September 28th, 2000 is a day my parents will never forget. It was the day that my moderate-severe sensorineural hearing loss. They both took the news really hard, but I think my mom took the news worse than my dad. I remember her crazy. I wish I could have dried her tears and told her that everything was going to be fine and that I would continue to be like any other four year old kid mismatching my clothes, playing in the dirt, and running around with a Winnie the Pooh rain slicker and boots.
In the weeks that followed, a frenzy ensued. A scramble to get a second opinion, what to do about my education, and paying for my first pair of hearing aids. It was also the first time they had to fight to get Medicaid for me to cover future hearing equipment expenses. I wish I could have told them to slow down and breathe. That everything would be absolutely fine. That's a tall order of any first time parent or any parent for that matter.
Early Intervention services would fall into place, I'd get my hearing aids, my diagnosis of hearing loss would be confirmed by another doctor and everything would be fine. I wish they would have spent time enjoying my baby brother and I versus wrestling with the medical system every minute of every morning for the next six weeks. In everyone's eyes, I was seen as limited instead of full of limitless potential. I wish my parents would have let me go to the advanced courses when I was little, but they were afraid because of my hearing. I wish that my hearing hadn't been an excuse to not do certain things growing up.
By the time I started kindergarten, I was completely on target with the rest of my peers. The teacher wore an FM system in the classroom that made understanding their instructions easier.
To all parents of children with a hearing loss, the sky's the limit! Don't try to hold them back from great opportunities because your own anxiety is getting in the way. You are their best advocate until about middle school, when they should become more active in IEP meetings and goal planning sessions, as these self advocacy skills will be imperative for the rest of their lives.
So relax, enjoy your kid, and everything will fall into place in due time!
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!