Dear Parents of Newly Diagnosed Children with Hearing Loss,
Although I am not a parent myself, my parents and I have walked this same journey for both myself and my younger brother. Even though we didn’t realize it at the time, we have a very strong family history of hearing loss on my dad’s side. Even though we didn’t know it at the time, my dad also has hearing loss. Nevertheless, my parents and I want to share some of the lessons we have learned over the years.
In 1996, it was not mandatory to conduct the universal newborn hearing screening and as such, I did not receive screening at the hospital where I was born. Therefore, my hearing loss went undetected until I was four years old. Amazingly, my speech was unaffected and I was promptly fitted with hearing aids. My hearing loss was stable for 9 years. In 2010, I lost the residual hearing in both ears. It was at this time that I received bilateral cochlear implants. I have excelled with the implants and I never looked back.
Prior to being diagnosed, my mom thought that my behavior was secondary to hearing loss. However, my dad was convinced that it was behavioral. Even after I was officially diagnosed, my dad was in denial that I had a significant hearing loss.
I cannot stress the importance of advocating for your child when they are young. The more comfortable you are explaining your child’s hearing loss, the more comfortable everyone else will be. Always encourage questions. Knowledge is power and the more educated people are on how to interact with your child, the better the communication will be. If your child asks you a question about their hearing loss, be open, honest, and explain it in age-appropriate terms. This is a critical stepping stone to developing strong self-advocacy skills later in life.
I would like to caution you that when your child reaches their middle school/junior high years, they may become a little rebellious when it comes to their hearing devices. I can tell you from personal experience that it was because I just wanted to fit in with my classmates. After years of hearing support after school and dragging my FM system from class to class, I was just tired. Fortunately, it is just a phase and eventually, with your love, education, and patience, they will come to learn the importance of the devices and the benefits of self-advocacy.
Additionally, never tell your child that they are incapable of doing something. Support their dreams as you would any other child. I have accomplished things beyond my wildest dreams and I would not have had the courage to attempt them without the unconditional love and support of my family.
Lastly, I will tell you that the road won’t be easy. There will likely be bullies, both kids and adults, mechanical failures of your child’s devices leaving your child unable to hear for a period of time and you incredibly frustrated, and sometimes, you and your child won’t understand. Why them? What have they done wrong? The answer is nothing. They were just chosen to be extraordinary and to rise above the rest of their peers. I promise this will work to their benefit in the end. Just remember to keep your chin up and charge the mountain.
A Fellow Hearing Loss Advocate
I am a 20 year old junior at the college of my dreams. I am studying Emergency Medicine and Communication Rhetoric and minoring in the Administration of Justice and National Preparedness and Emergency Management certificate. At some point, I want to go and get my paramedic certification when my health allows. I have several chronic illnesses and this blog and website serves as a place for me to share my journey fighting CRPS and my other conditions. I hope that this blog can also serve as an outlet for raising awareness for rare diseases. Thanks for reading and I hope you enjoy! Feel free to comment; I'd love to know what you think!