Well, it is that time of the year, where we reach out to our friends and community to let you know or remind you about a day of awareness that means something to our family. The day is March 21, and on this day the world recognizes World Down Syndrome Day. Yes, World Down Syndrome Day (WDSD), a day to celebrate individuals who so happen to have an extra chromosome that makes them the unique, beautiful, and amazing human beings they are. WDSD was first observed in 2006 in several countries, but it was on December 19, 2011, that the United Nations General Assembly declared the 21st of March to be WDSD, making we guess you can say the first official day of observance to be March 21, 2012. The theme for WDSD 2024 is a call for people around the world to “End The Stereotypes”. The message on the UN WDSD page reads as follows, “End the stereotypes - A stereotype is a set idea that people have about what someone or something is like. Stereotypes can be positive, negative or neutral, but they are often inaccurate, or simply wrong! Stereotypes are often based on limited information or personal experience. They can be reinforced by the way something is represented in the media or by cultural messages. Once formed, a stereotype can be difficult to change. For people with Down syndrome and intellectual disabilities, stereotypes can stop us from being treated like other people. We get treated like children, we are underestimated and we are excluded. Sometimes we are treated very badly or even abused. For World Down Syndrome Day 2024, we call for people around the world to end the stereotypes.”
On WDSD it is encouraged to wear fun/colorful socks, to bring attention to yourself so you can start the conversation about what is Down syndrome (DS), to share awareness, and to show your support. What a great excuse to get yourself noticed!
Do you know anyone who happens to have an extra chromosome? We do! and she so happens to be our high spirited seven-year-old daughter, Chloe. What is Down syndrome (DS)? And why is it called DS? Good questions and questions we had after we were given the news about Chloe's diagnosis.What is DS? Simply put, a person without DS has 23 pairs of chromosomes, which makes up 46 chromosomes. A chromosome is a thread-like structure that packages DNA found in the nucleus of each cell. For a person who has DS, they have an extra copy of chromosome 21 (instead of two they have three copies of chromosome 21) causing them to have 47 chromosomes. Hence why the date, March 21 was chosen to celebrate WDSD, the third month (March) to reflect three copies, the day (21st) to reflect chromosome 21. There are three types of DS - Trisomy 21 (nondisjunction), Translocation, and Mosaicism. Chloe has Trisomy 21, which is the most common of the three types. Because of the extra chromosome certain growth and developmental/learning delays do occur, along with some or no facial characteristics, of course varying for each unique individual.
Why is it called DS? In 1965, the name that was previously used to describe the condition was changed to the last name of the British physician, John Langdon Down, who initially identified the condition, but did not discover it, (around 1862) to a group of people due to their similar facial/physical characteristics, not because it was thought to be a condition to look “Down” upon. The change was made since the prior name was thought to be offensive and even today there are some who favor the condition again be renamed, since the word “Down” can be perceived negatively. With this said, it is a condition that needed/s a name, a label, to help people understand & compartmentalize, just like the words disabled, special needs, typical, normal, and all the other labels used to describe something or someone. Since learning about Chloe's condition, we see words very differently. Honestly, we see a lot of things differently and realize we do not like labels, because to us they seem to set limits, which we see no limits to what Chloe can or will be able to do. As noted on the National Down Syndrome Society website, under preferred language, in the United States the preferred usage of the condition is Down syndrome, not Down’s syndrome. Here is a link to learn more about the preferred language when referring to an individual who has DS, https://ndss.org/preferred-language
Parents/Advocates, Family/Friends, Educators, Medical Professionals and DS organizations, continue to do their part to educate on how individuals with DS are just like everyone else, more similar than they are different, and how early intervention is key and extremely important. Some examples of early intervention would be Speech, Physical, and Occupational Therapy. Educating on how individuals with DS deserve all the opportunities and respect that everyone in this world deserves is a must. Sharing how they are individuals who feel ALL emotions, dream, inspire, learn, teach, basically do about anything they set their mind on (just like everyone else) with the love and support of others. With this said, there is a lot more work that needs to be done to enlighten society about DS and what it entails. For the past seven years it has been our experience that we, along with the folks who work and care for someone with DS, need to keep in mind that having an extra chromosome can bring on challenges beyond their control at times. This is where patience and understanding are needed and the realization that individuals with DS are working harder than most of society while trying to navigate through this ever-changing world. In our opinion, individuals with DS exude courage and perseverance daily, hands down!
Does Chloe know she has DS? Even though we have had the discussion about her having DS, it really has not registered with her and that is OK. We know that Chloe realizes she needs extra support to complete tasks compared to her peers. The reason we know this is due to the times we see her get frustrated with a task or when she hesitates to do a task for fear of failing. When this occurs, we find providing frequent positive feedback with building up her confidence to try again. Praise and positive reinforcement are what motivates Chloe, and we love encouraging her and cheering her on to keep going and to not give up!
Our Chloe, as mentioned before, is high spirited. Her verbal communication has grown tremendously, and it is so great to hear her use new words and phrases, like “I’m busy” or “totally”. She continues to have a great sense of humor, is extremely helpful, and makes us laugh every day. Not to mention, she encourages us to hug each other or to hug other people we see, friends or family. She loves movies, YouTube videos, Chick-fil-A French fries, Dairy Queen vanilla ice cream, and loves cheering for the University of Michigan, GO BLUE! She is a good dancer, enjoys music, and did we mention she is a bit bossy. She is routine-oriented, loves to read and to be read to, she loves her dresses, purses, and pretend play. She still is the first person to say Hi! when approaching anyone. She is a natural greeter! This past year she started helping with carrying the offering basket at mass and she does a great job collecting. For the 2023-2024 school year, Chloe started attending The Notre Dame School of Dallas. On the school’s website it states, “No Limits, Just Possibilities! Notre Dame School, recognizing that each person is created in the image of God, educates students with developmental disabilities and facilitates their integration into society.” So far, we have appreciated what her new school has to offer and the fact she really enjoys going to school. Check out their social media sites, and you may just see Chloe with her big smile. Here is the school link, https://www.notredameschool.org/ Chloe continues to take an adaptive ballet class with Texas Ballet Theatre, and she started Therapeutic Horse Back Riding in 2023 with Equest, which she loves. She keeps our life very interesting. She loves her big brother Christian and enjoys the times she gets to spend with him. We love them both immensely!
We have high expectations for Chloe, and we know she is going to do incredible things, just like she has been doing since the day she was born. We will continue to advocate for her and encourage her to be herself and to never give up, no matter what!
So, in honor of World Down Syndrome Day held on March 21 every year, as mentioned above, show your support and wear fun/colorful/mix-match socks, or whatever socks put a smile on your face! Our family will be wearing our colorful socks, and we hope you all will too. If you like, post your pictures of you rocking your socks. We will use the pics in hopes of creating a video. Here’s the link to last year’s 2022 video –
See an example of a sock pic below.
Below are a few entertaining and enlightening videos/links to view 😊
Excellent video and completely agree with the title - NOT SPECIAL NEEDS
The video created embedded in this page link is colorful and honest in its message (adult content):
https://ndss.org/news/ndss-partners...ternational-organizations-launch-assume-i-can
Down syndrome answers: https://cdss.ca/awareness/down-syndrome-answers/
Informative/Learning links:
https://www.worlddownsyndromeday.org/https://www.un.org/en/observances/down-syndrome-day
https://www.worlddownsyndromeday.org/end-the-stereotypes
Thank you for reading and learning about DS. Please feel free to share this information. Mark your calendar so you remember to Rock your Socks on March 21 every year!! Please post your crazy sock pictures below!!
Go Blue!!
