The Gift of an Extra Chromosome

March 21 is World Down Syndrome Day. This date (3/21) was chosen because Down Syndrome is caused by a third copy of chromosome 21. *Most people have 23 pairs of chromosomes within each cell in their body, for a total of 46 chromosomes . A person with Down Syndrome has an extra copy of chromosome 21 which means their cells contain a total of 47, this changes the way the brain and body develop. Down Syndrome is also known as Trisomy 21. 

The reason this day is important is because it raises awareness. Many people don’t understand conditions that don’t affect them. Raising awareness of conditions such as Down Syndrome can make people understand exactly what it is and may help them to be more comfortable and accepting of those who have it. 

People who have Down syndrome have similar physical characteristics such as almond shaped eyes that slant upward, flattened bridge of the nose, smaller than average hands and feet, small ears, a smaller mouth and larger tongue, to name a few. 

Often children with Down Syndrome reach their developmental milestones a bit later than peers who do not have the condition. The children I have worked with over the years who have Down Syndrome were often alike in the way of being very social, affectionate and stubborn but like anyone else, they are all unique individuals with their own personalities, likes and dislikes.

Within the 23 years that I have worked in special education, I have had several students who have Down Syndrome. I can honestly say that some of my best work days and biggest laughs have been days spent with some of these students. 

The first student that I worked with who has DS is now a man in his late thirties. I am fortunate enough to still have him in my life. I get visits from him from time to time, a few months ago, I took care of him while his mother was recuperating from surgery. This “kid” as I still see him, is such a loving person. Every time he sees me, he is as happy to see me as I am to see him. There have been many times over the years that months or even a year would go by and we hadn’t seen each other and he never forgets me. He always greets me with a big old bear hug and says “Dealahhh”(which is how he pronounces Sheila). He loves to be silly and play jokes, always smiles and has the best, most contagious belly laugh followed with a face palm and a “ohhh nooo”. He is definitely one of the people who made me fall in love with the special ed community. Another student I had was a girl who I can only describe as a rollercoaster. Her moods were up & down continuously. She too had a great sense of humor, finding so many things quite funny. She loved to joke around and would get so excited, she’d put her hands behind her, twisting her wrists and flailing her fingers. Although she was developmentally delayed in some areas, she was a strong reader, fairly good at math and loved to play games and be social. Other times she showed anger an frustration by shutting down or acting out. She often made up stories of things that were not true. She wasn’t lying, she was simply making up stories about how she wanted things to be. Such as how her dog had puppies or she was getting a new dog, the next day, she had 5 new dogs when the truth was, she didn’t have any dogs. She had quite the imagination. 

This year I have an eighth grader who has Down Syndrome. He’s very social, sometimes too social. I have known him for many years. I met him and worked with him a little when he was in elementary school and now he is a student I work with daily. For the most part he is pretty happy and a joy to work with. He makes me laugh. Every day when we do math, when he gets a problem wrong, I will point it out and he will argue with me about how he is right and I am wrong. Once I show him why my answer makes sense, he’ll say “OHHHH, that’s right”. 

This year he has done a few minor things to try to get attention from his peers. Although the negative or inappropriate behaviors need to be addressed, secretly, I love that he is acting like a typical middle schooler, pushing the limits to see what he can get away with. The best part is that when he is questioned about some of the decisions he has made, he is honest and says things like “I did that because I wanted to be cool”. He also often rushes through his work or will write the same answer to each question, just to get it done so that he can have free time to listen to his music. Some days the behaviors can get frustrating but most days, he just makes me laugh. I do love his positive attitude when he talks about his family and friends. He has no self esteem issues either. He often toots his own horn. He even told me that He is more special than me because he has an extra chromosome and I don’t.  I love that!

Having the people I have talked about in this blog, in my life has enriched my life in many ways. Working with these individuals has been such a blessing. 

So if you are one of those people who are afraid or uncomfortable by people with disabilities of any kind, educate yourself, most people who are afraid or uncomfortable have fear of the unknown. People fear what they don’t understand. People with special needs, like anyone else, have feelings and abilities. They often can feel your apprehension. Speak to them, not at them. Don’t talk about them to someone else, like they are not there, when they are in the room. Don’t yell like they are hard of hearing, why do people do that? Include them in whatever is going on, invite them to join you. You just might find that these people may bring more joy and importance to your life than you ever could have imagined.

March 20 is World Down Syndrome Day. It’s a day when many people wear mismatched, brightly colored or silly socks. The socks are to raise awareness and celebrate diversity. The idea of wearing crazy socks originated because chromosomes are shaped like socks. The mismatched socks symbolizes that everyone is unique and different, just like the socks themselves. This was originally called the “Lots of Socks campaign”. It encourages people to wear socks that get noticed to start conversations about Down Syndrome. 

So come on everyone… Let’s ROCK OUR SOCKS!!!!!

*clevelandclinic.org