you may also like

Things People Should Know

By Catherine Fries Vaughn

Lily VaughnI don’t like the word disability. I’d rather use any other word that applies. I tell my 10-year-old that she is different. I tell her that we’re all different.

I’m short. Some people are tall. We come in all colors, shapes and sizes. I tell my child that she has a “physical challenge.” Most of us have some sort of physical challenge to address. Our daughter, Lily, has bilateral cookie bite hearing loss. She can hear, but she misses out on midrange frequencies where speech occurs.

Lily was adopted from Guanxi Province in China. She was 15 months old when we traveled to China to adopt her and, at the time, we did not realize that she had hearing loss. Despite all of our research prior to adopting, my husband and I were not aware that a hearing test should be administered as soon as we returned to the states. Although we took Lily to wonderful pediatricians, a hearing test was not immediately performed. My husband and I would like to stress that parents should have their children’s hearing tested as soon as they return from adopting in another country.

Lily picked up English very quickly, but a couple of years later we realized she was not always responding when spoken to. Since our daughter had chronic congestion and enlarged tonsils, the doctors surmised that the tonsils might be pressing on the Eustachian tubes and causing loss of hearing. After a tonsillectomy, our daughter was not sick as much, but it became evident that she had permanent hearing loss. We turned to The Children’s Hearing Institute in Manhattan for help. Lily was diagnosed at age 4 and wears bilateral hearing aids.

The following are things that we wish people knew about hearing loss:

Hearing loss affects the whole person. My husband and I strongly recommend a whole-child approach. The Children’s Hearing Institute offers this kind of comprehensive mode of care. The Institute has helped us not only with audiology, but also with speech therapy as well as assistance with Lily’s educational and emotional needs. My husband and I try to teach our daughter not to focus on the loss, but we also realize the importance of accepting the loss, and even grieving that loss, so that she can move forward and grow into a proud woman who happens to have hearing loss.

My daughter hears, but she often does not overhear. I wish that people could really understand the information that is gleaned from overhearing others talk. We could then put ourselves in the shoes of people with hearing loss and imagine what it would be like for them. Sometimes people address Lily, and she doesn’t answer them. People think she is ignoring them, and I know that she simply didn’t hear them.

Speaking in a loud voice doesn’t always help. Well-meaning people are not always aware that speaking louder is not helpful, but looking directly at someone who is deaf or hard of hearing may be better for communication. It hurts my daughter’s ears when someone raises their voice.

Help children find their voice. Lily has been working on finding her own voice, and she has been speaking up more when she doesn’t understand people. It’s a process. I advocate for my daughter, but more importantly, I am teaching her to advocate for herself.

When her hearing loss was first diagnosed, Lily was reluctant to let teachers and friends know that she didn’t hear them. As time goes by, she feels more comfortable saying “I didn’t hear you,” rather than “What?” or “Huh?”. This helps others realize that Lily was paying attention to them, but she didn’t hear them.

In previous years, Lily was getting good grades, but she was often confused about her assignments. Even though the assignment was written on the board, I believe Lily was not hearing the details. This year, Lily speaks up more when she doesn’t understand an assignment. She tells mom and dad when she is having a problem, or she calls a friend for clarification. I have started suggesting to Lily’s teachers to seat her close to the assignment board so that she can hear any explanation the teacher might give.

Lily studies Kung Fu at Edgewater Kung Fu in New Jersey. She is part of a leadership training program taught by Sifu Karl Romain. In addition to their physical training, the children learn to overcome fear of speaking in front of a group. Recently, Lily was asked to read a brief essay in front of her class and take a few questions. Without looking to me for help, Lily was able to politely let the other children know when she couldn’t hear their question, and she moved right on. I was very happy to see this growth in Lily’s confidence. Lily has been fortunate to find a sport that she feels she can excel at under the guidance of caring instructors. This has helped her to gain confidence and to advocate for herself.

Networking with parents can be a great comfort. Meeting parents of other children with hearing loss can be a great comfort for both parent and child. Along the way, Lily has made friends with another child who also has bilateral hearing loss. Their friendship has helped to sustain them as they navigate this tender age in their lives. They share a special bond because they can relate to what the other one is going through. They laugh. They talk. They are just kids together. Hearing loss is not the focus of their conversations. Lively discussions of Harry Potter are the order of the day.

Mainstream educators need to be trained and informed about children who are deaf and hard of hearing. I would like to see more seminars and programs that would help teachers gain knowledge about the particular journey of our children in the classroom. I would also like to see substitute teachers receive more training in hearing loss and other types of disabilities so that children don’t lose valuable class time when their regular teacher is absent. I don’t know how to implement these programs in the school system, but this is on my wish list.

Know the law and remain calm. I recommend familiarizing yourself with the Individuals with Disabilities Education Act (IDEA). When you are knowledgeable about law and your parental rights, you will be able to advocate for your child. When discussing an Individualized Education Program (IEP) for your child, take your time to examine it carefully, ask questions, and request meetings/teacher conferences in order to understand it fully.

As parents, it is easy to become emotional about matters that concern your child. My husband and I have found that it is important to remain calm in meetings. We realize that our administrators, teachers and other professionals have our child’s best interest at heart too, and we know that working together as a team is in the best interest of our child.

Support from professionals who are deaf or hard of hearing. My daughter would like to see professionals who are deaf and hard of hearing in the field of audiology or who specialize in disorders of the ear, nose and throat. She feels that these professionals can relate to what other patients with hearing loss are going through. My daughter raises a valid point and she would like to make her thoughts known.

I wish that my daughter were writing this herself. I hope that she will continue to confidently speak up for herself, and be proud of all that she is.

Source: Volta Voices (2013), Volume 20, Issue 2