There are many beautiful pictures of our young children with Down syndrome. Their bright, shining smiles. Their eyes that truly sparkle. They tug at our hearts. They pull us in. They truly are special. They will change the world, we proclaim. And we mean it. This is a story of embracing acceptance and running full speed ahead with it. Those around us are drawn in by the bright, shining smiles and sparkling eyes. Those around us cheer us on. It is a story of triumph we all feel good about. This story is one of acceptance, and once this acceptance is embraced, we live happily ever after.
If we really want to change the works, where is the rest of the story? Where are the pictures of these shining, world-changing children as teens? Going through puberty, with pimples and hormones? Where are the pictures of our world-changing children facing the social isolation many teens go through and then some because of communication processing barriers? Where are the parents navigating this with very few pictures and stories to lift them as they did when their children were younger?
If we really want to change the world, where are the stories of these shining, world-changing children as adults? Unless these beautiful children have grown to land modeling roles or started a small business, we hear nothing more from them.
If we really want to change the world, we need the rest of the story. We need to see how our kids navigate puberty and social isolation. How kids with Down syndrome’s behaviors change when mixed with hormones, communication barriers and cognitive delays. How there is no “American Girl” for puberty book for our kids.
If we really want to change the world, adults with Down syndrome need to be seen for the valuable individuals they are. They don’t need to own a store to do that, or fill the cover of a magazine. Those accomplishments are to be applauded, but so is our friend who is volunteering at the food bank or the library. The steps it took to get them there may be downright heroic. But we don’t know that, because many of us don’t know the rest of the story. When adults with Down syndrome continue to be seen as “cute” they will never been given the value and respect they deserve.
If we really want to change the world, we need to see the rest of the story. The book full of fresh new chapters each and every year. Smiles with braces. Sparkling eyes that have grown crow’s feet. I know those faces forever tug at my heart. They will forever pull me in. Because I am dedicated to the rest of the story.