- Jun 27, 2015
- 265
- 215
- Country
- United States
- Gender
- Male
- Faith
- Christian
- Marital Status
- Private
I have a brother who has severe autism and cannot talk very much (says only brief words or phrases). I usually visit him in the middle of every week and Mom visits him every weekend. When we visit him, we pack an activity bag that may include at least one puzzle, at least one children's book, a toy, a snack, a ball or bean bag, and a drink. He 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, recently during my midweek visit, he had a behavior problem, so I decided to skip my weekly visit on the following week. The room inside the administration building that I visited him in has a few tables and several chairs. Well, what my brother did is he decided to do the activity bag sitting in almost every chair at the tables. The activity bag had one puzzle, one book, and a bean bag, and a cup and a water bottle for his drink. During this visit, after my brother finished the activity bag, he would sit down in the next chair and get all the activities out again and put the puzzle together again, flip through the pages in the book, and also put the objects including the cup, water bottle, and bean bag on the corners of the table near the spot where he was sitting at. He would do this in almost every chair, and there was a table in back of the chairs with decorations in it, with no chairs and he put the activity bag on each side edge of the table and did the activity bag in those spots also (two additional spots). So there was a total of eight spots he did the activity bag in. In the first spot he did the activity bag, I would point to pictures in the puzzle or book and ask him to say the words for things that I pointed at or tell him what things are, and he did not require this action of pointing to things to be repeated in the additional spots. I think him doing the activity bag in every chair and additional spots added 20 additional minutes to the visit, and we still have to walk to his bedroom in the cottage to do the activities again.
When my brother started doing the additional spots, I told him that I would not come next week if he kept on doing it. I don't know how helpful it is to make a threat like that, because I am under the impression that he may continue to want to practice this new behavior on future visits.
When I moved closer to my brother's location in 2022, at first I only visited him once a month, but because he was not doing well, I started visiting him every week maybe almost two years ago. Also, in the past my brother lived at a care center where he was only 15 minutes away from my parents' house, and for 12 years, my parents visited him three times a week with the activity bag. My mom also did a swimming program midweek where she would go swimming at the pool with him. Well, my brother's care center 15 minutes from my mom's house was permanently closed, and my brother had to move in 2017 an hour and fifteen minutes away to a new care center. My mom's visit dropped to only once a week, and I usually visited him once a month from my mom's house. I feel this move was the darkest time of my brother's life, as the loss of the three visits a week led to the exacerbation of his behavior problems, where he developed an eating disorder, more physical aggression, and acts of damage to property. He has gotten better from these kind of issues over time, but still has behavior problems at his care center to some extent. So my brother having regular visits or more visits each week seems important to restore what was lost in having three or more visits each week at the care center closer to my mom.
After moving closer to my brother, so that I am only about 20 minutes from him, I started visiting him once a week. However now, because of more repetitive behavior, I am wondering about decreasing or skipping my visits sometimes. If I find that I have high stress levels with my visits to my brother, or he finds a way to add increasing repetitive behavior to the visits, I may find that I want to decrease my visits to once a month to have more balance and peace of mind. For example, if my brother would do the activity bag in every chair in that room, and then add a new behavior later where he would have to go in the adjacent second room nearby and do the activity bag in every chair in the second room too, at that point I may more seriously think about reducing my visits. When it gets warm enough outside, my brother could add a behavior where he has to do the activity bag on the corners of all the tables nearby outside. Before this winter, when it was warmer out, he only had a behavior where he had to place the activity bag on the corners of the table, but he did not do the activities in the activity bag in each spot. Since this is a new behavior, he may add the behavior of doing the activities in the activity bag in each spot when it warms up. It might be possible that if I switch back to a duffle bag with zippers that because it is zipped closed he would not do the activities multiple times, but switching back could take the risk that he would have to do it multiple times now, and he takes real long zipping and unzipping the zippers repeatedly.
If I find it stressful that he has to do the activity bag in about eight spots in the room in the administration building, I could just bring something to read, and while he is involved in the behavior, spend time reading and hope he doesn't put the reading material in the activity bag. I printed out a paper with Romans 8 on it, so I may work on memorizing Bible verses during the behavior.
After I started visiting my brother every week, after several months, he started a new behavior at the picnic shelter where he would have to place the activity bag on the corner of each picnic table and on the sides of the benches on the picnic tables and squeeze the table underneath each spot. So each picnic table had four to six spots, and with there being about 20 or so picnic tables, this behavior would add about 20 minutes to the visit. So mom and I decided to just visit him at a table outside the administration building where there are less tables, and this resulted in him losing the walk on the nature trail to the picnic shelter. After we made this change, I noticed he started becoming more obsessive with the activities in the activity bag, taking a lot more time on lining things up obsessively. Like dominoes had to be exactly lined up to the millimeter. Mom and I have been bringing less activities. I will only bring one puzzle now and one book. I started not bringing the toys such as dominoes, barrel of monkeys, or Legos, whereas before, I would usually bring one toy with the activities. At one point my brother did a book over and over again about 5 times and my response was to bring less activities in case he had this behavior problem. So since the time where I decided to visit my brother every week, he has gradually become progressively worse with his behaviors with his repetitive behaviors with the activities.
Also my brother seems to be spoiled in that he has behavior problems that negatively affect others living with him. Because he is so focused on the completion of activities, he would force other people at his care center to put away their activities. Also, the way he completed other people's activities in the past is that he would rip up people's artwork when they completed their work. So I am thinking it may be okay if my brother has a consequence for his behavior rather than just being able to run the show.
So I am wondering if I feel too high stress levels with my visits or he develops new additional behaviors beyond just doing the activity bag in eight spots in the room like adding the second room, that maybe I want to decrease my visits to once a month, since I used to go only once a month for a long time. When my brother does a behavior like this, I get very stressed out during the visit. I feel like he is taking advantage of our visits to add these behaviors, but he doesn't know that we have schedules or things we want to do after the visit. He doesn't have reference to time for our schedules since the only thing he knows is being at his cottage and going to bed. He doesn't know that my mom drives an hour and fifteen minutes home, or that I like getting out early enough to have more free time at my apartment. However if all he does after the visit is sit around, maybe he wants to increase the time of the visits. The care center has a time frame for the visit where they want the visit to fit in an hour and a half time slot, but they don't enforce this time frame or say anything to us if the visit goes over. If the visit goes overtime, he may be late for his supper. So there are some reasons to limit the visit time, beyond just my personal reason of wanting to leave earlier.
So is it okay to decrease my visits to once a month if I find reason too?
Also, what do you think about me skipping my visit to my brother the following week or additional weeks if he has a behavior problem? I am much different than my mom, since my mom has visited him faithfully every week, and she has not considered skipping a week because of behavior. There was even one instance on a past visit where he reached into his pants and got poop on his hands and we had to get towels to wipe it off. It is something like this that would make me want to skip the visit the following week, but when this happened about two years ago, mom still visited him the following week and did not skip the visit. He did not do this behavior again and I think he had only done it one time during all of the years we have visited him.
If I use the strategy of skipping visits, I think I don't want to tell him with a threat that I may skip the visit the following week, but I may just skip without saying anything to him, so that if nothing is said, that gives me the ability to change my mind and still visit him after I cool off. The possible problem of using the strategy of skipping my visit one week, is that when I go on vacation, I may skip the visit that week, and I may tell him I'm going on vacation the next week. So there may be times when I miss visits that are not a result of bad behavior on his part.
Lastly, is it too harmful to him if I change to visiting him once a month, and my mom passes away and no longer visits him every week? So in that way, my brother loses a weekly visit from his mom, and I am only going once a month, so I don't make up for losing the once a week visit well, and he may struggle with this and misbehave more at his care center. Mom is in her mid 70s now, so that is why I am giving consideration to this concern.
Well, recently during my midweek visit, he had a behavior problem, so I decided to skip my weekly visit on the following week. The room inside the administration building that I visited him in has a few tables and several chairs. Well, what my brother did is he decided to do the activity bag sitting in almost every chair at the tables. The activity bag had one puzzle, one book, and a bean bag, and a cup and a water bottle for his drink. During this visit, after my brother finished the activity bag, he would sit down in the next chair and get all the activities out again and put the puzzle together again, flip through the pages in the book, and also put the objects including the cup, water bottle, and bean bag on the corners of the table near the spot where he was sitting at. He would do this in almost every chair, and there was a table in back of the chairs with decorations in it, with no chairs and he put the activity bag on each side edge of the table and did the activity bag in those spots also (two additional spots). So there was a total of eight spots he did the activity bag in. In the first spot he did the activity bag, I would point to pictures in the puzzle or book and ask him to say the words for things that I pointed at or tell him what things are, and he did not require this action of pointing to things to be repeated in the additional spots. I think him doing the activity bag in every chair and additional spots added 20 additional minutes to the visit, and we still have to walk to his bedroom in the cottage to do the activities again.
When my brother started doing the additional spots, I told him that I would not come next week if he kept on doing it. I don't know how helpful it is to make a threat like that, because I am under the impression that he may continue to want to practice this new behavior on future visits.
When I moved closer to my brother's location in 2022, at first I only visited him once a month, but because he was not doing well, I started visiting him every week maybe almost two years ago. Also, in the past my brother lived at a care center where he was only 15 minutes away from my parents' house, and for 12 years, my parents visited him three times a week with the activity bag. My mom also did a swimming program midweek where she would go swimming at the pool with him. Well, my brother's care center 15 minutes from my mom's house was permanently closed, and my brother had to move in 2017 an hour and fifteen minutes away to a new care center. My mom's visit dropped to only once a week, and I usually visited him once a month from my mom's house. I feel this move was the darkest time of my brother's life, as the loss of the three visits a week led to the exacerbation of his behavior problems, where he developed an eating disorder, more physical aggression, and acts of damage to property. He has gotten better from these kind of issues over time, but still has behavior problems at his care center to some extent. So my brother having regular visits or more visits each week seems important to restore what was lost in having three or more visits each week at the care center closer to my mom.
After moving closer to my brother, so that I am only about 20 minutes from him, I started visiting him once a week. However now, because of more repetitive behavior, I am wondering about decreasing or skipping my visits sometimes. If I find that I have high stress levels with my visits to my brother, or he finds a way to add increasing repetitive behavior to the visits, I may find that I want to decrease my visits to once a month to have more balance and peace of mind. For example, if my brother would do the activity bag in every chair in that room, and then add a new behavior later where he would have to go in the adjacent second room nearby and do the activity bag in every chair in the second room too, at that point I may more seriously think about reducing my visits. When it gets warm enough outside, my brother could add a behavior where he has to do the activity bag on the corners of all the tables nearby outside. Before this winter, when it was warmer out, he only had a behavior where he had to place the activity bag on the corners of the table, but he did not do the activities in the activity bag in each spot. Since this is a new behavior, he may add the behavior of doing the activities in the activity bag in each spot when it warms up. It might be possible that if I switch back to a duffle bag with zippers that because it is zipped closed he would not do the activities multiple times, but switching back could take the risk that he would have to do it multiple times now, and he takes real long zipping and unzipping the zippers repeatedly.
If I find it stressful that he has to do the activity bag in about eight spots in the room in the administration building, I could just bring something to read, and while he is involved in the behavior, spend time reading and hope he doesn't put the reading material in the activity bag. I printed out a paper with Romans 8 on it, so I may work on memorizing Bible verses during the behavior.
After I started visiting my brother every week, after several months, he started a new behavior at the picnic shelter where he would have to place the activity bag on the corner of each picnic table and on the sides of the benches on the picnic tables and squeeze the table underneath each spot. So each picnic table had four to six spots, and with there being about 20 or so picnic tables, this behavior would add about 20 minutes to the visit. So mom and I decided to just visit him at a table outside the administration building where there are less tables, and this resulted in him losing the walk on the nature trail to the picnic shelter. After we made this change, I noticed he started becoming more obsessive with the activities in the activity bag, taking a lot more time on lining things up obsessively. Like dominoes had to be exactly lined up to the millimeter. Mom and I have been bringing less activities. I will only bring one puzzle now and one book. I started not bringing the toys such as dominoes, barrel of monkeys, or Legos, whereas before, I would usually bring one toy with the activities. At one point my brother did a book over and over again about 5 times and my response was to bring less activities in case he had this behavior problem. So since the time where I decided to visit my brother every week, he has gradually become progressively worse with his behaviors with his repetitive behaviors with the activities.
Also my brother seems to be spoiled in that he has behavior problems that negatively affect others living with him. Because he is so focused on the completion of activities, he would force other people at his care center to put away their activities. Also, the way he completed other people's activities in the past is that he would rip up people's artwork when they completed their work. So I am thinking it may be okay if my brother has a consequence for his behavior rather than just being able to run the show.
So I am wondering if I feel too high stress levels with my visits or he develops new additional behaviors beyond just doing the activity bag in eight spots in the room like adding the second room, that maybe I want to decrease my visits to once a month, since I used to go only once a month for a long time. When my brother does a behavior like this, I get very stressed out during the visit. I feel like he is taking advantage of our visits to add these behaviors, but he doesn't know that we have schedules or things we want to do after the visit. He doesn't have reference to time for our schedules since the only thing he knows is being at his cottage and going to bed. He doesn't know that my mom drives an hour and fifteen minutes home, or that I like getting out early enough to have more free time at my apartment. However if all he does after the visit is sit around, maybe he wants to increase the time of the visits. The care center has a time frame for the visit where they want the visit to fit in an hour and a half time slot, but they don't enforce this time frame or say anything to us if the visit goes over. If the visit goes overtime, he may be late for his supper. So there are some reasons to limit the visit time, beyond just my personal reason of wanting to leave earlier.
So is it okay to decrease my visits to once a month if I find reason too?
Also, what do you think about me skipping my visit to my brother the following week or additional weeks if he has a behavior problem? I am much different than my mom, since my mom has visited him faithfully every week, and she has not considered skipping a week because of behavior. There was even one instance on a past visit where he reached into his pants and got poop on his hands and we had to get towels to wipe it off. It is something like this that would make me want to skip the visit the following week, but when this happened about two years ago, mom still visited him the following week and did not skip the visit. He did not do this behavior again and I think he had only done it one time during all of the years we have visited him.
If I use the strategy of skipping visits, I think I don't want to tell him with a threat that I may skip the visit the following week, but I may just skip without saying anything to him, so that if nothing is said, that gives me the ability to change my mind and still visit him after I cool off. The possible problem of using the strategy of skipping my visit one week, is that when I go on vacation, I may skip the visit that week, and I may tell him I'm going on vacation the next week. So there may be times when I miss visits that are not a result of bad behavior on his part.
Lastly, is it too harmful to him if I change to visiting him once a month, and my mom passes away and no longer visits him every week? So in that way, my brother loses a weekly visit from his mom, and I am only going once a month, so I don't make up for losing the once a week visit well, and he may struggle with this and misbehave more at his care center. Mom is in her mid 70s now, so that is why I am giving consideration to this concern.
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