Amelia: The struggle..let it bond us.

I attended the EHDI conference this past week for my new job. This was my first time going to the Early Hearing Detection and Intervention conference. It's a mixed crowd of ENT doctors, audiologists, students working on becoming audiologists, early intervention specialists, support groups like Hands & Voices, and parents of children who are Deaf, deaf, or hard of hearing. No mistake, I just wrote "deaf" twice. I'm slowly getting educated on these complex terms: Deaf- you are living in the Deaf culture; deaf- you are deaf but you have technology on such as cochlear implants or you might use sign, but not consider yourself part of the big "D" deaf community; hard of hearing- you have mild to severe hearing loss. Confused yet? It is not even really that clear cut, but for the purposes of this blog I am trying to make it simplified. Both of my children, Colin and Amelia, are hard of hearing. It's hard to put into words the different emotions I felt at the conference. My work badge said, "GA Hands & Voices Guide By Your Side Parent Guide" Underneath my badge, however, was my heart as a parent of hard of hearing children. The conference was very helpful as far as my job goes. The conference was very hurtful as far as my heart goes.

The inspiration: I was fascinated and inspired by the stories I heard at the conference. In one session, a group of college students from Gallaudet University in Washington D.C. sat on a discussion panel. Gallaudet is a private college university for Deaf and HOH students to attend. I didn't even know the college existed so it was cool to learn about it. All the students used American Sign Language. Some had technology. They all talked about their path to finding their identity. I believe the struggle to find identity occurs in every human being. I also was impressed with all of the professionals at the conference who are dedicating their life's work to helping children who have hearing loss. The majority of babies born in the United States are now screened at birth for hearing loss! Early detection of hearing loss is so crucial to helping these children with language/literacy.

Communication mode madness: As I said before, the conference was very helpful as far as my job goes, however, it was very hurtful as far as my heart goes. Communication is the foundation of our lives. It's the social component that makes us who we are. It's important and so when you have a topic of importance you know it's going to be debated. I felt like I truly got to see first hand at the conference this communication mode debate. Let me set the scene. It seemed as if the majority of the conference attendees(especially the parent population) could sign. ASL is an art and it takes time to learn so I would not know if they are fluent or not (chuckle.) I did find myself isolated in certain situations, because I cannot sign. Well I take that back, I can do some baby signs, (more, nurse, food, yes, no.) On a serious note, I definitely want to learn some basic American Sign Language for my job. I was exhausted by the end of some presentations, because I was listening to an interpreter, watching the presenter sign, and watching the closed captioning board for words I might have missed. It reminded me of the fact that Amelia is exhausted at the end of the day ,because even though she is aided, she has to listen really hard. My family chose Listening and Spoken Language for Amelia when we found out about her hearing loss. We aided her with hearing aids and chose not to sign. Colin's loss is mild and he was already talking when we found out late about his hearing loss so no communication mode choice had to be made with him. Colin just needed speech help. Other families, as I'm learning, have chosen a different mode of communication with their child. Some families have chosen Total Communication, which is where they use technology and sign language. Some families do not use technology at all and use sign language. Have I confused you yet once again? I am about to tell you something that you probably don't know, especially if you are not involved in the hearing loss world. Families have all those choices, which I listed above, but here is the dirty truth. You, as a parent of a child with hearing loss, will be judged by which path you choose! That's right. It's a complex answer to why we are judged. Some do not believe hearing loss is an impairment. It's the way they were born and they are proud of it and hence judge us who put technology on our kids. Some people that put technology on their kids are dismissive, unappreciative, and insensitive to Deaf culture. We aided Amelia with the main intent of allowing her greater communication access to the world around her. After all, the majority of the world is hearing and speaking. We believe Amelia should learn sign language someday after all her great grandparents were both big D Deaf. That' right. Great Grandma and Grandpa were Deaf, only signed and had four hearing children. We wondered in the beginning of Amelia's journey what her great grandparents would have thought about us aiding her? So in our personal situation, we believe that listening/spoken language was the best choice for our family, but I want people to know that we have an appreciation for Deaf culture. I in return, would like an appreciation back.

The struggle: Now comes the raw heart to heart talk. The fact that we all have children with hearing loss should bond us. Even when I use the word "loss" it's debated. I sat in one of the sessions at the conference and a mom was talking about the grief process of having a child with hearing loss. At the end, another mom stood up and said, "I am trying to understand your point of view, because I did not grieve when I found out my child had hearing loss." This mom and many in the Deaf culture say they do not feel a sense of grief because their perspective is different. They already know Deaf people or they are Deaf themselves. As these two women talked politely about their different emotional responses I sat an thought. I wrote down this sentence on my notes, "Grief comes from fear-Scarlett" I want the Deaf community to know this. I grieved my child's hearing loss, because I was fearful to lose something familiar to me. I feared not being able to communicate with my child the only way I knew how..to speak. I feared the new path, because I had never been down it. I was fearful, because I had no knowledge. I am a hearing parent in a hearing world. Which leads me to my second statement, " Fear can be silenced with knowledge"-Scarlett." The more I walked down this new path, I gained the knowledge that quieted my fears. Children who are Deaf/deaf/HOH are successful human beings! I experience it every day in my home life. My new job is allowing me to help families not be so fearful and to get them the knowledge they seek, whether it be speak with their baby or to sign. In fact now, if I was given a choice I would boldly walk down the path of hearing loss again. It has provided me with so many blessings and so many life experiences. At the conference, I felt like I was being indirectly told you don't know "the struggle." You aided your child and everything must be fabulous. The fact is I did struggle. At first, I had to struggle to get out of bed, then I had to struggle to balance my other children's life with my special needs child, and now I felt like at the conference I was struggling to be heard. Some of our struggles are different depending on communication choices, for example, not having insurance companies pay for hearing aids which puts a financial burden on the family or hours of speech therapy. Some of our struggles, no matter what the communication mode is, are the same such as social stigmatisms and IEPs. And as mothers haven't we all cried over our child's crib at some point, because you don't know what tomorrow will bring. I want all of us in the hearing loss community to choose each other and not the fight. I want all of us to choose to stand up for each other in the fight for our children's rights. We all have made different choices in modes of communication, but we all are part of the struggle. The struggle to have our children be represented, taken care of, and heard..in signs or in words. The bond should be greater than the divide. "The struggle", let it bond us...not bind us to a certain opinion. -Scarlett Giles

Let love bond us!

Linda taught Amelia at Atl. Speech School & Pamela was our GA PINES Advisor. I got to see these women at the conference and say "thank you" for helping my family.