SFA in Branson, MO: Guy's Story
Note: This story is told from the perspective of Jennifer, Search's Community Integration Coordinator, who organizes vacation experiences for the people we serve.
At least once every couple of months, when I am out in the community with one of our residents, someone pats me gently on the arm and says softly, "Thank you for what you do." And I always say, "Well thank you for saying that, but it's actually more fun than it looks!"
But there is a lot of truth in what they are acknowledging. If we are being honest, working with adults with intellectual disabilities can be pretty challenging at times. There are the practical concerns: safety of the person in the face of challenging behaviors, and sometimes even safety of the caregiver. There are the invisible cultural barriers to hurdle, and on top of those, there are the physical barriers. (There is a reason we don't take public transportation all that much.)
And don't get me started on the fiscal limitations that prevent us from taking anything for granted. Just this week we are hearing that the new Governor of Illinois has put funding for our services on the chopping block. The unthinkable is our reality here at Search, Inc. So for those of us who have been working in the field for a while now, there has to be some reason that we stay. And on this past SFA trip to Branson, I was reminded of that reason.
I fashion each Search for Adventure trip around our residents' personalities, abilities, interests and desires. But sometimes it comes down to someone just needing to get away for a little while, as was the case for Guy.
Guy has had a hard year by any standard. He moved into a Search home in September of 1996, and has lived there ever since. There have been a few small changes in the home's residents over the years, but the core of the home stayed the same. It was Guy, Frank, and Alfred: brothers. (In the last several years, a fourth brother, Sherwin, was brought into the fold. If Guy, Frank, and Alfred were the original Three Stooges, Sherwin was Curly.)
But 2014 was not so kind to the family. Sherwin died, first. Then Frank. Then Alfred. In a span of less than a year, Guy had lost all three of his brothers.
In the world of developmental disabilities, the seven stages of grief are oftentimes invisible. With some individuals, grief manifests months later in the form of baffling changes in affect or temperament. I've seen clients fade away when their soul sibling passes or transfers to a nursing home. And sometimes, the person "left behind" simply moves on with their life.
In Guy's case, it was a wait and see situation. He is sharp, and totally "gets" the logic of it all, so weren't sure how such a great loss would affect him. It seemed like a good idea to give him a break from his routine and let him "get away from it all," if only for a few days. The team agreed it would be good for Guy to go on the upcoming SFA trip to Branson, Missouri.
And, of course, he had a great time! Who doesn't love bluegrass performances with intermittent skits by vaudeville-style clowns? (I am always pleasantly surprised when Guy knows the words to an obscure song: shadows of a life before Search.) Who wouldn't love to be driven through a cool, beautiful cave and be regaled with stories of underground performances by Ozark Mountain musicians, illegal speakeasies during the days of Prohibition, and caves as top-secret hideouts for soldiers during the Civil War? Who doesn't like having dinner in front of their TV? While in bed?
But the moment that inspired this story came on the last night of the trip. The vacation was essentially over, but for a long drive home the next morning. We were packed up, pajama'd, and still simmering in the afterglow from the legendary Baldknobbers show earlier that evening. I went in to Guy's room to see if he needed anything before I retired for the night. And then it happened.
He opened up.
With Guy, sometimes you just listen. His words are a rat-a-tat-tat stream of stutters and whole notes and unmistakable words that drive his story home.
"Frank."
"Sherwin."
"Died."
"Alfred"
"Pneumonia."
"Brothers."
"Dead."
In the midst of all the pressures of medications, budget shortfalls, incontinence, diet orders, behavior plans, and state mandates, the essence of my job burned through: It is the ultimate privilege to be a part of someone's life in such a profound way. After fifteen years of being in Guy's life, and him in mine, he is now my brother, too. He spoke for about fifteen minutes, and told me everything that had been bubbling up in his heart. And then he was done. And I've heard nothing else about it, since. But I was there when he needed to say it.
That, folks, is why we do this work.
Note: This story is told from the perspective of Jennifer, Search's Community Integration Coordinator, who organizes vacation experiences for the people we serve.
At least once every couple of months, when I am out in the community with one of our residents, someone pats me gently on the arm and says softly, "Thank you for what you do." And I always say, "Well thank you for saying that, but it's actually more fun than it looks!"
But there is a lot of truth in what they are acknowledging. If we are being honest, working with adults with intellectual disabilities can be pretty challenging at times. There are the practical concerns: safety of the person in the face of challenging behaviors, and sometimes even safety of the caregiver. There are the invisible cultural barriers to hurdle, and on top of those, there are the physical barriers. (There is a reason we don't take public transportation all that much.)
And don't get me started on the fiscal limitations that prevent us from taking anything for granted. Just this week we are hearing that the new Governor of Illinois has put funding for our services on the chopping block. The unthinkable is our reality here at Search, Inc. So for those of us who have been working in the field for a while now, there has to be some reason that we stay. And on this past SFA trip to Branson, I was reminded of that reason.
I fashion each Search for Adventure trip around our residents' personalities, abilities, interests and desires. But sometimes it comes down to someone just needing to get away for a little while, as was the case for Guy.
Guy has had a hard year by any standard. He moved into a Search home in September of 1996, and has lived there ever since. There have been a few small changes in the home's residents over the years, but the core of the home stayed the same. It was Guy, Frank, and Alfred: brothers. (In the last several years, a fourth brother, Sherwin, was brought into the fold. If Guy, Frank, and Alfred were the original Three Stooges, Sherwin was Curly.)
But 2014 was not so kind to the family. Sherwin died, first. Then Frank. Then Alfred. In a span of less than a year, Guy had lost all three of his brothers.
In the world of developmental disabilities, the seven stages of grief are oftentimes invisible. With some individuals, grief manifests months later in the form of baffling changes in affect or temperament. I've seen clients fade away when their soul sibling passes or transfers to a nursing home. And sometimes, the person "left behind" simply moves on with their life.
In Guy's case, it was a wait and see situation. He is sharp, and totally "gets" the logic of it all, so weren't sure how such a great loss would affect him. It seemed like a good idea to give him a break from his routine and let him "get away from it all," if only for a few days. The team agreed it would be good for Guy to go on the upcoming SFA trip to Branson, Missouri.
And, of course, he had a great time! Who doesn't love bluegrass performances with intermittent skits by vaudeville-style clowns? (I am always pleasantly surprised when Guy knows the words to an obscure song: shadows of a life before Search.) Who wouldn't love to be driven through a cool, beautiful cave and be regaled with stories of underground performances by Ozark Mountain musicians, illegal speakeasies during the days of Prohibition, and caves as top-secret hideouts for soldiers during the Civil War? Who doesn't like having dinner in front of their TV? While in bed?
But the moment that inspired this story came on the last night of the trip. The vacation was essentially over, but for a long drive home the next morning. We were packed up, pajama'd, and still simmering in the afterglow from the legendary Baldknobbers show earlier that evening. I went in to Guy's room to see if he needed anything before I retired for the night. And then it happened.
He opened up.
With Guy, sometimes you just listen. His words are a rat-a-tat-tat stream of stutters and whole notes and unmistakable words that drive his story home.
"Frank."
"Sherwin."
"Died."
"Alfred"
"Pneumonia."
"Brothers."
"Dead."
In the midst of all the pressures of medications, budget shortfalls, incontinence, diet orders, behavior plans, and state mandates, the essence of my job burned through: It is the ultimate privilege to be a part of someone's life in such a profound way. After fifteen years of being in Guy's life, and him in mine, he is now my brother, too. He spoke for about fifteen minutes, and told me everything that had been bubbling up in his heart. And then he was done. And I've heard nothing else about it, since. But I was there when he needed to say it.
That, folks, is why we do this work.