Charlie T.

Working at the ICF

                        Charlie T.

After many years of working in mostly administrative positions (that meant that I
provided direct service to my staff instead of the folks), I moved to the Adirondack State Park (one of the last wilderness areas east of the Mississippi) and took a state job as a program manager for an ICF (Intermediate Care Facility) which housed 12 people. I knew I would be much more involved with the folks (the mentally challenged people "clients" is no longer an acceptable term) but I had no idea how involved. I had always tried to keep a professional distance from the folks but that was about to end. It was a bit chilly my first morning at the ICF - 20 below zero. As I opened the front door, I was confronted by all twelve folks dressed up like Eskimos most in a wheel-chairs lined up waiting for the bus that would take them today program. At the very front of this line sat Charlie T. in a hooded Parka.

We looked at each other for a few seconds and then Charlie flashed a crooked smile at me pushed a jerky hand out in my general direction and made a noise "IIII EEE!

I liked him at once. I took his hand and shook it. This was not what I expected. In the wheelchair behind Charlie was another man who it turned out was Charlie’s brother Bill.

Bill looked at me and told me in a very slow and labored speech "I am Bill - he is Charlie and we are glad to meet you Vic - You are the boss."

At this, Charlie threw back his head and laughed like he was going to have a seizure. I wondered why he was laughing - I soon found out.

My second in charge, Joan, who I had met the day before came over to us, ignored me and said to Charlie, “ Don’t start with him (pointing at me) yet.  He just got here.”

As I was about to respond, Charlie jerked his head toward the door, threw his arm up, and said "ahhh sssss!"

Joan said, "Right, the bus is here - everybody get ready".

With that, an exodus that would have made the Israelites’ heads spin began. In a matter of a very few minutes the hall was empty and all the folks were on the bus and gone. I had only met the two brothers. But I knew this was not going to be a relaxing job in the wilderness.

All-day long I studied the folks’ records, state regulations and started wading through the mountains of paperwork waiting for me. This, I thought, was what I expected - not much fun though. When I just about was ready to start tearing out my hair the evening shift arrived at about 3:00 pm and began to get ready for the return of the folks after day program. Everybody knew what to do and did it with very little oversight. I wondered - "They need me-Why?"

All of a sudden the bus arrived and again the organized chaos broke out and in a few minutes the folks were back in, coats were off and almost everyone was whisked off to the bathroom, or however, they were toileted. I wondered at how well everything was organized and accomplished.

Charlie was one of the first to be done with his bathroom routine and seemed to be waiting for me in the kitchen. When I walked over to him he looked at me and said -"IIII EEE".

I said Hi back and asked if he had a good day. He jerked his head up and down vigorously. I noted that a staff person that had just brought Charlie to the kitchen seemed a little irritated.

She looked at me and then looking at Charlie said "We came home wet again today - didn’t we?"

I thought, We?

The staff person went on - "Charlie comes home wet every day - don’t you?" Charlie’s head went down and  he said nothing.

I said to the staff - "Could we talk in the office for a moment?"

I started by asking her to tell me about Charlie and his wetting problem. I got a verbal avalanche about Charlie doing it "on purpose", he just "wants attention" and it is his way of "controlling the situation".

I let her vent for a bit - I knew its hard to maintain objectivity when you have to clean up bodily waste, lift a person out of a wheelchair, strip, wash, redress, and put a person back in their chair. Especially when you believe that they could have waited to use their urinal instead.

I said, "Let me think about it but in the meantime please don’t take Charlie to task in front of anyone else. No one likes that and it doesn’t work. Correct him in private".

The staff gave me a look that said to me - You’ll see - and left the office.

I watched and interacted with Charlie and got to know him better. He was a lot of fun and loved to joke and laugh. I could not see a mean bone in his body. His body that was bent and twisted by Cerebral Palsy and which only responded enough to his commands to frustrate him. Charlie could do almost nothing for himself.

            It became my habit to take Charlie out to the mailbox which was a few hundred feet away from the door to get the mail. I joked with him; we laughed and had a great time.

The Staff (Joan, especially) muttered that I was spoiling him. Well, maybe but I think I was the one getting spoiled - when he saw me at mail time he lit up - no matter what had happened that day - who could resist that? I could be a complete fool and Charlie loved it.

It occurred to me that if Charlie wanted attention - let’s be real we all want attention - then he should be able to get it positively. I wondered, could he really control his bodily functions if he had a reason to do so. A plan started to take form in my mind.

I met with Charlie and proposed to him that we make a deal. If he came home dry after day program then we could spend 15 minutes together just him and me. During that time we would get the mail and whatever else we could think of that he would like to do. Charlie made it clear that he liked the idea and when I asked him did he want to do it, he nodded his head vigorously.

For the next few days, everything worked as planned. He came home dry and we had a great 15 minutes together.

Then it happened, he came home wet.

We were both upset but a deal is a deal and we did not spend our 15 minutes together. I am not sure who was more upset but the deal had to be real or it would not matter.

But the funny thing was for the next few weeks he did not miss a day. I would see Charlie after the staff confirmed he came home dry and while we went to the mailbox.  We would sing - How Dry I Am. It was working so well that Charlie’s treatment team wanted a formal program written into his Individual Plan which would address his control of his bodily functions.

I put together a program in which Charlie could earn poker chips.  One chip for a specified amount of time he remained dry or a chip for each time he asked to use the urinal and was dry when he asked. Well, the program had a list of behaviors for which Charlie could earn chips. What the program needed was a list of things Charlie could "spend" his chips on. Since Charlie and I had started this thing many of the things he could "buy" had to do with me. There was the "mail run" and 15 minutes together. But this new program required more. We added a ride in my truck (Charlie loved that - I had to lift him out of his chair and put him in my truck. The ride had to last at least ten minutes).

One day after a heavy snowstorm, I was joking with Charlie about how I got nervous around snowbanks. I told him that I was afraid I would fall in one and freeze my butt and then I would probably crap ice sickles. He laughed so hard I swear I thought we were going to need to medicate him. But I thought why not - it went on the list. Charlie could buy the right to push me into the snowbank.

Charlie surprised most of the staff with how much he was driven to succeed in this program. We made a bank out of a mayonnaise jar and his earned chips went in it.All of the items he could purchase were not the same price. For instance, a trip to the mailbox was one chip, a ride in the truck was three chips and me in the snow the bank was six chips. I was not a cheap date!  Oh, and after a while, if Charlie was wet he was given a "wet ticket" and was fined a chip which was necessary to keep Charlie honest.

It was a wonderful plan. Charlie did very well - not only was he dry most of the time but also he was becoming quite a banker - you couldn’t put one over on him. There was rarely two days in a row I did not spend time in the snowbank. I would see Charlie in the morning and he, with great difficulty, would point at his chip bank and then at the snowbank outside. I would make a huge fuss and complain about my soon to be frozen butt. One day while Charlie pushed me into the bank - I had to help him because he didn’t have the coordination to do it himself - our Physical and Speech Therapist came running out and started kicking more snow on me. Charlie laughed so hard he nearly lost chips.

Well, did Charlie always stay dry? - No.  Was his life better? - I think so. The staff seemed to like him better and wanted to spend more time with him. Surprisingly the staff did not baby Charlie as much. But I think I saw some of the staff sneaking chips into Charlie’s bank on snowy days.

 

End