I am struggling with a major dilemma involving how to deal with a behavior problem my special needs brother has been involved in when I visit him at his care center. I have a brother named Tom who has severe autism and cannot talk very much (says only brief words or phrases). I visit him in the middle of every week and Mom visits him every weekend. When we visit him, we pack an activity bag that includes puzzles, children books, a toy, a snack, a ball, and a drink. Tom is over 40 years old but has a mind like a child. When one of us visits him, he does the activities once outside or inside the administration building depending on weather. He does the activities a second time in his room at his cottage.
Well before, when it was nice out, we always used to walk him on a nature trail that is on the grounds and take him to the picnic shelter where there are a lot of picnic tables. Last year he developed a behavior problem that has been a hassle for us. He started a new behavior where he will place the activity bag on the corner of every picnic table after he is finished with the activities and has placed them back in the bag. He places the activity bag on each one of the four corners of each picnic table and squeezes the underneath portion of each corner of the table that he places the activity bag on. The picnic tables have benches on each side of the table where you sit, and so he has to place the activity bag on the left and right edge of each bench on the picnic table and squeeze underneath each edge. There are a large number of picnic tables at the picnic shelter including a cluster in the back near the woods. Tom will get some mud on his clothes by doing the tables in the back. There is no way for us to convince Tom to avoid doing the tables by asking him not to. My brother has a lot of obsessive compulsive repetitive behavior and routines.
Well, when he started this behavior with the picnic tables about a year ago, this behavior would add about 20 extra minutes to our visit time. My mom tolerated it for many visits, but this summer she decided it was too much for her, because she has a long drive home, and she moved the outside visit location to a picnic table outside the administration center that only has two other tables nearby. I decided to follow suit and use the same outside location for my visit to Tom. Well with this change, Tom misses out on the walk on the nature trail which is about 5 or 10 minutes. In my mom's case, he misses out on the bike ride he would go on with her on two separate bikes on the road to the picnic shelter.
We have been using the new location, and recently, Tom has been expressing his desire to have the picnic shelter back. I tried the picnic shelter once with him after using the new location and he did all the tables again. Since we have not been using the picnic shelter or nature trail, Tom has said out loud to us at the beginning of each visit words like “picnic table” or “nature trail”, and moving his hand in the direction of the picnic shelter. He will do this when we first get him from the cottage to walk to the location by the administration building where we had placed the activity bag prior to getting him.
So I wanted to ask for opinions on what you think I should do. I had thoughts of possibly going back to using the nature trail and picnic shelter with Tom and just tolerating the obsession. My mom on the other hand might not change back to the old location. The distance Mom has to drive home from the care center is an hour and fifteen minutes. So because of the long drive and it being close to 5pm at the end of the visit, she does not like the additional 20 minutes with the tables. However, because I live only 20 minutes away from my brother, it is easier for me to tolerate the behavior.
I am struggling with what decision to make because once I go back to the picnic shelter, it would be more difficult to change back to the new location if I decided to. Autism makes it difficult to accept changes in a routine, so I couldn't really go back and forth with my decision. I am not sure I want to commit to dealing with a longer routine. I am trying to weigh the pros and cons of my decision.
Since Mom visits on Saturday and leaves about 4:30 or 5 pm, she does not have to deal with rush hour traffic. However, since I visit in the middle of the week, usually on Wednesday, if my visit to Tom ends on time and I leave at 4:30 pm, I have to deal with more rush hour traffic. There is an on ramp to the highway that is difficult to merge onto sometimes during rush hour where there is only a small section to use to merge onto it, while other cars are merging off of it. Several weeks there was a situation where I tried to edge my way into the lane and a car was not backing up to let me in, and I ended up pulling in front of them, and they blasted me. If my visit to Tom would end a little later or even at 5:30 pm or 6 pm, I might have a safer drive home. So while Mom does not face rush hour traffic, I do, and maybe getting out later doesn't hurt me since I only have a 20 minute trip back home.
However, Tom's supper is served usually at 5pm, and if he is late they have to hold it over for him. Which shouldn't really matter that much, but campus administration gave us visit time length guidelines where they did not want visits to go late. However they have not been enforcing these time lengths, so it may not be a big deal.
For me, what I struggle with is knowing that Tom is really suffering with the severe autism and not being able to speak much, and is missing out on a lot in life. He is in the cottage a lot of the day and I don't know if he gets out much. He has specific daily routines of repetitive behavior at the cottage. They have an on campus day activity program but he does not go to it that much. So because of Tom's severe disability and missing out on a lot of the enjoyment of life, I am wondering if I really want to take the picnic shelter and nature trail away from Tom. I think I might want to give these back to him.
However, I also think about myself some, and I like getting done with the visit early. If I decide to go to the fitness center afterwards, which I have not been often doing, I like getting there earlier in the evening. I also think that often I am just going back to my place in the evening and relaxing and chatting with friends, so this is not a big deal.
However, I also think Tom should not get everything he wants because sometimes he tends to run the show. There was a problem where if other people were using the picnic shelter, that he would have to pour out their drinks. With the activity bag, Tom is really focused on the need for all activities to be completed. So if there are other people out there, he has to complete their activities too, which includes pouring out their drinks on the ground. So I made my visits to Tom at a less busy time so that we would be the only ones out there. In the past, during the pandemic, when residents were doing art work, Tom's focus on completing the activity was to rip up people's art work, and care staff did not really intervene because of concern that he could get physically aggressive. During the pandemic, no visits were allowed for a period of time, so he had worse behavior though.
The other issue is Mom does not want to talk that much about Tom's behavior to the care center leadership. I was thinking of explaining the situation to them and asking if there was any way any of the excess picnic tables could be moved to another location, especially that cluster of extra tables outside of the picnic shelter by the woods in the back where Tom gets muddy doing the picnic tables. However Mom prefers to not ask them about this because she worries that they will push for more medication in Tom's medication meeting. As the guardian, Mom can say no to medication increases though.
Well before, when it was nice out, we always used to walk him on a nature trail that is on the grounds and take him to the picnic shelter where there are a lot of picnic tables. Last year he developed a behavior problem that has been a hassle for us. He started a new behavior where he will place the activity bag on the corner of every picnic table after he is finished with the activities and has placed them back in the bag. He places the activity bag on each one of the four corners of each picnic table and squeezes the underneath portion of each corner of the table that he places the activity bag on. The picnic tables have benches on each side of the table where you sit, and so he has to place the activity bag on the left and right edge of each bench on the picnic table and squeeze underneath each edge. There are a large number of picnic tables at the picnic shelter including a cluster in the back near the woods. Tom will get some mud on his clothes by doing the tables in the back. There is no way for us to convince Tom to avoid doing the tables by asking him not to. My brother has a lot of obsessive compulsive repetitive behavior and routines.
Well, when he started this behavior with the picnic tables about a year ago, this behavior would add about 20 extra minutes to our visit time. My mom tolerated it for many visits, but this summer she decided it was too much for her, because she has a long drive home, and she moved the outside visit location to a picnic table outside the administration center that only has two other tables nearby. I decided to follow suit and use the same outside location for my visit to Tom. Well with this change, Tom misses out on the walk on the nature trail which is about 5 or 10 minutes. In my mom's case, he misses out on the bike ride he would go on with her on two separate bikes on the road to the picnic shelter.
We have been using the new location, and recently, Tom has been expressing his desire to have the picnic shelter back. I tried the picnic shelter once with him after using the new location and he did all the tables again. Since we have not been using the picnic shelter or nature trail, Tom has said out loud to us at the beginning of each visit words like “picnic table” or “nature trail”, and moving his hand in the direction of the picnic shelter. He will do this when we first get him from the cottage to walk to the location by the administration building where we had placed the activity bag prior to getting him.
So I wanted to ask for opinions on what you think I should do. I had thoughts of possibly going back to using the nature trail and picnic shelter with Tom and just tolerating the obsession. My mom on the other hand might not change back to the old location. The distance Mom has to drive home from the care center is an hour and fifteen minutes. So because of the long drive and it being close to 5pm at the end of the visit, she does not like the additional 20 minutes with the tables. However, because I live only 20 minutes away from my brother, it is easier for me to tolerate the behavior.
I am struggling with what decision to make because once I go back to the picnic shelter, it would be more difficult to change back to the new location if I decided to. Autism makes it difficult to accept changes in a routine, so I couldn't really go back and forth with my decision. I am not sure I want to commit to dealing with a longer routine. I am trying to weigh the pros and cons of my decision.
Since Mom visits on Saturday and leaves about 4:30 or 5 pm, she does not have to deal with rush hour traffic. However, since I visit in the middle of the week, usually on Wednesday, if my visit to Tom ends on time and I leave at 4:30 pm, I have to deal with more rush hour traffic. There is an on ramp to the highway that is difficult to merge onto sometimes during rush hour where there is only a small section to use to merge onto it, while other cars are merging off of it. Several weeks there was a situation where I tried to edge my way into the lane and a car was not backing up to let me in, and I ended up pulling in front of them, and they blasted me. If my visit to Tom would end a little later or even at 5:30 pm or 6 pm, I might have a safer drive home. So while Mom does not face rush hour traffic, I do, and maybe getting out later doesn't hurt me since I only have a 20 minute trip back home.
However, Tom's supper is served usually at 5pm, and if he is late they have to hold it over for him. Which shouldn't really matter that much, but campus administration gave us visit time length guidelines where they did not want visits to go late. However they have not been enforcing these time lengths, so it may not be a big deal.
For me, what I struggle with is knowing that Tom is really suffering with the severe autism and not being able to speak much, and is missing out on a lot in life. He is in the cottage a lot of the day and I don't know if he gets out much. He has specific daily routines of repetitive behavior at the cottage. They have an on campus day activity program but he does not go to it that much. So because of Tom's severe disability and missing out on a lot of the enjoyment of life, I am wondering if I really want to take the picnic shelter and nature trail away from Tom. I think I might want to give these back to him.
However, I also think about myself some, and I like getting done with the visit early. If I decide to go to the fitness center afterwards, which I have not been often doing, I like getting there earlier in the evening. I also think that often I am just going back to my place in the evening and relaxing and chatting with friends, so this is not a big deal.
However, I also think Tom should not get everything he wants because sometimes he tends to run the show. There was a problem where if other people were using the picnic shelter, that he would have to pour out their drinks. With the activity bag, Tom is really focused on the need for all activities to be completed. So if there are other people out there, he has to complete their activities too, which includes pouring out their drinks on the ground. So I made my visits to Tom at a less busy time so that we would be the only ones out there. In the past, during the pandemic, when residents were doing art work, Tom's focus on completing the activity was to rip up people's art work, and care staff did not really intervene because of concern that he could get physically aggressive. During the pandemic, no visits were allowed for a period of time, so he had worse behavior though.
The other issue is Mom does not want to talk that much about Tom's behavior to the care center leadership. I was thinking of explaining the situation to them and asking if there was any way any of the excess picnic tables could be moved to another location, especially that cluster of extra tables outside of the picnic shelter by the woods in the back where Tom gets muddy doing the picnic tables. However Mom prefers to not ask them about this because she worries that they will push for more medication in Tom's medication meeting. As the guardian, Mom can say no to medication increases though.
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