Chloe Jane Says to Rock Your Socks on March 21!!!
Hope you all are doing well and life is being good to you.
I am writing to let you know about a particular day of awareness. I know there is a day for everything, from National Donut Day (June 7) to Do a Grouch a Favor Day (Feb 16). Well, March 21 is known as Absolutely Incredible Kid Day, Common Courtesy Day, and also 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, bright, and amazing individuals they are. Some may even say Up syndrome, which I am all for. 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 I guess you can say the first official day of observance to be March 21, 2012. As seen on the WDSD website, ““We Decide” All people with Down syndrome should have full participation in decision making about matters relating to or affecting their lives. Effective and meaningful participation is a core human rights principle supported by the United Nations Convention on the Rights of Persons with Disabilities (CRPD).” On this day, it is encouraged to wear fun, silly, colorful socks – so be sure to show your support and Rock your Socks on March 21!!
Do you know anyone who so happens to have an extra chromosome? I do, and she happens to be my AMAZING three year old daughter, Chloe. What is Down syndrome (DS) ? And why is it called DS? Good questions and questions I had after we discovered Chloe so happened to have an extra chromosome. 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. I refer to it as T21 and the term I prefer to use when discussing her uniqueness. A simple explanation is - a person without DS has 23 pairs of chromosomes, which makes up 46. For a person who has T21, this means there is an extra 21st chromosome, causing them to have 47. Hence why WDSD is celebrated on March 21 – 21st day of the 3rd Month. Due to the extra chromosome certain growth and learning delays occur, along with some or no facial characteristics, of course varying for each individual. In 1965, the name that was previously used to describe the condition was changed to the last name of the doctor, Dr John Langdon Down, who initially identified the condition (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” on. It’s a condition that needed a name, a label to describe, 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, I definitely see words differently. Actually I see a lot of things differently and realize I do not like labels, since to me they seem to set limits, which I see no limits to what Chloe can or will be able to do.
Parents/Advocates, Family/Friends, Educators, and Medical Professionals, have pushed to educate on how individuals with DS are just like everyone else, more similar than they are different, how early intervention is the key and so extremely important. They are individuals who deserve all the opportunities and respect that everyone in this big world deserves. 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 and also by themselves. With this said, there is a lot more work that needs to be done to educate society about DS and what it entails. I continue to learn every day.
My Chloe, as mentioned before is Amazing. I constantly tell her- You are AMAZING, You are INCREDIBLE, You are REMARKABLE, You are WONDERFUL, You are BEAUTIFUL, You are Sooo SMART!! She is truly all of these adjectives and more. Her vocabulary is growing every day, she is very funny, she loves her movies and shows (she is a big fan of Peppa Pig), and we can hardly keep up with her. She is a pretty fast runner, she loves to dance, sing, paint, color, be read to, and loves to play with her tea set. She is definitely my second purpose in life. My son Christian, who is 25, was my first purpose and he loves his little sister very much. She loves him too!
I have a lot of hopes, dreams, and expectations for Chloe, and I know she is going to do great things, just like she has been doing since the day she was born. I also have a lot of hope and pray for a more kinder world, a more informed world, a world that sees the similarities in each other instead of the differences.
So in honor of World Down Syndrome Day, March 21, as mentioned above, the common thing to do is to wear fun socks, crazy socks, colorful socks. Our family plans to wear some. I hope you all will too. If you like, send me pictures of you rocking your socks, via email or by text. Check out the informative links below and please share with your friends and family.
Here are a few entertaining and enlightening videos to view:
I found this video of kids asking 2018 Special Olympics USA Games Ambassador, Devon Adelman questions about herself. https://www.youtube.com/watch?v=zTE4OHpC2EU
This following link is an informative website about DS-https://www.ndss.org/
Thank you for reading and Rock your Socks on March 21!!
- Matilda Ayala Fousie