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.

Meanderings on Memorial Day Weekend...

I would say I'm not big on sentiment but those who know me would say I was lying. I guess I'm not big on sentiment in the usual way. For instance, this weekend is Memorial Day weekend. Now I know the real meaning of this holiday is to remember all of those who have fought and given their lives for our freedom. But, it's also a time to remember those in our own families that have gone ahead.

I was out to St. George Cemetery yesterday. Strangely enough, not to pay my respects to my father who is buried there. I just don't believe he is still there. I mean, yes, his body is there under the ground but my Dad is not. He's all around me, in my thoughts, in who I am. I don't get those people who believe that last resting place is the place to go and "visit" their deceased loved ones. Anyway, I digress...

What fascinates me most about St. George Cemetery, or any cemetery for that matter, is the grave stones. I wonder who were these people, how did they live, who loved them, who did they love, what did they do, and, finally, how did they die? The dates on the stones make me think of these things. I'll see one man, born in 1881 and died 1971. He lived a long life and I wonder what life he had? And right next to him, a girl, born in 1882 and died 1884. Just two years old. Makes me wonder how she died. I get lost in trying to create the stories of the people buried there. Anyway, I took some pictures while I was there. So here they are...








Happy Memorial Day Everyone!

A life less lived...

I've been trying to figure out how to write what I've wanted to write all day now. I had intended to get to this blog earlier but my thoughts weren't coming. You see, I want to write about someone I know that passed away yesterday. Where to begin...

About 15 years ago, I started a new job as a case mananger for developmentally disabled adults. I had never done that type of work before and didn't know then that case management would become my passion. I was green and I was eager and I was scared. I had been hired by the agency I currently work for, in a position for a program they were just starting out with. I was the only case mananger there. My client list came from the previous agency who had the program. I was given some files, some names and some sketchy training and I was off.

One of the first things I did was call everyone on my case list and made appointments to meet them all. The very first person I met was a woman named Kathi. Reading her case file was like reading a novel full of abuse, neglect, financial issues, personal issues, struggles and triumphs. One thing was certain. Kathi did not not nor did she think she needed a case manager. She made that abundandtly clear the first time we met. She was unwashed, disheveled and angry and she stayed that way for months. Nothing I could say seemed to change it and it didn't help that I had to become her payee as well since she was not able to take care of her own money. Now I was the enemy.

My first year with Kathi was hellish at best. We had many, many arguments which almost always ended with her calling me some choice names and walking out. But she always came back.

Over that year, we found a way to work together and, eventually, she began to trust me. When she got into some terrible crisis, she came to me and we worked it out. She got very ill psychiatrically and she trusted me to work with her docs to get her as stable as we could again. The she got arrested. There was nothing I could do to stop her from going to jail and serving time. It was not right. She was very ill and jail serves no purpose in treating mental illness. When she was released, she was very paranoid and changed forever. It took a long time to get her to live independently again and to see her toothless smile again.

I moved on to a superviosry role but I would see Kathi when she came to the office. She always had a smile for me. Always said I looked like I lost weight! (Which I didn't but which endeared her to me all the more!) She would be nervous and scared to come in but would smile through her fears and lightened everyone's day.

She had a hard time with the silly things we take for granted like bathing ourselves, making friends, or just being out in public. She often had a strong smell from not bathing or brushing her teeth regularly. Sometimes she wouldn't make it to the bathroom and she would wet herself. Yet, everyone who ever met her was better off because of it. She was kind, thoughtful, caring, and interested in our lives in a way that we seldom see in eachother. Kathi had a hard, hard life. One that, if you never met her, you might think was not worth living. I think she would disagree with you.

And the fact that she would disagree with you shows what a remarkable spirit she was. Kathi was found dead in her apartment on Tuesday, natural causes.

She touched my life and I can only hope that I touched hers in some small way.
Rest in peace, Kathi.

It's nice to be mellow...

Honestly, there is nothing exciting going on these days and, you know what? It's kind of nice! I mean, sure, the holidays are fast approaching and winter has blasted it's way into Wisconsin...but, overall, I'm just really loving having a normal day to day life with a great guy, a naughty cat, some good entertainment. Just doing the usual stuff...cooking, some cleaning, some laughing, some living.

It's just so normal.
And I love it!

First you're up and then you're down...

My sister's brother in law passed away today. This is the same sister who has cancer. He also had cancer. He was told on Monday that there was nothing more they could do. He went home, went to bed, stopped eating, fell asleep and today he died.

All this illness and death is getting to me. I'm not a religious person. I believe that when it's your time, it's your time and that's pretty much it. It has no rhyme or rhythm. It just is. But all of this is coming at me all at once and it is overwhelming.

There is no good way to say good bye. No amount of time is long enough. I guess we look at the good a person does while they're alive and that's what counts. But at the end, even that doesn't seem to count for much. Death sucks. People mourn and try to remember but over time those memories fade and life goes on.

How do you judge a man's life and what constitutes a good death? Is there such a thing? And, when you think about it, does it even matter?