Things have gotten worse and worse with Violet over the last few weeks. She has missed two or three days out of every week and we just cannot figure out why and how. She does not talk about it at all beyond 'I am tired' but she is not tired at any other days, just at school days. And some days she goes to bed early and is 'too tired to go to school' and other days she goes to bed late and is just fine.
My new strategy is to wait till she gets up and after breakfast say 'OK, let's go to school.' This is invariably followed by her running upstairs and hiding under her bed till school time is over. She will spend three or four hours under her bed, which is concerning to me.
She doesn't talk, she seems to enjoy school and still rather hides under her bed?????
I talked to psychologist last week and he had some ideas for the whole family which might help Violet, but that is a post for a different day, too tired now.
Tuesday, May 26, 2009
Visited the SAP Program
Last week, I visited the SAP program, which is a local program for autistic kids we are considering for Zac.
Heck, I still want residential for him, but that is not happening till I bring in the big guns (working on organizing paper work and hiring an educational advocate but that takes time) so this local program might be the best option for now.
I visited the SAP program and finally getting around to writing down my impressions. They are in their 4th year of existence and have ten students at the moment. The students are a wide range of ages, and most of them are low functioning autistic. There are two higher functioning ones, but it looks like Zac would be highest functioning of the bunch. Which might not be necessarily bad, since that will give him more of a 'leader role', but it also might not necessarily be good.
They focus a LOT on social skills. They do recreation, and have community based programs. One of the students walks a local dog and was looking up information about canine diabetes on the internet. I liked seeing how they tied his learning to what he was doing in the community.
Their SLP (speech language pathologist) is specialized in social thinking skills, and the whole program focuses a lot of executive functioning. It sounds like they do a lot of cognitive behavorial stuff.
I don't think this is the best program for him, but I think it is the best program locally. Which might be what I have to settle for until I can convince the school otherwise, but trying this program first might be part of what I need to do to make residential happen.
Advantages of SAP: There is so much focus on social and living skills, which is where Zac lacks the most. I am really not worried about his academics, they will happen, he is smart enough. But he desperately needs skills to function in the real world. Last time I spoke with the psychologist, he predicted 'Five years from now Zac will still live at home and need tons of support' and I want to be able to prevent that by teaching him the skills he needs to function at college and at a job. He does not have any of them at the moment. The school has not been working on any transition planning yet, but then we have been in crisis for most of the year, so I can't really blame them. Still, he will need those skills.
Disadvantages of SAP: The low functioning kids will turn him off from the program (although I am very happy to say 'Tough shit!' to that) and it will be hard to get his buy in and get him up in the morning to actually MAKE it to the program. The one good thing about his current program (one hour of math and one hour of tutoring starting at 1pm) is that it actually is getting him to school.
They have many ways of individualizing their program, I just think he needs more than he can get there. But the good news is that this program provides WAY more needed skills than the current school situation does.
I will meet at school on June 3rd to talk about this program. We'll see what happens. For now I am tempted to try it.
Heck, I still want residential for him, but that is not happening till I bring in the big guns (working on organizing paper work and hiring an educational advocate but that takes time) so this local program might be the best option for now.
I visited the SAP program and finally getting around to writing down my impressions. They are in their 4th year of existence and have ten students at the moment. The students are a wide range of ages, and most of them are low functioning autistic. There are two higher functioning ones, but it looks like Zac would be highest functioning of the bunch. Which might not be necessarily bad, since that will give him more of a 'leader role', but it also might not necessarily be good.
They focus a LOT on social skills. They do recreation, and have community based programs. One of the students walks a local dog and was looking up information about canine diabetes on the internet. I liked seeing how they tied his learning to what he was doing in the community.
Their SLP (speech language pathologist) is specialized in social thinking skills, and the whole program focuses a lot of executive functioning. It sounds like they do a lot of cognitive behavorial stuff.
I don't think this is the best program for him, but I think it is the best program locally. Which might be what I have to settle for until I can convince the school otherwise, but trying this program first might be part of what I need to do to make residential happen.
Advantages of SAP: There is so much focus on social and living skills, which is where Zac lacks the most. I am really not worried about his academics, they will happen, he is smart enough. But he desperately needs skills to function in the real world. Last time I spoke with the psychologist, he predicted 'Five years from now Zac will still live at home and need tons of support' and I want to be able to prevent that by teaching him the skills he needs to function at college and at a job. He does not have any of them at the moment. The school has not been working on any transition planning yet, but then we have been in crisis for most of the year, so I can't really blame them. Still, he will need those skills.
Disadvantages of SAP: The low functioning kids will turn him off from the program (although I am very happy to say 'Tough shit!' to that) and it will be hard to get his buy in and get him up in the morning to actually MAKE it to the program. The one good thing about his current program (one hour of math and one hour of tutoring starting at 1pm) is that it actually is getting him to school.
They have many ways of individualizing their program, I just think he needs more than he can get there. But the good news is that this program provides WAY more needed skills than the current school situation does.
I will meet at school on June 3rd to talk about this program. We'll see what happens. For now I am tempted to try it.
Friday, May 8, 2009
Musings
Sharing some of my email conversations with Violet's case manager Robin.
Robin: "I did talk with Violet's counselor and she is feeling much like we are. She didn't have much to say though. From my perspecitve, I told her I felt it was difficult to assess and promote life skills that are so different from that of other housemates."
Me: "Yes, I have been thinking about it, and I think it is not as true as the mental health professionals like to believe. With a large family like ours, there is a big age spread between the kids, meaning very different developmental levels and skill they work on, and they all have done different things at different times, and learned different skills at different times.
They all have places to be at certain times, a variety of commitments to meet for different activities, and Violet's school activity is not that different from Zac's school or Vincent's work, or the little ones homeschool gymnastics or any other scheduled activity. So even although it is easy to believe that this is what is the cause behind this, I do not fully believe in it, and am wondering whether we are missing some anxiety issues. I don't know ^^
I was musing it a bit over the last few weeks, since one of the therapists was saying 'Just put them all in school and all will be fine' and I have to admit I have my doubts with that.
It will be interesting to see how things are going once Penny goes to school too. (editor note: will post more about that soon. Maybe. I promise. Not really ^^. BUt I'll try. That's all you get) Violet has never been a 'crowd follower' and I would't be surprised if Penny makes it to school just fine every day, and Violet will stay home (I can dream about Penny, no? ^^) BTW, Penny has given positive feedback to anyone who asked her about art class at school and is looking forward to Monday.
Robin: "Violet has been raised with a strong belief that she has a choice (to go to school) and I think this will always be tough to override, internally, especially if she chooses to stay up late to read and is rightfully tired...she said she watched the movie late last night and was tired but wanted to get up??? At least she was minimally talking to me...a start!"
Me: "Yeah, I can't figure out Violet yet, since she must have been tired today too, but was totally fine coming to school. And willing to work through 'i am tired but will get up anyway' which she doesn't seem to be able to do at other days. We just need to find the difference between those days, easy peasy ^^"
Robin: "I did talk with Violet's counselor and she is feeling much like we are. She didn't have much to say though. From my perspecitve, I told her I felt it was difficult to assess and promote life skills that are so different from that of other housemates."
Me: "Yes, I have been thinking about it, and I think it is not as true as the mental health professionals like to believe. With a large family like ours, there is a big age spread between the kids, meaning very different developmental levels and skill they work on, and they all have done different things at different times, and learned different skills at different times.
They all have places to be at certain times, a variety of commitments to meet for different activities, and Violet's school activity is not that different from Zac's school or Vincent's work, or the little ones homeschool gymnastics or any other scheduled activity. So even although it is easy to believe that this is what is the cause behind this, I do not fully believe in it, and am wondering whether we are missing some anxiety issues. I don't know ^^
I was musing it a bit over the last few weeks, since one of the therapists was saying 'Just put them all in school and all will be fine' and I have to admit I have my doubts with that.
It will be interesting to see how things are going once Penny goes to school too. (editor note: will post more about that soon. Maybe. I promise. Not really ^^. BUt I'll try. That's all you get) Violet has never been a 'crowd follower' and I would't be surprised if Penny makes it to school just fine every day, and Violet will stay home (I can dream about Penny, no? ^^) BTW, Penny has given positive feedback to anyone who asked her about art class at school and is looking forward to Monday.
Robin: "Violet has been raised with a strong belief that she has a choice (to go to school) and I think this will always be tough to override, internally, especially if she chooses to stay up late to read and is rightfully tired...she said she watched the movie late last night and was tired but wanted to get up??? At least she was minimally talking to me...a start!"
Me: "Yeah, I can't figure out Violet yet, since she must have been tired today too, but was totally fine coming to school. And willing to work through 'i am tired but will get up anyway' which she doesn't seem to be able to do at other days. We just need to find the difference between those days, easy peasy ^^"
By Accident...
Sharing because humor is one of the few ways I can deal and cope with all of it.
Baby Bear, at our nightly 'Safety Asessment' which leads to a lollipop for whoever has been behaving in a safe way all day: 'Mama? I threatened Bryan today, but it was by accident.'
Me 'Um... I have a hard time believing that you can threaten somebody by accident.'
Baby Bear 'Really!!! It was by accident! I didn't mean to!'
Me 'Um...'
Baby Bear 'I was going to say I love you, but then a threat popped up in my mind instead!'
Baby Bear, at our nightly 'Safety Asessment' which leads to a lollipop for whoever has been behaving in a safe way all day: 'Mama? I threatened Bryan today, but it was by accident.'
Me 'Um... I have a hard time believing that you can threaten somebody by accident.'
Baby Bear 'Really!!! It was by accident! I didn't mean to!'
Me 'Um...'
Baby Bear 'I was going to say I love you, but then a threat popped up in my mind instead!'
SAP
There is a local program, at a different high school, named SAP, Sunnydale Autism Program. I didn't know much about it, but I have asked the school to look into it for Zac, at least temporary to help him stabilize. The good news is that it would have way more therapeutic offerings than Zac's current program does. The bad news is that it is mostly low functioning kids, Zac would be the highest functioning kid. There are two more high functioning kids, although one of them is a kid who Zac hates.
Not sure what to think, but I am sure that the current situation is not working, and not giving Zac what he needs or deserves. I will go visit the SAP program next week and take it from there.
If anyone has good questions I can ask the SAP person next week, please share them.
Not sure what to think, but I am sure that the current situation is not working, and not giving Zac what he needs or deserves. I will go visit the SAP program next week and take it from there.
If anyone has good questions I can ask the SAP person next week, please share them.
Thursday, May 7, 2009
Violet
Logan, glad I am not the only one with a kid who seems to be influenced by subs ^^. Last week she missed three days. This week, she went on Monday and missed Tuesday. On Tuesday I talked to her counselor who could see her to start figuring out what is going on.
Violet came home with a plan, which stated rewards for going to school (Lindt chocolate) at the end of each day, and also a 'week reward' for making it to school every day of the week. (tortellini, which is her Very Favorite Ever Food). She seems excited about the rewards and the plan, and we went out, got chocolate, and some extra for when she would make it every day of this week.
Usually the biggest consequence is losing computer privileges for the day, which is big for her, but obviously not big enough.
Yesterday, the plan worked. She got up and made it to school on the early school bus.
Today, it didn't. I could not get her to budge for the early (7:30am) school bus. My usual plan B is late school bus at 9am, although once she refuses the early bus, she tends to just not make it to school at all. The frustrating thing is that she does NOT communicate at all, she just plays dead.
This morning Vincent and Ysa both helped me. Vincent carried her down the stairs, Violet did not react. They put her at the breakfast table, Violet did not react. Ysa brushed her hair, Violet did not react. We tried to make her eat breakfast, Violet did not react. Vincent carried her outside, I added her shoes and her backpack. Violet did not react. The school bus showed up, and we talked to her to try to make her get up and go to the darned bus. Violet jumped up, ran into the garage, and curled up in a ball at the top of the garage steps. Gah.
I waved to the school bus driver that today was hopeless and picked up the phone to yet again talk to her case manager. Violet slept most of the morning, and did not have any reasons beyond 'I was tired' when she got up, although that can cover tons of underlying stuff, so who knows.
Ysa says Violet went to sleep last night at 10:30pm, Violet states it was way later. I just know that it is disconcerting when she shuts of EVERY line of communication and just ignores us all.
Violet came home with a plan, which stated rewards for going to school (Lindt chocolate) at the end of each day, and also a 'week reward' for making it to school every day of the week. (tortellini, which is her Very Favorite Ever Food). She seems excited about the rewards and the plan, and we went out, got chocolate, and some extra for when she would make it every day of this week.
Usually the biggest consequence is losing computer privileges for the day, which is big for her, but obviously not big enough.
Yesterday, the plan worked. She got up and made it to school on the early school bus.
Today, it didn't. I could not get her to budge for the early (7:30am) school bus. My usual plan B is late school bus at 9am, although once she refuses the early bus, she tends to just not make it to school at all. The frustrating thing is that she does NOT communicate at all, she just plays dead.
This morning Vincent and Ysa both helped me. Vincent carried her down the stairs, Violet did not react. They put her at the breakfast table, Violet did not react. Ysa brushed her hair, Violet did not react. We tried to make her eat breakfast, Violet did not react. Vincent carried her outside, I added her shoes and her backpack. Violet did not react. The school bus showed up, and we talked to her to try to make her get up and go to the darned bus. Violet jumped up, ran into the garage, and curled up in a ball at the top of the garage steps. Gah.
I waved to the school bus driver that today was hopeless and picked up the phone to yet again talk to her case manager. Violet slept most of the morning, and did not have any reasons beyond 'I was tired' when she got up, although that can cover tons of underlying stuff, so who knows.
Ysa says Violet went to sleep last night at 10:30pm, Violet states it was way later. I just know that it is disconcerting when she shuts of EVERY line of communication and just ignores us all.
Tuesday, May 5, 2009
too overwhelmed
gah
just so much going on, and i don't have the energy to post or even hold a thought for more than a few milliseconds.
i can't believe how hard it is to get help for a kid who desperately needs help (zac) and bryan needs to be seen by psychiatrist again because he is escalating and i just hate hate hate having another one of my kids possibly on meds because bryan's anxiety disorder is getting worse and worse because zac is not getting the help he needs.
we had big meeting at therapy center today again, which was good but not useful in any practical way
zac's case manager asked me about my bruise on my face, told him it was a bryan / dog combo, although it was quite amusing to have him wonder about it and good that they check just like X, but hadn't told X the details.
maybe i should get some sleep :p
and yes, i am even too tired to use capitals since that is what overwhelmedness looks like
just so much going on, and i don't have the energy to post or even hold a thought for more than a few milliseconds.
i can't believe how hard it is to get help for a kid who desperately needs help (zac) and bryan needs to be seen by psychiatrist again because he is escalating and i just hate hate hate having another one of my kids possibly on meds because bryan's anxiety disorder is getting worse and worse because zac is not getting the help he needs.
we had big meeting at therapy center today again, which was good but not useful in any practical way
zac's case manager asked me about my bruise on my face, told him it was a bryan / dog combo, although it was quite amusing to have him wonder about it and good that they check just like X, but hadn't told X the details.
maybe i should get some sleep :p
and yes, i am even too tired to use capitals since that is what overwhelmedness looks like
Friday, May 1, 2009
Violet
Violet has been doing very well at school, I had a nice parent teacher conference and I got all positive stories about her. She did a drama class, and enjoyed that. She still missed an occasional day of school, but many days she had been able to make it on the normal school bus (7:30am) instead of her special pick up at 8:55am)
This week has been bad for school attendance though. She missed Monday, Wednesday and Thursday for no clear reason but 'I am tired'. 'Strangely' enough this coincides with her own teacher being out for surgery, and having a sub. Even although she doesn't express any anxieties about it, her school absences are making me go hmmmmm.
This week has been bad for school attendance though. She missed Monday, Wednesday and Thursday for no clear reason but 'I am tired'. 'Strangely' enough this coincides with her own teacher being out for surgery, and having a sub. Even although she doesn't express any anxieties about it, her school absences are making me go hmmmmm.
Zac Panic Attack
Email to Zac's therapist this morning:
Last night, Zac was very agitated. He suddenly started panicking that he had not taking his prozac that morning, and not other mornings either. In his mind it seemed to be MANY weeks of not taking it, although in reality I remind him and he takes it when I am home, which is most of the mornings, but not this Wednesday and Thursday. He had been good about taking it, so I hadn't been micro managing it, which clearly was a mistake on my part.
Anyway, I can figure out the meds part, we agreed to having me give him his prozac early in the morning again. The geodon (at night) has not been an issue, I remind him and he takes it, or he takes it before I remind him, and then gets really mad when I remind him.
Last night, he was very agitated about not having taken the prozac, and started panicking, and he said he wanted to throw up, but he couldn't, and I spent a good deal of time trying to calm him down and trying to get a feel for what was going on. He kept trying to throw up, although never was successful. He said that he HAD to throw up to make himself feel better (maybe he was nauseous?) He said he was going to die. He wanted me to call an ambulance.
Talking to the family therapist today, we thought he must have had a panic attack.
He told me that school is horrible, everything about it is wrong, although I could not get specifics. He says he has problems, but he cannot talk about them to me, because I will just send him to the hospital. He cannot talk to his therapist either, because he is too afraid to be sent to the hospital again. He alternated this with 'I want you to call an ambulance!' which clearly also would get him to the hospital anyway, so there was some lack of logic in his thinking there.
I could calm him down a tiny bit by promising he would not have to go to school today, he could just sleep as much as he needed, since he said he had not been sleeping well. So he is home today, and he hasn't woken up yet, and I will let him sleep and see how he is when he gets up. (He woke up around 1:15pm)
He did not make any statements about wanting to hurt himself or others, although he seemed convinced that he was going to die today. I will see how he is doing when he wakes up. I am very concerned about his mental health at the moment, and not sure what is the best way to proceed from here. I will keep you posted and monitor him carefully.
Afternoon happenings.
He woke up in good mood, and decided to go to school, had my friend drive him there (after she spoke to me on the phone)
School emailed:
Zac was upset when he entered school. He wanted to go home. He said he forgot to take his medication(?????). I told him he could go home if he truly was incapable of functioning; however, he would have to make up the time next week. He then agreed to stay and became vebally "abrasive". I told him that inappropriate language would be consequenced by a detention.
My reply
He got up this morning while I was gone to the family therapist and a friend was there to watch the kids (around 1:30pm). He was in a good mood and said he wanted to go to school. She called me and I decided that he seemed ok and wanted to go to school, so we should try to let him go. She drove him to school, and I left you a message that I can pick him up at 3:30pm.
I am surprised to hear that he was upset again once he arrived at school. I had given him his meds early this morning, so he should be fine meds wise. It almost feels like he might have started panicking again like he did last night about his meds. Not sure what's going on.
Last night, Zac was very agitated. He suddenly started panicking that he had not taking his prozac that morning, and not other mornings either. In his mind it seemed to be MANY weeks of not taking it, although in reality I remind him and he takes it when I am home, which is most of the mornings, but not this Wednesday and Thursday. He had been good about taking it, so I hadn't been micro managing it, which clearly was a mistake on my part.
Anyway, I can figure out the meds part, we agreed to having me give him his prozac early in the morning again. The geodon (at night) has not been an issue, I remind him and he takes it, or he takes it before I remind him, and then gets really mad when I remind him.
Last night, he was very agitated about not having taken the prozac, and started panicking, and he said he wanted to throw up, but he couldn't, and I spent a good deal of time trying to calm him down and trying to get a feel for what was going on. He kept trying to throw up, although never was successful. He said that he HAD to throw up to make himself feel better (maybe he was nauseous?) He said he was going to die. He wanted me to call an ambulance.
Talking to the family therapist today, we thought he must have had a panic attack.
He told me that school is horrible, everything about it is wrong, although I could not get specifics. He says he has problems, but he cannot talk about them to me, because I will just send him to the hospital. He cannot talk to his therapist either, because he is too afraid to be sent to the hospital again. He alternated this with 'I want you to call an ambulance!' which clearly also would get him to the hospital anyway, so there was some lack of logic in his thinking there.
I could calm him down a tiny bit by promising he would not have to go to school today, he could just sleep as much as he needed, since he said he had not been sleeping well. So he is home today, and he hasn't woken up yet, and I will let him sleep and see how he is when he gets up. (He woke up around 1:15pm)
He did not make any statements about wanting to hurt himself or others, although he seemed convinced that he was going to die today. I will see how he is doing when he wakes up. I am very concerned about his mental health at the moment, and not sure what is the best way to proceed from here. I will keep you posted and monitor him carefully.
Afternoon happenings.
He woke up in good mood, and decided to go to school, had my friend drive him there (after she spoke to me on the phone)
School emailed:
Zac was upset when he entered school. He wanted to go home. He said he forgot to take his medication(?????). I told him he could go home if he truly was incapable of functioning; however, he would have to make up the time next week. He then agreed to stay and became vebally "abrasive". I told him that inappropriate language would be consequenced by a detention.
My reply
He got up this morning while I was gone to the family therapist and a friend was there to watch the kids (around 1:30pm). He was in a good mood and said he wanted to go to school. She called me and I decided that he seemed ok and wanted to go to school, so we should try to let him go. She drove him to school, and I left you a message that I can pick him up at 3:30pm.
I am surprised to hear that he was upset again once he arrived at school. I had given him his meds early this morning, so he should be fine meds wise. It almost feels like he might have started panicking again like he did last night about his meds. Not sure what's going on.
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