Emily's Story
Coastal Bend Down Syndrome Advocates (CBDSA)
This story was sent to me by a proud (as well she should be) mother.
This story is in mom's words and I think she captures it beautifully. It
outlines the accomplishments of her daughter Emily and of her family.
It goes to show, NEVER underestimate your child, your family or you.
Our kids can do ANYTHING if we give them the chance. Thank for
sharing with us Jackie!
This story is in mom's words and I think she captures it beautifully. It
outlines the accomplishments of her daughter Emily and of her family.
It goes to show, NEVER underestimate your child, your family or you.
Our kids can do ANYTHING if we give them the chance. Thank for
sharing with us Jackie!
May 3, 1980 was a momentous day. Genuine Risk became only the second filly to win the Kentucky Derby and our family entered
the world of “risk” with the birth of our 4th child and 3rd daughter in Denver, Colorado.
Twenty four hours later the bubble burst when her pediatrician and the obstetrician met in my room with the two of us and Emily.
They made sure I was holding the baby when they asked us….”Are either of you familiar with down syndrome?” I remember
thinking my stomach was turning the way it does on a roller coaster. For me the next few minutes were a blur while I dried my
eyes and tried to focus on the conversation.
Our astute pediatrician then began an almost one hour discussion of what wonderful things were in store for us having a child
with down syndrome….so different from the horror stories most parents report with their initial diagnosis. He told us of all the
things Emily WOULD be able to do …not what she wouldn’t do. He also told us about the Early Intervention programs that were
available to us and advised us to get into one as soon as possible. Looking back through the years …I think this first very
positive encounter with the disability has made all the difference in the world for our whole family.
Emily had some heart problems and surgery for Hirschprungs disease her first 10 days of life …so after a rocky physical start we
brought her home to begin what is best described as a MARVELOUS JOURNEY.
Her heart problems self corrected and she successfully pulled through surgery for the Hirschprungs at 14 months of age. None
of her medical problems got in the way of her having a very normal first two years of life. In fact, she was “show and tell” in three
different elementary classes when she was less than 3 weeks old…colostomy bag and all.
Even though I was an Occupational Therapist, I knew very little in those days about working with developmental disabilities and I
jumped in almost immediately with both feet….learning all I could about everything….including how to advocate for people with
disabilities.
I think the best favor we ever did for ourselves and Emily was to raise her as if she didn’t have a disability. We did take advantage
of the therapies such as speech, physical therapy and occupational therapy, but we didn’t let them take over our lives. We tried to
give Emily the same life she would have had if she did not have Down syndrome. We took her everywhere and included her in all
the infamous family Vacations….even taking her with us to London when she was young where she did NOT get to meet the
Queen.
She attended her home schools in mostly typical classrooms with her peers. She played Kids Inc sports, was in Bluebirds and
Campfire, went to birthday parties, scout camps, and spent the night with friends. At age 10 she began a wonderful relationship
with Special Olympics and has many friends she made there to this day. Ed even served on the Texas State Board of Special
Olympics for a number of years.
After Emily graduated from a northern Texas High School in 1999 she attended a two year program at Eastern New Mexico
University/Roswell where she lived in a dorm 200 miles from home. This helped us with cutting apron strings and Emily learned
many new skills such as taking public transportation on her own.
Last year Emily had a unique opportunity to move to the Houston/Seabrook area where she took care (House Manager) of a four
story Georgian Revival Mansion. She lived on the 4th floor of the home of an oncologist and his wife who runs a supported
employment program. She learned a lot about working and became very independent. The contract lasted a year and at its end
she decided she did NOT want to return to north Texas and live at home. She is now embarking on another career. She is
moving to Austin where she will live for a time with her oldest sister and look for a job and seek out an independent living
situation.
People often look at Emily and think she must be an “exception” in the world of Down syndrome. She is not. She is an average
individual with a disability who has been giving all sorts of opportunities and supports. She tries hard, takes risks, and makes
the most of what is given to her. She is a marvelous example of the fact that people with disabilities are…more ALIKE than
different.
the world of “risk” with the birth of our 4th child and 3rd daughter in Denver, Colorado.
Twenty four hours later the bubble burst when her pediatrician and the obstetrician met in my room with the two of us and Emily.
They made sure I was holding the baby when they asked us….”Are either of you familiar with down syndrome?” I remember
thinking my stomach was turning the way it does on a roller coaster. For me the next few minutes were a blur while I dried my
eyes and tried to focus on the conversation.
Our astute pediatrician then began an almost one hour discussion of what wonderful things were in store for us having a child
with down syndrome….so different from the horror stories most parents report with their initial diagnosis. He told us of all the
things Emily WOULD be able to do …not what she wouldn’t do. He also told us about the Early Intervention programs that were
available to us and advised us to get into one as soon as possible. Looking back through the years …I think this first very
positive encounter with the disability has made all the difference in the world for our whole family.
Emily had some heart problems and surgery for Hirschprungs disease her first 10 days of life …so after a rocky physical start we
brought her home to begin what is best described as a MARVELOUS JOURNEY.
Her heart problems self corrected and she successfully pulled through surgery for the Hirschprungs at 14 months of age. None
of her medical problems got in the way of her having a very normal first two years of life. In fact, she was “show and tell” in three
different elementary classes when she was less than 3 weeks old…colostomy bag and all.
Even though I was an Occupational Therapist, I knew very little in those days about working with developmental disabilities and I
jumped in almost immediately with both feet….learning all I could about everything….including how to advocate for people with
disabilities.
I think the best favor we ever did for ourselves and Emily was to raise her as if she didn’t have a disability. We did take advantage
of the therapies such as speech, physical therapy and occupational therapy, but we didn’t let them take over our lives. We tried to
give Emily the same life she would have had if she did not have Down syndrome. We took her everywhere and included her in all
the infamous family Vacations….even taking her with us to London when she was young where she did NOT get to meet the
Queen.
She attended her home schools in mostly typical classrooms with her peers. She played Kids Inc sports, was in Bluebirds and
Campfire, went to birthday parties, scout camps, and spent the night with friends. At age 10 she began a wonderful relationship
with Special Olympics and has many friends she made there to this day. Ed even served on the Texas State Board of Special
Olympics for a number of years.
After Emily graduated from a northern Texas High School in 1999 she attended a two year program at Eastern New Mexico
University/Roswell where she lived in a dorm 200 miles from home. This helped us with cutting apron strings and Emily learned
many new skills such as taking public transportation on her own.
Last year Emily had a unique opportunity to move to the Houston/Seabrook area where she took care (House Manager) of a four
story Georgian Revival Mansion. She lived on the 4th floor of the home of an oncologist and his wife who runs a supported
employment program. She learned a lot about working and became very independent. The contract lasted a year and at its end
she decided she did NOT want to return to north Texas and live at home. She is now embarking on another career. She is
moving to Austin where she will live for a time with her oldest sister and look for a job and seek out an independent living
situation.
People often look at Emily and think she must be an “exception” in the world of Down syndrome. She is not. She is an average
individual with a disability who has been giving all sorts of opportunities and supports. She tries hard, takes risks, and makes
the most of what is given to her. She is a marvelous example of the fact that people with disabilities are…more ALIKE than
different.