It was in 1970, at the age of
eighteen, in my hometown, Lincoln, Nebraska, when I was to receive my shocking
experience of my life. My future brother-in-law, Mike, was visiting my sister,
Kathy, at Christmas time. He also decided to write a thesis about my life for
his graduate work. Mike was asking my mom and me some questions about my life.
I was curious to know what he said in his thesis about me. I decided to sneak
into his guest bedroom, quietly, looking for the thesis. I found it and I
began to read the first sentence of his thesis on his bed. It said, “I would
like to write about my future sister-in-law, who has cerebral palsy and is
hard-of-hearing”. I read it
again and again, because I couldn’t believe what I was reading.
I knew I was hard-of-hearing since I was a young girl, because of my
hearing aids and not being able to hear as well as others.
When I saw the word “cerebral palsy”, I was totally shocked. I didn’t
know I had C.P. (cerebral palsy for short), because I couldn’t see myself
and I could walk. I thought I was
just “normal” and deaf. I was so full of anger and tears, when I ran to
the kitchen and screamed at my mom asking her, “Why didn’t you tell me I
have cerebral palsy?” She responded that she didn’t think it was necessary
because mine was very mild. I ran to my bedroom and slammed the door, crying
on my bed. As I was beginning to
look back in the past of my whole life, everything seemed to piece together in
making sense of why kids made fun of me. I didn’t know it then. That is why
I called the year of awareness. Here is the story of my life.
My name is Janet Marie Kuethe.
I was born on March 7, 1952 in Omaha, Nebraska.
I was a premature baby, because of RH factor in my blood. A few days
later, my skin became yellow because of yellow jaundice and I almost died. The
doctors decided to give me a blood transfusion and I fought to live. My
brother, John, was born few years before I was born. He died because there was
no blood transfusion being done at that time of year. I was kept in an
incubator for a month in the hospital. The doctor told my parents I had C.P.
My cerebral Palsy was spastic and mild.
When I finally arrived home, my
parents, Fred and Jane Kuethe, my brother, Rick, two sisters, Jo Ann and
Kathy welcomed me to their home. My parents were happy I was alive. My brother
and sisters were too little to understand what was going on in my life. They
treated me as if I was fragile. I was the youngest of all of my brother and
sisters. They all gave me the love and encouragement that I needed. My
physical development was delayed like crawling, sitting up, standing and
walking. My dad built a wooden walker for me to practice walking with. I
finally was able to walk at the age of two. Because I was not talking much, my
parents took me to a speech therapist at the age of three.
The doctor thought I might be mentally retarded. My mom didn’t
believe him. She saw my eyes sparkling as if I had some intelligence in me.
Like everyone else, I played
with my family, friends and neighbors. We as a family went to Trinity
Cathedral (Episcopalian church). I
played in my swing set, rode my tricycle, and played with my dolls. The first
time I noticed about myself being different was when my neighboring friends
whispered something into my ears and I couldn’t make out of what she was
saying to me to pass on to the other friends.
They also whispered to the other friends and laughed at me.
I didn’t understand why they were doing that at that time. Another
time, when I was about five or six years old, I went over to my friend’s
home. We were playing house outside. They wanted me to bend over my friend’s
lap. One of them pulled off my underpants and poured water on my butt. I ran
home crying. My parents, brother and sisters were angry with them.
I was not doing well during my
preschool and first year of kindergarten. They decided to have me repeat my
kindergarten year the second time around. I still wasn’t learning as much as
the other kids did. I had my
hearing tested at the age of seven. Everyone was shocked that I had some
hearing loss (about 65 DB/HL). I had mild to severe bilateral sensori-neural
hearing loss since birth. I was fitted with body hearing aids. I hated wearing
hearing aids because I wanted to be like other “hearing” people. I didn’t
see hearing aids on other people. I thought they wanted me to look different
for some reasons.
My parents decided to take me
out of public school and put me in a handicapped school, Dr. J. P. Lord School. During
my first few days at the handicapped school, I was horrified to see all the
different kinds of handicapped children. My vocabulary was very limited.
They couldn’t explain anything to me. I thought they were trying to
make me go crazy. I screamed and kicked at the teachers. I wanted to go home.
It took me a while to get used to those kinds of handicapped children.
I also remembered many people had to hold me down while I was having shots at
the doctor’s office and getting fillings for my teeth at the dentist’s
office. I didn’t know what they were trying to do. I thought they were
trying to hurt me.
I made new friends named Paula
and Ann at Dr. J. P. Lord School. Paula
used to walk but her muscle became deteriorated from a rare ailment. I
remember pushing her in a wheel chair from our classes to the cafeteria or
anywhere. I remember eating
with her and Ann. Ann had C.P. and deafness.
We went to Easter Seals day camp together.
We had fun doing crafts, playing cards, and riding on ponies. Also, I
remember spending the night at Paula and Ann’s home as well as they did at
Academically, I didn’t learn
much at Dr. J. P. Lord School, because I missed a lot of words that were
being said in the classroom. When I tried to lip-read, some of the lip
movements of the different letters looked alike. My hearing aid only helped me
hear it louder. It didn’t help
me to understand what the person was saying. Sometimes they put big earphones
with an amplifier on me. That didn’t help me either.
I learned only something that was visual such as addition and
subtraction by using the counting beads or the blackboard. They moved me up
one grade after another without checking out to see if I understood the
classroom materials or not. In speech therapy, the therapist showed me some
mouth exercises. Also, she would correct my pronunciations, when I read books
like “Dick and Jane” to her. I could read word for word, but I didn’t
get the concept of what the story was about. I took some physical and
occupational therapy for a short time but I didn’t need much training as
the others did. On Fridays we went swimming, which was good therapy for us.
I loved the Christmas plays at
Dr. J. P. Lord School. When I was eight years old, I was Crystal, the
Snowflake Queen, tiptoeing around the stage. They showed me what to do, which
I could follow. At the end of the play, we sang, “We wish you a Merry
I remembered my dad visited me
and waved at me outside of my classrooms many times.
I was at
Dr. J. P. Lord School for four years. I still was not learning or talking much. My vocabulary
was very limited. My speech
was sloppy. I drooled sometimes.
I remember seeing my brother
and sisters and their friends riding a two-wheel bike. I wanted to be like them.
I was on a tricycle and my two-wheel bike with training wheels for a
long time. I practiced and practiced on my bike without the training wheels.
I finally was able to ride the bike without the training wheels at the
age of nine.
My parents still wondered
and worried that I might be retarded or autistic. No one could tell my parents what was
really wrong with me. They took me to several tests at different places year
after year. One place was in St. Louis, when I was eleven years old. They met
a speech therapist, Mrs. Thomas (not her real name). They discussed about me
for a long time. Mrs. Thomas offered my parents for me to stay with her and
her family for the whole summer at a farm near St. Louis. It would be my first
time away from home without my family. My parents accepted the offer.
At the farm in the beginning of
the summer, some students and I worked on our speech exercises with Mrs.
Thomas in the mornings. The speech exercises were consisted of AE-EE, IE-EE,
OE-EE, and OO-EE, - (20 times
each) - mouth stretching. Also, with each letters of the alphabet combined
with those sounds.
example: B-AE, B-AE, B-AE
B-EE, B-EE, B-EE
B-IE, B-IE, B-IE
B-OE, B-OE, B-OE
B-OO, B-OO, B-OO
- in and out repeatedly
- side to side
– curl up and curl under
I practiced on my writing skills of what I did daily. I wrote letters to my
family and friends. The therapist put a book on my head for me to balance
while I was doing speech exercises and walking. The book fell many times at
the beginning. In the afternoons, we would all go swimming in the Mississippi
River and did other activities.
The farm had no electricity. We had to go up the stairs carrying the candles
or lanterns to our bedrooms. We
washed ourselves in cold water in a huge bathtub in the living room. We
brushed our teeth outside with a cup of water. It was quite an experience to
live like the old days.
Ann, from the Dr. Lord School was there, too. She wasn’t doing well with her
speech exercises. Mrs. Thomas was very strict and mean. When Ann or Mrs.
Thomas’ children didn’t follow her instructions, Mrs. Thomas would punish
them by spanking them on her lap. I had seen Mrs. Thomas spanking Ann many
times. I felt sad for Ann. Ann tried so hard to do anything for Mrs. Thomas. I
was never spanked because I did exactly what Mrs. Thomas asked me to do. I was
very scared of her. I missed my family terribly, even though I got a lot of mail
from them. My parents gave me lots of love. I was thinking that if I did all
those exercises, maybe I could go home sooner.
I did those exercises daily with her. I hated those exercises and hated
for the way Mrs. Thomas treated Ann. I didn’t know what was the purpose of
those speech exercises. Also, I
didn’t know enough vocabulary to express myself. I thought Mrs. Thomas was
trying to make me become a clown because of all those exaggerating mouth
My speech showed improvement over the summer. By the end of the summer, I
could walk better without the book falling from my head. My parents finally
came and I was so thrilled to see them. They were so amazed at my speech and
my walking with the book on my head. Mrs.
Thomas and my parents had a long talk about what to do with me when I arrived
home. She told them to continue on those speech exercises. She wanted me out
of the handicapped school. Mrs. Thomas said that I was not handicapped. She
suggested a regular school with a small group of students in each classroom
for me to sit at the front row to lip-read the teachers better. She told my parents to work with me and to
take me out to different activities.
When I got home, my parents started looking for a school for me. First, they
tried the Episcopalian school. I took the entrance exams and I failed
terribly. Ann’s parents suggested that they try the Catholic school,
Duchesne Academy of the Sacred Heart. The nuns accepted me with an open heart
and without the entrance exams. The nuns and my parents decided to put me in
fourth grade again because the classes were much harder than the handicapped
school. This school was only for girls. It was very different from the schools
I had gone to. We had to wear
summer and winter uniforms. In addition to the regular classes, we had to take
French, Religion, and Chancery (calligraphy). They excused me from Religion
class because I was not Catholic. I was an Episcopalian.
I didn’t have to take French, because I couldn’t understand the
tapes being recorded in French. The first thing I noticed was the girls had to
curtsy to the nuns and the teachers while opening the doors for them. There
were Masses on Fridays. On special occasions, the girls and I wore white
uniform with white veil and gloves at Masses. We would line up in the middle
of the aisle and walked slowly to the front of the chapel. On Mondays at the
auditorium, the Mother Superior gave out medals to those students who did
their best in each class the week before. She also gave out cards in French
for our behavior.
There was no professional interpreter or note taker. There were also no
captions on television. I remembered sitting in the classrooms whether at the
front or the back row trying to lip-read the teachers with or without hearing
aids. It was very difficult to understand or lip-read the teachers whether she
talked slow or not. I couldn’t make out of what the teachers were saying for
the next nine years. Maybe, I would get the words like “the” or “and” in each classes. It was like a guessing game. I
would be embarrassed if I stopped the teacher to ask her what was being said
on every single sentence. As you can see, I missed a lot of what was
going on in the classrooms. I missed the basic language.
It was like sitting on a chair with a huge brick wall in front of me.
I had a lot of homework. My mom had to help me a lot
with it. She had to explain each subject to me. I was overwhelmed because the
courses were so hard for me. My mom and I worked together long hours on my
homework. Sometimes, we didn’t finish it until very late at night. Other
times, my mother would write the homework and I would copy her writings.
Sometimes I did the homework and she would correct it. If I didn’t
understand what my mother was trying to teach me, my dad would pitch in trying
to explain it to me. If I didn’t understand the homework assignments, my
mother would call one of my classmates and ask for the assignments or
notes. Math was easier because I was able to follow the teacher’s writing on
the blackboard except for those story problems. In PE, I was always scared of
any ball flying over my head like basketball, baseball or volleyball. I was
afraid that I would not catch the ball in time before reaching my face. My
reactions to do things were slow. I
didn’t know I had CP at that time. My handwriting was very sloppy. I couldn’t
hold still to write with a pencil or pen. When I practiced and practiced
writing with my calligraphy pen over the letters of the practice sheets, my
handwriting improved. We had a lot of spelling bees, which helped my spelling
a great deal. My mother would drill on those spelling words to me. One of the
classes that helped my English language was grammar and using diagrams in
sentence structures. My reading classes were always hard for me.
For the first time, I was able to understand what the story was about. I realized that everything had a meaning for each word in a
sentence. I could never catch up the same level of reading as the other kids
mastered. It took me long hours of reading the books. Sometimes I didn’t
finished reading for homework. My mother had to explain to me of what the
readings were about, so I could do some homework or study for the tests.
Sometimes in the classroom, I would read aloud or silently without
understanding what the story was about. Academically,
it was always hard to catch up the same level with the other students. There
was no time for other things except to play with my friends in the
neighborhood when I finished with my homework.
While the teachers were not around, the classmates would make fun of me. The
teasing had gotten worse when I was in eighth grade. The kids would try to steal
my books, supplies, or purse from me. They laughed at me, imitated me the way
I walk, and pulled my hair, etc… I couldn’t understand why they were doing
this to me. I felt miserable and lonely. I didn’t have any friends to play
with at recess outside during my eighth grade. I would go home crying many
times. I didn’t know whether my parents talked with the teachers or not. The
teasing stopped near the end of eighth grade. During public speaking class, I
saw myself in the videotape. I couldn’t quite figure out why I looked
different from others.
Through the years, my parents took me everywhere. They took me to ballets,
symphonies, movies, plays, and ice-skating, etc.
Naturally, I couldn’t understand what the movies or the plays were
being said. There were no captions for the movies at that time. My sisters
took ballet classes and I wanted to take ballet. At that time, I couldn’t find
the right words to express or to communicate with my parents. They thought I
wanted to take acrobat. After
trying out in acrobat for several times, I quit because it was so hard for me.
I tried guitar and weaving classes but I didn’t like them. My dad took me
ice-skating. At first, I fell down many times. Dad would help me up and I
would hold on my dad’s arm while we skated together. My brother played the
piano. I enjoyed listening to his music at home or at his recitals. He also
played the church organ at Trinity Cathedral. I could hear the lower
frequencies of the piano like the bass and not the higher ones without my
hearing aids. I took two
years of private piano lessons at Duchesne. My aunt from Indianapolis
taught me how to do embroidery, which I loved very much.
My family loved to play games. My parents would play card games, Probe or
Scrabble to improve my vocabulary. My dad or my brother played Cribbage with
me. Whenever my grandma came to visit us from Wisconsin, she would play
Chinese Checkers or any card games with me.
In car rides from home to school, my dad would play the games like Password
or You Don’t Say, orally. We also played Beavers trying to point out the
most Volkswagens. Games made it fun and educational. As time had gone by, I
learned little by little in everything that I did.
On one of my family’s vacation trips to California visiting Uncle Hans and
Aunt Ruth, we went to Disneyland. I
was watching the artist drawing faces with colored chalks. I thought if he
could draw, then I could draw. So when I got home, I practiced drawing
the faces a lot from the portrait of myself from Disneyland. My brother, Rick
noticed and showed my drawings to my parents. He suggested that I take some
art classes. Ann’s parent suggested to my parents the painter, Mrs. Ruge.
Mrs. Ruge taught drawings with charcoal and pastels or oil paintings to her
pupils on Saturday mornings for three hours in the basement of someone’s
home. I started out drawing pictures with charcoal and pastels. After few
drawings, Mrs. Ruge suggested that I start on oil paintings. My parents had to
buy oil paints, brushes and easel for me. I got so excited about painting. The
teacher used colorful bottles or dishes for still life, students
for portrait, and pictures for landscape. I learned so much from her. I enjoyed painting with oils.
Sometimes I used my little finger or the side of my hand or my elbow to
support me and to keep me still while I paint. Some of my classmates took oil
painting classes with me. I took
Painting lessons under Mrs. Ruge for three years. She moved to California. I
missed her very much.
In 1968, at my eighth grade graduation, they sang Bon Voyage to each of the
eighth grade classmates at the tuned of “No man is an island”.
Here was what they wrote about me.
came to Duchesne
her talent’s art
in her heart
I continued through High School for two years at Duchesne. It was very hard
for me to catch up academically. My mom worked with me on my homework a great
My dad got a new job as a State Investment officer in Lincoln, Nebraska.
I was very sad to leave Duchesne. We moved to Lincoln in 1970.
My parents decided to send me to public school, Lincoln East High School.
This school was a lot easier for me than the Catholic school. Little by little,
I was able to do a few of the homework myself. My mom still helped me with my
homework. I enjoyed being the teacher’s aid for one of the teacher. I made
many beautiful bulletin boards and did some paper work for her like Xeroxing
papers or correcting students’ papers. I went to football and basketball
games with a group of my hearing friends. I was one of the girls cheering for
the football or basketball players with the cheerleaders with our pom-poms. We
wore blue and white uniform at those games. After the games, we would go to
Kings to eat. The same group of friends stayed overnight at my home or their
home. Many times I was feeling left out in conversations between my friends
and I. Sometimes I would ask them what was so funny or what they were talking
about. Sometimes they would
answer brief or “It’s nothing”. I would love to understand every
word of their conversations.
I had speech therapy since three years old until High School.
I didn’t work on my speech faithfully because of my hatred for Mrs.
Thomas’ treatment on others. I didn’t see the need for speech therapy if I
could talk. I didn’t realize my speech was not the same as the hearing
While I was watching the Cerebral Palsy Telethon or the Easter Seals Telethon
on television, I remembered asking my Dad to help pay for the telethon. He
accepted paying for the telethon. I didn’t know I had C.P.
Then at Christmas time in 1970, I found out I had C.P. through my
brother-in-law’s thesis. It took me a while to absorb the fact that I had C.P.
I finally realized why the kids were making fun of me.
I graduated from Lincoln East High in 1972.
My parents gave me a lovely graduation dinner party with their friends
from Omaha and Lincoln, Nebraska.
Positive thinking and lots of love from my parents, brother and sisters helped
me to overcome any obstacles whenever I faced difficulties in life.
As you can see, my mom was my “teacher” for nine long years. She gave up
her time for me even though she had so many other things to do on top of that.
I will forever remember my mom for her never-ending patience and love.
I learned so much from my dear mom.
My parents decided to visit Mrs. Thomas. I had not seen her for nine years.
Mrs. Thomas was happy about my progress.
They discussed on what to do with me in the future.
Mrs. Thomas changed her mind about me going to a hearing school. Mrs. Thomas suggested that I go to National Technical Institute for the
Deaf in New York. My
parents put all of my brother and two sisters through four years of liberal
art college. They wanted to do the same for me. Gallaudet College was the only
Liberal Art College for the deaf in the world. It was located in Washington
D.C. My parents decided to take me with them to visit Gallaudet during Dad’s
business trip. I saw many deaf people using sign language there for the first time. I had to take
entrance exams for two days while I was there. I got very excited about going to this
college. We also visited around Washington D.C.
After taking our vacation trip to Colorado at the “Y” camp, I was waiting
to hear from Gallaudet on whether I passed the entrance exam or not. The day
finally came with a letter from Gallaudet saying that I passed. I was so
thrilled. I hugged my mom and called my dad at work. They were so happy for
I took sign language class with my mom. The teacher had to cancel some of the
classes because she was on duty as a cop. Her deaf friend gave me private
lessons in sign language before going to Gallaudet.
Near the end of July, my dad was killed in a car accident. I was very sad. I
didn’t want to go to Gallaudet leaving my mom alone at home. The Bishop of
Texas, who was our priest in Omaha, came to my dad’s funeral. The Bishop and
I had a long talk. He encouraged me to go to Gallaudet.
A few weeks later, my mom was in the hospital. My two sisters had to
finish clothes shopping for me.
My sister, Kathy and her husband, Mike flew to
Washington D.C. with me to help me get settled at Gallaudet in August.
I was very awkward in sign language at first.
There were so many words in sign language to learn. I had to learn fast
in order to communicate with my teachers and friends. For the first time in my
whole life, I was able to understand every word of what the teacher was saying
in sign language without missing any words in classes. Also, I was able to do
all of my homework completely on my own for the first time in my life.
I loved my classes and I learned so much there.
I decided to work hard at Gallaudet.
I wanted my mom to be proud of me. I wanted to show that her tireless
effort of teaching me for nine years was worthwhile.
After the first semester at Gallaudet, I came home for Christmas. I was happy
to see my family again. A few days later, I noticed myself trying to understand
in my family’s conversations at meal times. I was feeling left out. I went to my room
crying and my aunt tried to comfort me. I just wished my family would learn
sign language so that I could be part of the conversation.
In the past, I didn’t bother to ask much from my family. I could
understand my family or friends, individually. I could stop them if I didn't
understand them. In group discussions, I was lost. I would hate to interrupt
them every time I didn't understand in each sentences. I was on the
Dean’s list after the first year at Gallaudet. When I went home for the
summer, I was mad at my mom for putting me through the Catholic school or the
public school without sign language instead of going to a deaf school. Mom
said it was all her fault. She thought she did the best she could for me at
that time. Then I realized that there was some good in what I went through.
If I had gone to a deaf school, maybe I would not have gotten this far
in my life. Perhaps, I wouldn’t
be as motivated as I am now. I apologized for being mad at her. I gave her a
big hug. I thanked her for everything she had done for me.
I had many good friends and roommates at Gallaudet for six years. I had many
CP and deaf friends and roommates, too. I used to hate and reject Sally, who
had CP and hearing impaired. Later
she became one of my best friend and my roommate at Gallaudet. I was glad to
see that I was not alone with C.P. and deafness.
For the next five years, I studied hard at Gallaudet. I was involved in many
activities such as the Delta Epsilon Sorority, different clubs, and bible
studies. I was in the Joyful Sign group (a group of Christians singing in sign
language). We sang at different churches and on campus.
I took modern, square, folk, and ballroom dance classes. My dancing
teacher asked me to do a solo in modern dance at the dance show during my
senior year. I had three jobs (working in Post Office and P. E. as their
Assistants and tutoring French or Math at the Tutorial Center) when I was a
senior. I did that for job reference. I changed my major several times. I didn’t
know what I wanted to do after Gallaudet. I didn’t realize that college would lead me to a good job.
During one summer at home from college, I was a volunteer helping the blind,
deaf and autistic children for few weeks near the Dr. Lord’s School. Every
child had all three of the handicaps. It was quite an experience working with
them. After one week as a volunteer at the Easter Seal Camp, I was being paid
to work as a cabin counselor helping all various kinds of disabilities from
all different ages for the rest of the two summers in Nebraska. One of my
favorite parts of that camp was when all the campers and the counselors cheered
together in the
cafeteria for any little improvements the campers tried to do. For example,
one of the campers finally walked with crutches from her cabin to the
cafeteria in thirty minutes while normally it would take five minutes to walk.
It meant a lot to the campers for any encouragement or praise from them. On some
weekends, I went home to be with mom and my family.
I met my boyfriend during my sophomore year. We had a lot of fun together. We
were together for four years. During the beginning of my senior year, he gave
me an engagement ring at a lovely park overlooking the Potomac River with
fireworks. It was a beautiful evening filled with happiness. I was so thrilled
to be engaged to him.
encouraged me to take Driver’s Ed. during the evening class at Gallaudet. I was very nervous, when I took the driver’s test during the
terrible traffic of rush
hour in Washington D.C. I passed the written test. I failed the parallel
parking test. I finally passed it the second time. I also had to take the test
to see how fast I could stop in time if something happened. I barely passed
it. I was driving very slowly and carefully during the first few years because
I was afraid that I would not stop in time if something came up in a sudden.
I kept my car at a distance from the other cars to allow myself to stop in time.
As the time went by, I was able to drive a little faster.
I decided to go to the placement office in March before I graduated from
Gallaudet in May to prepare for an interview for a job. I took the tests to
show where my interests were in different jobs. She advised me on how to write
a job application with a resume. I tried to get any job whether it was related
to my major or not. I majored in Home Economics. I knew it would be hard to find a job because of my
disability. I had an interview at the National Library of Medicine in National
Institute of Health in April of 1978. I was so happy that I got the job.
I finally graduated from Gallaudet in May of 1978. My mom, brother and
two sisters came to my graduation. It was a beautiful place at the National
Shrine for graduation. My family was so happy for me that I graduated and got
the job. I thanked God for that.
A week after my graduation, I started working at the National Library of
Medicine as a Librarian Technician. At first, I pulled medical books for
the readers and shelved them. I also searched for the correct
information through the manual on what the patron was asking for.
I went home in August of 1978 to get married in Nebraska at Trinity Cathedral. The wedding was
lovely. My brother, Rick, was the father of the bride. My two sisters were
matrons of honor. We had two priests (Episcopalian and the Catholic priests)
marrying us. The Catholic priest was a chaplain at Gallaudet. A deaf friend
was signing the song, “You light up my Life”.
I worked at NIH for almost a year and a half before my baby was born. The
doctor was afraid to give me an epidural.
He thought that if I moved any of my muscle, the epidural would make me
paralyzed from the hips to legs down. So I went through labor naturally. I had
an interpreter with me. She, also, helped me with my breathing. Our beautiful
daughter, Pauline, was born in November of 1979. I named Pauline after Paula,
my childhood friend. Then our handsome son, John, was born in December of
1981.He was breeched. I had caesarean. I stayed home with them for eight
years. It was a challenge for me.
When they were babies, I used my back on the wall to support my balance while
I was going up the stairs with the baby in my arms or when I had my hand full
of things to carry. Before we got the crying alarm with a flasher, Pauline was
sleeping on our bed between my husband and me.
I would drive the children everywhere while they were growing up like
taking them to the doctor’s office, movies, dancing classes, roller skating,
girl scouts, parties, swimming, miniature golf, food and clothes shopping,
In 1985, I was working at McDonalds near my home in the evenings from 6:00 in
the evenings until one or two o’clock in the morning while my husband took
care of our children for two years. At first, I was cleaning the tables and
the bathrooms. I was taking the trash out. Also, I mopped the floors. When we
were short of staff during the holidays, the manager asked me to be a cashier
and get the food for the customers. When I didn’t understand the orders from
the customers, I would repeat what I understood and the customers would
fill in the order of what I didn’t understand, politely. For example, I
said, “You would like two
hamburgers, three cokes, and ________”.
If I still didn’t understand the customers, I would ask them to write
down their orders. I enjoyed
being the cashier. It was a challenge for me. The customers were very friendly
during the week.
On Friday and Saturday nights at McDonalds, there were usually many teenagers
coming for social gatherings from all the various games like the football or
the basketball games. During those times, the teenagers would make fun of me
like staring and laughing at me, They whispered to others about me, or made me work harder by cleaning up the salts and peppers, when the teenagers
opened and poured them out on the tables. They also made a mess in the
bathrooms by pouring catsup on the bathroom walls in which I had to clean up.
As the time went by, it got worst. I decided to write a letter to the
Principal, staff and the students of a nearby high school.
In the letter, I introduced myself and explained what was happening
at McDonalds. Then I asked them, “How would you feel if you were in my
shoes?” When I went to deliver
the letter, the school was closed because of voting day. I slipped the letter
under the door of the administrator’s office.
A few days later, some of the students and teachers came to McDonalds
telling me that I made a good point in the letter. They told me that they made
some copies of the letter and posted to all the classroom doors. In some of
the classes, the teachers and the students discussed about this issue.
Some of the students became friendlier and they respected me more.
When our son, John, was in Kindergarten for half day, I was able to work
part-time in the mornings at McDonalds as a cashier.
In 1987, when our children were in school full-time, I decided to apply back
to National Library of Medicine. They
hired me back immediately. It was hard to be a mother and to work full time.
New technology took over the library. We had to learn how to use the
computers. I remembered my typing classes at my Catholic school for two years.
I typed very slowly. Through the years, my typing skills gradually
improved in speed by using the computers at work and TTD (Teletype for the
deaf). When I used the mouse for the computer during the first few weeks, my
hand shook and I couldn’t coordinate well in using the mouse. The more I
used the mouse, the better I was able to coordinate my hand movement on the
mouse. Wrist rest was very helpful to support my wrist while I was typing. I
did a lot of searching through my computer for my work. I also used the
Federal Express machine to mail out packages of books or audiovisuals.
Sometimes, I used the relay service to call other libraries in the U.S to get
the correct information we needed. I
had interpreters in most of my training classes or meetings. I liked my
supervisors. They treated me well. In group discussions or meetings, I was
completely lost unless I had the interpreter. I could understand my supervisor
on a one to one basis because I could stop her if I didn’t understand certain
words. I received many promotions and awards from this library through the
years. I enjoyed working there.
It was a challenge to work there.
Our third handsome child, Michael, was born in October ’91. I had an epidural
with no problem, after trying to have the baby the natural way for eleven
hours. I complained mostly of my back pains. With the high cost of living, we decided that it was best that
I continue to work at the library. Our three children kept me busy. They were in
all different activities in their schools and outside of school as well.
Michael was in cub scouts and in baseball team last spring. Now Pauline and
John are in college. Of course, we had some ups and downs just like everyone else. I enjoy all of our three children. Pauline, John and Michael are very precious to me.
I also was busy at Catholic Deaf Center. I became Catholic after I got
married. When our children were younger, I taught CCD classes on Sundays
to deaf and hearing children. I volunteered teaching sign language to hearing
adults at the church on Monday evenings for few years. Now, I do the readings
before the gospels in sign language during Mass.
I do Eucharist ministry, too.
We have an apricot poodle since 1986. We all love her. She lets me know when
someone is at the door by barking. We do not have a flashing light for our
door, yet. We have the flashing light for our phone.
As I grew older, I became more and more aware of myself from other people or
friends telling me. Some people said that I was slow in talking, walking or
doing anything. I thought I was
doing things fast. It took me longer to do things. I did have problems with
managing time. I had to do things ahead of time. Sometimes I didn’t get
things done in time. Some people didn’t have patience with me. Other people
said I was overreacted in my emotions when I was just mad, sad or happy. I
cried or laughed harder without thinking. Unless I thought of my emotions or
someone reminded me, I could control it. I had arthritis in my neck and back
problems. I did have some balance problems. I fell down for no reason at
times. I was more tired than before especially in the evenings. Sometimes, I
didn’t have any energy to do anything at night. I tried to do things early
in the day as much as I could. Some
of my friends or people were surprised I didn’t know a lot of things. I
learned some things late in life. They would say, “It’s so easy”. It might be easy for them because they
already learned some things like cooking early in life. Same thing for
vocabulary. Some of my friends were shocked that I didn’t know some words. I
was embarrassed. I didn’t know any dirty language until I entered Gallaudet.
I noticed that some hearing or normal deaf people preferred to talk with the
other normal deaf person instead of C.P. and deaf person. It made us feel left
out. Sometimes, I felt stuck in between three different worlds- Hearing, Deaf
and Cerebral Palsy.
My dear Mom passed away during the summer of 1994. I missed her tremendously.
To parents, teachers, family, friends, students, or anyone working with C.P.
and deaf children, I encourage you to work together with the child at an early
age if possible. Be creative in giving the best for the child with lots of
love, support and encouragements. Cheer for the child in the smallest or the
biggest improvement. The child will be motivated to go further in life no
matter what happen. Even teens and adults need all the encouragements and
Positive attitudes also help the child to overcome any obstacles whenever the
child face difficulties in life. Positive attitudes enhance the child to go
further in life with rich experiences. Positive thinking also encourages the
child to think that nothing is impossible with God’s help. Try different
activities that will interest the child to develop skills. If the child doesn’t
like one thing, try something else. Not all of us have the same degree of C.P.
Some may walk slowly, while others may walk fast. There is mild to severe in C.P.
and deafness in each child. What works for me may not work for your child.
Matching or pointing words with pictures, furniture or things are helpful to
get the concept of words. Sequences and action verbs help get the meaning of
the story. Spelling, grammar and diagrams helps me understand the sentence
structures. Work with your child on vocabulary.
I suggest classes like art or dance classes and games for fun to help
co-ordinate different parts of the body. It doesn’t have to be boring
exercises only. Computer games and video games are wonderful for children to
play alone or with someone to co-ordinate better. Some of the computer
games are educational. When you go anywhere with your child like ballet or any
events, talk with your child about it. Each child has some hidden talents
waiting to be found or blossomed. Your child may be good at one thing while others may be
good at other things. I am amazed at what C.P. and deaf people can do. Some of
us need special equipments or tools to assist in doing things easier such as
wrist rest or equipments like in www.rocknrollcycles.com.
UCP (United Cerebral Palsy) and Easter Seals are one of the good organizations to help meet the child’s
needs. Captioned television and TTY (teletype machine attached to the phone)
are wonderful to have. If
possible, I strongly suggest family members to take sign language classes so
the child will not feel left out in family discussions during meals or other
occasions. The interpreters aid the child to understand what is happening in
the classrooms or group meetings. Most schools provide interpreters nowadays.
I am planning to go back to Gallaudet University majoring in computer graphics
this fall of the year of 2000 as a part-time student while working full-time at National Library
of Medicine. I am hoping in the future to become an Occupational Therapist. It
is never too late to learn anything. It is a joy to understand the teachers
using sign language in the classroom. For students, I encourage anyone with
C.P. and deafness to go higher in their careers for rich experiences like Bill
Mathewes, one of our group, creates this beautiful website for us. Some of us
are Accountant, Senior Application Software Engineer or even a Comedian.
Nothing can stop us from having a dream come true of what we want to become.
The more education or skills, the better the child will become. It also
encourage them to live independently and comfortably especially with the high
cost of living. I suggest teachers or employees to have the students explore
in their different jobs so they will know what they want to become or what is
expected from them. Our first Gallaudet, Deaf President, King Jordan, said,
“We can do anything except hear”. I like some of the quotes in this
website under each autobiographer’s pictures such as Mike Dorsey saying, “We
are Cool People”, Sally Mooney saying, “We can do anything we want to do”,
Sarah Johncox and Kelly Madsen saying “Go for it”, Bill Mathewes saying
“ Won’t give up”, Patty Porreca saying “ Be Happy”, Theresa Ackerman
saying “The word Can’t is not in our vocabulary”, Alan Porreca saying
“Better now than never” and I’m saying “Think positive and be creative”.
I’m very impressed with Dr. William Henderson, a Principal of the school in
Boston. He has retinitis pigmentosa, which is a deteriorating condition of the
retina and is now blind. In his school, he has 20% students with all kinds of
disabilities, ranging from people in wheel chair, Autism, Cerebral Palsy,
Retardation, Down syndrome and emotional disorders along with the normal
students. They are in the same classrooms together. The disabled students are
not pulled out for special Ed classes. This encourages the normal students not
to grow up staring at them. It
also teaches them to look at the value of a person rather than looking at
In speaking for all the various kinds of disabilities or illnesses, I think all
the schools and in the workforce need to be educated. All those cruel action,
mocking or name-calling must be stopped. This should not be tolerated. They
need to be taught about the various kinds of disabilities and to show concern for
all mankind. One of the suggestions is for the students to work with different
kinds of disabilities as a requirement for community service for rich
experiences. It helps them become aware of what it is like to be in our shoes.
It is not fair to us to be the subject of mockery, when we have no intention of
trying to make people laugh at our disabilities. Last spring at Gallaudet,
they had hand-on exhibits during Disabled Pride Day on all the different kinds
of disabilities. It made the students become more aware of what it was like to be
blind, learning disabled, etc… They didn’t realized how tough it was to be
in our shoes. I think all of us need to be treated equally and with respect. I
also encourage all disabilities to reach out and teach all who don’t
understand us. Ask them,
"How do you feel to be in our shoes?". I think it is time for peace to begin
somewhere-us. God has a purpose for us to live for some reasons. I hope some
day all of us will be united as one big family no matter who or what we are.
In May of 1998, I got the group of C.P. and deaf friends together for our
social gathering at Patty Porreca's home. We had so much
fun together. I showed the group a piece from the website saying there was no
book on C.P. and deafness together. We knew that having C.P. and deafness
together had completely different experiences than just C.P. or deaf. Rocky
Somers came up with a bright idea of having a website for our group. We decided
to form a C.P and Deaf Organization in November of 1998. In April of 1999, we
started our own website www.cpado.org.
Bill Mathewes is our great Webmaster for our website. I think he does a
beautiful job on it. We get together once every month for fun and/or meetings
to discuss any improvements on our website. Sometimes we go on field trips
together such as picnic and boat ride, etc.
We also go out to eat together and to an evening fun of MCADO game. We
have so much fun together. Anyone who has
C.P. and deafness is welcome to join our group or our website.
I wanted to thank all of my family, relatives, teachers, supervisors, counselors
and friends for all the fun, support, encouragements, and love you have given
to me. Especially to my brother, Rick and my two sisters, Kathy and Jo, Dad
and my three children, Pauline, John and Michael for accepting me as part of
their family. But most important of all, I wanted to thank my Mom for her love,
encouragement, support and never-ending patience of teaching me through my
early years of my life. With the Lord’s help, nothing is impossible.