With a simple glance, people may see a typical family when I’m out with my husband and two children. Given a lingering moment, most strangers notice that our family is not like everyone else; something is different.
My daughter has Down syndrome, which causes distinctive facial features like a flat nasal bridge, low-set ears, and a protruding tongue. At age 17, Jaycee stands at under 5 feet tall. She often has her tongue towards one side of her mouth, making chewing motions, and vocalizing. It results in an odd noise that people in stores or restaurants turn to try to locate. I often tune out that familiar sound. In public, it’s a reminder that others are not accustomed to it.
Young children tend to notice my daughter when she is seated in her wheelchair. Jaycee has a long history of heart and lung issues. When we go somewhere that involves walking long distances, Jaycee needs her wheelchair to participate in what our family is doing. When Jaycee uses her wheelchair, children often do a double take. They may not understand Down syndrome or heart defects, but children know that a child in a wheelchair is odd.
The truth is that Jaycee is different. I understand the looks and puzzlements that some express with their body language. Early on, the stares and comments bothered me, but now I know it simply goes with the territory. I only hope people can look beyond the outside characteristics that can be seen.
The Down syndrome diagnosis is not the summation of Jaycee. If people only see her differences and needs, they will never see “her.” They will never get to know who Jaycee really is.
March 21st is recognized as World Down syndrome day.
The date 3/21 is symbolic of the three copies of chromosome twenty-one found in those with Down syndrome. On this date, I make an effort to share about Down syndrome and help others think differently about the diagnosis.
To me, Jaycee is my daughter first. Yes, she has some delays in development that affects her daily life. However, she is full personality. Her favorite word is “butt,” and can cleverly work it into nearly every conversation. She loves to tease and joke around with people. When her favorite band, Skillet, is playing in my vehicle, she will crank the volume, bounce off the seat in excitement, and sometimes play an air guitar.
These are the fun things about Jaycee that people will miss if they aren’t willing to spend a few minutes getting to know her. It does take some effort to engage with Jaycee. Her speech is limited, and she typically does not initiate conversations. If you know what to say to her, she will light up and comment. A compliment on her clothes is one way to break the ice with Jaycee. If you bring up Skillet or her favorite cousins, she will have something to say. If you take her shopping at the local boutique or Dollar Store, Jaycee will let you know her likes and preferences.
Jaycee is a person with Down syndrome. Not everyone with this diagnosis will be exactly like her. Others may be able to speak in full sentences or have no need for a wheelchair.
For World Down syndrome Day, I encourage you to get to know those around you who have Down syndrome.
Look around in your churches, schools, and communities. You may be missing out on an opportunity to meet a person who can enrich your life with friendship and love.
Evana is a wife and mother of two children. She enjoys serving in her church’s special-needs ministry. Evana is also a pediatric speech-language pathologist and serves children with autism, feeding disorders, and other developmental delays. You can connect with Evana on Twitter, Facebook, and her blog, A Special Purposed Life. You can also read more about her family’s story in her book, Badges of Motherhood: One Mother’s Story about Family, Down syndrome, Hospitals, and Faith.
