Thoughts

In 1989 my husband and I were blessed with a son, Jordan, who has Down syndrome. [As of this writing] Jordan is now seven years old. He has accomplished much and will continue to do more. His learning is truly exciting, because it takes place at a pace that allows me to watch it and coax him to be his best.

On occasion, I have experienced the uncomfortable feeling that I was being overly optimistic in my eternal confidence both about who Jordan is and about how the world will receive him. I have been wrong about neither. Recent studies on the development of the brain in children have given credence to what many of us have suspected: How we raise our children has far more to do with their outcomes than was ever believed. Given the delayed physical development of many children with Down syndrome, without early intervention these windows would be totally closed to the child's learning system by the time he or she is able to access them. Early intervention has changed that. Knowing what we know now, there is every reason to expect a significant increase in the difference between what our children have been predicted to learn and what they do learn. Even more exciting than what children with Down syndrome can learn is what they can teach.

One of my loveliest parent moments came from friend of Jordan's. She was visiting and the children were playing with finger paints; hence many visits to the powder room for hand-washing. My powder room is decorated in original photos of previous calendars. There are over 20 photos of children displayed on the walls and vanity of this small room. Kristina, who does not have Down syndrome, noticed a similarity in the faces of some of the children. Gently, she said, "I know Jordan doesn't have a sister, but the one girl in this picture sure looks like him...is she related?" I explained to her that both Jordan and Emily have blond hair, blue eyes and Down syndrome and perhaps that is what makes them look similar. She asked what Down syndrome was and I explained that for some children it made learning a bit difficult. She immediately deduced that Jordan didn't have that problem since he was one of the best readers in their kindergarten class. Finally, I explained that Down syndrome often made speech difficult for kids and she nodded in understanding. She smiled brightly and said, "I know. Some kids have a hard time understanding when Jordan talks, but I can understand every word he says." To which I said, "I know, sweetheart ...because you listen with the ears of patience."

It wasn't Kristina who had been taught by Jordan — it was me. My fears and apprehensions about how the world would treat my special son were based on a cynicism and distrust neither felt nor recognized by Jordan. By not recognizing it, he does make it disappear. Not all of his interactions with other children are pure and free from teasing, ridicule or manipulation. But neither are those of my other sons. I continue to believe that the greatest blessing I receive each day as the mom of a child who is different is just that ... my days are different. The world for all who come in contact with a child with Down syndrome is colored a different hue from what it would be without them. Perhaps that is why we use black and white photos and hand paint them to produce the images in Beautiful Faces...color film just can't capture the unique quality of the very custom colored world in which our children live!