Continuing education

In the last couple of months many families that include a member of the T21 club have been exasperated by some of the medical communities response to prenatal testing for DS. Rightly so, for that response has been one that paints such a negative picture of what life with DS is.

These families have been put on alert and are getting aggressive at getting the truth out there. Books, newspaper articles, websites all aim to provide expectant parents with realistic snapshots of life with a little more. These tools are going to provide valuable watershed moments to expanding families. It is a very hopeful feeling to see families enthusiastically adding their own experiences to the the story of Down Syndrome, letting people see that there is a "happily ever after" component to the story. To let expectant or new parents understand that there actually is a story of Down Syndrome, and that it is not just a short footnote to parents trying to shape the perfect family.

The story of Down Syndrome always begins with a dramatic jolt, always begins with many raw emotions that make you believe that this story will be too sad or wrenching to continue. Reading on, you discover a story that is compelling and revealing and hopeful. Reading on provides both self discovery and surprising enlightenment. The story weaves joy, encouragement, accomplishment. It shares pain and frustration. It gives us humour and excitement.

The story of Down Syndrome is remarkably similar the the story of any life lived, any life that holds dreams and expectations and love and a remarkable journey. The story of DS is one of more drama, more unknowns, more surprises and any writer will tell you that these qualities make a better story.

In light of the medical community's efforts to close the book on the story of Down Syndrome, families are beginning to introduce us to their own tale of a life worth living. And while these families share their children's accomplishments and demonstrate that the perceptions are false and shed light on the abilities rather than the disabilities, step back and look at something else. Look closely at the faces, look at how they love and respect one another and how their journey, their story is mostly about discovering places within themselves that gives their experiences more depth, more meaning, and more value.

The story of Down Syndrome starts out with the medical explanation of an extra copy of the 21st chromosome, of a baby being given more than other children. It is a theme that runs through their life, their story. A story of more.

So it is left up to us, the active participants in the wondrous story of DS, to defy the critics of our children's lives. To remind people that the critics have never even read the book, for if they had the beginning of our story might not be so dramatic, might not have that bleak pall cast over the very first chapter.