Our daughter Emmy was born with a profound hearing loss. Hearing aids were providing very little benefit and we quickly realized we needed a better solution. Our family decided that the right fit for Emmy was to pursue a cochlear implant.
While we knew the potential of the technology, we wondered if our daughter would be able to do all the things we had envisioned her doing. We thought of her talking on the phone, playing sports, singing, running around the neighborhood with friends, and swimming. But our biggest concerns were whether she would be able to develop language, read, and go to a mainstream school with her sister.
Emmy got her implant at thirteen months and attended four years of intense schooling and speech therapy/aural rehabilitation. While this time was very demanding for our family, it allowed Emmy to progress in the ways we had hoped and prayed for.
Emmy was mainstreamed into a public charter school when she was in Pre-Kindergarten. She entered a class with twenty other students and an amazing teacher. Emmy was the only child with hearing loss in her school of 1,200 students.
The first week of school, Emmy got up in front of the class and showed everyone her cochlear implants. She brought coloring books to the class that explained hearing loss and how cochlear implants helped, and we answered questions from the students. We did this at the beginning of each school year until she was in third grade.
We taught the school staff how to use an FM system, an assistive listening system that required the teacher to wear a microphone so their voice could bypass the noise in the classroom and be transmitted directly into Emmy’s implant. We shared resources with the school that taught them about hearing loss, the differences between hearing aids and cochlear implants, and how to teach a child with hearing loss.
Emmy excelled in school. She made friends, she learned to read, and she joined the choir. She tried many different sports including karate, volleyball, basketball, softball, and swimming. She learned to advocate for herself. She learned that when you are a student with a difference in a mainstream school, you cannot be shy about what you need. You have to speak up and educate others. This has turned her into an advocate not just for herself but for others.
There have certainly been challenges along the way. Being in a school without an educational audiologist or support specialist knowledgeable about hearing loss and cochlear implants was difficult because there was no one on staff who truly understood or could anticipate Emmy’s needs. When it came time to discuss new accommodations for her to learn effectively, it was always our responsibility as her family to teach the school staff.
The hardest part was perhaps not having other students with hearing loss in the school. Even though Emmy’s cochlear implants allow her to fully participate in the hearing world, she is still deaf and identifies as such. For that reason, we have always tried to keep her involved in the hearing loss community so she knew other kids and adults with hearing loss. Our hope was that this would prevent her from feeling like she was the only one out there in this situation.
Throughout Emmy’s years in school, her needs have changed, and we adjusted accommodations accordingly. In the early years, Emmy used a traditional FM system with her cochlear implant. She had preferential seating in the classroom, daily listening checks of her hearing devices, and constant communication between school staff and parents.
As she got older, she asked for closed-captioning on all videos shown in school. When she entered middle school and the classes became more discussion based, she started using other assistive listening devices such as a Phonak Roger Pen and Roger Select to supplement her hearing in a noisy classroom and while playing sports.
Emmy is now a freshman at Northern Arizona University and is studying Elementary and Special Education. She is a board member of the local AG Bell Chapter, a mentor for Advanced Bionics, a member of ASL club and the College Diabetes Network as well as several education-based clubs.
We were concerned about what would happen with Emmy’s accommodations at college, but we found that her university was more than willing to go the extra mile to help her. They set up CART (Communication Access Realtime Translation) services for each of her classes. In this setup, the teacher speaks into a microphone, and the remote service provider types out the lecture in real time so that it can be visible on Emmy’s computer when she connects to the service via Skype. They also gave her a hearing-accessible alert system, which included a doorbell for her dorm room, fire and smoke alarms for each room and bathroom she uses, and a desktop alert system that connects to her cell phone.
Nineteen years ago, when Emmy was diagnosed with profound hearing loss, we had no idea what was in store for her or for us as a family. We were terrified to leave our safe bubble of early intervention and professionals experienced with hearing loss to jump into a mainstream school. But in our mainstream school, we found amazing staff and teachers who wanted to learn something new. They wanted to do the best they could for Emmy, but it was also up to us as Emmy’s family to take the initiative and become advocates for our child.
If you have a child with hearing loss, here are some things that you can do to ensure they get the most out of their education, no matter what kind of school setting they are in.
Thankfully, in many schools around the country, there are resident or itinerant educational audiologists and special education specialists knowledgeable and trained in working with children with hearing loss. Their expertise and presence at school is invaluable in making sure a child’s educational needs are met. But regardless of whether such a professional is available at your child’s school, never underestimate the critical importance of an informed parent’s voice. You know your child best, and you are the best advocate for them until they can be their own advocate.
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