The five of us Parent Guides & Terri, our Program Coordinator for Georgia Hands & Voices Guide By Your Side Program, attended the EHDI conference this past March. EHDI stands for Early Hearing Detection and Intervention. 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; may or may not use technology and/or sign. Confused yet? It is not even really that clear cut! For the purposes of this blog, I am trying to make it simplified. Both of my children 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.
At the conference, I was fascinated and inspired by the stories that were different from mine. 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. 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. This was the positive part of the conference.
The negative part: I got to see this communication mode debate. Communication is the foundation of our lives. It's the social component that makes us who we are. It's important . When you have a topic of importance you know it's going to be debated. My family chose Listening and Spoken Language for our daughter when we found out about her hearing loss. We aided her with hearing aids and put her in a speech program. Our son's journey was different since he was caught late and has high frequency loss. He needed lots of speech therapy, but was hearing without assistive technology/sign language. Some families choose Total Communication, which is where they use technology and sign language. Some families do not use technology at all and use sign language. Through this wonderful job, I am meeting families who chose a different communication mode path with their child than me. I have been blessed by learning about their journey. The way I see it, our guide job is not to pick your path, but tell you to make your path purposeful. If you are in the beginning of your hearing loss journey here is something that might be hard to understand. 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 those who put technology on kids. Some people that put technology on their kids are dismissive, unappreciative, and insensitive to Deaf culture. In our opinion, we aided our daughter with the main intent of allowing her greater communication access to the world around her. However, her great grandparents were both big D Deaf. Great Grandma and Grandpa were Deaf, only signed and had four hearing children. We wondered in the beginning of our journey what the great grandparents would have thought about us using technology? So where do I fit into this communication mode madness? I don't nor do I want to. I have a child that was caught early with hearing loss. I have a child that was caught late. I have a children who use technology and speak. I had family that were in the Deaf culture. I want to do what is right for my family and not be judged for it. So you find out your child has hearing loss, then you find out the financial burden, and on top of that you get thrown into a communication war. Keep your head up. I feel like we are moving progressively forward. Georgia Hands & Voices is trying to mend that bridge with our rainbow of differences so to speak. Our Guide By Your Side program is here to support you and your decisions.
The silver lining of hope: You are reading this blog, which means you know about GA Hands & Voices and if you keep reading the blog you will learn about us parent guides. We all come from different backgrounds. We all have chosen different paths, but we do not judge each other. We will not judge you. We are here to support and encourage you . 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. 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 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. 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, there were moments that I felt like I was being judged and indirectly told 'You don't know the struggle.' The fact is I did struggle. At first, I had to struggle to get out of bed. I had to struggle to balance my other children's life with my special needs child. I had to struggle to find financial assistance with hearing aids. I struggled with being disappointed with our society and government in failing their oaths to protect our kids. The fact is you will struggle. Some of our struggles are different depending on communication choices, for example, expensive speech therapy or lack of interpreters or Deaf mentors. 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? We all struggle to be heard. 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. Let the struggle bond us...not bind us to a certain opinion or mode.
The silver lining of hope: You are reading this blog, which means you know about GA Hands & Voices and if you keep reading the blog you will learn about us parent guides. We all come from different backgrounds. We all have chosen different paths, but we do not judge each other. We will not judge you. We are here to support and encourage you . 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. 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 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. 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, there were moments that I felt like I was being judged and indirectly told 'You don't know the struggle.' The fact is I did struggle. At first, I had to struggle to get out of bed. I had to struggle to balance my other children's life with my special needs child. I had to struggle to find financial assistance with hearing aids. I struggled with being disappointed with our society and government in failing their oaths to protect our kids. The fact is you will struggle. Some of our struggles are different depending on communication choices, for example, expensive speech therapy or lack of interpreters or Deaf mentors. 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? We all struggle to be heard. 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. Let the struggle bond us...not bind us to a certain opinion or mode.
So to wrap everything back to the "Mother May I" concept. Each of us guides are mothers of deaf/HOH children. Being a mother is hard. When my child was a baby, I thought how am I to know what path she might want to take in the future? I had to come to peace with unanswered questions. You just have to make decisions with a motherly heart. Our children call out to us in different ways with different needs. All children though call out, " Mother be strong. Mother love me." The most important part is to provide chances and opportunities so when your child signs/speaks "Mother, May I_____?" You can say, "Yes, you may!" Happy Mother's Day
-Scarlett Giles
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