The reason I want to share this information is because as a person who has lived with this condition my whole life, I'm hoping my experience will help others. I didn't know I had US until I was 36 years old. It's determined by a DNA test. I was born passing the newborn hearing test. By the age of 3, after many years of my mom telling doctors that I was hearing things, I was given my first pair of hearing aids. My parents put me in an Early Intervention Program at the age of 3. It was a program in the public school that helped me learn Sign Language as I was learning speech. Everyday I was given spoken and signed language during the school day, and at home everything was spoken. No one in my family signed but my brother and I. We struggled with fitting into both worlds, but our family never treated us as if we were different. We were expected to have respect, have manners, follow rules, make good grades in school, play in little league sports, and to never use our deafness as an excuse to not succeed. I had interpreters in my classrooms during the 1st grade, but I felt like I wasn't "normal" so I asked not to have any during my 2nd grade year and beyond. A decision I would later regret. As I entered the 5th grade, my vision was bad enough that I needed glasses. It didn't bother me too much, as it was something I couldn't change. As I entered my middle school years, I was still trying to fit in and be "normal" and still refused an interpreter, even though I knew I wasn't hearing everything. People would sit behind me and whisper or say my name, then when I finally heard them, they would laugh. I would walk into signs or walls sometimes. I wasn't exactly a behavioral problem, but I wasn't outspoken either. I was ok with blending in with the crowd, yet I really wanted to be accepted with the popular crowd. My parents were always very supportive and always made sure that I knew I wasn't broken. Even when I wanted to quit, they wouldn't let me. During my 7th grade year, I wanted to compete in the UIL Listening Team. It's an event where a person transcribes what's being said on a tape recorder. I couldn't hear the words being said. My parents knew there was absolutely no way I'd place. You know what they did? They helped me practice, my dad drove me to the competition, he waited for me to finish, and then with a smile on his face asked me how I did. I told him I had no idea what the heck was being said. We laughed and he told me how proud he was of me for going for it. I never felt left out or unloved by any member of my family. I tried out for cheerleading, and I choked. I probably could've made the team. I had an interpreter helping me, but I choked. My parents encouraged me every single step of the way. My freshman year in High School, I made the flag corp/drill team. I didn't have an interpreter for that. My mom helped me with the tryouts, learning the dances and the steps. My friends on the team would help me know when the music was starting. On the field, I would be put in front of a band member who would nod or tip the instrument for me to know when to start. During all this time, I didn't use my signs. I would only use them with my brother or with my Deaf friends. I wouldn't really acknowledge my own Deafness. I learned to adapt by watching the people around me, reading lips, and doing a lot of reading. My vision didn't really bother me, I knew that having glasses wasn't considered an abnormal thing.
As I entered my sophomore year, I decided to take American Sign Language as an elective. Boy did that class change my life. I began to realize just how much I needed the signs. How "normal" signing can be. How much other people were willing to learn sign to communicate with other Deaf people. My teacher knew me from my early years in elemetary school. She helped me find my voice. She helped me to fully accept and gain pride in my deafness. I embraced it. I asked my parents to please use signs at home. I still wasn't willing to have an interpreter in my classroom and after school activities yet, but I was slowly adapting to having signs in my life. My mom was all on board. She began learning ASL, began working as an interpreter in the schools for other deaf students, and interpreting the prayers at family events. I would begin to socialize with the other Deaf students in the school. I was learning how to be a part of both worlds and get comfortable in it. I also worked while maintaining an A/B GPA and being on the Drill Team. I made the typical teenage mistakes and went through all the emotions of being a teenager, but through it all my family supported me every step of the way.
We started realizing that my vision was getting worse when I started driving. There were clues as I was growing up that my vision at night and peripheral vision wasn't what it was supposed to be. We always just chalked it up to me being clumsy or not paying attention. When I would drive at night, I wouldn't see certain things or not be able to judge the sped or space of the cars. After 2 wrecked cars that happened at night, I started to adjust my driving. Only drove routes I knew by heart. Drove by reading the lines on the road. I would park when I could just pull through. Again through out all this, it never crossed our minds that my Deafness and vision were connected.
When I started my Senior year, I was semi-forced to have an interpreter in my classrooms. I was hesitant at first, but it only took one class to realize just how much I needed it. How much I wanted it. I fianlly was able to know why the other classmates were laughing, I fianlly realized just how much I was missing on instructional teachings, and that not everytime someone laughed; it wasn't at me. I began to interact more in the classrooms. I began to socialize a little bit more. I began to realize that I was "normal". Even during my college years, I made sure I had an interpreter and a note taker in everyone of my classes. I lived in my own apartment. My did help me with paying the bills, but I focused on my studies and worked a part time job as an assistant to the secrtary. I went on to earn a B.S. in Communication Sciences and Disorders. I graduated with top honors. After this, I earned my M.S. in Deaf Education. I did all this in 5 years.
After graduation, I secured a job as a Deaf Education teacher. I wanted to share my experiences with other students and encourage them to live up to their potientail. I wanted to show them they could do whatever they wanted to do. Deafness wasn't an excuse to not succeed. They have rights and abilities to help them succeed. I was still having trouble seeing at night, but wouldn't really accept it, even when I would hit a pole due to not seeing it as I was pulling out of my parking space. My family still supported me 100 percent. There was no holding me back. Even when it seemed I wasn't fully thinking through the situation with my driving. I did start making some adjustments though, I would drive less often at night unless I was forced to. I would ride with friends or let them drive my car when we'd go out. It was during my first year of teaching that I met my future husband.
It was a learning experience for my then boyfriend, Jason. He accepted my deafness from day one. He started to learn sign, he made sure to look at me when talking to me, and he made sure others knew to look at me when talking to me. He would be my advocate when I wouldn't say anything. He never made me feel like my deafness was an issue. We struggled as a couple as many others do. He was in the Army, so we were never in the same place. We would take turns about every 3 months flying to each other for a week. We'd call as often as we could. We have arguments due to my insecurities and his selfishness. We'd work through it. We got married and lived together for the first time. In addition to 2 independent people coming together as one, we were also adjusting to my limitations in my vision. We both wouldn't accept the severity of it and basically just ignored it. Jason would think I was ignoring the mess on the floor, or not wipe down a spot on the table, or ignore him just to piss him off. When in all actuality, I honestly didn't see the mess on the floor that I missed while sweeping. I didn't see the water spot on the dark coffee table. I didn't hear him calling for me from another room. Neither one of really communicated well with each other.
It honestly wasn't until the last 4 or 5 years, after being married 7 years, that we finally started really communicating with each other. He started realizing just how far my limitations were. We adjusted once again. He would help me "see" what I missed, guide me gently when we were in a dark room. I started setting up the house in small ways the way a blind person would do. When we found out we were expecting our first child, a whole new set of worries set in. How would I hear my baby crying? How would we handle it if our child was born deaf? Would I be able to parent as a Deaf mom? Funny how my vision never really entered our minds. Jason was gone a lot due to field exercises, deployments, and TDYs. As much as he'd be gone, I'd be doing a lot of this on my own. Jason's mom found me a monitor that would vibrate when the baby cried. We found a video monitor that we could use. I learned how many steps would take me to and from the baby's room to my own.
During the first years of my children's lives, we all adjusted together. We use signs and spoken language in the home. We developed friendships with people who accepted me and my limitations unconditionally. When Jason would be gone, I knew who I could call to help me with things in the house, with things going on in the neighborhood after dark, help me keep an eye on the kids, and would pick me up and drop me off at home for Girl's Night Out. It was during this time I learned what true friendship was. What unconditional friendships that will last a lifetime was. I thank God every single day for these people.
We discovered I had US Type II. For some reason, this hit me so hard. I struggled and grieved for so long. Before knowing the diagnosis, I just went with life and adjusted as needed. I avoided driving at night, I slowly set up the house as a blind person would, I'd make sure the kids would look at me when talking to me. They of course take advantage as most kids do, but for the most part they're very respectful of the fact that I'm trying my best not to let my limitations affect their lives negativly. It's harder now that their in extra curricular activities. The video below will explain it more.
Feel free to connect with me if you have questions or comments.
Some links to learn more...
- https://www.nidcd.nih.gov/health/usher-syndromehealth/usher-syndrome
- https://www.nidcd.nih.gov/health/usher-syndromehealth/usher-syndrome
- https://ghr.nlm.nih.gov/condition/usher-syndrome
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