By Kelly DiBenedetto, IN H&V
I recently had the opportunity to attend a leadership training. One of the exercises featured during the event was a role play of someone getting into your face and screaming “What Matters?” repeatedly for several minutes. Workshop participants and I had to scream back at the same time things that we felt mattered. By the end of the exercise, we had boiled it down to what really mattered!!
Looking back over the past eight years I cannot believe how the “What Matters” have changed in my life. I regretfully admit that when I was handed my beautiful baby girl one of the first things that mattered was that she was perfect with ten fingers and toes and all the outward appearances that I thought were important at the time. My very shallow focus on “important” details were soon discarded as to my satisfaction she was visibly “perfect.” A few days later we were told she did not pass her newborn hearing screening. That was the day that my “What Matters” in regards Katie really started to change. Katie was diagnosed with a mild unilateral hearing loss. What then mattered was not that she looked perfect; what now mattered was the “what do we do next.” Should we pursue technology and any other available assistance and education that could be considered for our daughter? I then had people telling me: “it’s okay because she is a girl and she can grow out her hair and no one will notice any equipment.” I couldn’t believe that people were saying this when all I could think about was what was going to be best for Katie! Who cares if she is wearing a hearing aid? Little did I know that our “What Matters” would continue to change over the years. Like many children with UHL experience, Katie’s hearing loss progressed bilaterally. After five years and four sets of hearing aids, Katie was diagnosed with a severe to profound loss in her right ear and a profound loss in her left ear. I will humbly admit that I have found myself grieving her hearing loss at every stage. It became apparent to me that every time we learned that Katie’s audiogram had changed, the “What Matters” changed right along with it.
Over the years we have had people and professionals in our lives give their input as to what was important for Katie. While we took all of their input into consideration, it became very apparent that we need to focus on our own family and what we felt was important for Katie. The “What Matters” for Katie continues to change every day. Whether it is the IEP goals, the professionals we bring into her life, or which dance class to choose, it is all about Katie and what works for her.
As the executive director of Indiana Hands & Voices and an active H&V Guide By Your Side Parent Guide, I am honored to be a small part of families’ lives when they look at their child and decide for themselves “What Matters” to them and their child. Unfortunately, I also have to witness people and professionals push their beliefs and biases on these same families. As parents we are often caught in the middle of what I like to call the “communication wars.” I have witnessed people say mean and hateful things regarding families they have only seen in a picture or a short segment of local television news story. It is hard enough as a parent to not only find your family’s “What Matters” but also “What Works” for your child and family. I am so honored and blessed to work with an organization who truly embraces “What works for your child makes the choice right.” I am certain what works for my family and Katie is not the exact same thing that is going to work for yours!
I have found myself sometimes consumed by the war of words and politics and have lost focus of WHAT TRULY MATTERS; the Kids & Families, and teaching them to focus on “What Matters” to them and leave the rest of the world who are not raising our deaf and hard of hearing kids to argue about how each child should communicate.
For my family, we have made the decision to continue to look inwardly and decide for ourselves “What Matters.” I will continue to look at the children and families I work with in Indiana and continue to focus on “What truly Matters” for those families, supporting them to make the best decisions for their child that works in their home and their world.
I challenge to look at your family and decide “What Truly Matters!”