Ups and Downs...

Today is National Down Syndrome Day.

I started my career in human services as a "teaching parent" which is a title unique to the agency I work for. We are a national trainer for a technique called the Teaching Family Model which is a very effective way to teach life and communication skills to people who lack them. As a "teaching parent", I was hired to work with adults with developmental disabilities in their own home and assist them on a daily basis to learn the skills they needed to get by day to day. Because of the severity of their developmental delays, these guys needed 24 supervision and care but there was much they could and did learn to do for themselves. This first job gave me a solid understanding of Down Syndrome and the nature of that disorder.

Down Syndrome is a disorder from birth that has overall the same characteristics for everyone who has it. Though the degree of their retardation may vary they share some physical attributes that make Down Syndrome easily identifiable. Usually, their heads are slightly smaller. They may have shorter fingers and stunted feet. Their tongues may be larger than the inside of their mouths which causes them to sometimes protrude slightly and can make clear speech difficult. They generally have almost or slanted eyes which, in less enlightened days, caused them to be called "mongoloid" at one time. Also in those days, women who gave birth to a "mongoloid" baby were told that their life expectancy was almost none existent and that, if they were to live, they would never be able to learn anything at all. Most doctors at that time suggested life long institutionalization from birth and, sadly, that's exactly what many families did.

But there are other characteristics that are shared by people with Down Syndrome that they didn't realize then yet I have experienced first hand through my career. People with Down Syndrome have, overwhelmingly, an enormous capacity for life. They enjoy themselves wholeheartedly in almost every aspect of their lives. If they work, they work hard and love every minute of it. They make dear friends and care about them deeply. They have favorite bands and music and TV shows and foods and clothes and books and actors and...you know what? They are a lot like everyone else. There is one aspect in which people with Down Syndrome are very different. In my experience, people with Downs have the largest capacity for love that I have ever seen. I have gotten the most sincere hugs and pats on the back from people with Down Syndrome. When they love you, they really love you! And they will let you know it. Somehow, knowing that someone is out there that cares that much about you, shows you every time how much they really like you and always want to be around you makes you feel pretty darn good about yourself. Like a rock star!

A few years into my career I changed jobs and was now working in case management as the "relocation specialist". This meant that I was given the task of going into the local institution to see who was left behind and to make plans to move them into less restrictive, more integrated community settings. Years before a major push for inclusion had cleared the institutes of most of the people with Down Syndrome. Because, you see, they have the ability to learn and easily moved into group homes and supported apartments throughout Wisconsin. They did not have the "death sentence" those doctors predicted long ago. In fact, they were living longer than anyone had imagined. At Southern WI Center, the nearest institution to where I live, there was then mostly highly behavioral individuals who would require multi-staffed homes and specialized programs in the community. But I also found a small, birdlike woman with Downs. She was wheelchair bound, unable to speak, profoundly retarded. She had been left there as an infant and was now in her mid-50s. She had long outlived any one's expectations. I was given the task of assessing her to find a group home placement in the community that could meet her special needs. As I looked into her very extensive file at the center I discovered that she was the sister of friend of mine. Amazingly, she had been placed there so long ago that she now had siblings in the community who were completely unaware that she even existed. Her mother, who had the difficult decision to institutionalize her so many years before, had chosen to keep that secret from them and passed away before any of them knew. I found the ideal group home for this lovely little lady where she was well cared for and was able to go places she had been denied for her entire life. Best of all, i got to reunite her with family that were thrilled to meet her for the first time. They've made her an integral part of their lives and the love she feels, though she cannot speak it, is so clearly evident in the hugs and smiles she is able to give them.

People with Downs, with their love of life, laughter and people, are the some of the best people I have had the pleasure to meet. I feel honored to have worked with so many. They strive to do good all the time. They want to be the best at their jobs, the best friends, the best athletes, the best at what they love to do. They are brave individuals who can light up a room and make others feel so deeply loved. If you've never had the opportunity to meet someone with Down Syndrome I urge you to seek out a chance to volunteer at your local Special Olympics for one season. Just one. You will walk away a changed person. One with a whole new perspective on life and what's really important.