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Claire Speaks Up

From the Discovery newsletter of the Vanderbilt Kennedy Center
by Courtney Taylor

Claire is dressed up in a lion suit and she is roaring. She is crawling on all fours through large rings being held by her Susan Gray School (SGS) classmates. Each time she crawls through, she stands back up on her own two feet, opens her mouth really wide and she ROARS! Claire is 3 years old.

Claire's preschool teacher, Ms. Mullins, moves away from the "circus" station and puts on a sound-field amplification system headset. She turns the system on and sings a song about cleaning up the classroom. Claire hears the song and immediately begins to sing along. She takes off the lion suit and joins her classmates in tidying up the classroom.

"We discovered that Claire had hearing loss when she was about 4 ½ months old," said Claire's mother Michelle. "I always credit my husband with her early detection, because as early as 2 months of age, he was telling me he
didn't think she could hear. I didn't want to believe that was true. I just kept saying, 'Oh no, she's fine...she's fine.'
Well, one day I was holding her in the kitchen and she was facing me. Matt blew his coach's whistle, and she didn't flinch. She did not turn to see where the noise was coming from. She did not jump-nothing. That was the turning point for me to think maybe we needed to look into it."

Claire's parents discovered that she had not received a newborn hearing screening at the hospital when she was born. Then mandatory in 43 states, newborn hearing screenings were not required in Tennessee. Claire's parents,
disheartened to learn of the omission of the testing, eagerly sought out the opinions of audiologists at Vanderbilt who diagnosed Claire with having profound sensorineural bilateral hearing loss. Claire received her first cochlear implant a week after her first birthday, and her second about 5 months later.

Claire's parents enrolled her in the Susan Gray School after her Tennessee Early Intervention System (TEIS) service coordinator recommended the program.

"We were thrilled when Claire started at the Susan Gray School," said Michelle. "Right from the start, there was never a question in my mind that it was a good fit. The environment was so
nurturing. They were there with Claire and with us throughout her surgeries. They went through the process of her getting one implant, and then
getting the second implant. They had never had a student with cochlear implants, so they were learning right along with us."

Because hearing loss, when not detected early, can lead to delays in speech, language, and cognitive development, Claire's parents worked with their TEIS service coordinator, therapists, and SGS teachers to develop an Individualized Family Service Plan (IFSP). Though Claire was about 13 months old chronologically when she began at SGS, her "hearing age" was said to be zero. Claire's
IFSP spelled out goals and strategies to help raise her hearing age.

"We've worked with Claire in the classroom to be sure she is actively listening and responding to us with words and not gestures," said Ms. Mullins. "We have also worked with Claire to be sure she is using her voice to tell us and to tell her peers what she wants and how she feels. 'It's my turn now.' 'Please give me a cookie.'We work to encourage her to expand her use of language. If she says 'help,' I might mirror her and add 'help me, please.'We want her to use words as much as she can. It was also a goal of her IFSP to teach her to consistently wear her implants in group settings, and to teach her to use her words to tell an adult if they stopped working or fell off. 'Oh no! My ears fell off. Help me to put them on, please.'"

Claire's classmates understand that they are not to touch the external portions of Claire's implants that sit behind her ears. The teachers formally educated the class on "Claire's ears." They know the implants are not toys and that they help her hear. Her classmates were a bit curious when the teachers first began using the sound-field fm system, but now they barely notice it.
They know it is a tool that allows Claire to hear the teacher's voice better. Now they only mention it when they want to remind the teachers not to forget to put the headset on so that Claire can hear.

Ms. Mullins also is kept informed of what Claire is working on in her therapy sessions, in order that she might continue the work in the classroom. Michelle and Claire's father, Matt, are very grateful that Claire's teachers are willing and enthusiastic about working with her therapists, and are happy to report that at 3 years of age, Claire is now hearing within the typical range.

Claire's Law
In addition to staying busy with Claire's surgeries, therapies, and education, Claire's parents made it a priority to contact their local legislators to express their interest in putting together a bill to make newborn hearing screenings mandatory in Tennessee. They worked with the Tennessee Disability Coalition to draft the bill and were pleased to see it introduced before the State Legislature in January 2008, with an amendment instructing that the law be called "Claire's Law." Claire's Law passed and went into effect on July 1, 2008.

"When we found out that Claire didn't receive a newborn hearing screening, and when we found out that 43 other states had a law requiring that children be screened for hearing before they left the hospital-we just...That upset us," said Michelle. "We felt like there was really nothing we could do about not knowing about Claire's hearing loss, but working on that bill was a way to make something positive come from our situation. We feel good knowing that babies in Tennessee won't leave the hospital without having a hearing screening. It doesn't guarantee things, because there are conditions that are progressive, and things can happen, but even the awareness, even the fact that parents know that there is such a thing-because we didn't, when we left the hospital-is very comforting. Early intervention is so important. Claire's Law will help families to learn about their options as early as possible."