose:Tell us about yourself Michael: For work, I am a substitute teacher for middle school and high school. I have a bachelor’s degree in Mathematics Education with a minor in Art Studios from Humboldt State University. I am currently in graduate school taking online classes through Black Hills State University. I am working on getting a Master Science of Secondary Education in Mathematics. I plan to teach Mathematics at either middle school or high school. For fun, I live in the beautiful countryside. I am a lover of the great outdoors. Outdoors is my best friend. I love to go hiking, fishing, backpacking, kayaking, camping, golfing, to the gym, hunting, snowboarding, cross country skiing, and snowshoeing. Ashlee Rose:How old were you when you were diagnosed with a hearing loss? Michael: I was a premature baby by two months early. I was around two years old when I was diagnosed as profoundly deaf. Ashlee Rose: What approach did your parents take? Michael :Since I am the only deaf adult in my family, my parents did not have the resources like in today’s modern world on what to except having a deaf child. Resources like social media, technology, or programs were not available for my parents and me. My parents did their best to gather information and found this "special" program. They enrolled me in a “special” program where I could interact with disabled people. The "special" program was from pre- kindergarten to second grade. After the “special” program, my parents and I moved to a different city. They enrolled me in public school. Ashlee Rose:How was your schooling experience with a hearing loss? Michael:I attended public school, community college, and university. The schooling experience was somewhat challenging. Some days were good, or some days were terrible. But I always managed to overcome the barriers every day. I always reminded myself to take one step at a time. I had a few speech-language pathologists. They helped with my homework and worked on my speech discrimination. I had to work extra harder during my years of schooling. For example, a professor was lecturing the class while I was looking at the back of the head. There was some missing information that I did not gather. I would go to the library to figure out what I missed or asked a friend that was in my class to help me out. I had some accommodations when I was in college. I had notetakers, video transcripts typed, and double-time when I was taking tests. The accommodations were a little helpful. It was mentally and physically exhausting. I embraced the hardship daily. Ashlee Rose: Since you are an adult, how has the job world been treating you? Did you face any difficulties or a moment to advocate for yourself? Michael: I worked in the construction industry for ten years. I was an estimator. It was a job where I spent a lot of time reading the blueprints, using my knowledge on mathematical performances, and emailing with the clients. It was the only job that I can think of without using a telephone for communication. Emailing was an effective way of communication. It was complicated for me to stay on task and to keep up with others in a fast pace. Being an estimator required submitting the proposals with the right number without checking your work twice before the deadline. There were always pressure and high stress being an estimator. I just had to take one step at a time and adapt to the difficulties. Ashlee Rose: I see that you love spending a lot of time outdoors hiking and such, do you wear your hearingaids when hiking, swimming, out in the snow? Anything particular? Michael: I carefully watch sweat when I am hiking or running. When I am running, I usually wear my headband to avoid sweat. I take my hearing aids out when I am swimming or playing in the snow, and I do not like that. Whether I wear or do not wear hearing aids, I get anxiety when approaching to new people or worry about others negatively judging me. Ashlee Rose: What made you look into a Cochlear Implant? What brand did you decide on? Michael: I wore my bilateral hearing aids from age two to age thirty-seven. After college, I felt like I needed to do something with my hearing. I was getting a lot of miscommunication. I was not getting everything that I should be getting out of everything. I found the right time and opted to get a Cochlear Implant in September of 2018. I decided to go with Advanced Bionics. I have Naida CI Q90 Sound Processor. Ashlee Rose: How is the process with the Cochlear Implant? Any regrets? Do you have anything that you like and do not like about Cochlear Implant? Michael: The process with the Cochlear Implant is prolonged. Anyone who gets a Cochlear Implant is different. I am wearing one Cochlear Implant with no other hearing aid. I hear more sounds that I have never actually heard before but not entirely clear yet. It sounds like a robot voice or duck quacking, and eventually, it will evolve into “normal” speech. It is a lot of work for the brain to “retrain” new sounds. I do not have any regrets. I know I made the right decision and what to expected after getting my Cochlear Implant. I did my research by interviewing different doctors and audiologists. I found the secure connection with my audiologist and doctor knowing that we will work hard together for my hearing to be successful. Advanced Bionics offers some great technology accessories. I have Roger Select, and it is convenient. I can listen to my music through Bluetooth using Roger Select from any devices such as smartphones, laptops, iPads, or devices that are compatible with Bluetooth. With the excellent use of Roger Select, it would be optimistic for my teaching. Ashlee Rose: Do you have any advice for the parents of deaf/hard of hearing children and deaf/hard of hearing individuals? Michael:My advice is PATIENCE!!! We are human beings. Never give up on them. Do some research to find essential information on what is best for you and others. You will be surprised by the outcome from them to be successful when you give all your full support to them. Always remind them to be loved. Quote- "Deaf people can do anything hearing people can, except hear"-Dr. King Jordan   Ashlee Rose :Tell us about yourself. Kimberly: My name is Kimberly Hastings- I’m a wife, Mom, sister, daughter.. the list could go on and on. My family is my top priority in life and love. I fill my days as the Manager of Alumni Relations for Midwestern University. My weekends are filled with family- either on the soccer field with Colt or at the baseball diamond cheering on my oldest son, Brody and the occasional sushi date night with my hubby, Jay. Ashlee Rose:How old was your son when he was diagnosed with a hearing loss? Was the cause discovered? Kimberly: Colt was diagnosed with a hearing loss within a few hours of being born. We learned of his loss at his newborn screening. Colt’s cause was never determined, although we did every test we could, including the DNA test to see if the loss was hereditary, it wasn’t. Dr. Macias, Colt’s surgeon who implanted Colt told us we would never know why, but he was confident cochlear implants would change Colt’s world and ours. He was absolutely right. Ashlee Rose: How did you feel when you first found out about his hearing loss? Kimberly: My husband and I were devastated to learn Colt was profoundly deaf. We were in disbelief as neither of us have a history of hearing loss. To hear your child can only hear a jet engine is not what any parent ever wants to hear. We immediately turned our devastation into finding answers. Ashlee Rose:What approach did you and your husband take? Kimberly:We learned that asking questions and researching would lead us in the right direction. We discovered Desert Voices Oral Learning Center, a local nonprofit which changed our lives and gave us a sense of community. Colt started with speech therapy a few hours a week when he was only a few months old and eventually he was a full time student, even graduating when he was five years old. When Colt was 5 months old, we first tried hearing aids hoping and praying Colt would respond. Unfortunately, Colt’s loss is so severe that hearing aids didn’t help and our second option was cochlear implants. Colt was just under two when he received his first cochlear implant. He immediately responded and there were many tears of joy. When Colt was just under five years old, he received his second cochlear implant. Colt worked very hard putting in six hours a day at Desert Voices to learn to hear and speak and thanks to his hard work, Colt was mainstreamed into the public school system at six years old. Ashlee Rose:How was the process of getting Cochlear implants and the results? Does he enjoy going to audiology? Speech and school? Kimberly: Surgery is never easy, but we were confident the surgery would be a success. And both times, Colt responded beautifully to his cochlear implants. Life really is a journey and it’s the same with cochlear implants. The implants were the tool and it was Colt’s dedication and hard work along with Desert Voices teachers and speech therapists that gave Colt a voice and taught him to hear. Due to everyone’s determination and focusing on the positive, to this day Colt is a typical 9 year old little boy. The best compliment we hear is that “we would never know Colt has a hearing loss if we didn’t see his cochlear implants.” Colt’s speech is so clear and his ability to hear even the slightest sounds amaze us every day. Ashlee Rose: Tell us about Colt, where is he at with school, friends, and sports? What does he want to be when he grows up? Kimberly: Colt’s in third grade at Legend Springs Elementary- he’s a straight A student. His favorite class is Math and just recently his Music class introduced violins and while it’s challenging, Colt’s loving it. When he’s not in school, you can find him in his Neymar jersey on the soccer field. He’s extremely competitive and is a natural athlete. Colt’s also the life of the party- he gets along with everyone and we hear time and time again how kind he is to all his classmates. Ever since Colt was a baby he’s been intrigued and told us he would be a pilot- at nine that’s still his dream job! Ashlee Rose:Does he have any special equipment or devices for schooling or sports during practices and games? Kimberly: Colt’s school, Legend Springs Elementary was so gracious with the transition to public school- in Kinder, Colt found success with the teacher wearing an FM system. Colt also utilizes a mini mic that has helped assist when the use of headphones is required. When Colt plays soccer he wears an Under Armour headband to help keep his implants on. Ashlee Rose: While he was growing up, was there a significant moment you would like to share with us? (Colt, devices, audiology, school/sport or parenting :anything ) Kimberly: One defining moment that I like to share is when Colt was implanted with his second implant and we arrived at the audiologist for the activation. It’s always an anxious time, but as soon as the implant was activated, Colt proclaimed “ I do hear it.” Four words that forever changed our lives! And what made the activation even more special was I recorded it and Colt’s Grandma was able share in the joyous moment. To this day, every time I see an activation video I tear up. It’s the first step of a long journey and I can truly say the good outweighs the bad. Ashlee Rose: Is there a favorite quote you would like to share with us? Also, what advice would you like to give to other parents of deaf and hard of hearing and deaf individuals?(Also, does Colt have an advice? Any inspiring message to share with others) Kimberly: Colt’s advice is to always have fun. This kid can find the positive in nearly every situation. He’s actually taught our entire family and friends about what life is all about. Things won’t always go as you plan, but every day is a choice and we’re always going to be a “glass half full family.” To those parent’s starting the journey, beginnings are always scary, but find the path that works and its different for every family. It took me years to be able to share Colt’s story without stopping because of tears and frustration. To this day, I’m proud to share his story and his successes. While we never planned for this, we took for granted life would be perfect- we’re truly blessed to have met incredible families who we’ve laughed, cried and celebrated together. We can’t wait to see where this journey will take Colt and we know nothing will hold him back!  Ashlee Rose:Tell us about yourselves
Amanda: I was born and raised in Brooklyn, NY. I love photography, ceramics and traveling. Gil: I was born and raised in Birmingham, Alabama. I love hunting, fishing, running, and being with outdoors with our children. Ashlee Rose:How old were each of you when diagnosed with a hearing loss? Do you know what caused it? What path did you each go on? Amanda: My parents found out that I was deaf when I was 6 months old. My mom did sense that something was wrong but the pediatrician brushed it off and didn’t listen to my mom. She put me down for a nap and after a while she started to vacuum without realizing it and then she quickly turned it off so she wouldn’t wake me up but then realized it didn’t wake me up either. She asked my dad to play the saxophone over my crib. He did and I was sleeping soundly. She found an ad in the newspaper for the League for the Hard of Hearing and gave them a call. They gave me hearing aids and immediately put me in speech therapy. My mom did not want to implant me because it was experimental at the time. They encouraged her to teach me how to speak before sign. My mom also put me in mainstream school with an interpreter and notetaker. She always made sure I wasn’t alone and that I was around Deaf kids too. Gil: I was sick with meningitis at 18 months old. I was in coma for three days and became deaf afterwards too. I had to start all over - learning how to walk, eat/drink and to talk again. They also gave me speech therapy too. I was hard of hearing and was doing very well with hearing aids. I was in mainstream high school but did not have an interpreter or notetaker but did use a lot of tutoring. Ashlee Rose:How old were you guys when you each received a Cochlear implant and what inspired you guys to seek one? Amanda (22years old): I took a Deaf History class and the professor put us on a debate team for the Cochlear implant - Pros and Cons. I was on the Pros and learned so much more about it. I thought it was too late for me to get one but I saw that it benefited a lot of Deaf people (after hard work). I was a little anxious about graduating from college and being out in the “hearing world” - especially with work. I am So happy that I got one. It has helped me understand so many people - especially strangers. Gil(23 years old): My hearing got worse in college and I saw how well Amanda was doing with it- it motivated me to get one for myself. I hated it at first but it was the only thing I had to help me hear better. I went to Johns Hopkins to get it mapped and they did it so much better. Ashlee Rose:What do you like and do not like about your Cochlear implants/devices? Both: At first we both hated it - the beeps and the mechanical sounds really bothered us and it was hard for us to get used to it. We love it that we can hear better than our hearing aids and having a remote control makes a huge difference especially in a noisy environment. The bluetooth phone clip helps Gil so much with talking on the phone. Right now, it’s painful to wear implants around children - they like to take it from us and throw it and the screaming and yelling is hard to hear too. We also noticed that when someone puts the water on - it really cancels someone’s voice and we can’t hear well over that. Ashlee Rose:What are your work experiences? Do you receive accommodations? Any struggles? Amanda: When I worked at the Census - I was blessed to have a full time staff interpreter and a Videophone. Every Tuesdays we would have ASL lunch in the cafeteria. Having Deaf friends from other parts of the building was a blessing too. It made me feel like I belonged. Gil: I work at an agency where they don’t allow cell phones and video phones are restricted too. They do provide an interpreter for me sometimes but I do well with my implant and my coworkers are extremely supportive of me. Ashlee Rose:How did you guys meet? Amanda and Gil:We both met through a mutual friend at RIT. We met at the very first floor of our dorm building. We were good friends for a whole year before we started dating. Ashlee Rose:You are parents of three beautiful children! Were you nervous about becoming parents? Did you get devices for home that signals you both when your children needs you? Amanda and Gil: Thank you! YES, of course we were nervous - thank God for the sonic boom alarm clock with the Crying Signalr device that shakes our bed when the baby cries. The problem with it - sometimes we turn it off during the day and we forget to put it back on at night. It was so devastating for us. We made a promise to never turn it off and just leave it on. We love to be able to hear them calling for us, laughing and crying with our implants. I do worry that we won’t be able to communicate well or that we will be left out but we are taking one day at time. Ashlee Rose: Do your children know sign language? Are they aware that you two have a hearing loss? Are there any special ways you communicate with each other? Amanda and Gil:Our daughter gets frustrated when we don’t understand her. She would say “I’m done telling you!” She doesn’t understand we are Deaf sometimes no matter how hard we explain it to her. We have tried to teach them sign language but they don’t see to be that interested in it right now. We are not pushing it right now because we want to make sure they develop their speech in case they like sign language too much. Ashlee Rose:What advice would you give to parents who have deaf /Hard of hearing, deaf parents and deaf individuals? Amanda and Gil:Their advice: Do whatever works for YOU. I wish I found more books on reading to them about our Deafness at the beginning and I do wish I could get together with other Deaf parents with CODAS. We live in an area that is far from a lot of things and its harder to get together with other Deafies.  Ashlee Rose: Tell us about yourself Bridget:I'm originally from NW Iowa, but Kansas City, Missouri has been my home for many years. I'm fortunate to be close to my immediate family - both in terms of location as well as relationships. My parents are Joseph and Rae Jean, and as of January 18, 2019, they will have been married for 44 years. I have an older brother named Brandon, and he has two sons named Chase (14) and Ty (10). My sister's name is Erica, and we have always been close; we actually teach at the same high school. I have an incredibly supportive boyfriend named Michael; he is handsome and smart, and best of all, his logic helps keep me grounded. I love supporting our Kansas City Chiefs (they have a playoff game this Sunday-Go Chiefs), Royals, and enjoying all of our fabulous Kansas City BBQ! Ashlee Rose:What do you do? Bridget: I am a high school English Langage Arts (ELA) teacher. I currently teach English I and English IV, which is most typically freshmen and seniors. I have been teaching at Fort Osage High School (FOHS) since 2013, which is in the Kansas City metropolitan area. I am also an assistant track and field coach at FOHS since 2014; I coach long jump, triple jump, and javelin. Ashlee Rose:How old were you when you were diagnosed with a hearing loss? What kind of hearing loss do you have? Bridget:I was 21-years-old when I was first told by an audiologist that I needed to wear hearing aids. I remember that he said he was surprised that I had been successful in college, and that my initial reaction was, "How embarrassing..." which resulted in tears. Fortunately, I now know that hearing aids are nothing to be embarrassed about. I have Reverse Slope (RS) Moderate to Severe Congenital Bilateral Rising Severe Sensorineural Hearing Loss (SNHL); at the age of 36, I am currently at 50% bilateral hearing loss. RSHL is far less common, and it can be a bit more challenging for my audiologist to program my hearing aids. Ashlee Rose:Do you have a family history with a hearing loss? Bridget:Yes, on the paternal side of my family. My dad's mom, Grandma Mary, had the cochlear implant as a study patient in Iowa City about 12 years ago. She actually just got an updated one; she now has the Cochlear Nucleus 7 Sound Processor. In addition, my hearing loss is very similar to that of my dad's sister, Jane. It would be interesting to know how my hearing loss compares to my dad's, but he's stubborn. He is adamant that he can hear just fine, but might I suggest texting him rather than calling him! :) Ashlee Rose:What do you like and do not like about you're hearing aids/ hearing loss? Bridget:I like that I now have glittery blue custom ear molds for my BTE Phonak Bolero V70-P Hearing aids, and I like the Bluetooth wireless capability with the Phonak ComPilot. What I don't like about my hearing aids is that since I hear high pitches better, sometimes in social settings I can hear a woman's or a child's voice over the people I am trying to hear because those are the sounds I can hear best. We can't tell the hearing aids exactly what sounds to focus on, so background noises are still an issue. Ashlee Rose:When you meet people, what is it like socializing? Are there any pet peeves or anything when it comes to communicating? Bridget: Though I don't think it is obvious to anyone else, I certainly have anxiety about meeting people due to worrying about being able to hear. If someone is soft-spoken or if we meet in a lively atmosphere, I worry that I will struggle to hear and therefore embarrass myself. I also really dread ordering at counters like Chipotle because there are so many sound distractions, I often agree to toppings that I really don't like just to keep the line moving. My pet peeves when it comes to communicating include talking to me as you're walking away, or talking to me before you have my attention. For effective communication, I need to be able to see you speak, and I also need to be focused. Ashlee Rose:I see you are in the process of getting a hearing service dog, how exciting! What made you want to get one? How is the process going? List the link available for others to look into your profile and donate. Bridget: I am incredibly excited to be in the process of getting a second set of ears through a hearing notification service dog. I live alone, and I don't sleep in my hearing aids. When I woke up the morning after a stormy night, I had several texts and missed calls from concerned family and friends because they knew I wouldn't hear the storm sirens. Sure enough, after talking with some neighbors, the sirens had gone off several times throughout the night, but of course, I didn't hear them. The research I did on the service dogs, it seemed that having one would be beneficial in terms of my independence as well as my safety. Service dogs for Deaf and Hard of Hearing- they are trained to alert their owners to common sounds like doorbells, oven timers, smoke alarms, telephones, babies' cries, or alarm clocks. Overall, they are trained to make physical contact and lead their deaf partners to the source of the sound. For many reasons, I chose to go with a smaller nonprofit 501(c)(3) organization called Deafinitely Dogs! located in Cedar Rapids, Iowa. Deafinitely Dogs! really cares about the bond between the dog and its person, as opposed to seeing applicants as just a number. Service dogs are expensive; in the midwest, they cost about $25,000. Due to the high cost, I need to raise $10,000 before I will try to start matching with my future work partner. Through friends and family, we are already halfway there since September 2018. As of January 16, 2019, we still need to raise $4,520.00. There are really three ways people can support my service dog campaign: 1.) There is an active GoFundMe Link; 2.) Donations can be mailed to Deafinitely Dogs! 2121 North Towne Ln NE, Suite A, Cedar Rapids, IA 52402 with the code #0102HBE in the check memo; or 3.) Donations can be made over the phone for campaign #0102HBE by calling (319) 930-DOGS (3647). Donations go to the nonprofit as opposed to me, so donations are tax-deductible. For anyone that would like to read more about the organization, the website is https://www.deafinitelydogs.org/ . Ashlee Rose: Do you have a favorite quote you would like to share? Bridget: As an ELA teacher, I have many favorite quotes, but the one I would like to share is, "In a world where you can be anything, be kind." Ashlee Rose:What advice would you give to parents who have deaf/ hard of hearing children and deaf individuals? Bridget: My advice would be to have patience. Any time there is a struggle to communicate it can lead to frustrations. Technology keeps improving and there are more and more options for support. Learn and grow together patiently in order to reduce those frustrations.  Ashlee Rose: Tell us about yourself, hobbies, marriage life, anything you want to share about yourself.
Alexandra: I am currently a software designer for IBM and I am on the board of the AIGA Raleigh as the Director of Inclusive Design. I recently received my Master’s from NCSU College of Design where my thesis project focused on designs for a smart user interface for Cochlear Implants. I live in Raleigh, North Carolina with my husband and two rescue dogs. My professional website is: http://alexandradeangrossi.com/ Ashlee Rose:How old were you when you were diagnosed with a hearing loss? What causes it if known? Alexandra:I was diagnosed as profoundly deaf at almost two years old. The doctors do not know what caused it. I had a complicated birth with a twin sister who died at 3 days old. We suffered from Twin-twin transfusion disorder and I suspect this played a part in my hearing loss. Ashlee Rose:What approach did your parents take? Alexandra: My parents didn’t know a single deaf person when they found out that I was profoundly deaf so they went into deep researching mode. They visited schools for the deaf, talked to teachers, speech pathologists, and many doctors. It wasn’t until they met a young orally deaf man who was enrolled at Harvard that they were inspired to put me on the same path he went. He was smart, charming and spoke with such confidence, that they realized that I could achieve anything I wanted to. From then on it was a matter of finding the right teachers and speech therapists who would help me thrive. Ashlee Rose: When did you understand that you have a hearing loss? Alexandra: For as long as I can remember, I understood that I had a hearing loss. I remember working on speech drills with my dad when I was about 3 years old. Being mainstreamed, I compared myself to mostly hearing kids and I realized then that I will always have to work harder than my hearing peers to communicate. Ashlee Rose:Have you met any other deaf individuals while growing up? Alexandra:While I started speech therapy when I was around 2 and a half years old, it wasn’t until I was in elementary school that I met deaf kids like me. There was an orally deaf program embedded in a public school, and my parents moved to this district so that I could enroll there. This is where I met my best friend Ashlee who was also in the same program. Our friendship was an important one during my childhood. I loved my hearing friends, but I found it invaluable to have a friend who was going through the same things as I was. Ashlee Rose:What devices do you have?( What inspired you to get a second cochlear implant?) Alexandra:I grew up wearing bilateral high powered hearing aids and using an FM system while in classes. Then when I was 16, having a cochlear implant became a possibility and I decided to switch from two hearing aids to one cochlear implant because that’s what my insurance company would cover at the time. Finally, when I was in my 30s I decided I really wanted to be able to have bilateral hearing again. I had to jump through hoops to get an insurance company to cover my second surgery, but I finally did it and I’m really glad to be a bionic woman in “stereo!” Ashlee Rose:What do you do when you meet a hearing individual- when you go shopping, at a gathering or job interviews? Alexandra: With hearing friends and family members I know well, I usually don’t think twice about tough hearing situations because they understand I need to read lips, and I feel comfortable asking them to repeat themselves. Large groups can be challenging, I prefer being in smaller groups or meeting people individually. With new friends, I will try to orchestrate our early get-togethers in a quiet setting until I am more comfortable with them. Job interviews can be tricky since I am trying to show my most capable side. Usually, interviews are one-on-one in a quiet office, which is actually the perfect setting for me. However, my last job interview included a video conference call to go over my portfolio. In that case, I tried to talk through everything as clearly and thoroughly as possible to reduce the number of questions asked at the end. It was nerve-wracking, but I got the job after all! Ashlee Rose: Do you get accommodations for your job? Any struggles? Alexandra:As a software designer I work with designers and developers who are located all over the world, this means I have a lot of video conference calls with people who possess many different accents over often spotty internet with not great video quality. Early in my job, I was afraid of coming across as less-than-capable so I struggled for the first few months. When I couldn’t take it anymore, I asked for accommodations and I was pleasantly surprised to learn that I was not the only deaf IBMer. I was given a choice of a live captioner or an ASL translator. Since I never learned ASL, I went with the captioner and it has made my daily work life so much better. Ashlee Rose: Tell us about what you do for work, project anything you want to share? Alexandra: I consider myself an Inclusive Design activist, and I am passionate about giving a voice to users who are usually treated as “outliers.” I strongly believe that designing a more inclusive world benefits everybody. A project close to my heart is work that I have done on IDATA, an NSF grant-funded project that uses User-Centered Design to make astronomy and astronomy software accessible to Blind and Visually Impaired students. At IBM I work on a product within the Hybrid Cloud called the Transformation Advisor. It adds code to old apps that allows the apps to be “modernized” and transported from physical servers to the cloud. IBM understands the importance of good design and I really appreciate their commitment to accessibility. Ashlee Rose: Any advice you want to share with parents who have deaf/ hard of hearing children or deaf individuals? Alexandra: To those raising or working with deaf kids: Don’t underestimate us, we are capable of achieving amazing things. However, we need your patience and your compassion — please recognize that we will always have to work harder than our hearing peers to do the same things. Alexandra:To my D/deaf HOH brothers and sisters: Never be afraid to ask for help when you need it. You always deserve to understand what’s being said and your voice should always be heard.  I love to write. (Scene:Two nights ago,it rained. My daughter and I was in my bedroom. I finished my shower, combed my hair and I placed my hand to close the sliding door curtains. I saw the rain. I was delayed because of my deaf ears. My daughter already knew it was raining. ) In the house, all doors are closed. A daughter can hear the rain. Her mother cannot. Her mother can see the rain. She cannot. The daughter relies on her ears. Sounds of her hearing world. Her mother relies on her eyes. Sights of her deaf world. (She can see but did not see the rain under street light, I could because of several years observing with my own eyes and relying on my eyes). This leads me to write soulfully. I am a very passionate person. I always love helping people. I have been on a bridge between hearing and silent worlds, I know what it is like to be deaf. I love working with children. I absolutely love being a mother to my daughter. I have been parenting since 2008. All stages, triumphs and difficulties. I know what it is like to be a parent I write to share my experiences - deafness and parenting. Just because I sell Deaf Awareness t shirts, it is not a competitive style to other T-shirt companies. The importance of my business is Deaf awareness, knowledge, education and comfort. To give you hope. To make you feel inspired. To let you know you are not alone. Now, while continuing my personal blogs; I am announcing that I’ll be posting my blog interviews with deaf and hard of hearing individuals and parents of deaf and hard of hearing children to inspire each other and bring our community closer!  |
AuthorHearing Impaired single mother and teacher aide at a hearing impaired oral preschool program. An author of "Turn The Lights On, I Cant Hear You". Archives
November 2018
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