My Silent Hearing World

My Silent Hearing World

         I am deaf, and this is who I am. I will always be deaf, no matter what. But I wasn’t deaf my entire life. For the first two years of my life, I was hearing. I was born two weeks late in September of 1985. My mom said I arrived into this world kicking and screaming. She also tells me that when I was born, I looked like Great Grandpa Watt. When the nurse laid me in my mom’s arms, I stopped screaming and looked at my mom. Mom was so full of love; I was her precious baby, hearing her voice and everything.

         I was such a good baby as Mom says. I slept through the night, unlike my older sister, Riece who slept during the day and was awake during the night. Whenever I had a belly ache, Mom would hold me and rock me in the old rocking chair, rubbing my back and belly. She would also sing to me and comfort me. I was the baby that loved to snuggle.

         Riece was such a loving older sister. She loved me, and was protective of me. She wouldn’t let anyone hurt me. She also wouldn’t let me sit there and cry; she was always there for me. When I was first born, she had came into the room where Mom and I were, wearing a smock which she hated. She held me with the help of Mom, a little uneasy of holding me at first since I was so tiny.

         When I started walking, I was unstoppable! I would climb out of my crib and go everywhere. Nothing would stop me. Mom and Dad would tell me no, it was a challenge to see how long I could wait out my parents, and then I would do whatever they told me not to do anyway. And when I began talking, I started with whole sentences. I never used baby talk. I would say “C, stop it!” to Riece. I used to call her ‘C’ when I was little since I was unable to pronounce her full name, which is Laurica. I also loved to ask why with everything. ‘Why this, why that’ and so on. I also had the habit of taking my toys apart, then putting them back together. I’m not too sure why I did this, but I guess I just wanted to see how my toys had been put together and how they worked.

         Then everything changed in November, 1987. I was only 26 months old when I became ill over night. The next day I worsened. My fever ran high; I was very pale, very lethargic and very inactive, which was pretty unusual for me. Nothing was staying in my stomach. My mom took me to the doctor's, and the doctor just said it was the flu.

         That night, I had a very bad night. My fever kept spiking at 105 degrees, dropping then striking again. And again nothing is staying in my stomach, not even water. My parents set up a nurses' quarters in the living room as my dad made a midnight trip for Gatorade, soda, and anything that might stay inside my system. Dad slept when I did and tried to console me when I woke. I've gotten up several times over the night, either to get a doll, a glass, or just to sit in a chair. I grinded my teeth and began biting things - my blanket, stuffed toys, my dad's shoulder as he put me back to bed again and again as I woke up and wandered.

         The morning came without any relief. Mom held me and rocked in the rocking chair. The grinding of teeth and biting continued, and the fever is still high. Mom had called the doctor and begged him to examine me again. She couldn’t get me in until late in the day. I was so hot to the touch that Mom decided to give me a bath. We both got into the tub together, with Mom holding me. I was so stiff that to Mom it seemed like I was having a seizure. Mom was so scared for me. After the bath, she put me in my pajamas and laid me down in her bed with my stuffed Garfield. The bath did help my fever a bit, but I feel cold whenever I'm touched by mom or dad. I was also almost a pale blue color. Garfield and I slept together for a while. Later I woke up and reached for my water. As I reached, I fell flat onto my face, and that was when Mom discovered I could no longer walk. Every time I tried to walk, I would fall.

         Finally I was taken back to the doctors. My symptoms had definitely worsened, but the doctor still insisted it was just the flu. Mom knew I did not have the flu and argued with him. Mom told him to look at me, see that I couldn’t walk or hold my head up. “Put her down, let me see her walk,” the doctor said. So my mom put me down. And again I fell flat on my face, like I was a rag doll. The doctor then decided we needed to go to the emergency room at the hospital. Mom brought me to the Memorial Hospital of Sheridan County soon after the visit with the doctor, after calling Dad to let him know. The doctors there did tests, including a spinal tap. As they did the spinal tap, I screamed and it was hard for Mom to just sit there and let them ‘hurt’ me. That was when they found out I had bacterial spinal meningitis.

         I continued grinding my teeth and biting in pain. As I was battling the infection, the doctors told my parents that the pain is akin to that of a migraine headache except on both sides of the head. I would hold my head and pull my hair, trying to get rid of the pain. My spinal column and limbs were stiff and I cried out when they were bent or handled too roughly.

         There had only been 3 cases of meningitis that year in Sheridan. Mine was the worst.

         I was given an IV and a powerful antibiotic as a double doses as time was a critical element. I cried and said, “Mommy, it’s hot. No it’s hot.” Mom couldn’t do anything about it and felt bad. I was admitted to the hospital; isolation and ICU. My parents spent the night in shifts. The doctor didn’t think I would last through the night. I would sleep for a little while, then wake up from the pain. I writhed and turned and threw up again and again. I had been put onto a heart monitor. Over the night, the alarm on the monitor went off, which scared Mom so badly. The nurses rushed into my room and discovered I had just shifted and knocked a monitor loose. Mom sat there watching me throughout the night. She felt that if she watched me long enough, I would make it through the night. I made it.

         The doctor had to tie my hands down in fear that I would rip out the IV. After the doctor had left the room, the nurse and my mom untied my hands, thinking it wasn’t right to tie them down. I spent 2 weeks in the hospital. My parents spent Thanksgiving in the hospital as my sister stayed with our grandparents for the holiday. My mom even spent her birthday in the hospital. I slowly recovered from this disease. As I recovered, Dad brought the VCR from home and we watched my favorite cartoons; Mom, Garfield and me. Garfield had never left my side throughout my hospital stay. He stayed with me the entire time. Many people prayed for me and sent me flowers, stuffed animals and cards.

         When we were almost ready to go home, the doctor made me walk but I still could not walk. I didn’t have any balance. The meningitis has affected the 8th nerve, which controls both hearing and balance. My parents were told that I might be mentally affected, and also were warned that my hearing may have been affected. The nurse told my mom to go to the chapel to pray. Mom couldn’t do it; she felt that God had deserted us.

         The pediatric floor celebrated my leaving. Mom cried and I just wanted out of that place! After leaving the hospital, I was still slightly ill. When we got home, Mom sat me down on the couch. I patted the cushion and said, “This is so nice, so nice.” Garfield and I were home again. I still wasn’t walking, and talked less than usual.

         After a while, I started avoiding Garfield. I wouldn’t talk to him or even look at him. It was probably because Garfield brought back so many memories of the hospital stay and what I had to go through, and I just didn’t want to remember those things. Poor Garfield; he was left lying around somewhere alone as I stayed away from him. This was just a phase, but eventually I did play with Garfield again.

         Over time, my balance improved. The doctors had told my parents that if I were to ever walk again, they could not carry me. They said that if they let me get good and mad, I would make myself get up and walk. They both felt so bad as I screamed and cried for them. Sometimes when Mom and I were all alone, Mom would cheat and pick me up. To her, it was torture to watch me scream and cry. She couldn’t stand it at all.

         On Christmas morning that year, a miracle happened. My sister Riece and I both had gotten blue doll carriages from our grandparents, among with some other toys. That was when I started walking again. I held onto the doll carriage for support, got myself to stand up with determination, and I started walking again, very shakily and wobbly. My parents were so happy they cried. My walking improved with time. From there on, there was no stopping me.

         Sometimes, the doll carriage and I would crash and fall over because I had gone too fast. But I didn’t cry. Instead I just got up and started again, going faster. One day, Mom heard a lot of noise coming from somewhere; squealing, giggling, thumping. Mom ran into her and Dad’s room, and found Riece and me jumping on the bed. It was a big NO NO to jump on her bed, but that day she didn’t care. She was just happy to see me jumping and using my legs. She knew she should have scolded me, but instead she just took a picture. I had a great time jumping on the bed with Riece.

         My parents were "backed into a corner" with admission that I was not responding to sounds. My speech was diminishing quickly to the point where I didn't talk anymore. The audiologist in Sheridan had never tested anyone as young as I was as he didn’t have the proper equipment or the knowledge to do so. He just told my parents what to watch for and sent us home. It was a dead end. My parents went through the school district in Dayton. They had a sound booth there, but again they had never tested anyone my age, so it was another dead end.

         My mom remembers a particular scene from the movie Mr. Holland’s Opus, where the mother is stomping her foot and frustrated because she is unable to communicate with her deaf son. Mom had gone through the same thing hundreds of time with me before the movie ever came out. She used to sit me on the counter, open up all the cupboard doors, and picked up items after items, shelf after shelf until she figured out what I had wanted.

         I was Mom’s perfect child who used to talk and sing songs, but now was pointing and grunting to communicate. There were so many times when Mom didn’t think she could stand it one more day.

         One day, my parents took me to a specialist in Ft. Collins, Colorado. It was some help but yet another dead end. Finally, months after we began, someone told my parents to go to the University of Wyoming in Laramie. There, audiology students did testing as part of their training. They had a sound booth and toys; they could test babies! Mom had a deep love for Mr. E.J. McDonald and his audiology department.

         Mom and I sat in the sound booth together. Funny animals that made noise popped up around us. When I heard the noise, I turned to where the noise was coming from. Some of the sounds were very loud and high pitched my mom thought her head was going to explode! I barely had flinched. Then, Mom held me in her arms and they put electrodes all over my head. They were supposed to measure brain waves and sound in my ears. I slept as they measured brain waves. After the measuring, it was confirmed that I had a severe to profound hearing loss in both ears. I was deaf, more specifically severely bordering on profoundly hearing impaired. In my left ear, I reacted to sounds at 110 decibel, and in my right ear at about 70 decibel. Along with the loss, I could not hear high frequency sounds.

         They then discussed hearing aids. It turned out we would have to wait for the hearing aids to arrive from Switzerland and it would take several weeks. The hearing aids also had to be paid for first, and it cost at least $1,000. My parents still owed the hospital some money; how were they going to pay for my hearing aids? They tried child services. They could not help us since they did not meet the income requirements. Mom quit work. Then my grandparents stepped in to help out. The hearing aids were finally paid for.

         Mom and Dad had been told that the hearing aids might not be of much benefit for me due to my hearing loss. But they were willing to try anything to help me in any way. Once the hearing aids arrived, our new friends, Alice Roach and her deaf son Will, came with us for support. They showed my parents how to put the hearing aids on my ears and how to turn them on.

         Alice later told my parents about the Wyoming School for the Deaf in Casper and its outreach services. She also told them about the child development center. My mom was so happy Alice was around; she was of a lot of help!

         When the audiologists put my hearing aids on, they told my parents to let me wear them for a few hours at a time so I could get used to them. But, once I had them on, I wouldn’t let anyone take them off! We wasted months and I was going to make up for all that lost time. Of course, Mom waited for me to magically start talking. But it wasn’t that easy. I had to learn how to hear the different speech sounds and how to say the speech sounds all over again.

         I was enrolled into the child development center so I could go to speech therapy. JoLynn was my speech therapist. I rebelled; I didn’t want any of it! I went kicking and screaming, and even kicked my teachers in the stomach. I had seen too many strangers poking at me and I didn’t want any more. I was such a stubborn little girl.

         JoLynn worked with me on my speech everyday. She and my parents passed back and forth a notebook. They would write in it of how the day went, what words or speech sounds I worked on and so on. My parents also worked with me on my speech, trying to get me to talk again. For days, we played these speech games over and over. When I got bored and tired of playing the speech games with my parents, Riece would then play with me. She was my playmate, my sister, and she also had a different way of playing these games that made them more fun. Mom would just tell me to say a word and repeated it. With Riece, we played school. She was the teacher and I was the student. She would ask me to say a certain word, and she would repeat the word so I could say it, and even spelled it out and everything. It was a more fun way of learning how to talk again and learning of the different words. Riece was also probably the best teacher I ever had; she taught me more than anyone else ever did during that time. Everyone also talked non-stop. The TV was left on all day just so I could hear the sounds.

         Everyone advised my parents, “Do not teach her signs or she will never talk.” My parents signed up for a course through the John Tracy Clinic. They told my parents to cover up their mouths when they talked to me as it would force me to use my ears instead of lip-reading. My parents made a game out of everything; laundry, dishes, even bath time! Mom and Dad explained, spelled, put my hand on their throats when they talked, everything. Mom used to read books into the tape recorder so I could hear sounds constantly. They named everything; they wrote words on 3x5 note cards and taped them up everywhere. There were cards on the stove, sink, wall, doors, even OUTSIDE on the grass. There were cards on everything. We also would go for walks along the creek and quack at the ducks. They did anything to get me to imitate the sounds.

         Marge from the Wyoming School for the Deaf would come to Sheridan and visit every six weeks. She always made Mom feel better about things and always had new games for us to play. Will Roach became my deaf buddy; we were both rowdy. Mom and Dad were thrilled since I made vocal noise.

         That summer, we spent six weeks at the University of Wyoming in Laramie. I went to speech therapy and Mom took a session on how to cope with it all. My teacher taught me some signs but mostly trained me on how to listen and form words. That was where I met Wyatt Baldwin, another deaf child. That was one long summer and we were happy to go home. College was hard work!

         There was this one game that I just loved to play! I used to pull out my hearing aids, still turned on! The hearing aids would be squealing away like crazy, and I would hide them. Mom had heard stories of deaf children throwing their hearing aids into the toilet because they did not like them. Mom hoped I would never do that. I never did throw my hearing aids into the toilet but I sure loved to hide them as they were squealing away, just to drive my parents crazy! They would be in the couch cushions, outside under the tree, under the bed mattress, where ever I could hide them! Then my parents would have to search like crazy trying to find the source of where the horrible sounds were coming from. They would ask me where the hearing aids were, and I would reply by saying “I don’t know, I don’t know!” They knew I knew, but they also realized I wasn’t going to tell them where I had hidden my hearing aids.

         In 1990, Dad bought a video camera to use. He used to video tape Riece and me playing and doing things all the time. Christmases, birthdays, bike riding, being at Grandma’s house, our vacations, EVERYTHING! We have all of these memories on tapes so we could watch them whenever we want, either to remember what we were like back then, or just for laughs.

         Later, my parents decided to move. Dad left his job at the grocery store and went to work for Pamida, which was a big chain discount store. My parents thought they would transfer us to a bigger town where there would be more information and contacts for us. Instead, we ended up in Winner, South Dakota, a very tiny town. But my parents did find a wonderful preschool for me. One of the teachers at the preschool, Toni had a degree in special education, and had a habit of adopting mentally handicapped children. She took a class on deaf education just so she could work with me. She wanted to help me, and she did. I loved the preschool very much!

         I was given an old FM system through the school district. I had to wear a body receiver on my chest, but it did help me to hear a bit better. Toni’s husband used to clip the microphone onto his guitar and sing, which was something I really enjoyed. I started using more words but I still wasn’t talking.

         Throughout the year, Mom worked at a flower shop there in Winner. At the flower shop, there was this person, Dorsey. She was a very nice lady and she and Mom became friends. Dorsey had a few birds at her house, and there was this particular one that I really liked. The bird’s name was Pretty Baby, and I loved holding Pretty Baby. She would sit on my shoulder and give me kisses. It was a pretty neat bird!

         The house we lived in was small but nice. We had a shed in the backyard, where Riece and I would play in often. We played house inside the shed with our dolls and toys. We still had that toy kitchen set that we had gotten for Christmas in 1987, which we had put into the shed. Also, in our bedroom we had a bunk bed. Mom turned the bunk bed into a house, sort of. She put up sheets around the bottom bunk, which was my little home. In another part of the bedroom, Mom put up more sheets, closing off a small area for Riece.

         Living in Winner was a good experience for everyone. But when it was time to go to kindergarten, I had to pass a word test. The person said a word and I had to point to a picture of the word, but she did not use signs because she thought the signs would give me the answer. Mom could not make her understand, so my parents quit their jobs and we all moved again.

         We returned to Wyoming, this time moving to Casper. We moved into an apartment, and again Riece and I continued sharing a bedroom as we had most of the time. I was enrolled at the Wyoming School for the Deaf, while Riece was enroled at the adjoining Pineview Elementary School.

MORE TO COME!

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