 Ashlee Rose:Tell us about yourself
Olivia:I am a junior studying Communication Studies and Disorders at Northwestern University and am thinking of pursuing graduate school. I was born in NYC and lived there for the first five years of my life, and then my family moved to AZ, having lived there ever since. I was mainstreamed my entire life with the help of my parents, my speech therapist, my audiologists and my teachers. Ashlee Rose:How old were you when you were diagnosed with a hearing loss? Do you know what was the cause? Olivia:My parents didn’t get a newborn screening, so we don’t know if I was born with hearing or not. We think I had some hearing since I developed vocabulary. My mom started noticing that I was losing my language, and that I wasn’t responding to certain sounds. So she took me to numerous doctors to figure out what was going on, and finally, one doctor officially diagnosed me with a moderate HL when I was one year old. My family doesn’t know what the cause of my HL was. Ashlee Rose:How old were you when you got your cochlear implants? Olivia:I was fitted with HAs when I was diagnosed, and around age two, my hearing kept declining to the point where I was profoundly deaf. So my parents made the tough decision to get me implanted: I received my right side when I was three and my left side at five years old. Ashlee Rose:During elementary to college years, what have you done for educational support in you're education settings? For example, did you have a notetaker, transcriber, teacher of a deaf, FM/microphone, etc? Olivia:I have always had an FM system available for me from elementary school through college. In elementary school, my FM system was always handed to my teacher, so I never had to deal with the responsibility of using my FM system. Once I reached middle school, the onus was on me to give my FM system to my teachers. I was not the best at this due to embarrassment of holding this reminder that I am different from my peers. I also had to attend “beginning of school” information meetings with my teachers where my speech therapist and I explain my HL and the accommodations I needed in class. I had an informal notetaker, a friend who I would ask for copies of her notes. In high school, I had the FM system, but again, I was not great at using it. My classes were extremely small with a maximum of 15 students. I would always sit within the first two rows of the classroom. However, there were definitely challenges of teachers with accents or facial hair that impacted my ability to lip-read. In those situations, I would definitely use my FM system. I asked for the use of closed captioning on all videos. I also had to take a foreign language for four years, and when you study a foreign language, listening exercises are key in learning the language. Therefore, whenever there was a listening portion for tests, I would ask my french teacher to read the dialogues aloud, so I could at least use lip-reading to help me follow what is being said. In college, I have the support of the FM system as well as CART. CART has been a huge help for me, but it can be challenging to use on such small desks in the lecture halls. I still sit towards the front of the classroom to be close to the teacher and I ask for closed captioning for videos. I have gotten better in advocating for myself if the teacher forgets to turn on the captions or the FM system isn’t turned on. So I have made improvements in using my accommodations as I get older. Ashlee Rose:What were your extracurricular activities while growing up? (Tell us if you have done a sport, music, dance or anything -what was it like with your hearing loss) Olivia:I did what every kid did when they were younger; I tried all different kinds of sports like soccer, tennis, swimming, and volleyball. But the main activity that I stuck with was ballet from age three to eighteen. I remember when I started learning more complex moves like turns or jumps, I was having a hard time keeping my large processors on my ears. So I would put this strong, double-sided tape on the back of my processors and stick them behind my ears. I also strategically tucked my coils underneath my hair that was pulled tight into a bun. As I got older, I was able to navigate how to do these complex moves without the risk of my processors flying off, so I stopped using the tape. Ashlee Rose:Now, you are in college and deciding on whether you will major in Audiology or Speech Pathology. Have you decided yet? Drumroll, perhaps? Olivia:Drumroll.....I DON’T KNOW! I am starting to apply to graduate schools and am figuring out my next steps. After working at Desert Voices and shadowing other audiologists this past summer, I was sure that I want to pursue audiology. I am still mulling over my options. But I know for sure that I want to work in both fields somehow, either being an Early Intervention SLP or a pediatric audiologist with background in SLP. Ashlee Rose:What has inspired you to this degree and future career on it? What do you hope for? Olivia:I have first-hand experience in dealing with HL. I know what it’s like to be constantly aware of my CIs: making sure I have charged batteries, being cautious of swimming situations, putting my processors in the dryer. I also understand the social components that come with HL: feeling embarrassed or worried about being treated differently as soon as someone sees my CIs. Because I have all of this experience, I would love to be able to share this with other people who are going through the same thing. In addition, I have lived with CIs basically my entire life, but I don’t actually know the technology and the ear mechanism, so this major helps me learn more of the science behind these systems that I use every day. I am hoping to take what I learn in school and be able to work with kids. I would love to share my knowledge and experiences to help them realize they aren’t alone and are not the only ones going through this. I want to gain strong skills in audiology and speech/language development, and maybe open my own clinic or practice in the future. I also hope to be a part of the development of CI technology. I could offer my knowledge on the devices as well as my own experiences of things that should be modified in the newer models. Ashlee Rose:Any advice or favorite quote you would like to share with other deaf and hard of hearing individuals and the parents of deaf and hard of hearing? Olivia:For parents, they constantly worry that they are not doing everything they can to help their child. I’ve seen it in person and I have learned about it in class. My advice is to just be there for your child: be their emotional support and advocate for them in every single part of your life. But the most helpful thing you can do for your child when they get older is to throw them into situations where they have to learn how to advocate for themselves. Because we won’t always have our parents around, we need to be able to stick up for ourselves and deal with tough situations that will inevitably come our way. My mom has been a wonderful advocate for me, which has helped me to get to where I am now. But she also encouraged and pushed me to advocate for myself at a young age, which is the best thing she could have ever done for me. I am now able to talk on the phone and ask the caller to repeat themselves. If I miss an announcement, I can comfortably ask the person next to me what was said. Having this skill has helped me get to where I am today.
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 Ashlee Rose:Tell us about yourself
Robin: I am a California native! I grew up in northern California and attended college and law school in state. I moved to Arizona after graduating law school and that is where I met my husband and where both of my children were born. We moved to St. Louis so I could attend graduate school for Deaf Education. I miss California and hope to move back there after graduation! Ashlee Rose: How old was your daughter when she was diagnosed with a hearing loss? Do you know the cause of her hearing loss? Robin: Allison was referred for additional testing when she did not pass her newborn hearing screening. She was born with profound hearing loss in both ears. Allison’s hearing loss is caused by Usher Syndrome, a rare genetic syndrome which impacts both hearing and vision. In addition to hearing loss, Allison has progressive vision loss. Ashlee Rose:How old was she when she got her cochlear implants? Could you share with us a piece of her cochlear implant journey? What it was like or the results now? Robin: Allison was implanted the day before her first birthday and her cochlear implants were activated a week later. We participated in in parent coaching and therapy sessions from the time Allison was six months old. When Allison turned two, she began attending toddler class at Desert Voices, a listening and spoken language school for children with hearing loss in Phoenix, Arizona. At age three, Allison transitioned to an Individualized Education Program and attended preschool full time at Desert Voices. She transitioned into mainstream kindergarten in 2018 and is doing amazingly well with her speech and language. Ashlee Rose:I see she loves her waterproof processor! Does she use it for bath time and swimming time? Has she taken swimming lessons? If so, how does it work with the waterproof processor, swimming cap, and communication with she and her coach, etc? Robin: Allison LOVES the water! Allison has been in swim lessons for about three years and swam on our community swim team last summer along with her brother. She has a waterproof case for her processor, which she uses in the bathtub and can also be clipped to her swimsuit for swimming. Listening in the water is more of a challenge, but Allison does amazingly well with it. She would love to be a mermaid and live in the water if she could! Ashlee Rose: Your daughter has inspired you in several ways. Currently, you are going to school, getting a degree in Deaf Education! Can you share with us about this journey how it started and where are you now? Robin:I attended parent coaching sessions at Desert Voices starting when Allison was just six months old – which is what initially sparked my passion! Hearing Allison find her voice was such a life changing experience and I knew I wanted to help other children like Allison and families like mine navigate this journey. Ashlee Rose:You and your family moved out of AZ to Missouri for your college education, was it challenging or nerve-racking to transfer your daughter’s IEP to a new town/state, finding an audiologist and other doctors? Do you have any advice for other mothers who are going through this process with a move and IEP, Audiology, and education? Robin:Yes, it was very challenging! St. Louis has a lot of great resources and we were able to find an audiologist very quickly. Transferring Allison’s IEP was another story. Our new school district lost our paperwork and it resulted in a scramble at the beginning of the school year to get everything set up. We were also trying to secure services for her vision loss for the first time after her Usher Syndrome diagnosis, which was challenging and emotionally draining. Being organized is extremely important, but also being persistent! Ashlee Rose:Do you remember a moment with your son recognizing his sister has a hearing loss? How do they interact with each other? I’ll bet, he is a protective brother! Robin:I remember one time, when Allison was about three, she was visiting Connor at his school. Some of Connor’s friends were noticing Allison’s cochlear implants and asked him why his sister didn’t talk. He responded, “She can talk. She just doesn’t want to talk to YOU!” It was a funny moment! Allison is great as standing up for herself, but it is also nice to know that her brother will always have her back! Ashlee Rose: Any advice or a quote you would like to share with us? Robin:I love this quote from Brené Brown: “Let go of who you think you’re supposed to be; embrace who you are.”   Sometimes, things happens so fast. Maybe too much at once? How do we embrace throughout the chaos? It happened to me. Juggled way too much, my life was in a fast lane and I realized.. I needed to embrace, count my blessings, and instead of just "chaos" turn it into beautiful chaos. Sounds, silence, beauty and feelings to be connected. I did not want to miss my lessons, and I wanted to cherish the moments to be forever imprinted in my heart. The key is to be in the moment. Stay in the moment. Observe. Reflect your thoughts and feelings. See the beauty. Life is too short and precious. My cell alarm signaled me My head tune plays “I hear the clock, it's 6 a.m. I feel so far from where I've been” by Jewel Nah, I don’t hear the clock. But it is 6 a.m. I do feel so far from where I’ve been meaning I have overcome the past chapters of my life. I am not done. Just chasing what life offers me and my daughter. Here is a glimpse of the last two weeks, My daughter started middle school, {A vision of me looking at the mirror for gray hair strands} Not only it’s been a normal transition from elementary for all middle school students, it was a transition from public to private and new school for her. Let's be brutally honest, it wasn’t beautiful start of a ride. Tears and anxiety for both of us. When I was in eighth grade, we got a new principal. She is still at my daughter’s school and she is my daughter's principal, she guided us and helped us during the first week of school. I went to the parent open house. I walked into my classrooms (I went to this school in 7th-8th grade). The community, parents and teachers were all so wonderful. It felt like a family or a village perhaps. My daughter's classmate has a father with a hearing loss. His wife is a sign language interpreter. During the open house, each class was ten minutes.The teachers talked very fast to get as much as information to us as possible. Kindly, she and another lady took turns on interpreting for both of us. It felt a home. Everyone was so nice. Now, its been almost a month and she’s in a good place now where she gained more respect for herself and everyone overall, being accepted by others for who she is, stronger faith in God, and it’s been peaceful. We both are very grateful for this new chapter of her school life. After morning drop off, it’s time for me to go to work and start the day. My work and my daughter’s school - we are five minutes away from each other. Lots of changes and new opportunities. It’s exciting. However, it can be challenging well a positive word in my head with all scenes playing is ... adventurous/ or adventures. I am already learning every day, I love it. During this time, I try to focus on being in the moment and treasure my time with students to create a positive and fun experiences. We wear same pair of shoes- hearing loss. I was nominated as champion for Hear Strong Foundation! I have been running a business, prepping orders, ordering more tees, and responding emails. It was very exciting to read an email from Hear Strong Foundation, and I’m excited to be part of their community to help others and deaf awareness! A family member of mine from East coast passed away and shortly, my father had signs of stroke. He and my mother flew out to attend the funeral. When they returned, doctors tested it was a stroke. During craziness, I continued forward with my daughter and work. People asked me “How on earth I am there or going through this?” I am a person that roll with it, I do have boundaries. My boundary was to stay in the moment and keep going. I’m grateful for my father still being alive and doing the best as he can, every day I count my blessings and thankful that I have another day with him. Meanwhile, my parents were in Vermont and I’ve been packing and packing two different bags. Right after school on a Friday, I took my daughter to a church for a fun weekend camp. One hour later,my best friend, Brooke picked me up and dropped me off at the airport for me to fly out to California for a social media run. According to my daughter, I wasn't allowed to uber due to safety reasons ;-) On my flight to Burbank , I notified attendant that I was deaf. He forgot when he asked me what I would like to drink. I had no voice. I am slowly getting sick.I embarrassingly croaked “ginger ale”. It was not a pretty sight. He didn’t understand. I wrote it on paper, he remembered. He passed me a note after 30 minutes went by. {As I am writing this blog outside, brown clouds rolled in with cold pouring rain drops on my body. Desert rain, the smell of desert rain is wonderful. } From the flight attendant, “You are truly the kindness person and thank you for being on my flight. You’ve made my day!:-) Can I get you anything at all?” A quick 36 hours trip of taking photos and spending time with my uncle and his crew; we went to Hollywood Bowl to see Pink Martini concert. A whirlwind of an adventures, rest and rush. Is that even possible? I flew back home (and ubered home)and one hour later, I picked my daughter up. She was sick with fever. We took three days off until she was fever free and we even went to doctors together, I had to go first for strep test while she watched I gagged. Successful mother moment. Neither of us had strep. But overall, I felt one hour to next hour chasing, spinning and multitasking. I wasn’t in the moment anymore. I wasn’t living. Being sick reminded me to slow down, set boundaries, live and be in the moment during beautiful chaos. So I decided to juggle my job, business, social media, my own personal life and my daughter's school/priorities in a graceful manner. I was inspired. I was exhausted to have it all in my head to remember everything. We created chalkboards, I put quotes, reminders, important dates and everything on it. My fave part of the chalk boards " A daughter is God's way of saying "I thought you could use a lifelong friend". So true. My family and I saw "Art of Racing in the Rain" movie. It was a very good film, it gave me lots of perspective on life. Life is short. I am not going to spill the beans on this blog! Overall, it reminded me not to give up, to appreciate and be in the moment. I try my hardest to be in the moment to see the blessings during the chaos. Guess what? A lady knew I was struggling to get accessories due to insurance. She kindly donated mini mic, phone clip and remote control for my processor (to adjust volumes on my four programs) Truly, I cried. She was so wonderful and took the time to show me how it works. It was wonderful to hear things more clearer. I accidentally switched programs, I heard teacher talking through a microphone in other room. That was exciting! I played my music again on the phone clip (phone clip also connects to iPhone music) “ I Can Hear The Music” by Idina Menzel is playing at perfect time! I was in the moment. I will never forget that.    On our way to see Aladdin movie! Friday night after preschool graduation every year is my favorite.It is an emotional day saying goodbyes to my precious preschoolers who are ready for Kindergarten. Then when I come home, it is a relief feeling knowing summer break begins and I am available to be with my daughter. She usually gets out of school a few weeks before I get out. We were off to have dinner and a movie to see Aladdin. Not knowing this was not going to be my favorite Friday night after all. The movie, Aladdin started and all of sudden, a lady was yelling at me that startled three of us. She was literally yelling at me about the caption box. I yelled back “It’s closed caption!”. We continued to watch the movie. My heart was torn. I felt not comfortable. I felt anxious knowing she was still behind me. Do I move to another seat? Do I stay? I prayed for God to give me the strength to handle it in a graceful style manner and what to do. My daughter is here and I’m her role model. Do I speak up or not?During the movie, Jasmine sang the song “Speechless”. When I read the words from the caption box, this hits home. Here is a part of the song. Here comes a wave meant to wash me away / A tide that is taking me under / Swallowing sand, left with nothing to say / My voice drowned out in the thunder / But I won’t cry and I won’t start to crumble / Whenever they try to shut me or cut me down I won’t be silenced / You can’t keep me quiet / Won’t tremble when you try it / All I know is I won’t go speechless / 'Cause I’ll breathe / When they try to suffocate me / Don’t you underestimate me / 'Cause I know that I won’t go speechless  That’s what I’m going to do.. “I won't go speechless”. I will stand up for myself. When the movie was over, I stood up and looked at her. She glared at me and chuckled a bit awkwardly. I stared at her. I shouted “thank you”. She scoffed. I walked away. My mother and daughter were talking to her and her friend. (During this scene, my mother was telling her that I am deaf since birth and needed the closed caption)I walked back and cut in conversation, I explained I am deaf, it was a closed caption box to help me understand the movie, and she insulted me that she disrespected me, my mother and daughter. She somewhat apologized but said somewhere in lines one of us should have moved then again I should have moved. I was shocked. Rosa Parks did not give up her seat. I am not going give up my seat. She said it was distracting. She went on and on. She was yelling. She still didn’t get it. My daughter placed her hand on my back for support while she stood there quietly witnessing it all. I was shaking and walked away. During this scene, I looked at my mother and my daughter being part of this situation. I could not imagine what my mother is going through. Sure, I am a mother. But not a mother to a deaf daughter. She surely did not expect this event when I am in my thirties at a movie theater. Then I could not imagine what my daughter is going through. Because I do not have a deaf mother. I know the protective feeling of my parents while I was growing up. She is very protective. This was not a sight I want her to witness. We returned the caption box to the front desk, a gentleman asked me how was it. I told him I am insulted because someone complained about the caption box. He held the caption box, his mouth dropped and said: “Wait, someone complained about you using this?!” I nodded. He wanted to call his manager to discuss it with me. I disagreed, I assured him it was okay, and he saw I was shaking. “Well, can we at least give you a free movie ticket? Please?”. I said “No, I’m better than that. I do not want the ticket, I’m deaf and have to deal with it like that.” I mean I have been discriminated quite a few times in the last ten years, I can’t seek free stuff out of it. That’s not my solution. My solution is to advocate for myself and educate others.  When we got home, my daughter and I sobbed in each other’s arms. She drew two pictures which were a mad face and sad face to put them on pillows for me to punch when I’m mad and to hold when I’m sad. I punched screaming and we laughed. I cried, “I need the sad pillow now!” She handed me a sad pillow. I cried. She hugged me, I explained to her that I was sorry for her to go through that. She assured me it was okay and she was sorry for me to go through that. We continued other therapy activities she had for me. I was impressed and in awe of her love for me. I emailed the movie theater corporation to explain what I went through, reminding them I still do not want free tickets but want the location to be recognized for good customer services and suggested them to make a video on closed caption box and respect just like they show no cell phones to respect others during the movie. To educate others to be respectful to deaf and hard of hearing communities using the device. They responded with a well-written email (Here is a part of the email): “We were disappointed to learn of the trouble you encountered during you're recent visit but are glad to know you were able to share your experience with the team. I have shared your suggestion to include a video about respect and awareness with the appropriate departments for consideration on your behalf.In addition, we have shared your email with the General Manager at the theater so he can share your kind words with his team.” I hugged my mama the next morning. "I am sorry you had to go through that" said I. She said "No, I am sorry you had to go through that. I am proud of you. You handled it with grace. You showed your daughter how you stood up for yourself in a graceful manner." And my father was very proud of me for using my backbone. I wont go speechless and to my community, do not go speechless. Advocate for yourself and your child while educating others because not everyone is aware.    Photo credit : Jennifer Dunaway Photography http://jenniferdunawayphotography.com Ashlee Rose:Tell us about yourself Christina:I’m momma to the sweet Lorelei. I try my best to be the mom she needs me to be, even though I feel like I fall short (like many other moms feel, I’m sure). My passion is education, and before I became an early childcare teacher I worked as an educator in museums. It was always my dream to teach. When I’m not teaching, I love to create (crafts, baked goods, anything really) and go running. Running is such an amazing stress reliever for me! My husband is a very goofy guy and the perfect opposite to me. Ashlee Rose: How old was your daughter when she was diagnosed with a hearing loss? Christina:After Lorelei was born she “failed” her hearing tests. The hospital sent us to an audiologist that continued to test her and told us that her test fails was likely due to fluid in the ear. He said that with time her hearing would improve. That didn’t seem right to me, and as the months went on and she did not flinch at loud noises, I sought a second opinion. She was a year old when we finally got in to see a pediatric audiologist and she was diagnosed with mild-moderate hearing loss. She also had fluid buildup in her ears that caused her to hear at a severe hearing loss level. Ashlee Rose: Was the cause discovered? Christina:Yes- Lorelei has GJB2 mutations (a gene mutation). My husband and I both have a recessive gene that can cause hearing loss in our children. Though many people with this type of mutation do not have progressive hearing loss, Lorelei does. Over the past year and a half that we have tested her hearing it has gone from mild-moderate to moderate-severe. It has been getting progressively worse throughout her life. Ashlee Rose:How did you guys find out about her hearing loss? What were the emotions you and your husband went through during the time? Christina: We found out about hear hearing loss when she was born, but because of a bad audiologist, we didn’t know for sure that she had hearing loss until an ABR at a year old. When the doctor told me, my first thought was that she would never hear me say “I Love You”. I wasn’t necessarily sorry for myself, but I was sorry that her life would be harder than most others. Until we learned that her hearing loss was genetic, I wondered if I had done something during my pregnancy that caused it. I went through the whole range of emotions, but I knew that it would be alright. My husband and I hadn’t met anyone that was deaf or had hearing loss, but we knew that there were resources for us. My husband was much more pragmatic about Lorelei’s hearing loss. He saw what we needed to do for her and got to work researching and learning about hearing loss and different communication methods. For me it was more emotional. Ashlee Rose:Tell us how you prepare your daughter for audiology appointments and working with her devices. Christina: Lorelei is only two, so she still doesn’t quite understand when we tell her we’re going to the doctor. We go every three months, so she is well acquainted with audiology appointments. We make sure to set the appointment early in the day, long before her nap time. We have a filling breakfast and pack a lot of snacks, and even a special snack to give her when she gets a little tired and needs some incentive to behave. As far as her hearing aids, I am in charge of them and their maintenance. When she was young it was a struggle to get her to keep them in, but we used (and still use) cords and clips. I’ve found some really cute ones on Etsy. She loves to choose the clip that she wants that day. There are also stickers to put on the hearing aids. She loves to pick new ones based on what she is into at the time. The stickers also help the daycare staff to know which ear to put the hearing aid in after her nap. Ashlee Rose:Is she learning to use ASL or oral approach? Christina: Right now we are working on both ASL and speech. She is so young that her brain is like a sponge. She is incredibly intelligent and learn extremely quickly. We want to get sounds in her while we can, but we also want to teach her ASL before she loses her hearing. She has speech therapy twice a week. Because we are learning ASL ourselves, we are working hard to surround her with deaf people and others who know ASL much better than us. This works for us right now, but we know that it can change any day and that we need to be flexible with her communication preference. Ashlee Rose: Do you guys do early intervention or therapy to help her connect with the world? Christina:We did early intervention for a while, but when I went back at work I decided to put her in daycare and stop early intervention. We got so blessed with her teachers and the daycare staff. Lorelei’s teacher has a family member that is deaf and uses ASL, so she knows some words and phrases. Lorelei’s teacher also worked with special education students and knows to make sure to stick to a routine, talk while facing the classroom, ensure other noises were at a minimum, etc. The staff also takes the time to learn commonly used phrases. They not only use them with Lorelei, but teach the entire class. The program is amazing for Lorelei. She learns so much from others, even when you think she’s not paying attention. Within the first few weeks, she came home saying so many more words than we imagined she would. This summer we are joining a program to help us connect with the Deaf community. I’m excited for Lorelei to get to play and sign with other children her age. Ashlee Rose: I see you are selling candles and donating to deaf schools, tell us about it.(Amazing and cute candles!) www.lusterandlore.com Christina:Yes- I created the business several years ago, but when we learned that Lorelei was deaf, I knew I wanted to send a portion of the sales to help deaf education. I love that people buy my candles just so they can donate to deaf education. Not only do they help a school or organization, but they also get a good smelling candle. Right now I’m deciding how I want to change my business to create more deaf awareness and teach more people about the deaf community. If I can inspire one person to learn a few signs, that is worth all of my time and effort. Ashlee Rose:Do you have an advice for parents who are raising a deaf /hard of hearing child? Christina:It’s hard to know what to do when you first hear that your child is deaf or hard of hearing if you’re a hearing family. My advice is to take it one day at a time and do what you can. As long as you show love to your little one for who they are, you are doing great. You can’t learn everything all at once, but all that matters to your little one is that you try your best and show them love.  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!  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! |
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
September 2019
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