Deaf/HH Infusion

Getting to Acceptance: My Story

By Carrie Spangler, Au.D.

I feel blessed to have a hearing loss in our vibrant hearing world. This was not always the case and through a lifetime of up and down experiences, I have grown to be a confident adult living with hearing loss in that vibrant hearing world. Helen Keller once said “Optimism is the faith that leads to achievement. Nothing can be done without hope and confidence”. I hope that by sharing my personal journey, others will by optimistic about their journey or a family’s journey with hearing loss.

The Beginning 

My parents met at Kent State University and got married shortly thereafter. They soon decided that they wanted to start a family. My mom’s pregnancy with me was unremarkable until delivery; then, a placental abruption occurred, causing a lack of oxygen. A lack of oxygen during delivery can have long term impact for the baby and many of these side effects were shared with my parents. Hearing loss was not mentioned as a probable side effect. During the first few years of life, my mother would consistently bring up to the doctors that she felt I could not hear. She was quickly assured that I was fine and that I was a “late bloomer”. The “paper crinkle test” or crinkling up a piece of paper next to my ear was used by pediatricians to “validate” that surely I could hear. My speech and language skills were behind and no one could understand what I was saying. At the age of four, a speech language pathologist suggested that my parents take me to an audiologist to get a hearing test. Needless to say, I failed the test.

First Hearing Memories

I remember receiving my first set of hearing aids at age four. I remember stepping out of the audiologist’s office and walking down the tile hallway and being able to hear footsteps for the first time. I remember wanting to roll down the window on the ride home so I could listen to the wind noise flooding the car. This was the first step in the LONG journey of rehabilitation therapies that would follow to help me learn to listen and talk with my hearing aids.

School Memories

I attended my neighborhood school throughout my entire educational career. I was the only person that I was aware of that had hearing loss. I received speech therapy at school, but did not receive any additional services to help me navigate the mainstream setting. At times, my seat would be in the back of the room because I was tall and the teacher did not want my head to block someone’s view of the board. I remember getting in trouble “cheating” on a spelling test when I looked over at my neighbor’s paper to “see” what the word was because the teacher was walking around the room during the test and I could not hear him. I remember trying to take notes while lipreading and being judged for my sloppy handwriting. I remember working hard on EVERY English phoneme in speech therapy even though I could not hear many of the high frequency sounds even with my technology.

Ups and Downs

Growing up in the mainstream setting and not knowing anyone else with hearing loss made me feel like an outcast at times. As the social scene became more difficult (larger groups, louder environments), I started to resent my hearing loss and think: why me?  Seemingly everyone else is “perfect” because they don’t wear hearing aids and I am “imperfect”. In addition, others would ask me “why do you talk funny?” During lunch and social outings, I found it difficult to keep up with conversations and realized that I was missing out. After saying “huh” or “what” several times, someone would say, “don’t worry about it” or “never mind”.

On the positive side, I was thankful that I was athletic and was fortunate to participate in middle and high school volleyball and basketball. Being part of an organized team was foundational for me to network with others and develop lifelong friendships.

Transition to Adulthood

During one of my clinical audiology appointments, my audiologist asked me what I was thinking about pursuing as a career in college. I had always wanted to work with people, but was undecided in what direction to pursue. She mentioned the field of audiology. I had never considered that a person with hearing loss could be an audiologist. After consulting with several professionals in the field, I decided that I wanted to pursue this route. Truly it was at this point in my life that I was able to accept my hearing loss as a unique and positive part of me!

Pursuing what Matters

As an audiologist with hearing loss, I can reflect back on many of my experiences growing up with hearing loss in our vibrant hearing world. Digging deep and reflecting on my own personal experiences has given me insight into my professional practice as an educational audiologist working with students, families, and educational teams. Today, I am thankful for a purposeful career where I can share daily my lived experiences as well as professional expertise to make a difference in the lives of those I serve.

Reflecting Back:  Five Tips for Parents

Connect your child to others who have hearing loss. For me, I did not meet another individual with hearing loss who was my age until I was a senior in high school. I will never forget the day that I met her and thought to myself…. there is someone else like me who is wearing hearing aids and is happy with who she is!  It was a turning point in my life to know that I was not the only one. Today, as an educational audiologist I have been able to develop and sustain a support group for middle and high school teens with hearing loss to connect, learn advocacy skills, and develop leadership qualities.

Connect with parents in your shoes. If you are reading this, hopefully you are involved with Hands & Voices and have a community of support. My parents did not know anyone else who was raising a child with hearing loss. They felt alone in this journey. My mom shared “I did not fully accept your hearing loss until you decided to pursue a career in audiology. It was then that I knew you were okay with your hearing loss and I could be, too.” I can only imagine that if my parents would have known that others “in their shoes” and met some adults with hearing loss navigating successfully in our world, they may have been “okay” with hearing loss earlier.

Talk about it!!  Growing up I did not know much about my hearing loss or communication needs. I didn’t understand why I had difficulty hearing my teacher in class. I just assumed that because I couldn’t hear them, no one else could either. I did not know what to say when someone told me “you talk funny”. Kids need to be empowered by their hearing loss and equipped with advocacy skills to navigate in their world. Hearing loss doesn’t need to be something that is brought up every day, but when there are opportunities and situations that present themselves, talk about it!

Embrace technology. I love my hearing aids and hate to take them off. I also love my personal hearing assistive technology as it opens up doors during conference calls, noisy restaurants, and other social/work situations. I used to hate going to the movies because I cannot understand what is being said and now I embrace the captioning glasses that can be accessed. Video calls give me access to lipreading. Texting and emails make it simpler to make appointments and ensure I have the right information. My Apple watch can vibrate and wake me up when I am staying in a hotel or I can set a timer and it will vibrate on my wrist reminding me that dinner is done. Technology for hearing loss and our mainstream world continuously improves. Be willing to try new technology and see how it can be adapted to help improve communication.

Let them try!!!  My parents were always willing to let me try new things. They never let my hearing loss be an excuse for why I could not do something. I wanted to try piano and clarinet and they let me. (This was an epic fail for me but I tried and decided for myself that music was not my talent.) I tried out for volleyball and made the team which led to lasting friendships and important life skills learning to be part of a team. My parents always encouraged me and supported me through the ups and downs of trials. Another Helen Keller quote sums up this point: “Character cannot be developed in ease and quiet; only through experience of trial and suffering can the soul be strengthened, ambition inspired, and success achieved.”  ~

Editor’s note: Spangler is an Educational Audiologist in Ohio and coordinates events for middle and high school students in her area and is a frequent conference presenter on self-advocacy and transition.

Printed in the H&V Communicator Fall 2018.

Read more on Acceptance.