The formal story began in 1866, when a physician named John Langdon Down published an essay in England in which he described a set of children with common features who were distinct from other children with mental retardation. Down was superintendent of an asylum for children with mental retardation in Surrey, England when he made the first distinction between children who were cretins (later to be found to have hypothyroidism) and what he referred to as "Mongoloids."
Down based this unfortunate name on his notion that these children looked like people from Mongolia, who were thought then to have an arrested development. This ethnic insult came under fire in the early 1960s from Asian genetic researchers, and the term was dropped from scientific use. Instead, the condition became called "Down's syndrome." In the 1970s, an American revision of scientific terms changed it simply to "Down syndrome," while it still is called "Down's" in the UK and some places in Europe.
In the first part of the twentieth century, there was much speculation of the cause of Down syndrome. The first people to speculate that it might be due to chromosomal abnormalities were Waardenburg and Bleyer in the 1930s. But it wasn't until 1959 that Jerome Lejeune and Patricia Jacobs, working independently, first determined the cause to be trisomy (triplication) of the 21st chromosome. Cases of Down syndrome due to translocation and mosaicism (see definitions of these below) were described over the next three years.
http://www.ds-health.com/trisomy.htm
I post this mostly to show that you will in your lifetime hear people refer to people who have Trisomy 21 as mongloids (although most people haven't heard or used this term, I have come into contact with at least one who used this word and there was nothing derrogatory meant by it) and Downs people. You can see where one might be mistaken in using these terms as this is what they have always heard. It is up to those who are familiar with Trisomy 21 to educate others as to the correct usage of titles for this syndrome.
What is Trisomy 21?
Down Syndrome, is a chromosome abnormality. The syndrome is caused by an extra copy of chromosome 21, and individuals with trisomy 21 usually have mental retardation. Other conditions may be present as well. Trisomy 21 is a common birth defect, appearing in about one out of every 660 newborns.
Here is a fantastic site for those who wish to become more familiar:
http://www.ndss.org/
Here is a great FAQ from that site:
• Down syndrome occurs when an individual has three, rather than two, copies of the 21st chromosome. This additional genetic material alters the course of development and causes the characteristics associated with Down syndrome.
• Down syndrome is the most commonly occurring chromosomal condition. One in every 733 babies is born with Down syndrome.
• There are more than 400,000 people living with Down syndrome in the United States
• Down syndrome occurs in people of all races and economic levels.
• The incidence of births of children with Down syndrome increases with the age of the mother. But due to higher fertility rates in younger women, 80% of children with Down syndrome are born to women under 35 years of age.
• People with Down syndrome have an increased risk for certain medical conditions such as congenital heart defects, respiratory and hearing problems, Alzheimer's disease, childhood leukemia, and thyroid conditions. Many of these conditions are now treatable, so most people with Down syndrome lead healthy lives.
• A few of the common physical traits of Down syndrome are low muscle tone, small stature, an upward slant to the eyes, and a single deep crease across the center of the palm. Every person with Down syndrome is a unique individual and may possess these characteristics to different degrees or not at all.
• Life expectancy for people with Down syndrome has increased dramatically in recent decades - from 25 in 1983 to 60 today.
• People with Down syndrome attend school, work, participate in decisions that affect them, and contribute to society in many wonderful ways.
• All people with Down syndrome experience cognitive delays, but the effect is usually mild to moderate and is not indicative of the many strengths and talents that each individual possesses.
• Quality educational programs, a stimulating home environment, good health care, and positive support from family, friends and the community enable people with Down syndrome to develop their full potential and lead fulfilling lives.
• Researchers are making great strides in identifying the genes on Chromosome 21 that cause the characteristics of Down syndrome. Many feel strongly that it will be possible to improve, correct or prevent many of the problems associated with Down syndrome in the future.
Here is the most common thing I have heard while raising my daugther with Down syndrome:
"She doesn't have it bad does she, because she doesn't look like she does?"
-There is no degree of Down syndrome, you are either affected by it or you aren't. There are different functioning levels, there are different health issues, but if you have Down syndrome, you have it.
Why did I post this page on my blog?
I posted this page because of my oldest daughter. She is 17 this year (2010) and she has Down syndrome (Trisomy 21). She was diagnosed just after birth. This came as a huge suprise to my husband and I, it threw us for a loop. We were young parents and this was our first child. We were overwhelmed by a baby let alone one that would have special needs. Let me tell you something, she is the best thing that could have ever happened to us. She grew up slowly..reached milestones slower than other children. This really allowed us to grow up with her. She was patient and could entertain herself like she had been doing it for decades. It allowed us to grow in our patience and allowed us to learn how to entertain a child. She was just the blessing we needed. This page is for her.
It is to show others that people who have children with special needs are typical people who live their lives just as everyone else does. It is to show that people who have Trisomy 21 live typical lives with a few modifications.
My daugther may have Trisomy 21, but it does not have her. She is not defined by her disability, but her ability. She is beautiful, she is inspiring, she is my hero!
If you are in Arkansas and want more information http://www.ardownsyndrome.org/ is a great organization.
