One Parent’s Journey
A Mother’s Reflection on the Maze
By Jocelyn Ross, South Carolina H&V
My daughter Alyssa entered the 4th grade this fall. The change in teachers, the change in classmates and, for her, a change in schools would worry any parent. As a parent of a child who is deaf/hard of hearing, these changes can impact a child’s success. As I reflect back on our ten-year journey, the Psalm, “Weeping may endure for a night, but joy cometh in the morning” (Psalm 30:5) stays on my mind. While my weeping endured many nights, I can affirm that joy always comes and it outlasts the weeping.
The Diagnosis
I remember being so excited about planning for our daughter’s arrival. God saw fit to bring her into this world a month early. I was not ready. When we received the news that she didn’t pass the newborn hearing screening in the hospital, I felt scared and worried. The nurse offered that it may just be fluid in the ears and encouraged us to follow-up with an audiologist. Follow-up tests showed that she had a hearing loss. I cried so many nights. Worrying: What did I do to cause it? Why had it happened? What do we do next? All those nights I read to her… could she hear me in the womb? I wept at so many questions. Why?
The Maze
Our journey can only be described as an interesting, bumpy, complicated journey and we are not yet at the end. We have had so many twists and turns.
Misdiagnosis: Our first audiologist misdiagnosed our daughter. We discovered this when we sought out a second opinion from a pediatric audiologist that she was not deaf but in fact had a mild to moderate hearing loss;
Insurance: We were surprised to find that health insurance in South Carolina does not cover the cost of hearing aids, creating a financial strain on many families when trying to follow through with medically-recommended amplification;
Early Intervention: Learning and applying for early intervention services birth to 3 and our ADA access rights in a childcare setting and beyond;
Public School Services: Navigating the school system and advocating for special education, speech therapy and establishing an Individual Education Plan (IEP);
Medicaid: Completing forms for Social Security Income (SSI), Medicaid or TEFRA Medicaid and going through an appeal for canceled coverage;
Communication Options: Learning about options such as auditory verbal therapy, speech services and/or incorporating American Sign Language or other options;
Advocacy: Challenging systems and processes that fall short of providing adequate services, educating teachers about our daughter’s hearing loss and her needs with equipment, teaching our daughter to advocate for herself;
New Diagnosis: Diagnoses can change. We navigated a new pair of high-powered hearing aids due to a progressive hearing loss (still not covered by insurance) and the decision about whether to consider cochlear implants when hearing levels dropped to profound deafness;
Service Providers: Some doctors and/or practitioners lack compassion. Instead, we were scolded, judged, and warned that our daughter wouldn’t be successful beyond 3rd grade if certain treatment options weren’t followed. Personal bias can cause harm.
Parenting: Comforting my daughter and feeling my own pain when she cried, asking why she was deaf; or different from her friends at school.
And these are just a few highlights of our journey and lessons learned as she nears ten years of age.
The Morning’s Joy
Learning (sometimes again and again) that if we are brought to it then He will bring us through it…That what we go through are lessons that grow and shape us. Reflecting back, I see the joy in:
Advocacy: I started Let South Carolina Hear to advocate for insurance companies to include hearing aids as a covered benefit for children in the state. My journey encouraged others out-of-state to start similar efforts starting with Let Georgia Hear. Georgia recently secured legislative passage. Several other efforts have grown from Georgia’s advocacy, positively impacting families all across the U.S.
Support: Reaching out and being a part of a parent support group such as Hands & Voices is priceless. I am not alone in my journey as a parent…and supporting each other (without bias) and helping others navigate the maze creates lasting relationships that help my daughter know she is not alone. She is becoming proud of her deafness.
Motivation: Caring for children, our very future, is a great responsibility. I am motivated to keep trying to do better for my daughter and to encourage her. Motivation to help others keeps me reaching out even when it goes against my introverted personality to be a part of something bigger than our family that serves a good for all children.
Despite the doctor who scolded us about getting beyond 3rd grade reading, our daughter is doing well in mainstream classes and is on grade level– 4th grade or above! She is confident and prepared as a result of necessary support services, lengthy service applications, long letters to justify our needs, the additional steps taken to educate parents and teachers who don’t know about hearing loss and the listening bubble; advocating for FM systems and speech in the childcare system and public school system. While we are still not out of the maze, I have hope based on past successes. I know we will/she will make it through middle school, high school, summer internships, driving, college planning and beyond.
There is a famous maze in Leicestershire, England called the Wistow Maze. Every year, one of England’s largest mazes, made of sunflowers and maize, assumes a different shape. Like my own journey, a decision or path I make today for my daughter may bring a different turn tomorrow. We meet different people who walk with us for all or just part of the maze. The key to mastering the maze is accepting that there is no one clear, straight path to the exit, and it doesn’t have to be walked alone. Embrace those along the journey; each of us has something to share to enlighten another. Be aware: the information you share and the words you speak can hurt or help someone on their journey. Embrace getting involved in activities and groups such as Hands & Voices. While you may feel you don’t need any help, you might help someone else. Get involved so we can help shed light on the path of possibilities because doing so can provide someone–maybe even you or me– a morning of joy. ~
H&V Communicator – Winter 2020