Born in 1961 to music lovers, I inherited the music gene. My father played bass guitar in a makeshift living room band (no garage), and my mother spent weekends in dance halls in London. I spent my childhood listening to “Casey Kasem's Top 40 Countdown” on my AM transistor radio. I have a keen ear for naming songs in one or two notes, and I love playing “Name That Tune.”
I dreamed when I was pregnant, as many parents do, of what my baby would become. Would she inherit my musicality and be the next Pat Benatar or Miley Cyrus? This would be my first and only child at 39, so there was pressure on her from the get-go. She would need to love music, or at least not complain while I listened to my '70s station on satellite radio.
Connecticut passed a law five months prior to my daughter's birth mandating a hearing test for babies before leaving the hospital. A nurse told me that Rachel had failed the test and was hearing impaired. Hearing impaired? How did this happen? Why did this happen?
Not knowing what “hearing impaired” meant, I instantly thought the worst — she is deaf. She will never hear music, dance, or be able to play “Name That Tune” with me. Other than having a deaf cat when I was a child, I had no experience with hearing loss, hearing aids, or deafness. Not hearing music was one thing, but how would Rachel learn to speak? I was overwrought with grief. My dreams and hopes for my child were shattered, or so I thought.
My mother determined that Rachel was not deaf by clapping her hands over Rachel's basinet while she was sleeping. Rachel woke up. “See,” my mother said, proud that she knew more than the doctors. “She can hear.”
Oh, OK. Thanks, Mom.
My mother, to her defense, was inexperienced with hearing impairment and deafness, too. I found that being uneducated about hearing and performing tests like this would only delay giving Rachel what she needed. Hearing-impaired children can be anything they want to be with the technology and resources that exist today.
Rachel has vestibular aqueduct syndrome, which prevents her from hearing in the high-pitch range, but her low-pitch range is acceptable. (She cannot hear Frankie Valli, but she can hear Barry White? I am OK with that.) Rachel was fitted with her first set of digital hearing aids at 8 months. Not only can she hear, but she learned how to speak, dance, sing, play piano, and act. And yes, she can even play “Name That Tune,” and is remarkably good when it comes to American Idol tunes.
The child who I thought would never speak testified at the Connecticut State Capitol in March in support of a bill that would afford deaf and hearing-impaired children a Bill of Rights in our state. The bill became law and ensures that every deaf and hearing-impaired child is entitled to a communication plan via their Individualized Education Plan. Thousands of children who are diagnosed with hearing loss will benefit from this new law. I was told from several state representatives that it was Rachel's testimony that helped get the bill passed. (See FastLinks.) She was articulate, confident, and poised. The chairman of the education committee, State Rep. Andrew Fleischmann, told her she had every right to be proud. “You really stand as an example of what we should accomplish for every child with hearing loss,” he said.
Rachel made a positive change that affected Connecticut's laws forever — a far cry from what I had originally thought and cried about 11 years ago. Although I questioned it, Rachel is the right child for me. I am so proud of Rachel for what she has done. She has received accolades from many sources for her advocacy skills since her testimony. She received a citation, was invited to the governor's office, did a segment on the local news, and in October, she will be presented with the first ever Youth Advocate Award from Connecticut Community Care, Inc., which up to now has only been granted to adults. (See FastLinks.) Rachel wants to be a writer/graphic novelist someday.
I heard about a proposed bill involving deaf and hearing-impaired students. I had never written a testimony before, but I felt that someone should speak up. Why not me?
Testifying at the State Capitol is supposed to be scary, but it was not hard for me. I knew what I was speaking for what was right. I gave my speech and was asked questions by the Education Committee through my FM system.
My mother and I checked online posts during the next months to watch the bill go through the political process. Every time it advanced, it felt like the world was one step closer to becoming a better place, at least in Connecticut. I was invited to the Capitol Region Education Council for an anniversary event at Soundbridge in Wethersfield. I was not told what I would be doing there.
I was surprised when I was called on stage to receive a citation. I did not know what it was, but it would be one of the most awesome things I have ever received. I was recognized for my advocacy skills and thanked for voicing my opinion. It was signed by three state officials and presented to me by Sen. Edith Prague and Rep. Tom Reynolds. My Mom framed it. I was almost sure that would be the end of it. Boy, was I wrong!
It was a huge honor when I found out in August I had been invited to the bill signing in Gov. Dannel Malloy's office. I was so excited! I felt so proud and powerful that I would be attending a bill signing for my own cause. I shook important representatives' hands and took pictures. (Figure 1.) The chairman of the education committee gave my FM system to the governor. (That's right, Gov. Malloy has worn my FM!) I stood next to him with other people who had a part in getting the bill passed as he sat at his desk to sign it. (Figure 2.) He had multiple pens that he used to sign one letter of his name at a time. I pride myself in having the first pen for the D in Dannel.
I helped make a whole new law in Connecticut and got to go to the governor's office, all for giving 10 minutes of testimony. I was also invited to another event by Connecticut Community Care to receive another award in October. I was able to do all of this because of my family, my teachers, and everyone who supported me. I am proud that this bill got passed and that I was able to help. It has been one of the most amazing feelings I think I will ever have. Hearing-impaired children all over Connecticut will now have a better chance in school because the people around them will know how to help them. Maybe, because of that, a new group of advocates will be born.
My next goal? I found out that insurance is not going to cover my hearing aids after I am 12. That just will not do. I might just have to testify again!
Visit http://bit.ly/StateGov50 and click on your state's link to learn more about getting involved in local issues.
- Watch Rachel Kane's testimony at http://bit.ly/RachelsTestimony.
- Read more about Rachel's citation at http://bit.ly/RachelsCitation.
- See Rachel on the news at http://bit.ly/RachelNews8.
- Read Sharon Kane's blog at www.kaneclusions.blogspot.com
- Visit HJ's Student Blog at http://bit.ly/HJStudentBlog.
- Check out HJ's R&D Blog at http://bit.ly/RDBlog.
- Click and Connect! Access the links in The Hearing Journal by reading this issue on our website or in our new iPad app, both available at thehearingjournal.com.
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