The Billboard Baby's Journey

It has been a super long time since I have written anything here. Today I felt the need. A few years ago, I was so passionate about getting Senate Bill 122 passed through South Dakota's legislature. It would have mandated insurance coverage for pediatric hearing aids. It was hoghoused into something different before it was passed. However, some of the same passionate people have come together this legislative session to get House Bill 1155 passed into law. It's not done yet, but it has promise. This bill would be invaluable to parents and IFSP/IEP teams. In a nutshell, it would create a specific committee who could help with guidelines for language and literacy skills in children with hearing loss to help prepare a child to enter kindergarten at age 5. Oh, how useful that would have been to us!

We have done everything in our abilities to have Audrena ready for kindergarten. In the fall of 2016, she passed kindergarten roundup but was just not ready, largely due to the remaining language gap. Thankfully, our school district offers junior kindergarten, and we were able to give her that extra year. This year (2017/2018), she is doing great in kindergarten with the help of her IEP, although she entered kindergarten at 6 1/2, not 5 1/2. Audrena receives services for speech/language/articulation, reading, writing (we just added this to keep her from falling behind because her teacher identified it as an area of need), and math. We could have greatly benefited from the provisions of HB1155 in the years leading up to kindergarten!

Today, a friend posted on Facebook about her experience testifying for HB1155 and what it meant to her. We all used to have pretty "normal" lives. What is normal, anyway? When I was a young adult, my "normal" meant I was quiet and reserved. High school speech class made me sweat. With our first two kids, we were introduced to story time at the library, soccer, etc, but life was still pretty "normal." Then along came Audrena. When she was born, our doctor declared that she was "tiny but mighty." At 7 pounds, 8 ounces, she really was not tiny, but she looked it. The nurses joked that she was our "billboard baby" because she was chosen to appear on the hospital's billboards around the city. Little did we know how well those two things would stick: "tiny but mighty" and "billboard baby."

Audrena has made a place for herself in the world. People fall in love with her spunky, redheaded attitude and dimpled smile. She is very outgoing and happy. She has been featured in hearing loss public service announcements and in the newspaper. Audrena's story has been shared in many places as a testament to the importance of newborn hearing screening, to the importance of following up on "refer" results, and as encouragement to parents to listen to that nagging voice when it says something is not right. Audrena has been a mystery to her geneticists. She has provided Audiology and Speech-Language Pathology graduate students opportunities to put their learned skills to work at the USD Scottish Rite Speech & Hearing Clinic. As for me, that reserved, quiet, sweaty high school speech class student? Well, I faced my fears and shared Audrena's photo and her story with the South Dakota legislature. Randy and I learned to speak up, to advocate for our daughter. We have mentored other families, just as more experienced families have mentored us along our hearing journey. Randy and I have also participated in panel discussions at large and small university courses for Audiology and Deaf Education students. All of this is just the beginning of "The Billboard Baby's Journey."

As I replied to my friend's Facebook post today, it occurred to me that our children are on the path to really great things, and I told her as much. I took a moment to reflect on whether, given the chance I would give Audrena natural hearing, or whether I would not change a thing. Natural hearing would eliminate many of the challenges she has faced, and will face, throughout life. However, her hearing loss has put her on a unique, beautiful, wonderful path in so many ways. I have no doubt that she will go places and do big things. Recently, I was given the opportunity again to participate in a panel for a university class taught by our much-loved Dr. M. The last thing Dr. M. asked was what I hope for as Audrena approaches the age where she will go off to college. I said, "I just want her to be the first woman President." Everyone laughed, including me, but I was only halfway joking. All three of my children have the potential to do great things in life. I believe they will. Because of that, I also believe that our billboard baby's journey is far from complete. Her hearing loss is not all bad. It's going to challenge her, but challenges drive us to succeed. It will also take her on a different journey. The road less traveled is sometimes the best route to take.

South Dakota Senate Bill 122

We have been busy lately. Work, children, Girl Scout cookie sales, and politics have been consuming our time. Yes, politics. I've been busy mailing letters and e-mailing our legislators. Wednesday morning I got up at 4:00 am and drove the 4 hours to Pierre to testify in front of the Senate Health and Human Services Committee. Then I drove the 4 hours back home. So what was worth 8 hours on the road for such a short time? Children. Particularly children with hearing loss. You see, Senate Bill 122 is an act to require insurance companies to cover audiology services, hearing equipment, and associated therapy for children with hearing loss in South Dakota. What is more worthwhile than giving children a chance to hear and speak to the best of their ability, regardless of whether or not their parents have the financial means to purchase hearing aids and speech therapy? We are fighting. And we are not finished yet. There is more work ahead. But with the support of our fellow South Dakotans we may just succeed. I am asking all South Dakota readers to please contact their legislators (click the link to find yours) and ask for a YES vote on SB122. Pass the message on to your friends. Act quickly because the bill will be heard Monday morning again. Let's give South Dakota's deaf and hard-of-hearing children the chance to speak because our children are the future voice of South Dakota.

P.S. If you listen to the audio on the website, you might just hear me testify. Just know that I was not at my best. I was trying very hard to hold back the tears, so I needed to take deep breaths, and I cut my speech short to give the many other parents behind me a chance to speak as well. We had a great turnout of supporters!

~ Carri