As a child, my understanding of speech was better and my vision was clearer. My diagnosis was optic atrophy at age 5 and my vision gradually degenerated over the years. For unknown reasons, nerve damage caused hearing loss and during my teens, my hearing grew worse and worse until by the time I was ready for college, I was profoundly deaf. I chose to attend Gallaudet University because my high school teachers and my parents felt I would receive better services as a deaf and blind student. I feel it was a very good decision; when I entered Gallaudet, it was like entering a new and exhilarating world. Before attending Gallaudet, while I struggled to cope with hearing loss combined with severely low vision, my world grew smaller and smaller, not being able to communicate efficiently with others. At Gallaudet, I suddenly found I could communicate with almost anybody I met on campus using sign language. Thus, my self-confidence and independence grew as I proceeded to get a college education.
It wasn't an easy route to follow. I didn't know Braille at the time and depended on using a CCTV (closed captioned television) electronic aid which magnified text, enabling me to read all my college books. I also relied on the assistance of a class aid who interpreted all my teachers' lectures and class discussions because I was unable to see people's signing unless they signed right in front of my face. It was slow going and often frustrating, trying to keep involved socially and keeping up with my coursework but when I was 13 years old, my vision specialist teacher who had worked with me from 5th grade until I graduated from high school, wrote a note for me saying, "Anything worthwhile seldom comes easy." The phrase stuck in my mind and I tried to follow this philosophy. In 1989 after 7 years of persistence, I graduated with a Bachelor's of Arts degree in psychology.
With the B.A. in hand and having developed good communication skills with deaf and deaf-blind people using sign language and ASL (American Sign Language), I was ready to face the world. But I wasn't exactly ready; I knew I wanted a professional job working with deaf-blind people and the way to get there was to earn a master's degree. I applied for admission into Gallaudet's graduate school and was accepted into the vocational rehabilitation counselling program. While I thoroughly enjoyed graduate school experience, I got to work with my class mates one-on-one more often and there were a lot more hands-on activities, it became obvious to me that I wasn't prepared for graduate school. I needed to learn Braille and how to use Braille technology; my vision had worsened a lot since starting college. In addition, I needed a break from school and needed to gain experience in the working world. After completing one and a half years and earning 15 credit hours in the master's program, I left Gallaudet and found a job in Baltimore, Maryland.
The job was with a new program for adults who were visually and hearing impaired and mentally disabled. My job was assisting the clients with independent living and work related skills. Most of the other staff were deaf, communicating via ASL. By then, I was skilled using tactile signing, putting my hand on the back of the signer's hand to follow movements by touch, and I made friends with co-workers.
I felt grown up and independent working full-time, living in my own apartment, using the subway train and bus to travel to and from work. I didn't have any serious problems living on my own. There was a supermarket up the road to which I could walk or ride a bus. But I needed a taxi ride back to the apartment when I had more groceries than I could carry. I would leave a sign I made out of cardboard and wrote my address in big black numbers, on my apartment door to help the driver find my place. I used a white cane and upon moving to Baltimore, an Orientation and Mobility (O and M) teacher who worked with blind people, showing them how to travel in the city, taught me the route to my work place using the subway and bus. Thus, I was independent and knew my way to work as well as to a nearby shopping mall.
One day as I stood on the subway station platform holding my white cane, waiting for my train, the opposite train pulled in. As I stood watching passengers hurrying to board, knowing my train would arrive soon on the other side, a woman ran up to me and started pulling my arm. I handed her my notebook and black marker I used for communicating with people in the public, telling her I couldn't hear and would she please write in large print? She frantically scribbled something, but I couldn't read the note. She then gave me back the pen and pad, grabbed my arm again and started pulling me towards the train. I refused to budge, gesturing towards the opposite tracks, clearly indicating I was waiting for the other train. Finally, she let go, dashed into the train before the doors closed. I watched the train pull away, sadly reflecting that some people who wanted to help, just didn't understand how to approach disabled people. As a deaf-blind traveller, it was my duty to help educate the general public how to assist disabled persons in a humane way.
After I established my new life for a few months, Bill was offered a position in the same program and moved to Baltimore to join me. He had worked at the Helen Keller National Centre in New York where I met him while doing a summer internship there three years before. I was thrilled when he got the job working beside me and we got to know each other on a daily basis. We had been dating since we met although I was in college and he was working and living in New York and then Cleveland, Ohio. Bill being hearing and sighted, was skilled in sign language and communication techniques with deaf-blind people. He had a wonderful attitude towards disabled people and made me feel like a normal person who was capable of doing things. We shared a lot and were very comfortable with each other. After nearly six months together in Baltimore, we married in May 1992, several weeks before my 28th birthday.
After our first year of marriage living in Maryland, Bill and I moved to Little Rock, Arkansas. We wanted to live closer to my family and parents, Ron and Judy Cummings, who lived in Poplar Bluff, Missouri, 176 miles north of Little Rock. I wanted to go back to school and entered the deaf education program at the University of Arkansas at Little Rock with the goal of becoming a teacher for deaf-blind students. I never dreamed I would have a deaf-blind child of my own one day. My vision and hearing loss were caused by nerve damage and no one else in my family nor Bill's had a similar disability.
I was pregnant with our first child when I entered UALR. In spite of my growing belly, I enjoyed the teacher training experience. I worked with a deaf-blind 12-year-old student and her teacher at the Arkansas School for the Deaf; observed two energetic four-year-olds in the pre-school program. But when my son, Joe was born in June 1994, my world changed once again. School became less important and motherhood became the ultimate. As a deaf-blind person, I wanted to be the best mom within my abilities.
I decided that establishing good communication with my child was an important aspect of being a deaf-blind mom. Bill was in full agreement and we would set Joe on the kitchen table in his infant carrier, reciting together in sign language, "The three Bears". I could see Joe's tiny fists and feet wave excitedly in the air as he watched us signing children's stories. I would encourage Joe to hold my fingers while I signed to him, trying to establish a tactile signing relationship. But he was almost two years old when he finally understood that he needed to sign into my hands. We were sitting at the table and I had a bag of cookies. I refused to give him one until he made the sign for "cookie" in my hand. I quickly rewarded him with a cookie and he got three or four each time he made the sign in my hand. Today at 16, Joe is an expert finger speller and can effectively communicate with me and his younger deaf-blind brother, Ben.
When Joe was two and a half, I decided to explore a cochlear implant. It was 1996 and we were living in Poplar Bluff by then. My cousin, who was studying audiology, told me that people using cochlear implants were able to understand sound so well they didn't need good vision. I made an appointment with the St. Louis cochlear implant program and after being evaluated, I decided to go ahead. I am glad I have a cochlear implant. After months of practice I learned to use the new sound and was eventually able to understand many environmental sounds. I never regained the ability of understanding speech, though, but I could hear people's voices very clearly, the sound of laughter, birds singing, and many more. Being able to hear my children's voices is especially wonderful, even when they get noisy and I get a headache.
That fall I went to Leader Dogs School for the Blind (LDSB) where I met Milo, a large yellow Labrador retriever. At LDSB I learned how to care for and work with a dog guide. Having Milo as my companion and guide was like stepping into another new and wonderful world of independence. With Milo, I could walk briskly and feel secure. Milo was a big help as a deaf-blind mom, too. With Milo's guiding help, it was wonderful following my children while they rode tricycles or bikes and the whole family enjoyed going out for walks together.
Our second son, Ben, was born in February 1999. He was a perfectly healthy little boy and Bill and I were looking forward to raising two sons. Joe was four and a half years old when Ben was born and was fascinated in his new brother. But when Ben was 5 months old, he was diagnosed with Langerhans Cell Histiocytosis (LCH), a rare childhood disease and in some cases, fatal. It was a long, scary road we followed as Ben received treatment at the children's hospital in St. Louis which involved making the 150 mile trip almost weekly for chemotherapy and doctor check-ups. Through it all, Ben was a happy little boy, in spite of the terrible rash that affected his scalp and diaper area, a symptom of LCH. Bill and I knew that we had to do everything possible to help Ben. When he was a year old, his condition seemed stable enough for me to feel comfortable leaving my family for two months to study Braille and learn new technology skills at a program in Kansas City. My vision had deteriorated to a point where I could no longer use a CCTV.
Bill's mom, Marie Reid, who lived in Cleveland, Ohio, made a special trip to stay at our home in Poplar Bluff to help Bill with the boys while I was gone. I was successful at the program, learning Braille, making a change from magnification to Braille technology. Upon returning home, I began looking for a job and found employment as a deaf-blind specialist in a new project in Mississippi. The job was in Tupelo and we moved to northern Mississippi, settling into a new life. We transferred Ben's treatment to St. Judes Children's hospital located in Memphis, 94 miles west of Tupelo. I went to work and Bill stayed home with the boys, which worked well. When Ben had to go to St. Judes every three weeks for chemotherapy, Bill was able to drive him. The treatment was successful, the rash had disappeared and there were no traces of LCH in Ben's blood tests. But when he was almost 3 years old, he was diagnosed with optic atrophy, the same eye disease I suffered from and an audiologist detected signs of inner ear hearing loss.
Shocked at the news that our little son would grow up legally blind and perhaps become deaf, Bill and I had to rethink our future. We knew we wanted Ben to have a good life and as a deaf-blind child, he needed quality services. We chose to move to Pittsburgh, Pennsylvania because I knew there were good services for deaf-blind people and I could function independently as a stay-home mom. In addition, Cleveland, Ohio, where Marie Reid and several of Bill's siblings lived, was a two hour's drive from Pittsburgh and living near family was important to us.
With regret, I left my job opportunity and new friends and we re-located to Pittsburgh. We lived on a quiet street near Squirrel Hill and enrolled Joe into a near-by Catholic school. Ben received excellent early intervention services through the Pittsburgh public school, beginning Braille, using a white cane and tactile signing. The Pennsylvania services for the blind generously purchased a wonderful computer system and Braille display for me to use at home. I was able to communicate with Joe's and Ben's teachers and other contacts using e-mail. Ben's Braille teacher provided us with several print/Braille books which I read to the boys while Ben touched the tactile pictures. I made friends in the deaf and deaf-blind community and our family attended social events. Besides the social benefits of a deaf community, Pittsburgh offered a wonderful interpreting service and I was able to take Ben to doctor appointments knowing an interpreter would meet me at the hospital to assist with communication. I also found people who were willing to help me as volunteer SSPs (support Service Providers), persons whose role is to assist a deaf-blind person in any way, such as shopping, going to the bank, etc. Thus, I was able to function quite independently while Bill worked.
Perhaps Bill and I were a bit crazy; after all, we had enough on our plate with a deaf-blind son and a deaf-blind mom, but love is a mysterious thing. In October 2003, Tim was born and our family was complete. Having two school-aged children and a baby on my hands was too much for me to handle alone. Bill was working and busy with culinary arts school. We realized we needed more help with the children, plus the high cost of living in the city was a struggle for us. We decided for the family's best interest, it would be better to move back to Poplar Bluff. After Joe and Ben were out of school in June, my mom flew out to Pittsburgh to escort them back to her home while Bill finished his externship for his culinary arts degree and in the late summer of 2004, we packed up our apartment, said good-bye to Pittsburgh, and drove to Missouri.
The move was a good decision in many ways. Poplar Bluff, a rural town in south-eastern Missouri, has been my hometown since I was 10 years old. My extended family live there and the boys are thriving growing up among their cousins. Ben is receiving Braille and sign language services at public school and reads Braille faster than me!
While both Bill and I are deeply satisfied knowing our children are happy, we have made personal sacrifices. Bill has given up his career satisfaction as a professional cook, needing to help look after the children and house. I have given up the benefits of city life such as interpreting and SSP services, not to mention the social benefits of a deaf community. But the children's well-being comes first, and I have found ways to fulfil my needs by getting involved with on-line groups for deaf-blind people, including writers and poets. I have taken a great interest in writing, especially children's stories and hope to establish a career as a writer. While I work on my computer, Bill keeps busy engaging the boys in various projects. They have built a screened-in tree house in the backyard where Ben and Tim like to sleep during warm summer nights.
“It's almost 5 o'clock," Bill signed into my hand, rousing me from my thoughts. Time to prepare for our homeward journey the next day to Poplar Bluff, Missouri.
Christy and Family
