Today is Chef's official last day of Grade 10.
It's also party day at school and a festival weekend where we live. Both of these could cause the next few days to go either way, but I think I remember Chef enjoying last years town festival so hopefully that and the school party will help in getting Chef past the upcoming exam week.
Chef has been quite quiet the last few days other than regular comments about his EA going to Africa, exam week coming up, and how cool all the video games are at school. He's been wearing his bathrobe inside-out all week, even with reminders, and it is already showing signs of wear and tear even though he's only been using it a week or two. Hygiene prompts have fallen on deaf ears, and the same outfit has been worn for a week. Chef seems more tired than usual and has been sneezing.
When I asked him what he was looking forward to most about summer holidays, he first shrugged and said he didn't know. When reminded to take some time to think about the question before answering, he paused then said, "The quiet." When I asked him for more details, he said he was looking forward to not having to hear noise all day at school.
With Chef's recent interest in reading books about Autism (after watching the Temple Grandin and RainMan movies), I'm hoping his interest will continue through summer. We have tons of books in our house (though I'm trying to minimize!), including many on the medieval era (another area of interest for Chef, though he's recently developed more of an interest in greek mythology), nature, trivial facts, and various diagnoses, etc. Chef's an avid reader, but he didn't do much reading at all last summer (possibly due to my offer to pay him money for any 2 or 3 page book reports he would do on books he'd read). I'm also hoping he'll go back to strumming/experimenting on the guitar - something he was willingly doing outside last year til neighbourhood kids asked him why he was doing that. We'll try some visual art again this summer, probably focusing on watercolours since he did a cool watercolour piece before Christmas. We also have our deck plants and a plot in the community garden, and Chef's usually-eagerly-embraced role is to look for good shots when we go on photography walks.
There is a family who has signed on to do once-a-month weekend respite, but nothing's happened with that since the first weekend Chef went there at the end of April, and we haven't heard from them nor have they returned calls from Chef's worker. My married daughter and her husband usually provide 4 hours of evening respite every other week, but they will be moving to another town in summer. Finding respite providers has always been a challenge. When I worked with Community Living, there were some staff who would have been great with/for Chef, but they weren't interested in taking on respite in addition to their shifts. I'm so very thankful for the respite funding that is in place - hopefully we'll be able to find providers to match.
Showing posts with label respite. Show all posts
Showing posts with label respite. Show all posts
Friday, June 17, 2011
Monday, May 30, 2011
Monday, May 30, Part Two
Chef hates attending medical appointments himself, and he isn't big on me attending mine either.
Last Tuesday, Chef needed to go over to our neighbour's place in the morning until the school bus arrived. I had to be at appointments about an hour away. Chef has always found it difficult to manage if he knows I'm not feeling well or have medical appointments. His anxiety is heightened during such times, and there's always a delicate balance between preparing Chef for possible changes to his day (if he needs to go to respite due to appointments) and keeping his anxiety at bay otherwise. If Chef is told too soon about a change, it heightens his anxiety which is usually spilled out in various ways til the event happens. If he's not told til the last possible minute, there's a risk of anger/mistrust over not being told earlier.
In hopes of providing enough time for Chef to process his feelings beforehand and not take out his anxiety on our neighbours, I told Chef two days before my appointment that I would be leaving on Tuesday morning and he would need to go to our neighbours' place til the school bus arrived. Chef asked a few questions about when I would be back, where the appointment was, and how I felt about the appointment. I'm always matter-of-fact with those types of responses with Chef - I wouldn't be back til after Chef was home from school but his sister would be waiting for him at home when he got off the bus, provided the name of the hospital and general location, and told him I was looking forward to the appointment because it would help figure out what's happening with my leg because it doesn't feel right sometimes. Chef nodded. Over the next couple of days he seemed unsettled and a bit on edge and asked a few times for the same information about my appointment. On Tuesday morning, he seemed to be in good space when he went over to the neighbours' house. When I called to make sure he'd gone inside, my neighbour said she'd been teasing Chef a bit about having heard him going up and down the stairs the night before (we live in a townhouse and share a wall). She said that Chef had told her that he wasn't making any noise on the stairs - "It was Mom throwing books." When the neighbour told him she knew it was him going up and down the stairs and not books being thrown, he kept to his statement. I told the neighbour she could go ahead and let him know that she'd told me his story so he knows we're all on the same page, then we chatted a bit and hung up. An hour later when I got to the hospital, there were numerous calls from my neighbour on my cell phone so I called her back while I was walking through the parking lot. Chef had run off. He hadn't waited for the bus and she didn't know where he was. She had tried calling the school only voicemail was available in the resource dept, and she didn't know if she should call the local police. I reassured her that I would call the police (who help us search when Chef disappears) and the school. Eventually we learned that Chef had shown up at the school! As stressful as that half hour was, it was equally shocking (and reassuring!) to learn that Chef had shown up at school.
Chef let his resource teacher know that he had run off because he was angry with me for going to my appointments.
It's difficult for kids like Chef. When things don't work out, he blames me. When his choices cause problems for him, he blames me. When he no longer has something because he wrecked it, he blames me. It almost seems like an extension of the need for an external brain. He does, however, occasionally show that he is slowly learning to accept responsibility for his choices. But the interesting thing is that for all his blaming and all his feelings of hatred and all his anger, he feels a lot of anxiety over my health. When I am down with a cold/flu, he usually does "act up" quite a bit (anxiety, change of routine, uncertainty of what to do) but he also dotes on me with numerous offers to make me some tea and to cook supper. He has also occasionally shown anger when I've said no thanks to the offers (wants to help, feels rejected), but he does go out of his way to be caring if I'm sick. And when he isn't having to deal with problems caused by his choices or deal with his anxiety, he can be a very caring family member. It sort of seems like a meadow of wildflowers being paved over with asphalt - every once in awhile the asphalt cracks enough to let the sun through and a flower eventually surfaces. That meadow is still there, it just needs ways to get through to the surface.
As Chef's Mom, it's interesting to see the changes, shifts, movements in my own journey. There was a time when this past weekend would have felt extremely heavy while it was happening and for a number of days afterwards. Now, it's just the way the weekend went. It certainly wasn't a pleasant weekend, but Chef is showing signs of growth and development and for that reason, it was a meaningful and successful weekend. It's barely one day out of this past weekend, and it feels ok. I know that Chef's support at school this year is the best school support he's received so far towards helping him learn how to live a healthy, appropriate, successful life. I know that Chef is growing and developing, and even though he is still struggling with honesty and good choices and taking care of his body, he isn't "rejecting" all of those things as strongly as he seemed to be rejecting them in the past. I know there are community members and friends who are available to help when Chef follows his impulse to run off from somewhere when he's dealing with anxiety (or just wants to go downtown for candy, though that hasn't been his focus this year), and that there are now more folks around who have a better understanding of Chef's needs and the needs of kids who live with similar challenges. But the biggest piece in the okay-ness is seeing Chef learning to work through issues and learning to address them appropriately in a healthy manner. Yes, the tantrum was over an hour long - but it was less than two hours and didn't heighten to an "outside-only" or "chat with the police" level. Yes, it took all weekend to get the dishes started - but Chef relearned and accepted the importance of good attitude and appropriate communication during a time that was very frustrating for him. It was hard work - but he worked at it.
It all takes time.
Last Tuesday, Chef needed to go over to our neighbour's place in the morning until the school bus arrived. I had to be at appointments about an hour away. Chef has always found it difficult to manage if he knows I'm not feeling well or have medical appointments. His anxiety is heightened during such times, and there's always a delicate balance between preparing Chef for possible changes to his day (if he needs to go to respite due to appointments) and keeping his anxiety at bay otherwise. If Chef is told too soon about a change, it heightens his anxiety which is usually spilled out in various ways til the event happens. If he's not told til the last possible minute, there's a risk of anger/mistrust over not being told earlier.
In hopes of providing enough time for Chef to process his feelings beforehand and not take out his anxiety on our neighbours, I told Chef two days before my appointment that I would be leaving on Tuesday morning and he would need to go to our neighbours' place til the school bus arrived. Chef asked a few questions about when I would be back, where the appointment was, and how I felt about the appointment. I'm always matter-of-fact with those types of responses with Chef - I wouldn't be back til after Chef was home from school but his sister would be waiting for him at home when he got off the bus, provided the name of the hospital and general location, and told him I was looking forward to the appointment because it would help figure out what's happening with my leg because it doesn't feel right sometimes. Chef nodded. Over the next couple of days he seemed unsettled and a bit on edge and asked a few times for the same information about my appointment. On Tuesday morning, he seemed to be in good space when he went over to the neighbours' house. When I called to make sure he'd gone inside, my neighbour said she'd been teasing Chef a bit about having heard him going up and down the stairs the night before (we live in a townhouse and share a wall). She said that Chef had told her that he wasn't making any noise on the stairs - "It was Mom throwing books." When the neighbour told him she knew it was him going up and down the stairs and not books being thrown, he kept to his statement. I told the neighbour she could go ahead and let him know that she'd told me his story so he knows we're all on the same page, then we chatted a bit and hung up. An hour later when I got to the hospital, there were numerous calls from my neighbour on my cell phone so I called her back while I was walking through the parking lot. Chef had run off. He hadn't waited for the bus and she didn't know where he was. She had tried calling the school only voicemail was available in the resource dept, and she didn't know if she should call the local police. I reassured her that I would call the police (who help us search when Chef disappears) and the school. Eventually we learned that Chef had shown up at the school! As stressful as that half hour was, it was equally shocking (and reassuring!) to learn that Chef had shown up at school.
Chef let his resource teacher know that he had run off because he was angry with me for going to my appointments.
It's difficult for kids like Chef. When things don't work out, he blames me. When his choices cause problems for him, he blames me. When he no longer has something because he wrecked it, he blames me. It almost seems like an extension of the need for an external brain. He does, however, occasionally show that he is slowly learning to accept responsibility for his choices. But the interesting thing is that for all his blaming and all his feelings of hatred and all his anger, he feels a lot of anxiety over my health. When I am down with a cold/flu, he usually does "act up" quite a bit (anxiety, change of routine, uncertainty of what to do) but he also dotes on me with numerous offers to make me some tea and to cook supper. He has also occasionally shown anger when I've said no thanks to the offers (wants to help, feels rejected), but he does go out of his way to be caring if I'm sick. And when he isn't having to deal with problems caused by his choices or deal with his anxiety, he can be a very caring family member. It sort of seems like a meadow of wildflowers being paved over with asphalt - every once in awhile the asphalt cracks enough to let the sun through and a flower eventually surfaces. That meadow is still there, it just needs ways to get through to the surface.
As Chef's Mom, it's interesting to see the changes, shifts, movements in my own journey. There was a time when this past weekend would have felt extremely heavy while it was happening and for a number of days afterwards. Now, it's just the way the weekend went. It certainly wasn't a pleasant weekend, but Chef is showing signs of growth and development and for that reason, it was a meaningful and successful weekend. It's barely one day out of this past weekend, and it feels ok. I know that Chef's support at school this year is the best school support he's received so far towards helping him learn how to live a healthy, appropriate, successful life. I know that Chef is growing and developing, and even though he is still struggling with honesty and good choices and taking care of his body, he isn't "rejecting" all of those things as strongly as he seemed to be rejecting them in the past. I know there are community members and friends who are available to help when Chef follows his impulse to run off from somewhere when he's dealing with anxiety (or just wants to go downtown for candy, though that hasn't been his focus this year), and that there are now more folks around who have a better understanding of Chef's needs and the needs of kids who live with similar challenges. But the biggest piece in the okay-ness is seeing Chef learning to work through issues and learning to address them appropriately in a healthy manner. Yes, the tantrum was over an hour long - but it was less than two hours and didn't heighten to an "outside-only" or "chat with the police" level. Yes, it took all weekend to get the dishes started - but Chef relearned and accepted the importance of good attitude and appropriate communication during a time that was very frustrating for him. It was hard work - but he worked at it.
It all takes time.
Friday, October 1, 2010
Respite Weekend
Last night after supper, Chef agreed that he needed to get his laundry done so he didn't have to worry about it the rest of the weekend, and said he would ask his sister for permission to go into the basement (because she is home and he has to walk through her room to get to the laundry room) as soon as she was finished with what she was doing. I told him that in the meantime I needed to chat with him. Our neighbour had told me that the last time Chef was at her place he was loudly and repeatedly passing wind and laughing. I reminded Chef that that isn't ok in our home and certainly not ok to do in the neighbours' home either. I told him he could go up to his room to think about that while waiting for his sister. I called him about three minutes later. No response. I called him again a couple of minutes later. Nothing. His sister finished what she was doing. After chatting with her a bit, I quickly ran an errand. I glanced up at Chef's window from outside and noticed his light was off. When I got home and peeked into Chef's room, he was sound asleep. I'd planned to talk with him about the weekend but sure wasn't about to wake him up to do so.
The weekend is a music and culture weekend event. Chef has previously attended, though has always participated very passively. One time, he did agree to attend a workshop on his own while I attended one (he has known most of the musicians for quite a few years, so he feels fairly comfortable around most of them). He was the only one in his workshop, so he had an hour of individual music instruction. That was awesome! With me being a musician, Chef has had much exposure to the music community, has attended many group performances, and has performed a few times with our group as well (including one time when he played part of a tune as a solo at a public indoor market and one time when he was even on stage with us at the Concert Hall). And though he's chosen to no longer play any instruments for the time being, he definitely still benefits from being at events. However, given the way things were around camping, and the cultural event in August, and him (suddenly not!) attending the music retreat in July, and the fact that Chef has often said to our neighbour, "I didn't want to go anyway" regarding music events, I chose to do this weekend on my own. Sometimes I feel like 24/7 staff whose only time off is when Chef is asleep or at school or with a respite provider. So even with recognizing all the social benefits and feel-goods this event may have provided for Chef - sometimes, I just need a break.
This morning, Chef independently started his day again with 20 minutes of exercising. Awesome! This was followed by much rushing-around-but-not-really-doing-anything. As of this morning, Chef has now agreed that he will go back to eating breakfasts that I make, so we will re-start that next week. I'm glad he has come to the point of recognizing that benefit.
Unfortunately, Chef was out and waiting for the bus before there was a pause for me to talk with him about the weekend (for those of you unfamiliar with Chef's challenges, there have been many times when I've started preparing Chef for something different a few days or more before the event, only to have Chef be all over the map for the entire time leading up to the event - it's always tricky trying to find that balance). When I told him I'd be going away and that he'd be at the neighbour's - he cried! This completely caught me off-guard. When I told him I was going for a music weekend (thinking he'd say he didn't want to go anyway), he continued to cry and said that he wanted to come. I was stunned. There wasn't much time before the bus. I asked if he'd put in his laundry so he had free time on the weekend, and regretted asking that question as soon as it was out of my mouth - as though he were missing the weekend away with me because he didn't do his laundry. I hugged him and told him there would be other music weekends together and that I hoped he'd have a great weekend. He dried his face and walked to the bus.
The weekend is a music and culture weekend event. Chef has previously attended, though has always participated very passively. One time, he did agree to attend a workshop on his own while I attended one (he has known most of the musicians for quite a few years, so he feels fairly comfortable around most of them). He was the only one in his workshop, so he had an hour of individual music instruction. That was awesome! With me being a musician, Chef has had much exposure to the music community, has attended many group performances, and has performed a few times with our group as well (including one time when he played part of a tune as a solo at a public indoor market and one time when he was even on stage with us at the Concert Hall). And though he's chosen to no longer play any instruments for the time being, he definitely still benefits from being at events. However, given the way things were around camping, and the cultural event in August, and him (suddenly not!) attending the music retreat in July, and the fact that Chef has often said to our neighbour, "I didn't want to go anyway" regarding music events, I chose to do this weekend on my own. Sometimes I feel like 24/7 staff whose only time off is when Chef is asleep or at school or with a respite provider. So even with recognizing all the social benefits and feel-goods this event may have provided for Chef - sometimes, I just need a break.
This morning, Chef independently started his day again with 20 minutes of exercising. Awesome! This was followed by much rushing-around-but-not-really-doing-anything. As of this morning, Chef has now agreed that he will go back to eating breakfasts that I make, so we will re-start that next week. I'm glad he has come to the point of recognizing that benefit.
Unfortunately, Chef was out and waiting for the bus before there was a pause for me to talk with him about the weekend (for those of you unfamiliar with Chef's challenges, there have been many times when I've started preparing Chef for something different a few days or more before the event, only to have Chef be all over the map for the entire time leading up to the event - it's always tricky trying to find that balance). When I told him I'd be going away and that he'd be at the neighbour's - he cried! This completely caught me off-guard. When I told him I was going for a music weekend (thinking he'd say he didn't want to go anyway), he continued to cry and said that he wanted to come. I was stunned. There wasn't much time before the bus. I asked if he'd put in his laundry so he had free time on the weekend, and regretted asking that question as soon as it was out of my mouth - as though he were missing the weekend away with me because he didn't do his laundry. I hugged him and told him there would be other music weekends together and that I hoped he'd have a great weekend. He dried his face and walked to the bus.
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