Down syndrome awareness month
Published 10:20 am Thursday, October 19, 2017
October is Down Syndrome Awareness Month. As stated on the National Down Syndrome Society website, the purpose of setting aside a special month is to celebrate and acknowledge the accomplishments of people with Down syndrome.
Local Middlesboro mother Marcella Orr raised a son with Down syndrome and sat down with the Daily News to share their story.
Her son, JamesMichael England, was born on Oct. 19, 1998 and is a recent high school graduate. Orr was not aware that her son had Down syndrome, as she did not have any prenatal tests beforehand.
“It didn’t matter. I was going to bring him home and take care of him or her either way that it went,” she said.
Down syndrome occurs when a person is born with an extra full or partial copy of chromosome 21. Down syndrome is also the most common chromosomal condition. With the condition comes the unfortunate chance of various illnesses and health issues as they get older. People with Down syndrome have a higher risk of congenital heart defects, hearing and breathing troubles, thyroid conditions, Alzheimer’s and childhood leukemia. Muscle down is also underdeveloped and they must get physical therapy for it.
Orr explained that JamesMichael had physical therapy, speech therapy and occupational therapy growing up.
“There was someone in and out of our home until he was 3 years old,” she said.
With the proper care, there is nothing stopping a child with Down syndrome from assimilating to everyday life, and JamesMichael was no exception.
Orr stated that her son started school a little after the age of 3 years old and was involved in a special Bell-Whitley program designed to aide him in his learning and development.
“At first I was really skeptical. I shed a few tears. I didn’t want him to go, but I knew it was best for him. He enjoyed it,” she said. Orr explained that JamesMichael would stay for around two hours a day at school to start with and would gradually work up to spending the full day once he was completely acclimated. He had his own personal aide that took care of him at school until the fourth grade — where he “blossomed.”
Orr describes her son as a very loving and personable young man. His true passion is basketball, which he played his fair share of during high school.
Orr is very grateful for the support system her son had growing up. He had a caretaker during his childhood so his mother could work, and Orr expressed her eternal gratitude and love for the caretaker as somebody essential to JamesMichael’s development. His father, Jimmy England, was a part of his son’s life from the very beginning and continues to be. JamesMichael was well-liked in school and had a plethora of friends and he would join in on all kinds of activities that interested him.
Orr stated that she was determined to not treat her son any differently than someone without a disability. He has chores, when he does something naughty or against the rules, he is disciplined and he is never talked down to.
To date, JamesMichael is an active and healthy young man and shows no signs of slowing down.
“I thought I did something wrong (to cause his condition) in carrying wrong in carrying him. I thought his dad did something wrong,” said Orr. She explains how they did see a geneticist to determine a possible cause, but over time she felt it was a waste of time and money.
“It is what it is. My belief is that God gave him to me to be his mother — to take care of him,” she said.
Some of the information in this article can be found at http://www.ndss.org/Down-Syndrome/Down-Syndrome-Facts/.