In 2001, my life was forever changed. That’s when my first child was born. I will never forget it. I was with my wife as she labored for over 24 hours, and then there is this beautiful baby girl.
I wept. I did not expect tears, but I was so overwhelmed by this beautiful creature that I instantly loved more than anything else in the world. She was perfect. She was gorgeous. And she had Down syndrome.
I knew what that meant. My wife and I both had a lot of experience working with people with special needs. She spent her summers as the women’s director at a camp for children with special needs and was the attendant for a fellow student that was wheelchair bound while in college.
I was friends with special needs students in high school and was working as a Special Education Paraeducator at the time of my daughter’s birth. So, her diagnosis didn’t shock or scare us in the least. We were only concerned with her health.
Down syndrome is named after John Langdon Down, who first described it in 1866. He did not have the syndrome, so it is not considered appropriate (in the U.S.) to call it “Down’s syndrome,” since the apostrophe implies ownership or possession.
In every cell in the human body, there is a nucleus, where genetic material is stored in genes. Genes carry the codes responsible for all of our inherited traits and are grouped along rod-like structures called chromosomes.
Typically, the nucleus of each cell contains 23 pairs of chromosomes, half of which are inherited from each parent. Down syndrome occurs when an individual has a full or partial extra copy of chromosome 21.(1) This is why Down Syndrome is also known as Trisomy 21…(3) three copies of the 21st chromosome.
This additional genetic material alters the course of development and causes the characteristics associated with Down syndrome. 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 – although each person with Down syndrome is a unique individual and may possess these characteristics to different degrees, or not at all.(3)
For many new parents, however, the first time they meet someone with Down syndrome is when they are told that their child has it. This can be a very frightening time. Some parents mourn the loss of what they thought parenting would look like.
Some parents get nightmarish visions of institutions and doctors and social ostracization. Many feel like they are facing the unknown without directions or support. This is why so many are working to raise awareness about what Down syndrome is, what it means for children and their families, and what to expect as new parents.
The general public also needs education about Down syndrome. Most people only know that individuals with Down syndrome look slightly different than the rest of us. They know little about the challenges, differences, and abilities of people with Down syndrome. They can, without meaning to, say hurtful or insensitive things about people with Down syndrome, or avoid them altogether.
Even though people with Down syndrome might act and look similar, each person has different abilities. People with Down syndrome usually have an IQ (a measure of intelligence) in the mildly-to-moderately low range and are slower to speak than other children.
Some common physical features of Down syndrome include:(4)
It’s important to note that Down syndrome is not a disease. It is a syndrome or a condition, which means it is inappropriate to say that someone “suffers from” or is “afflicted with” Down syndrome. People simply have Down syndrome.
The short answer is that we still do not know. The only thing that scientists have been able to determine is that the chances of having a baby increase from 1 in 700 to 1 in 100 once a woman is over 35-years old.
However, since the majority of births happen before a woman is 35, over 80% of children with Down syndrome are born to mothers younger than 35. There is no definitive research showing a link to environmental factors or to activities of the parents before or during pregnancy.(5)
There are three types of Down syndrome. People often can’t tell the difference between each type without looking at the chromosomes because the physical features and behaviors are similar.(6)
In addition to intellectual and developmental disabilities, children with Down syndrome are at an increased risk for certain health problems. However, each individual with Down syndrome is different, and not every person will have serious health problems. Many of these associated conditions can be treated with medication, surgery, or other interventions.
Some of the conditions that occur more often among children with Down syndrome include:(7)
Despite these challenges, what many people do not realize is that people with Down syndrome can and do live full, happy, and productive lives. In the past, children with Down syndrome were not educated properly and were extremely limited because of it.
But, many children these days are fully integrated into mainstream classes (some with accommodation or help). Most graduate from high school and many go to college.
Many employers have found that people with Down syndrome make loyal and enjoyable employees, and there are large numbers of individuals with Down syndrome who are living independently, enjoying productive lives, and even getting married. When invested into, people with Down syndrome can flourish just like any other person.
Most people become interested in raising awareness about Down syndrome when someone they love is born with it, or they become passionate about educating others after meeting an individual with Down syndrome. There are tons of ways to get involved.
First, a quick note about language.
Words are important, and the way that we talk about people with Down syndrome is vital to improving how they are received and treated by society. The archaic word "retarded" should never be used to describe a person, regardless of their disability. Do not let your friends, co-workers, or family members use this word unchallenged, even in jest. It is not funny and is never appropriate.
People with Down syndrome should always be referred to as people first. Do not say “Down’s kids,” but rather “children with Down syndrome.” Also, when referring to others in relation to those with Down syndrome, use “typical” or “typically developing” instead of the word “normal.” For example: John has Down syndrome, but his brother Xavier is typically developing.
This might seem like a minor issue, but insisting upon treating those with Down syndrome with the dignity they deserve will go a long way toward making our society more welcoming, and may open doors to discuss why these things are important.
There are also thousands of national and local organizations that you can support or look to for resources. One of the best places to start is the National Down Syndrome Society, which provides a lot of valuable information for anyone interested in learning more about Down syndrome.
Below is a map of the local affiliates of NDSS. Some affiliates are large operations and some are small neighborhood groups. Although they perform a variety of services, nearly all have a parent support component.
Affiliate services and programs may include: new parent support and education, family meetings, sibling and grandparent support, recreational activities, lending libraries, helplines, regional conferences, partnerships with Down Syndrome Clinics, training for medical professionals and educators, Advocacy and Buddy Walks.(8)
March 21st is World Down Syndrome Day. March 21 was chosen because when it is written numerically, it is 3/21, which is a reminder that individuals with Down syndrome have 3 copies of the 21st chromosome. There are events, gatherings, parties, celebrations, and more all over the world on this day.
Many articles and blog posts will be available on social media in the days leading up to March 21. Share these articles with your followers on social media. Attend a local event. Volunteer with a local organization.
October is Down Syndrome Awareness Month. There are thousands of activities happening all over the country during the month. This is usually when the famous BUDDY WALK™ happens. Look for a walk near you.
You can participate by just showing up and walking. You can register ahead of time and buy shirts and other fun stuff. Register a team. Organize a fundraiser. Walk in honor of someone you love with Down syndrome and have signs made with their picture. Your participation is limited only by your imagination.
If you are a new parent of a child with Down syndrome, consider just attending one of these events with your child. You will meet other parents that can be a valuable lifeline and resource when you feel overwhelmed and alone.
The ribbon colors for Down syndrome awareness are blue and yellow. You’ll see a lot of shirts, banners, and signs in these colors during March and October. If you are considering doing a giveaway or a fundraiser, we can help you design wristbands that help raise awareness.