A cup of tea with ASHLEE ROSE AND ROBIN

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.”
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