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
As dance marathon season moves into full swing, many people find themselves wondering what makes these events so special. I am here today as a patient and as a Local Donations Director of a major dance marathon. In raising money for the dance marathon, I have heard a variety of different ideas about what these events do, what happens at these events, and why these events are held. I am going to approach this topic from two different sides: the patient side and the Local Donations Director side.
As a patient, I can’t explain the importance of the work of the dancers, moralers, and dance marathon staff. I have seen and experienced firsthand the impact of art and music therapy in reducing pain and other hospital discomforts. Studies have shown that unconventional therapies like art and music therapy reduce the stresses of being in an anxiety-provoking environment, lower blood pressures and heart rates, and show that patients require less pain medication. Here’s the catch. For most hospitals, money is not set aside for these important services. This is where the funds raised from the dance marathons comes in.
Ironically, here’s where the lines blur. This year for our Push Day, we had a goal of raising $10,000 in 24 hours for our local children’s hospital. This was THE day to go canning, ask for donations from family and friends, and recruit new dancers. I am proud to say that we smashed through that $10,000 goal in about six hours. By the time, we finished I think we finished well over $18,000 all for our local children’s hospital. And where was I in all this you may ask? Lying in a bed being poked, prodded, and pumped full of potent medications all while awaiting two procedures to insert catheters in my spine. Not the push day I imagined.
However, because of my position as one of the directors, I was running my Push Day operations from my hospital bed around procedures, medications, and blood draws. Those that know me would not be surprised and probably laugh, while those that don’t know me would probably think I was downright nuts. But that is just me being me.
The dance marathon is just that; a marathon of singing, dancing, playing games, interacting with patient families and listening to their remarkable stories. It all leads up to the final reveal at the end of the event, which is many peoples’ favorite part. Everyone enjoys seeing the fruits of all the efforts.
On the dance marathon committee side of things, I know the stresses of managing yet another email account, making sure everyone knows what they are contributing, delegating the tasks I need assistance with, making sure to make all the meetings vital to the success of our organization a priority even if I am feeling less than my best. As the dance marathon approaches, the pressure to meet the fundraising goal rises, meetings become more frequent, and sleep is lost over preparations. But for all the reasons I have listed above, it makes everything completely worth it and it has been the highlight of my year working with my amazing group of board members that have become friends. And the very best part? We give children the chance to return to their normal lives and what could possibly be more satisfying than that?
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!