Wednesday, February 22, 2023

Down Syndrome: Nothing Down About It!

For me this child is a grace; she is my joy. She helps me to look beyond all the failures and honors, and always to look higher. God has given her to us and we must take responsibility for her, wherever she is and whatever she will become. Without Anne, I could have never perhaps done what I did. She gave me the heart and the inspiration. --Charles De Gaulle, the WW2 French general and president whose youngest child had Down syndrome)

Sara teaching me how to braid a napkin first before I could braid the bread. She has her own bread business--the best bread you could ever imagine.

 As a child, I lived across the street from Joey, a young man with Down syndrome. Since I was quite young, I noticed he went on a different school bus than I did, but he was thoughtful and laughed a lot. He always tried to help everyone in the neighborhood, like bringing in groceries or moving furniture. Often, he would seem to appear when we needed help in the yard or someone just needed a smile. I could not always understand his words, but I remember I wanted to. My child brain was saying, "Who is this person who is so kind and free of the concerns of everyone else around him?" More than anything, he was happy and constantly smiling.  He was everyone's friend. We all loved Joey.

Later, when I was in high school, I volunteered at a school for children with special needs because I wanted to know others like Joey. The headteacher told me I was too lenient and not rigid enough with the students--that I let them get away with too much. She said, "They have you wrapped around their finger." But I did not give up on my childhood intrigue with people with Down syndrome. They have magically kept appearing in my life. Perhaps, it is because I was the one who needed to learn about what love means, as Charles De Gaulle did. I know having a child with autism has made my family's life better. We always say, "There is a special window for us that we can see through when we meet people." 

Since I have lived in eight countries now (and China twice), I have met and been friends with many Down syndrome people from other cultures, but the one I have known the best is a young 29-year-old woman named Sara who has a bakery business and serves food at a school cafeteria. She is resolutely independent and wickedly funny. Last summer, I asked her to be a leader at a Girls' Ranch I direct when we had our first Down syndrome camper. She elevated the camp to a higher level of fun, humor, and love. I can honestly say that all of the other typical campers embraced and loved her.  Several said, "I have always been separated from the special needs kids. They always were in another classroom. Now I will reach out more when I see them because I know I can be friends with them."

I met Sara when she was about three months old when I met her dear mom so I have known her all her life. My kids grew up with Sara. For many years, my husband who is a perinatologist has had a photo of Sara in his office when he counsels patients who will have a child with Down syndrome.  She is the poster child of how wonderful life can be to have a child with Down syndrome--how a family can be enriched and learn to love in new and unimaginable ways. Sara is the eighth of ten children in a family that knows how to give with many layers of love. 

In the last eight years, I have taught art to special needs students in both the Middle East and China.  The students, ranging from about age three to 33 have shown me what giving with all your heart means--whether it is their smile or bequeathing an art volume of all their drawings to me.  The act of giving of one's self is purely intuitive; they just know how to give joy without asking for anything in return. It is preposterous to think that they are all the same if you know one Down syndrome person. Some are quieter, others more outgoing. but they all know how to give and love--without any strings attached. 

One of the reasons Charles De Gaulle's story inspires me is that at the time Anne was born in 1928 in France, there were few people who kept these children at home. Until the early 19th century, many of them only lived until they were about ten years old.  Later, however, many people still did not bring them on family outings or outside the home with them.  De Gaulle challenged the norm of the time and refused to give up his daughter to a care facility or hospital. Instead, he even took her to Lebanon and other countries to live before he was a WW2 general. Somehow he realized that the bond they shared was enabling him to be a better person than he would have otherwise been. When she died at age 20 after the war, he put her framed photo in the back of the car. In 1970, it was this photo that saved his life when someone tried to assassinate him. The frame blocked the bullet! He always said she was his angel. 

De Gaulle on the beach with little Anne in the early 1930's 

I am heartened the world is (but we have a long way to go) bringing these children and adults to the forefront--to not only understand what we can give them, but what they can teach us. Of course, our pace of life will slow down when we interact, teach, and work together. We will need to speak slowly, be patient, and repeat a direction or two. But it is oh, so worth it. I wish everyone could have Joey live on their street or grow up with Sara or Mary. Living in this world is more joyous and fulfilling when we have all kinds of friends who are different than us. 

These two grew up together--Sara and one of my sons. He took her to two proms. When his younger brother brought her, she asked him, "I wish Jonathan were here. He is more handsome than you." 😆


We had a painting class together and this is her picture. She loves to create.

Sara being a leader at camp

I really liked the theme of camp, We Are One.

        Mary, our Down syndrome camper, and her sister, Elizabeth, singing Baby of Mine from Dumbo

Mary coloring with one of the campers
When I left China, this student gave me all his drawings. And he would not let me refuse his generous gift. 

Always hugging...