Jan 2018 Staunton News Leader
Indy Mueller believes he has magic ears. That's what he calls the high-tech cochlear implants that have made it so that the almost six-year-old doesn't realise he was born profoundly deaf. If you ask him, Indy will tell you that he is deaf, but if asked what it's like to be deaf, he says he doesn't know because he can hear and speak. "I like my magic ears," Indy said. "They help me hear."
"He has just flourished in leaps and bounds," Mueller said of her son.
It's a choice that the Muellers made for Indy when he was just 11 months old, to provide him with opportunities and experiences that might not have been afforded him without the cochlear implants. The former Staunton family moved to Chralottesville three years ago. It was a personal choice and one that the Muellers felt was right for them and for Indy. And now five years later, Indy is a kindergarten student, testing above many of his hearing peers. He's energetic and funny and has a pack of friends, Shannon Mueller said. "He's your typical boy," she said. "He can't sit down, as you can see."
When Indy was born and the Muellers were told that he was profoundly deaf, they were shocked and overwhelmed by questions about what life would look like for Indy as a child, teenager, adult. They wondered how would playing with his peers as a kindergartener, how would interacting with friends in high school, getting a job as an adult — they wondered what all that would look like and how different it would look from those around him. "We gave birth to a deaf child," Mueller said. "I just thought, I gotta learn ASL." Shannon Mueller, along with her husband and extended family, dove into learning American Sign Language. To teach their son how to communicate they would have to learn the only method of communication available to them and him — ASL. Or so they thought. As Shannon Mueller struggled to learn ASL, it was her father in New Jersey, also studying the language, that said "what about cochlear implants?" Mueller was amazed that the doctors that screened and re-screened Indy and told them he was deaf, never mentioned cochlear implants. In fact, all the Muellers were provided with at the time was a half-sheet of paper about American Sign Language.
The Muellers had a big decision to make. There are a lot of different thought process about deafness and deaf culture. Some families believe that a child born deaf has a right to American Sign Language, that there is no need for "correction" through the use of cochlear implants. But technology provides options for children and the Muellers wanted to know that they were doing everything they could to make sure Indy was able to lead the best life possible. They decided to go with cochlear implants.
Fast forward five years. Indy speaks and communicates and reads just as well as his hearing peers. The Muellers have asked Indy if he wants to learn sign language. He's spent time with kids his own age who are deaf and don't have cochlear implants and use sign language. So far Indy doesn't have any interest. If that changes at any time, the Muellers said they are happy to expose him to ASL. "The choice for us worked," Mueller said. "I can't imagine where we would be. I can't imagine what his life would be like." They still think back to when they learned about cochlear implants and how the option wasn't immediately presented to them when Indy was screened. There is a small window of time when children are still young enough to be exposed to sound that will allow them to verbally speak. If they are not exposed to sound in time, they will not be able to verbally communicate.
The Muellers could have missed their window. Believing that all families of profoundly deaf children should have all their options presented to them, Mueller, along with Dr. Lorin Bobsin, a speech pathologist, have written a bill that would better educate early intervention specialists on how to inform parents of their options with the goal of every deaf or hard of hearing child in the Commonwealth be as linguistically ready for kindergarten as their hearing peers. The bill requires each agency of the Commonwealth that is responsible for providing services to children who are deaf or hard of hearing to collaborate to provide unified and seamless services for each such child from the onset of the Early Hearing Detection and Intervention process through the end of his elementary and secondary school career." There are plenty of services out there for deaf and hard of hearing children, said Bobsin, who was Indy's speech therapist for many years. But there doesn't exist at the moment a way to bring all those services together to make sure no child falls through the cracks. It comes back to that short window of time that children need to be screened and early intervention began, before doors start to close. "There is the 1-3-6 rule," Mueller said. It states that every child that fails their hearing test at birth should be re-screened by one month, an official diagnosis be made by three months and early intervention for children who are deaf or hard of hearing begins at the age of six months.