Alysa with family

Living with TCS

Alysa was born with TCS, and bilateral Microtia-Atresia. Treacher Collins Syndrome is a rare genetic condition that affects the way the face develops; it is estimated that it occurs in approximately 1 in 50,000 live births. Microtia is a birth defect that occurs 1 in 10,000 live births, and Atresia is absence or underdevelopment of the ear canal and middle ear structures. She has had over 9 surgeries, years of orthodontics, and speech therapy in school. She has moderate to severe hearing loss and wears bilateral bone-anchored hearing aids.

Sign for Silly in ASL

Bringing ASL Home for Families

Razi M. Zarchy, MS, CCC-SLP and Leah C. Geer, PhD

Our names are Razi Zarchy and Leah Geer. Razi is a hearing speech-language pathologist (SLP) with over 10 years of experience in deaf education. Leah is a deaf Associate Professor of Deaf Studies at California State University, Sacramento. She has 10 years of experience teaching American Sign Language (ASL). Together, we wrote the innovative, family-centered curriculum called ASL at Home. This is our story.

Marie

Finding Identity: Life with Kacey

By Marie Morgan, California H&V

I will always remember the day that I drove away from the hospital with my newborn knowing that she just failed the hearing test again and had a high likelihood of a mild to moderate loss. I looked at her, thrilled to be taking a baby home after suffering a loss two years prior. I knew that she would have to deal with this hearing loss her whole life, but I wouldn’t let it define her and I most certainly would make it her super power. That is exactly what I have tried to do every day since.

Michelle

The Emotional Side of Progressive Hearing Loss for Parents

By Michelle Hu, Au.D. CCC-A

“Mommy, I can’t hear.”

No parent ever wants to hear their child cry out in distress. These are words that my mom and dad had to hear more than a few times as I grew up. The very first time, my mom says she sprung out of bed in a panic — she didn’t know what to do. She wasn’t a physician nor was she an audiologist, so she was left to wonder – Was it just a cold? Was it an ear infection? Something worse?

Why is my Child Deaf/Hard of hearing?

By Daniela Carvalho, MD, MMM

Most of my patients know me as Dr. C (my sign language name is Dr. with the C by the heart). I am a pediatric otolaryngologist who has been caring for children with hearing loss for the past 20 years. Often when I meet a family in my office, their first question is, “why does my child have hearing loss?” That question can easily lead to an hour-long conversation, as the assessment of the cause of hearing loss will depend on so many factors, including the type, degree, progression, and age of onset. I will try to summarize this here, and to do so, I thought it would be easier to “start from the beginning.”

Irit Spektor

Irit’s Story

I self-identify as….

Hard of Hearing / Deaf

What do you enjoy doing in your free time?

Dance, reading, music, art

Please tell us about your earliest years of life related to your hearing, identification etc.

My parents didn’t find out about my hearing loss. I was compensating throughout my childhood and was a great student, so no one suspected anything. It was a friend in high school who noticed. She saw me miss important information in the classroom. She always had to tell me when a test was coming up. I learned everything from books. I finally took myself to a first hearing test when I was about 21 years old. I always knew that my dad had a hearing loss. Years after my diagnosis, we discovered that my siblings are also HOH as well as 2 out of my 3 daughters. Our hearing loss is genetic.

Deb Martin with son

Deb’s Story

I self-identify as….

Hearing

What do you enjoy doing in your free time?

Cooking, paddle boarding, travel, exploring and adventure, music, friends, family.

Please tell us about your earliest years of life related to your hearing, identification etc.

I was diagnosed with mild to moderate loss in one ear, and moderate to severe in the other. As I got older, I went through countless tests with a pioneer in hearing loss – Dr. Maurice Schiff. I was also particularly susceptible to ear infections which had to be manually treated in Dr. Schiff’s office. Very painful and uncomfortable. They did try to determine the genesis for the loss including testing for Rh+ blood factors, but that appeared to be negative. My Mom believes she had either an aunt or a grandmother with hearing loss that might have contributed, but I believe it was due to me being her first pregnancy at age 40. But honestly, no one knows for sure. My hearing loss deteriorated as I got older and my speech comprehension was terrible by my early/mid 30’s. I was actually tested and qualified for an implant at age 39, but I waited 4 years to get an implant partially due to waiting on the constantly changing/improving technology and partially because I was having a hard time accepting how my life might change – better or worse -after surgery. I spent a lot of time researching and talking to people and staff from Cochlear and Advanced Bionics before making a decision (AB).

Neal Savage

Neal’s Story

I self-identify as….

Deaf

What do you enjoy doing in your free time?

I enjoy the outdoors and camping, as well as reading and watching YouTube videos in my free time. I am always on the hunt for more music and ways to entertain myself. Also, for several years in high school I volunteered and rode at an equestrian facility.

Please tell us about your earliest years of life related to your hearing, identification etc.

I was born completely deaf and my parents found that fact out when I was around 18 months old. At the time, in 1999, when I was born, newborn children did not receive hearing tests like they do nowadays, so it was a while before my parents found out about my deafness. My parents are not deaf so my deafness is not genetic, as was further proven by genetic testing. Also, I was born deaf. Between these facts, the cause of my deafness is not really known.

Michelle Hu with family

Michelle’s Story

I self-identify as….

Hard of hearing

What do you enjoy doing in your free time?

I’m a new mom, my kids are 2.5 and 1 years old. They are hilarious to be around. They keep me pretty busy right now, but I’ve created a new Instagram account, @Mama.Hu.Hears where I share personal experiences and tips/tricks I’ve learned a long the way for how I live my life with hearing loss. I’ve been cooking a lot more at home, experimenting with recipes and this past summer I took up gardening.

Please tell us about your earliest years of life related to your hearing, identification etc.

I was 3 or 4 years old. My preschool teacher told my mom that I would go off on my own during story time. She recommended me to get a hearing test. I had mild hearing loss at that point but it worsened every few years due to Pendred/EVAS. My pediatric audiologist was Dr. Carol Flexer – she helped guide my mama to do what was best for our family. My family chose to continue spoken language since this is what we were already doing.