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I first met Danny in January of 2002, an SSW student walking into something that I knew nothing about but so curious to learn. Danny was sitting in his “black chair” which I soon learned seemed to be the spot he chose to curl up in and block out the world. I had learned he was a talented artist, saw much of his earlier work and asked if he could be my focus as a student, doing art with him, talking to him, basically asking him to let me into his world hoping he would accept me and allow me to show him mine. Danny and I built a relationship of trust and respect, it took time but it was mutual. I began to notice that Danny was refusing to do art work, something I knew he had once took pride in and loved, he spent more and more time in the “black chair” withdrawing himself from everything around him, the question was why? After researching medications and the autistic I began to ask his mother many questions, and being the strong, dedicated mother that she is, explained the changes that medications given to Danny had caused. While still living at the group home in Queensville a reduction of Zyprexa was tried, and ended in failure. The failure was not Danny’s but the support’s put in place were not appropriate and did not meet his needs. Danny moved to his own apartment in September of 2003, a few selected staff who worked well with Danny, staff he trusted and knew cared about him agreed to move with him and be his support circle. He took the transition well and seemed to like having his own space with less going on around him. He began to enjoy reading, either him reading to me or the other way around, but still did not show interest in his art or another passion of his which was video games. Another reduction was discussed with Danny’s support team, we all agreed that we would do everything we could to keep him safe and make this one work. We began the reduction process by putting many safety protocols in place, consulting with everyone who would be involved, basically troubleshooting before we began. We all felt ready, all the while explaining to Danny how he might feel at times, how we would help him and he to seemed ready. As a team we had decided to take this reduction slowly, beginning in November of 2003. Things began well and continued to move ahead with only minor incidents. What we as staff began to see was a Danny slowing coming out of his shell, he began to do more for himself, loved getting out for long walks and his beautiful smile was coming out more and more. He was communicating his needs to us and how good we felt that he was working so hard through this experience that at times was hard on him, when he felt not so great he let us know and we did what we could to make him more comfortable. The reduction continued on until his final reduction in March the 12th of 2004, with Danny doing very well, staff who had previously refused to work with him were now asking if they could be involved, they to were seeing a “better” Danny. His mother and I had discussed getting the “old Danny” back but realized what we could have, what he could be was a “better” Danny; this was the goal for him and his quality of life. I want it to be known that this process was not an easy one at times, but sometimes what doesn’t easily come ends up with an incredible outcome, and this is what he had. Two months free of Zyprexa and not one SIB during that period of time. He began going out into the community more often, whether it was to go to Tim Horton’s for his favorite yellow donut, trips to the mall, and visits from family, swimming with his friends from Queensville. He loved running through the forest during our walks, exploring, telling me what the different birds were, and smiling all the while. Even the times we had gotten lost he loved it and would be the one to lead me back to the van. An incredible sense of direction that I unfortunately lack being the one who got us lost in the first place. I was getting to know a new Danny who was allowing me to be a part of his life; he was teaching me as much as I was teaching him. We began a literacy program working on math, which he is very good at, reading, also something he enjoys, listening to music and singing together until we almost lost our voices. He was on his way to becoming what we had all prayed for, the “better” Danny. This is where our story takes a turn, and unfortunately, for Danny, not one for the best. His support circle began to slowly fall apart leaving him feeling I’m sure, a sense of loss and confusion. As we tried to increase his circle of support negativity, or I hate to say it even perhaps some jealousy, of what had been accomplished, as their were many who disagreed with what we were doing and told us many occasions we would fail, he would fail. My personal observations, and they may be wrong, but it’s what I had sensed from him was that something was upsetting him, at times he seemed frightened. Was it bringing in new staff? I’m not sure. Was it that his circle was becoming bored with being with just one individual working in the small apartment? Again I can’t be certain. Was it that outside supports were not listening to Danny or us? Danny, as a beautiful human being needed things for his growth but as in many homes budget was a problem that came up over and over again. This was beginning to look and feel like to me a set up for failure, a failure that would cost Danny all that he had accomplished. As letters began to be written asking for suggestions, receiving no reply, the staff that had formed a strong circle around Danny began to fall apart, arguing between each other, coming in to work with Danny feeling frustrated and angry, all of this began to take it’s toll as Danny was very in tune with our emotions and he was feeling what we were feeling. How unfair for him this was, but how to correct it was the question. We tried training sessions, talking about what was happening, how we could improve. We were constantly told it wasn’t our fault, but yes, it was our fault as we were failing him. There is much more to tell and I’m hoping as Danny’s caregiver and friend that by telling our story it may help us to help not only Danny but others as well. I’ll start with this, the basics, and add to our story, talk about how we can undo the injustice that was done to him but on a positive note also talk about what we see for his future.
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