Passing of the “Advocacy” Baton:
One Family’s Story
Over the years I’ve been in many situations where I’ve had to work hard to advocate for my son. I’ve often wondered if I would have the stamina to keep persisting to get him the services he needed in order to have the opportunity to work to his full potential. I have learned and grown as a person through all of this -- however it hasn’t been easy. At times I felt like there would be no end in sight to this constant battle.
My son Anthony is an amazing young boy. He has a severe hearing loss that he has never let stand in his way of doing anything he wanted to do. He is eight years old and in the second grade.
Recently, I had the opportunity to speak on behalf of other families with deaf/hh children at the Indiana Senate Chamber concerning a bill (HB1311) that was being introduced. It would provide funding to help families purchase hearing aids. As a family, we have already purchased two sets of hearing aids. The first purchase happened when Anthony was three. Those aids cost $5,000. His second set at age seven cost $6,000. Hearing aids are exclusions on the majority of insurance policies in the state of Indiana (and the rest of the country). My husband and I have figured we will spend roughly $25,000 in hearing aid costs alone by the time he is 18 years old so this proposed bill is important to us as well as the many other families I know who face similar costs.
I was telling Anthony about this opportunity and asked him if he would be willing to speak. After a brief explanation on a second grader’s level about why this is important and who the people are who will make the decision, Anthony agreed to speak at the Senate Hearing. Now, I must be honest, he did also ask if he could get any toy he wanted at Target and of course this Mother said...”Certainly!”
The evening before the Hearing I shared with Anthony what I planned to say and then he wrote in his eight year old words what he thought was important to share.
He said, “My name is Anthony Kovacs and I’m eight years old. I’m in second grade. I love school and my favorite subject is Social Studies because I love History. I want to work at the Library of Congress some day. I think my hearing aids are really cool because without them, I can’t hear. I play basketball and football. My hearing aids help me hear my teacher so that I can learn. Please do this bill so that kids like me can grow up to be anything they want to be. Thank you.”
So, the next day we went to the Senate Chamber and when our bill was called, Anthony was the first to speak.
Wow, was this a moment that I will always remember! Watching him stand in front of the Senate, proudly and confidently expressing his feelings about something that is important to him... and not only thinking about himself but also all the other children who wear hearing aids. I saw this as a moment that made every minute of all the hard work in the past fall under the category of “time well spent” but also as a turning point in his own story. He can now walk along side me and advocate for himself. In this fast-paced relay of life it is so rewarding to pass that “baton” to your children and watch them soar.
I hope that sharing this story inspires parents to see that there is a bigger picture to the challenges families face. We learn and grow so much through this process and I can’t imagine my life without this experience.
I get to work to share any part of my experiences with other families to help them through their own journey. As the Indiana Hands & Voices Guide By Your Side Program Coordinator, I feel as if this is the most important and rewarding work I’ve ever done and I hope to continue this work for many years to come. My son Anthony is my motivation. He has NEVER let anything stand in his way of his dreams and I, too, have learned this from Anthony’s spirit.
I know that there are many things that I’ve taught Anthony and many teaching moments in the years to come. More importantly, there is so much that Anthony has taught me. ~