There is no simple answer
The other day, a friend asked me how Down syndrome manifests itself. Manifest, as a verb, creeps up behind me like a dark blanket and smothers everything that William is. I don’t want to explain it because the answer doesn’t describe William. William isn’t Down syndrome; he just has it.
To manifest or not to manifest
Wondering how Down syndrome manifests itself is an essential question. Maybe some people need an answer as a starting point before they can push beyond the scientific façade and see the real person behind it. Is it best not to take the question personally and try to explain what Down syndrome is in medical and technical terms? Down syndrome manifests itself in mental retardation of many different degrees. It manifests itself in one’s appearance and various anomalies that occur as a result of having an extra chromosome. This answer makes my skin crawl. It is no way to describe someone I love.
Manifest: a quality, a feeling, acts and appearances
William’s approach to the world, which might be unique because he has Trisomy 21, is a combination of who he is, where he is, and what the circumstances are. To manifest means to show a quality or feeling by one’s acts or appearance. There is no simple answer to how Down syndrome manifests itself. One doesn’t exist.
What color are your eyes?
How Down Syndrome manifests itself in one person is never going to be the same in another. People with Down syndrome may have similar physical traits, but this has nothing to do with the way they act and feel. When people in my community learn that I have a son with Down syndrome, they often say, oh, I know Jeremy or Forest. Jeremy and Forest both have Down Syndrome, but they are nothing like William in the same way that someone who has blue eyes like me doesn’t have the same personality as I do.
Who not how
It is more important to understand who William is than to understand how Down syndrome manifests itself. To understand William, you need to crawl into a different perspective. He pulls back my throttle until I settle into his pace. He steers me into vigilant, mature, compassionate, centered, and mindful waters where we putter along with the current. I wonder if his world is timeless. His way of moving through life is to taste it, chew it, ponder it, and absorb it before he digests it.
How does my impatience manifest itself?
The other night as he played the bells in the Temple Band Christmas concert, the snow fluttered down and coated the roads with a perilous layer of slush and ice. Before the weather went bad, his grandfather and I had promised to take him out for dinner. I couldn’t bear to change the schedule on him, but the two places we wanted to go were closed, so I had to drive him home. He stomped his feet, growled disappointment, and resisted getting in the car. These moments of resistance make me want to drag him into the car, to hurry him along because I am cold and tired. I think, and sometimes say, please don’t do this to me, William, just get in the car. I suppose that is how Down syndrome manifests itself in me.
Acts and Appearances
When we got to Red House, where he lives on Plowshare farm, it was dark, which threw him even further into the unknown. It was cold and icy, and I wasn’t sure what to do until a woman showed up and told me that everyone was eating dinner at Jovis, the house next to William’s. The standard trajectory of a Sunday evening at Plowshare Farm had taken yet another shape.
Understanding mindset to understand how Down syndrome manifests itself
William sat frozen solid in my car. He took on his I-am-not-going-to-budge stance. I took a deep breath and exhaled slowly. I pulled myself into his mindset. He wanted to stay with his grandfather, with me, to eat at the restaurant. Then he shifted gears to go home and have dinner at his house. The snowfall increased while his brain had to catch up to the next transition of eating dinner in yet another place. I told him that I knew how hard it was for him, guided him gently to Jovis and drove away.
I cannot make life easy for William because life is hard. It is full of transitions that most of us push through without noticing. How does Down syndrome manifest itself? I don’t know. All I can tell you is who William is, that he laughs a lot, he likes to trick people and make them laugh. He skis, listens to music, stacks wood, rides his bike and rides on the back of his father’s motorcycle. He’s annoying and kind, serious and silly, loud and quiet. Like many of us, he struggles with change, no matter how big or small.
Think about what would it mean to slow down and examine our transitions with scrutiny rather than skimming through them obliviously. It might help you understand one aspect of who William is. That aspect — that manifestation — is his gift to all of us.