The Mayer's Story
The Mayer Family’s Journey
This is a story of how two parents, facing impossible odds, succeed in finding opportunities for their two children. What makes it more interesting is that these parents are deaf.
Let me give you a little background of Andrew, my husband and myself. We both are profoundly deaf. Andrew and I were born and raised on opposite sides of Missouri; St. Louis and Kansas City. Andrew became profoundly deaf for unknown reasons. He has a younger hearing brother. There is no history of deafness in his family, except his mother became hard of hearing in her elderly years. His parents did not know he was deaf until he was two and half years old. He attended a day program at Central Institute for the Deaf and then entered a mainstreamed program in the St. Louis County public school system with both hearing and deaf children. At age 12, Andrew entered the sixth grade in the University City School district and graduated from high school six years later.
My father did not know he was hard of hearing until his early fifties. Both my brothers and I were born hearing. My oldest brother, seven, fell off his horse and his foot caught in the stirrups. He progressively lost most of his hearing and became profoundly deaf as an adult. My second brother, twenty-five, became hard of hearing in one ear from a freak firework accident. As the youngest child, 13 months old, I was ill with high fever and strep throat. Before I became profoundly deaf, the two words I said were “bye-bye” and “momma.” At 18 months old, I went to an oral preschool and at five, attended an oral resource room in a public school and at nine was mainstreamed at a private hearing girls’ school.
We both completed our high school degrees without any specialized support services such as interpreters or note takers. The original law (known as the Education for all Handicapped Children Act, or PL 94-142) passed in 1975, and was implemented in 1977. We learned to talk in a much different generation than our children were taught before federal legislation was enacted.
Andrew and I both grew up to be fluent speakers and excellent lip readers. We wear hearing aids and did not learn sign language until college. We both have our post-graduate degrees from different colleges and universities. We are adaptable and very comfortable in both deaf and hearing worlds.
Andrew does publications design and web development. This year, he has an adjunct faculty position at Lindenwood University, teaching hearing students. I work as a deafness consultant and do provide coaching, presentations, workshops and in-service training on local and national levels.
Now, we will talk about our two amazing children. We met in New York and got married. Our two children, Elena and Jacob were born in Rochester, New York. The rest is history.
A few days after Elena was born, we were not sure if she was hearing or deaf. We felt strongly that our children should learn all the options to communicate. We provided American Sign Language, auditory and speech skills since the day she was born. We learned that there were studies that showed children who are either deaf or hearing learn and acquire language much earlier with sign language than spoken language.
While my loving mother stayed with us for the first few weeks to help with the trial and errors of taking care of a baby, she suspected some hearing loss and strongly advised us to get Elena’s hearing tested. We tried clapping hands or banging the metal pots next to her ear. There was no response. She was highly visual. Even her pediatrician did not see that she had any hearing loss. She used a little bell and rang it in front of her eyes. She advised us to get an Audiology Brain Response (ABR) right away after we expressed some concerns and insisted that she be tested.
New York State had passed the law for Hearing Prescreening Tests in 1994 just after Elena was 6 weeks. Recently, Missouri has passed this law..
The night before Elena had her ABR testing, Andrew and I had a long discussion. Supposed if our child was deaf, what would we do? Andrew and I were clueless on what to do for our daughter. We did not know what the best way to go was. We both felt strongly that our children should have all the options and one of them is to learn to talk. When I was 8 months pregnant with her, I just assumed that Elena would be hearing. I was watching a Broadway play, ”Cats” with Andrew and his mother in New York City where the play had a lot of lively vibrating and beating music. Elena just moved, made many somersaults and kicked very hard.
By that time, I knew there was 50-50 chance that I would give birth to children with hearing loss. There is a lot of genetic deafness in my family. It may have skipped some generations. Following the three ABR tests, Elena was diagnosed with profound hearing in both ears.
Andrew and I were strong advocates of our children’s needs, are educators and we have both worked with deaf and hard of hearing students in post-secondary education. I received a deaf education degree and a graduate degree in deafness rehabilitation/counseling, it does not mean that I would be the expert to work with deaf babies and have all the answers. We were helpless and confused just like any other parent. We wanted to find the best schools with the best training for our children. We were not sure if sign language was the way to go in the educational setting. Elena would have that at home. We wanted Elena to learn to talk. Both of us like to talk and be able to function independently in the hearing world and we wanted that capability for Elena.
New York State provided early childhood services at the age of 5 weeks in the home until she was 18 months old. A speech/audiology therapist came to our home three times a week. She was fitted with two hearing aids at the age of five months to enable her to use whatever residual hearing she had to work with her lip-reading skills. Her first spoken word at five months was “up”. She learned to talk in combination with sound, visual aids and sign language. By the age of two, she was already talking in full sentences, a great lip reader and a chatterbox. She was eager to learn and explore the world. At 18 months, Elena attended the preschool at Rochester School for the Deaf in the mornings and attended an oral-auditorial program at a center in the afternoons with other deaf children.
As Elena turned two, her little brother, Jacob, was born. Within the next 24 hours, an ABR testing was provided to him at the hospital. He failed the test. We were advised to take the test again at 1 week old. Immediately, we knew he had some hearing loss. He was tested again at 5 weeks. There was some low and high frequencies hearing in his left ear and was profoundly deaf in the right ear.
He had the same services that Elena had except the therapist from the center would come in twice a week. She would sing songs into Jacob’s left ear for an hour at a time to take advantage of whatever residual hearing he had and develop some auditory reception skills. He was fitted with hearing aids at 5 weeks. He was able to use his hearing aids effectively and responded to sound around him. The state of New York changed their bureaucrat system and insisted that Jacob go to Rochester School for the Deaf. There were no funds assigned for the center. We fought and advocated for Jacob to stay at the center and won. He stayed there until he was 17 months old. His first spoken word at 6 months was “more” because he loved to eat.
Elena was bored at the Rochester school for the Deaf after one year there. We transferred her to the center full time until she was almost four. She needed to be stimulated and she was advanced in her language expression. When she turned three, we had to look for other educational alternatives. We did not want her put in the public school system and be mainstreamed with other hearing children until she had a strong foundation of speech, language and academic skills even though she had sufficient skills. Nothing was available for her and was best to look elsewhere.
In our search for the best solution for our children, we had a wonderful discussion with our friends - a couple who were deaf and Jewish like us. They too had two deaf children. They were Alan and Vicki Hurwitz who attended Central Institute for the Deaf in St. Louis where Andrew also attended. They live in Rochester and their children, Bernard and Stephanie, now grown up. Alan and Vicki are proud grandparents as Bernard and his wife, Stacy, have two children.
Alan and Vicki described their experiences in finding the best opportunities for their deaf children. They advised and encouraged us to keep striving no matter what the obstacles are and always go for the best. The key is to inform providers of what are needed by our children.
Andrew and I felt strongly that St. Louis was the best choice, as we wanted to be closer to both families and have the best education opportunities for our two deaf children. In the spring of 1997, we visited all the three schools. We selected the Moog School for the Deaf later the (Moog Center for Deaf Education), because it was a brand new day school with an innovative and positive environment. We were impressed with their strong emphasis on academics. Elena visited one of the classrooms. The teacher fell in love with her and was impressed with her ability to interact and follow instructions very quickly. Andrew got a teaching job at a local college in St. Louis and Elena was enrolled at Moog School in the fall. She fit well and was very happy.
During the summer, Missouri’s First Steps send someone to home to work with Jacob twice a week. That fall, Jacob, 18 months, was enrolled in the early childhood program at Moog School. He was also advised to interact with other hearing children so he attended the early childhood program at the Jewish Community Center every other day.
Jacob progressively lost most of his hearing over the period of one year. He showed some unhappiness, not responding to learning more speech sounds and auditorial language even though he understood everything in sign language or visual aids. We were advised to check Jacob to see if he had any speech impairment. One morning, Jacob gestured to us, saying, “My ears are broken. My hearing aids don’t work. I want to hear more.”
Stunned, we regrouped and sought information on the best way to meet Jacob’s needs. When The Moog School recommended a cochlear implant, we did not agree right away for it was a one-sided advice. We talked to friends around the country who either had cochlear implants or their children had them.
Thus, we made an informed decision to fit Jacob with a cochlear implant. Our families and friends were supportive. After all, we wanted Jacob to have every opportunity to hear and talk. We learned that cochlear implants is another tool to hear better.
Elena, five and half, was ready to go into the mainstream public school with other hearing children. She watched Jacob recovering from the surgery that night and approached us. He was up and walking around after 8 hours. She was confident and wanted a cochlear implant for herself. She felt it would help her hear and do better in the mainstream environment with other hearing children. We were not ready to deal with surgery once again. We could not deny them their wishes. The school decided to keep her for another year to train her to use her auditory skills differently. She was visual child.
After three weeks of recovering from the surgery, Jacob was fitted with a processor. The light and smile on his face came up; I had tears in my eyes. He was able to hear again. He remembered many sounds that he had before he lost his hearing. Within two weeks, he was responding to sound very quickly and picking up auditorial language once again.
Elena, five and half, had cochlear implant surgery three months later. Her processor was turned on three weeks later. At first, she hated the high frequency sounds. She was tolerated the lower ones. It took her over six months before she could be comfortable with high sounds and be able to use her processor more effectively.
One year later, she attended Moog School in the mornings and in the afternoons in the elementary public school in our home school district. In the spring, she graduated at seven from Moog School and in the fall, started first grade in her neighborhood elementary school. She had some services from the Special School District. The sessions gradually decreased from 90 minutes to 15 minutes a week to almost null. Elena also was tested for her gifted abilities and was placed in the IDEA Lab for some of her classes. She won spelling bees, language awards and has accomplished great things because of her ability to function in the hearing world and be like any other children. Elena is now an honor roll student in sixth grade in the middle school and doing well.
Jacob was a different story. He liked his classes at Moog and went through the same transition to the elementary school as his sister. He attended half days there and after graduation from Moog at age seven, he did well in the second grade the following academic year.
During the fall in the third grade, Jacob started having emotional issues and was refused to go to school. His academic performance was fine but he did not want anything to do with school. After numerous meetings with the teacher, principal, counselor, itinerant and Moog staff and failed attempts to reason with Jacob, we decided to pull Jacob out of school and home schooled him.
During the year, we visited several private schools, even considering a move to another state with a public deaf school. We were fortunate that our home school district had a specialist who worked with children like Jacob. During the summer, she coached Jacob to recognize his issues and deal with them. That fall, Jacob was placed in the St. Joseph’s Institute for the Deaf. We learned that he just was not ready to go into the hearing school so early in his life. This specialist really made the difference in turning around Jacob’s life.
Now, Jacob is happier, confident, motivated and excelling in his work as well as having friends. Now at age ten, Jacob will attend one more year at St. Joseph’s and looks forward to attending a private hearing school with smaller classes.
We are blessed with two beautiful and confident children who are able to talk and are academic oriented because of the Moog School. They will be able to conquer any obstacles they have ahead of them.
Buoyed by these loving and thoughtful friends, we headed into the future with a determined and passionate resolve for our children, Elena and Jacob.
Oh, the path was long and full of peaks and valleys. Battles were fought and won. We always are looking for a better way and if a door closes, we find another door and open it.
We are not finished with our task. There is middle school, high school and college ahead as well as working with them during their growing years and beyond.