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.”
​

​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.

​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 (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