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.
Showing posts with label developmental disabilities. Show all posts
Showing posts with label developmental disabilities. Show all posts
Thursday, March 21, 2013
Tuesday, February 2, 2010
Someone I'll never forget...
(This is another one from the past...1998 to be exact...)
There was a point in my life that I felt I needed to earn more money than case management was paying me. I left the agency and took a job as a Program Manager for one of the larger corporate run residential service providers. Half way through the year I worked for them, they purchased two homes from another agency and set them up as community based residential facilities. The homes opened in mid-June of that year, understaffed and not ready. As the coordinator, I was called on a lot to come in and work full shifts with the residents.
One of the residents was a man who had previously lived in his own apartment. He was born with Cerebral Palsy. He had lived a full life and, as his abilities slipped away, he became angry. Many people refused to work with him because be could be a real pistol. He would say the meanest, most hurtful things to the staff. Or he would say things steeped in sexual innuendo which made the staff uncomfortable. The horrible irony of it was that his disability made it impossible for him to do anything. He could not even feed himself let alone act on any impulse he may have. When he came to the home he was decidedly not happy that this was the course his life had taken. Once able to drive, study, teach and lead a life full by any standards was now limited only to his imagination and fading memories. And to make matters worse, the disabilities of the other residents made him feel like he didn't belong anywhere.
Larry made it difficult for many of the staff to work with him. He was demanding. He wanted things his way and let everyone know it. Most of the staff were very insecure about dealing with him. But I found that he appreciated those people who didn't cower when he bellowed. Once you established a no nonsense attitude with him, he was fine. He was also extremely intelligent and just plain funny. One of the most truly genuine funny people I have ever met. He was a virtual encyclopedia of amusing anecdotes. He had done more in his life that I had done and I was fully able. He was also a bit of a hell raiser!
One rule in the home that Larry detested was BEDTIME. He knew there was a shift change at 11pm and understood it was necessary for all personal care to be completed by then. But he had never done to bed before 10pm in his life and he saw no reason why he should start now. Since he was unable to do anything for himself, his cares demanded that two people be present. It involved a lot of lifting, shifting and tugging. Must to the chagrin of my staff, I altered the bedtime rule for Larry. He was able to stay up until the third shift person came on duty and then the second and third shift person would do his cares. This meant Larry could stay up until at least 11pm. Everyone else in the house was in bed by nine. They didn't even want to stay up later than that. This meant when I was working a second shift I got to spend a couple of hours each night just talking to Larry. Larry smoked like a fiend and we would sit on the deck while he smoked. Over the next 5 months, I realized that Larry was more than just someone who lived in a group home - he was a friend. Of course, as a social worker, I kept my professional boundaries but if circumstances were different and Larry was not disabled, I think he would have been someone I could have easily been friends with.
Unfortunately, the circumstances of the job were not good for me. I was working non-stop and I knew I needed a change. I went back to case management. Oddly enough, Larry was on my case load! But, it was only a short time later that I got a call from the group home. Larry had passed away. It was sudden and unexpected. And so sad.
I learned a lot from Larry. I learned that you really can't judge a book by it's cover. I learned that when you have no faculties to do anything physical for yourself sometimes your voice is your greatest weapon. I learned the true meaning of dignity and grace. Oh, he could be a pain in the ass and I mean a TRUE pain in the ass! I even learned to appreciate that. I still think of him often. And I know I will always miss him.
There was a point in my life that I felt I needed to earn more money than case management was paying me. I left the agency and took a job as a Program Manager for one of the larger corporate run residential service providers. Half way through the year I worked for them, they purchased two homes from another agency and set them up as community based residential facilities. The homes opened in mid-June of that year, understaffed and not ready. As the coordinator, I was called on a lot to come in and work full shifts with the residents.
One of the residents was a man who had previously lived in his own apartment. He was born with Cerebral Palsy. He had lived a full life and, as his abilities slipped away, he became angry. Many people refused to work with him because be could be a real pistol. He would say the meanest, most hurtful things to the staff. Or he would say things steeped in sexual innuendo which made the staff uncomfortable. The horrible irony of it was that his disability made it impossible for him to do anything. He could not even feed himself let alone act on any impulse he may have. When he came to the home he was decidedly not happy that this was the course his life had taken. Once able to drive, study, teach and lead a life full by any standards was now limited only to his imagination and fading memories. And to make matters worse, the disabilities of the other residents made him feel like he didn't belong anywhere.
Larry made it difficult for many of the staff to work with him. He was demanding. He wanted things his way and let everyone know it. Most of the staff were very insecure about dealing with him. But I found that he appreciated those people who didn't cower when he bellowed. Once you established a no nonsense attitude with him, he was fine. He was also extremely intelligent and just plain funny. One of the most truly genuine funny people I have ever met. He was a virtual encyclopedia of amusing anecdotes. He had done more in his life that I had done and I was fully able. He was also a bit of a hell raiser!
One rule in the home that Larry detested was BEDTIME. He knew there was a shift change at 11pm and understood it was necessary for all personal care to be completed by then. But he had never done to bed before 10pm in his life and he saw no reason why he should start now. Since he was unable to do anything for himself, his cares demanded that two people be present. It involved a lot of lifting, shifting and tugging. Must to the chagrin of my staff, I altered the bedtime rule for Larry. He was able to stay up until the third shift person came on duty and then the second and third shift person would do his cares. This meant Larry could stay up until at least 11pm. Everyone else in the house was in bed by nine. They didn't even want to stay up later than that. This meant when I was working a second shift I got to spend a couple of hours each night just talking to Larry. Larry smoked like a fiend and we would sit on the deck while he smoked. Over the next 5 months, I realized that Larry was more than just someone who lived in a group home - he was a friend. Of course, as a social worker, I kept my professional boundaries but if circumstances were different and Larry was not disabled, I think he would have been someone I could have easily been friends with.
Unfortunately, the circumstances of the job were not good for me. I was working non-stop and I knew I needed a change. I went back to case management. Oddly enough, Larry was on my case load! But, it was only a short time later that I got a call from the group home. Larry had passed away. It was sudden and unexpected. And so sad.
I learned a lot from Larry. I learned that you really can't judge a book by it's cover. I learned that when you have no faculties to do anything physical for yourself sometimes your voice is your greatest weapon. I learned the true meaning of dignity and grace. Oh, he could be a pain in the ass and I mean a TRUE pain in the ass! I even learned to appreciate that. I still think of him often. And I know I will always miss him.
Wednesday, January 27, 2010
More ramblings from my past...
Here is another essay I wrote. This one from 1999 or so...
For a time, I was working as the Program Manager for a residential care company. Part of this job meant I was "on call" and had to go in and substitute if one of my workers called in sick. I can't say I minded it much though because I've always loved the direct client contact. Sometimes, the residents of the home were more perceptive than they were given credit for. One resident came to us in a very serious state of mind. She was born with Down Syndrome and was exhibiting the early stages of Alzheimer's. Most of the time, she was fine but occasionally she would become very confused, disoriented and forgetful. On one such occasion, she began yelling at the top of her lungs at 8am and continued throughout the day.
This was, of course, was disrupting all of the other residents and they were getting agitated. In an effort to calm her down I sat with her and talked in a calm, soothing voice. Every time I spoke she would stop but when I stopped speaking her screaming would resume. I was getting frustrated but continued to try to calm her down. Finally, I began asking her questions in an attempt to get a verbal response. When I asked, "What's your name?" She responded appropriately. When I asked her, "What's my name?" She yelled out, "DUMMY!"
We all got a good laugh about that and she finally stopped yelling. The funny part of all of this is that the next day when I arrived for work she came out of her room all smiles and full of greetings for the staff. She went up to each one of them and saying, "Good morning, Carrie. Good morning, Alice." etc, etc....until she got to me. She took my hand, looked me right in the eyes and said...
"Good morning, DUMMY!"
And she called me that every day for the rest of her stay at that home!
For a time, I was working as the Program Manager for a residential care company. Part of this job meant I was "on call" and had to go in and substitute if one of my workers called in sick. I can't say I minded it much though because I've always loved the direct client contact. Sometimes, the residents of the home were more perceptive than they were given credit for. One resident came to us in a very serious state of mind. She was born with Down Syndrome and was exhibiting the early stages of Alzheimer's. Most of the time, she was fine but occasionally she would become very confused, disoriented and forgetful. On one such occasion, she began yelling at the top of her lungs at 8am and continued throughout the day.
This was, of course, was disrupting all of the other residents and they were getting agitated. In an effort to calm her down I sat with her and talked in a calm, soothing voice. Every time I spoke she would stop but when I stopped speaking her screaming would resume. I was getting frustrated but continued to try to calm her down. Finally, I began asking her questions in an attempt to get a verbal response. When I asked, "What's your name?" She responded appropriately. When I asked her, "What's my name?" She yelled out, "DUMMY!"
We all got a good laugh about that and she finally stopped yelling. The funny part of all of this is that the next day when I arrived for work she came out of her room all smiles and full of greetings for the staff. She went up to each one of them and saying, "Good morning, Carrie. Good morning, Alice." etc, etc....until she got to me. She took my hand, looked me right in the eyes and said...
"Good morning, DUMMY!"
And she called me that every day for the rest of her stay at that home!
Tuesday, January 26, 2010
Looking back...
As I previously stated in my last blog entry, I have come across some short essays I wrote at various times in my career and finding them/reading them has given me some insight into why I love what I do no matter how crappy the situation seems. I've decided to share some of them here, changing the names where needed, and by doing so, maybe, just maybe, getting a little bit of my own mojo back. Here's the first one...written in 1998, I think.
Destined
In looking back at my life I can now say that I was predestined to do the kind of work I now do. I am the case management supervisor for an agency that provides services for people with disabilities. (Note: At the time this was written I was working exclusively with people with developmental disabilities.) I never planned this for myself. Yet in spite of what I thought I might like to be when I grew up, this is what I became and, truth be told, I would not change it for the world.
Let me explain. When I was born my family lived above my parent's restaurant on the north side of town. The restaurant was located on the busy corner of a rather ordinary neighborhood. The rest of the houses on the block were regular homes with regular families. Up the street, about three houses away, was where the Johnson family lived. They seemed to have the exact number of kids in their family. In fact, I think each of siblings had an age coordinated Johnson kid to play with. My Johnson family playmate was a girl named Janie.
Janie was the kid in the neighborhood who seemed to have everything. She had the best toys, the coolest games, the newest records and a bike, which was something I coveted. I loved going to her house to play. She had a great back yard and a garage we were always getting into when we knew we weren't allowed. She also had a basement with several furnished rooms. At that time, she was my best friend in the world. She could also swear a blue streak and I loved to imitate her colorful language though I knew if my mother ever heard me I would be grounded for life. We used to go into her basement and play her collection of 45's. We would fight over who got to be Davey Jones when we pretended to be the Monkeys. We would also laugh and poke fun at whoever picked Poindexter as their "Mystery Date".
I was blissfully unaware that there were distint differences between me and my best friend. Sure, she could barely make a fist and she finally did she needed to use her other hand to unhinge all of her fingers. We all just thought that was some sort of weird, neat trick. I loved Janie the way only kids can love their dearest friends.
Eventually, my parents sold their restaurant and we moved to the south side of town. I didn't see Janie as much anymore. There were new kids in the new neighborhood and I made new friends. About a year or two after I moved, I was invited to a birthday party at a mutual friends house and I saw Janie for the first time since I moved. There was something different about her. I realized though that she had not changed in the least. After two years apart, I had grown taller and my taste in toys, boys and music had definitely changed. When I went home I asked my sisters and mother about what I had noticed. It was then I learned that Janie was what people then called "mentally challenged". She had a disability and I was never even aware of it.
Ironically, when my family moved into the new house on the south side there was a girl named Tina who lived across the street. Tina never really hung around with the same kids I did but occasionally, if I was just hanging out in our yard, she would come over to talk. She had a high pitched voice and was loud most of the time. I would watch her walk over from across the street and her head would move from side to side with each step she took. She was also very top heavy for her age. Once when I was with my neighborhood friends I asked them why Tina never came over when we were all outside together. One kid started to laugh and said that her mother wouldn't let her because she was retarded. Tina also had a disability. I later told my mother this and she said it was true. Tina's mother was afraid that the other kids would make fun of her and she would only let her come over when I was outside alone.
I liked going to Tina's house. She was fun to play with. Partly because I was at that strange age when I was a little too old to play with dolls without being teased mercilessly by my sophisticated preteen friends and Tina had an amazing Barbie doll collection. We would dress them all up and have fashion shows. Her mother would let us raid her own wardrobe and make up and we would be the "stars" of those fashion shows.
I soon learned that Tina knew Janie! They went to the same school and had been friends. It was my first lesson in just how small the world of the disabled really is. When there are so few opportunities available everyone gets to know everyone else because they are always forced to be together.
My experience and exposure to people with disabilities continued throughout my life. In high school, there was a girl named Hannah that always seemed to be on the outside of any group. She was always eating her lunch alone in the cafeteria so one day I asked her to join me and my group of friends. At first, the others were very quiet. Later they told me they were not sure how to act around her because she was retarded. I told them to just act like they always did. Soon, they all accepted her and she became one of our group of friends.
Later, when I was in college, I needed a job to help me pay my tuition. I got a job working for the Disabilities Service Center as a park director. Sounds impressive, right? Basically, I got to hang out in a park all day doing activies with disabled kids. It was a blast!
After college I was teaching for a while. I was looking for a part time job to supplement my income and a friend suggested I apply where she worked. So I did. I ended up getting the job - doing occasional recreational outings with one young disable man. As it happens, my friend worked at the very agency I am working at now. I took the part time job, quickly moved to a full time position and have been at this agency for nearly 17 years. I knew then that I was born to work in this field. I look back at all of these amazing, resilient people I have known and still know and it cannot be argued that this was the direction my life was meant to take. It was predestined.
What I have learned most from the people I have worked with is that no matter how differently abled, how behavioral, or how difficult someone's life can be, there is also great humanity and goodness. They've taught me far more than I could ever have taught them. And they humble me, each and every day.
Destined
In looking back at my life I can now say that I was predestined to do the kind of work I now do. I am the case management supervisor for an agency that provides services for people with disabilities. (Note: At the time this was written I was working exclusively with people with developmental disabilities.) I never planned this for myself. Yet in spite of what I thought I might like to be when I grew up, this is what I became and, truth be told, I would not change it for the world.
Let me explain. When I was born my family lived above my parent's restaurant on the north side of town. The restaurant was located on the busy corner of a rather ordinary neighborhood. The rest of the houses on the block were regular homes with regular families. Up the street, about three houses away, was where the Johnson family lived. They seemed to have the exact number of kids in their family. In fact, I think each of siblings had an age coordinated Johnson kid to play with. My Johnson family playmate was a girl named Janie.
Janie was the kid in the neighborhood who seemed to have everything. She had the best toys, the coolest games, the newest records and a bike, which was something I coveted. I loved going to her house to play. She had a great back yard and a garage we were always getting into when we knew we weren't allowed. She also had a basement with several furnished rooms. At that time, she was my best friend in the world. She could also swear a blue streak and I loved to imitate her colorful language though I knew if my mother ever heard me I would be grounded for life. We used to go into her basement and play her collection of 45's. We would fight over who got to be Davey Jones when we pretended to be the Monkeys. We would also laugh and poke fun at whoever picked Poindexter as their "Mystery Date".
I was blissfully unaware that there were distint differences between me and my best friend. Sure, she could barely make a fist and she finally did she needed to use her other hand to unhinge all of her fingers. We all just thought that was some sort of weird, neat trick. I loved Janie the way only kids can love their dearest friends.
Eventually, my parents sold their restaurant and we moved to the south side of town. I didn't see Janie as much anymore. There were new kids in the new neighborhood and I made new friends. About a year or two after I moved, I was invited to a birthday party at a mutual friends house and I saw Janie for the first time since I moved. There was something different about her. I realized though that she had not changed in the least. After two years apart, I had grown taller and my taste in toys, boys and music had definitely changed. When I went home I asked my sisters and mother about what I had noticed. It was then I learned that Janie was what people then called "mentally challenged". She had a disability and I was never even aware of it.
Ironically, when my family moved into the new house on the south side there was a girl named Tina who lived across the street. Tina never really hung around with the same kids I did but occasionally, if I was just hanging out in our yard, she would come over to talk. She had a high pitched voice and was loud most of the time. I would watch her walk over from across the street and her head would move from side to side with each step she took. She was also very top heavy for her age. Once when I was with my neighborhood friends I asked them why Tina never came over when we were all outside together. One kid started to laugh and said that her mother wouldn't let her because she was retarded. Tina also had a disability. I later told my mother this and she said it was true. Tina's mother was afraid that the other kids would make fun of her and she would only let her come over when I was outside alone.
I liked going to Tina's house. She was fun to play with. Partly because I was at that strange age when I was a little too old to play with dolls without being teased mercilessly by my sophisticated preteen friends and Tina had an amazing Barbie doll collection. We would dress them all up and have fashion shows. Her mother would let us raid her own wardrobe and make up and we would be the "stars" of those fashion shows.
I soon learned that Tina knew Janie! They went to the same school and had been friends. It was my first lesson in just how small the world of the disabled really is. When there are so few opportunities available everyone gets to know everyone else because they are always forced to be together.
My experience and exposure to people with disabilities continued throughout my life. In high school, there was a girl named Hannah that always seemed to be on the outside of any group. She was always eating her lunch alone in the cafeteria so one day I asked her to join me and my group of friends. At first, the others were very quiet. Later they told me they were not sure how to act around her because she was retarded. I told them to just act like they always did. Soon, they all accepted her and she became one of our group of friends.
Later, when I was in college, I needed a job to help me pay my tuition. I got a job working for the Disabilities Service Center as a park director. Sounds impressive, right? Basically, I got to hang out in a park all day doing activies with disabled kids. It was a blast!
After college I was teaching for a while. I was looking for a part time job to supplement my income and a friend suggested I apply where she worked. So I did. I ended up getting the job - doing occasional recreational outings with one young disable man. As it happens, my friend worked at the very agency I am working at now. I took the part time job, quickly moved to a full time position and have been at this agency for nearly 17 years. I knew then that I was born to work in this field. I look back at all of these amazing, resilient people I have known and still know and it cannot be argued that this was the direction my life was meant to take. It was predestined.
What I have learned most from the people I have worked with is that no matter how differently abled, how behavioral, or how difficult someone's life can be, there is also great humanity and goodness. They've taught me far more than I could ever have taught them. And they humble me, each and every day.
Tuesday, July 14, 2009
Frankly, I'm pissed off...
I've had some time to think about the events of last week and my impending unusefulness here since my job is likely to be gone soon. And I am pissed. In these past two years, I have managed a large staff of caring people who work their asses off on a daily basis to bring some sense of worth to people most other's ignore. We have done this and maintained most of our sanity in systems nightmare that changes more than a baby's diaper. At no time, did anyone from the HMO ever ask us for any input or advice as to the best way to work with our target group even though we've been doing it for years and they have not. In the past two years, I've seen people become numbers and social workers become "good worker bees" who aren't suppose to speak up and are advised that we are not advocates but rather "brokers" of services.
I have found it incredibly hard to work within a system that now only addresses needs and those needs are seen as negatives and something that costs money. I have always seen the disabled not for what they cannot do, but rather, for what they can achieve with just the slightest assistance, kind teaching and, once in a while, a gentle push. They are not unlike the rest of us. They want the same things. They long for friends, relationships, meaningful work, and nice places to live. They have opinions and hopes and dreams and, to me, discounting those things is a crime. I have a feeling, it is because I am so vocal about these things, that my services as supervisor are no longer seen as needed by the HMO.
And, frankly, it pisses me off.
I know I'll be okay. This agency is a great place to work and I'm confident they'll have something for me that will be challenging and eventful. My boss is a good guy and he has always had my back. So, yeah, I'll be fine.
(NOTE: I just wanted to say thank you to Denise of prinslinks.blogspot.com for always taking an interest and even highlighting one of my blog entries in her blog. I wish she could work here too! )
I have found it incredibly hard to work within a system that now only addresses needs and those needs are seen as negatives and something that costs money. I have always seen the disabled not for what they cannot do, but rather, for what they can achieve with just the slightest assistance, kind teaching and, once in a while, a gentle push. They are not unlike the rest of us. They want the same things. They long for friends, relationships, meaningful work, and nice places to live. They have opinions and hopes and dreams and, to me, discounting those things is a crime. I have a feeling, it is because I am so vocal about these things, that my services as supervisor are no longer seen as needed by the HMO.
And, frankly, it pisses me off.
I know I'll be okay. This agency is a great place to work and I'm confident they'll have something for me that will be challenging and eventful. My boss is a good guy and he has always had my back. So, yeah, I'll be fine.
(NOTE: I just wanted to say thank you to Denise of prinslinks.blogspot.com for always taking an interest and even highlighting one of my blog entries in her blog. I wish she could work here too! )
Tuesday, April 1, 2008
Hard lessons...
There are two truths in social work. One is that you can, over the years, become incredibly attached to the disabled people you work for. And the other is, they die.
Yesterday, two of my case managers happily left the office to do a home visit to one of the more severely disalbed individuals we serve. He was a young man in his 40's who had the functional ability of a 3 year old. He lived with his mother who devoted her life to taking care of him though when he was born the experts told her she would do better to place him in an institution. He was happy, living at home, playing with his toys and having the unconditional love of his mother.
When my workers got to his home he was being wheeled out on a gurnee, covered with a sheet. He had died that morning. He had the flu for about a week and, already weak and susecptible, he was unable to fight it. Of course, it was a sad sight and my workers were devestated.
I think that's something people don't realize when they think of what social workers and case managers do. We get a rep for being the ones who take people from their homes against their will but the truth is - we do all we can to keep them in those homes with people who know and love them. And when this happens, we grieve. We aren't family or even close friends. But we care, and hope, and want to see them succeed and when they are gone, it hurts.
I knew a man named Larry once. He lived in a group home I worked at. He was so smart. He had been a college professor, owned his own home, drove a car, dated...just like everyone else. But he had cerebral palsy and little by little over the years he lost all of his physical functioning. His speech became slurred and difficult to understand. He couldn't toilet himself, or bathe himself, or feed himself, or even roll over in bed by himself. Yet, he was one of the brightest and funniest people I've ever known. I remember one of the things he could not do for himself (and I'm sure most men will relate to this one!) is adjust his balls! He would slide forward and then back in his wheelchair which often led to him ending up sitting on them in a very uncomfortable way! As a caregiver, I became very used to doing things for people that most people would shudder to even think about! This was no different. Once when this happened and he needed my assistance, I put on a glove, reached in his shorts and...well...adjusted! While I was doing this, Larry looked up and asked, "What IS it you tell your family you do for a living?" Haha! That was Larry! Someone who for all intensive purposes could have lost all of his personal dignity but he kept it by making jokes in uncomfortable situations and maintaining the very core of who he was.
Larry also passed away quietly in his sleep one night. And I grieved.
A couple of weeks after his funeral I recieved a package in the mail. It was from Larry's mother. In it was a lovely vase and several pictures of Larry in various stages in his life. I saw him as a younger man, fully able, leading a group of univeristy students in a lecture. I saw him at the wheel of a convertible. I saw him using his first walker. Then his first wheelchair. And the infernal scooter that he longed to ride even up to his death. His mother included a little note that said, "Out of all the people Larry had to rely on to get by in life, he loved you best. He always told me that you made him feel like he wasn't disabled at all."
That's why we grieve.
There's perception of social workers as do-gooders. Or people who think they know best. That's not true at all. What we are are people who know that underneath the shell of the disability is a person who has the same hopes, desires and dreams as anyone else. People who want to achieve what they can and who want to be seen for who they really are. Sometimes, we create our own frustrations, our own stress...out of the desire to do more to help people be.
That's why we grieve.
Yesterday, two of my case managers happily left the office to do a home visit to one of the more severely disalbed individuals we serve. He was a young man in his 40's who had the functional ability of a 3 year old. He lived with his mother who devoted her life to taking care of him though when he was born the experts told her she would do better to place him in an institution. He was happy, living at home, playing with his toys and having the unconditional love of his mother.
When my workers got to his home he was being wheeled out on a gurnee, covered with a sheet. He had died that morning. He had the flu for about a week and, already weak and susecptible, he was unable to fight it. Of course, it was a sad sight and my workers were devestated.
I think that's something people don't realize when they think of what social workers and case managers do. We get a rep for being the ones who take people from their homes against their will but the truth is - we do all we can to keep them in those homes with people who know and love them. And when this happens, we grieve. We aren't family or even close friends. But we care, and hope, and want to see them succeed and when they are gone, it hurts.
I knew a man named Larry once. He lived in a group home I worked at. He was so smart. He had been a college professor, owned his own home, drove a car, dated...just like everyone else. But he had cerebral palsy and little by little over the years he lost all of his physical functioning. His speech became slurred and difficult to understand. He couldn't toilet himself, or bathe himself, or feed himself, or even roll over in bed by himself. Yet, he was one of the brightest and funniest people I've ever known. I remember one of the things he could not do for himself (and I'm sure most men will relate to this one!) is adjust his balls! He would slide forward and then back in his wheelchair which often led to him ending up sitting on them in a very uncomfortable way! As a caregiver, I became very used to doing things for people that most people would shudder to even think about! This was no different. Once when this happened and he needed my assistance, I put on a glove, reached in his shorts and...well...adjusted! While I was doing this, Larry looked up and asked, "What IS it you tell your family you do for a living?" Haha! That was Larry! Someone who for all intensive purposes could have lost all of his personal dignity but he kept it by making jokes in uncomfortable situations and maintaining the very core of who he was.
Larry also passed away quietly in his sleep one night. And I grieved.
A couple of weeks after his funeral I recieved a package in the mail. It was from Larry's mother. In it was a lovely vase and several pictures of Larry in various stages in his life. I saw him as a younger man, fully able, leading a group of univeristy students in a lecture. I saw him at the wheel of a convertible. I saw him using his first walker. Then his first wheelchair. And the infernal scooter that he longed to ride even up to his death. His mother included a little note that said, "Out of all the people Larry had to rely on to get by in life, he loved you best. He always told me that you made him feel like he wasn't disabled at all."
That's why we grieve.
There's perception of social workers as do-gooders. Or people who think they know best. That's not true at all. What we are are people who know that underneath the shell of the disability is a person who has the same hopes, desires and dreams as anyone else. People who want to achieve what they can and who want to be seen for who they really are. Sometimes, we create our own frustrations, our own stress...out of the desire to do more to help people be.
That's why we grieve.
Tuesday, December 4, 2007
Somedays are just like that....
Every once in a while it is made too clear that what I do for a living does have a profound affect on people's lives. Some people think that is a good thing and, I guess, most of the time it is but then days like today happen and it seems that no amount of doing good can work. In the first hour of my work day, I got three calls. The first was from a group home provider who was calling to tell me that the person we placed in her home had a medical emergency. She didn't know what was wrong with him since he can't speak and was unable to tell her but he started screaming during the night and wouldn't stop. She took him to the ER and after a series of tests it was determined that he had blood clots in his lung area and was also bleeding on the brain. His prognosis is not good. The doctor doesn't think he'll make it to the weekend. The second call was from the nurse at a local sheltered workshop who called to tell me that this morning one of the people we case manage misstepped as he was getting off the bus. He fell breaking his collar bone and several ribs. He also hit his head hard on the cement and was also bleeding on the brain. He was Flight For Lifed to a hospital in Milwaukee. After taking on these two calls the third and worst call came. It was the brother of one of the ladies we case manage and he was calling to let me know that last Saturday, his sister - our client - had suffered a major heart attack at home and died instantly. All of this increasingly bad and sad news before 9am this morning. I know that in my profession, it is inevitable that I will see illness and death. Working with profoundly developmentally disabled adults means realizing early on that as they age they are susceptible to all the same infirmities as a regularly developed adult but those infirmities hit them hard and once they do, they decline quickly. I've come to expect illness and death but it has never come so fast and furiously as it did today and even though I have done this job for 14 years, even I, the seasoned pro, was shocked and saddened.
It's quiet here now. There is a gentle snow falling and the city is quiet. No traffic, no noise...just the glow of the street light on the whitened street. As I sit here in my little apartment, with a warm, purring kitten on my lap, typing by the soft lights of the Christmas tree, I know, I am lucky. We are all lucky. No matter what it is that brings us down or makes us step back from life I know that there are other people out there who struggle every day with the most basic tasks and they strive to be the best they can be. They take nothing for granted. We have our lives, our jobs, our families even if we are not all in the same place, our friends, our stress, our laughter, our tears, ourselves. We are all lucky.
It's quiet here now. There is a gentle snow falling and the city is quiet. No traffic, no noise...just the glow of the street light on the whitened street. As I sit here in my little apartment, with a warm, purring kitten on my lap, typing by the soft lights of the Christmas tree, I know, I am lucky. We are all lucky. No matter what it is that brings us down or makes us step back from life I know that there are other people out there who struggle every day with the most basic tasks and they strive to be the best they can be. They take nothing for granted. We have our lives, our jobs, our families even if we are not all in the same place, our friends, our stress, our laughter, our tears, ourselves. We are all lucky.
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