World Down Syndrome Day aka Son’s Day is just around the corner and our family is ready to celebrate, especially my son. He loves attention and, on this day, the focus on him doubles.
If you have read my book, you know how Son’s Day came to be. Long story super short, many years ago my son shared his disappointment when he questioned why there is a Mother’s Day and a Father’s Day but no Son’s day. He boldly exclaimed “No fair!” So, we gave in and created one. March 21st, the same day as World Down Syndrome Day, is now known as Son’s Day. It was a win/win.
Many people are familiar with Down syndrome but don’t know what it is and don’t feel comfortable asking. I’m an open book, literally…after all, I wrote a book sharing the hilarious and raw details about how a tiny extra chromosome changed my life. Have you heard of it? It's called "Big People Don't Pee in the Park: A Mother and Son's Journey with Down Syndrome."
Like any mom who brags about their kids, I enjoy discussing my son whenever I can, but it wasn’t easy for me at first, because it meant having to squeeze in the minor but major detail that he was born "different". There was no hiding my son’s diagnosis, his features are visible, and everyone knows the minute they meet him. For this reason, I decided in the beginning to address the elephant in the room before said elephant, had a chance to get comfortable, just like I will do when my blind eye begins to wander, but that’s another story. I am passionate about educating anyone who wants to listen. Now, let’s face it, with my voice I don’t give people much choice, they get to hear me whether they want to or not. I’m a storyteller though so they usually enjoy it…or pretend to.
So, what is Down syndrome? There are three types, my son has the most common, Trisomy 21 or T21. 95% of individuals with a Down syndrome diagnosis have this type. Basically, in every cell of my son’s body he has an extra chromosome. Make sense? It didn’t to me either, but then that’s probably because I skipped health or science or biology, whichever class taught us these things.
Let me break it down. Our bodies are made up of cells and in each cell, there are 23 pairs that make a total of 46 chromosomes. Trisomy 21 occurs when in the 21st pair there’s a split that creates an extra chromosome making a total of 47 chromosomes. At a high level, you may have heard that people with Down syndrome have an extra chromosome, and yes, that's what Down syndrome (T21) is. Clear as mud? I'm glad you’re still with me.
I like to say my son’s extra chromosome is the extra ingredient that makes him extra fun, funny, and gives him the ability to forgive more easily and love unconditionally.
Most people recognize that individuals with Down syndrome (T21) tend to have certain physical characteristics: almond-shaped eyes, low muscle tone, longer tongues or smaller mouths, spaces between their toes, and possibly a shorter stature with smaller hands and feet. It's also commonly believed that these individuals have an intellectual “disability.” To be honest, I feel about that label the same way I feel about the idea of a mayonnaise and peanut butter sandwich—just not a fan. The truth is, we all have unique intellectual abilities, whether we have an extra chromosome or not. I wouldn't describe myself as particularly intelligent, but my son, in many ways, is much smarter than I am. He knows how to navigate his phone and other electronics far better than I do, can memorize movie lines more quickly than I ever could, and a single word can spark a connection in his mind to something completely unexpected—turning our conversations into a sort of mystery puzzle. It’s like the “7 degrees of Kevin Bacon” concept, where a simple connection leads to an entire web of discoveries.
Soo, when it comes to Down syndrome awareness, what do I want you to know?
To other parents on this same journey, my message for you is not to compare your child to other children with Down syndrome. Just like any child, our children's accomplishments will not look the same as other children with the extra chromosome. Instead of getting discouraged (guilty!), acknowledge and celebrate your child's achievements. To be candid, I often wish my son had better speech and didn’t struggle with his comprehension. But that is not who he is. Instead, he excels in other areas and that is where we put our focus. Bottom line, there is reason to celebrate EVERY child so find your child’s strengths and expand on them.
To everyone else, this is what I want you to know. First, look beyond any “disability” and see the abilities of these incredible individuals. They live productive and meaningful lives. They are capable of more than we know, so we can’t allow others to set limitations on them. Individuals with Down syndrome have wants and dreams just like you and me. They want friends, they want to be acknowledged and talked to. Not baby talk, especially once they become adults, but a conversation, even if it’s just noticing something they are doing or asking them what they like to do. In our family, an extra chromosome is not a pass to get out of doing things like chores and it does not give permission to get away with unacceptable actions or behaviors, like not using manners. And don’t assume they aren’t able to participate in social activities, instead include them and even encourage them. Invite them to birthday parties, invite them to school dances, invite them to go hang out. As adults, they often lead lonely lives. Together we can make miracles happen as we help these individuals mainstream into our society and reach their greatest potential.
Lastly, despite the ridiculous suggestions from certain parts of society that view these individuals as a burden, people like my son make our lives better in many ways. They need to be seen for this.
I have always been passionate about advocating for the Down syndrome community and have felt love and support from those close to me. Down syndrome awareness day and month allow me to share what I want others to know.
Here’s the final lesson in this message: Can you guess why we celebrate World Down Syndrome Day on March 21st? If you guessed it’s because the third chromosome is in the 21st pair, ding ding, you’re correct! March 21st (3/21) is the day we come together globally to educate the world on what Down syndrome is and how individuals with Down syndrome need to be valued in their communities.
I hope this has been helpful. I welcome any questions you may have. I’m here to help you help and understand us.
With that, “Life is short so make each day count…like an extra chromosome.”
-Wendy Hooton
Comments