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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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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