Today's visit again went ok, Zack met more people. The more I see him with other people at school, the more glaring his lack of eye contact is though. As in he will NOT look at others at all, making sure to be looking away all the time. He also was easily distracted 'Oh shiny!!!' when they were trying to explain things to him for more than two minutes.
He met his English teacher. Who almost immediately told about the homework he would get and about the writing he would do.
Tomorrow, there will be a freshman lunch (with hamburgers and hotdogs) and Zack decided that he wants to attend. So I'll drop him off tomorrow and he will attend the lunch. It will get him used to the cafetaria and the amount of kids. Gopher, who I now know is Zack's case manager, will be with him.
Tuesday, August 28, 2007
Monday, August 27, 2007
Therapy
Today, Zack saw his therapist again. She tried to talk to him about his hospital experience, but he claimed he didn't learn anything there, just had to do stupid art projects. Most of the hour was spent playing a game, Tilt, which was so boring that it didn't take long for me to have small parts of my brain slowly oozing out of my ears.
The plan is to soon start therapy three times a week. One time will be just Zack with her. The second instance will be Zack with his father (YAY!!!!!!). The third instance will be the whole family with a different counselor, who will do family therapy (YAY!)
Next week is holiday on Monday and start of school, so we'll just do one Zack therapy session. But the week after, is when we'll start the new program.
Sounds positive. And now I will finally shut up for the day.
The plan is to soon start therapy three times a week. One time will be just Zack with her. The second instance will be Zack with his father (YAY!!!!!!). The third instance will be the whole family with a different counselor, who will do family therapy (YAY!)
Next week is holiday on Monday and start of school, so we'll just do one Zack therapy session. But the week after, is when we'll start the new program.
Sounds positive. And now I will finally shut up for the day.
Walking...
After my last meeting with school system, I found myself more and more dissatisfied with the notion of 'walking' as an introductory class. When I told the hospital about it, they were not impressed at all. They said it should be replaced by something computer based. I totally agree with him.
We want Zack to have something he enjoys, something stimulating as a first experience, and frankly, I think the walking might not hold his attention very long and satisfy him academically at all. So I will request that to be changed.
The school's reasons, according to them 'He needs 40 credits to graduate from high school and this would get him PE credit.' My reply 'They can as well start with something else to start building credits, no reason for it to be PE.' He CRAVES computers, use that to ease him into school. My gut feeling says that walking is the easy way out for school. They don't have to provide a location / computer for him for that hour, but can just walk around in circles... Can you tell that I don't think this is a very good idea?
Today, I sent a letter to the high school, with copies to hospital, counselor, SNSP, and the school district. I sent it certified mail with return receipt, figuring that a paper trail never can be bad.
After reviewing your proposal for the start of Zack's time at Sunnydale High School, I would like to offer my feedback. I consider the English lessons in a small class room to make good sense for Zack's first exposure to high school English. I trust that the teacher will be able to individualize his education in such a way that Zack gets English at an appropriate academic level.
I do have concerns with the walking program though. I do not feel that this walking program is an appropriate introduction to high school for him. He needs something to motivate him, and walking will not provide that. I propose to start on something computer based instead, either keyboarding, or studying academic subjects with the help of a computer. There is a great deal of research which supports my position: "Research studies indicate a sense of empowerment among children with autism when using a computer as well as allowing children to exercise control and to act in a purposeful manner toward a desired goal...Specific research results demonstrate an increase in word reading, phonological awareness, and enjoyment, more interest, motivation, and better behavior during computer assisted instruction, and enhancement of problem-solving skills among children with autism. Promotion of verbal interaction between autistic students and improved social skills that extended to other situations was also noted." [Closing the Gap: Computer Technology in Special Education and Rehabilitation. Hileman, Camilla. Computer education can make a difference for children with autism]
I consulted with the hospital on your plan. They told me that the walking was inappropriate for Zack for school introduction, and he should be exposed to computers instead. I trust that you will be able to change the current plans to include computers in his daily lessons.
I appreciate your willingness to work with us to make Zack's experience at school as fruitful and fullfilling as possible and to help us meet his unique educational needs,
Kind regards,
We want Zack to have something he enjoys, something stimulating as a first experience, and frankly, I think the walking might not hold his attention very long and satisfy him academically at all. So I will request that to be changed.
The school's reasons, according to them 'He needs 40 credits to graduate from high school and this would get him PE credit.' My reply 'They can as well start with something else to start building credits, no reason for it to be PE.' He CRAVES computers, use that to ease him into school. My gut feeling says that walking is the easy way out for school. They don't have to provide a location / computer for him for that hour, but can just walk around in circles... Can you tell that I don't think this is a very good idea?
Today, I sent a letter to the high school, with copies to hospital, counselor, SNSP, and the school district. I sent it certified mail with return receipt, figuring that a paper trail never can be bad.
After reviewing your proposal for the start of Zack's time at Sunnydale High School, I would like to offer my feedback. I consider the English lessons in a small class room to make good sense for Zack's first exposure to high school English. I trust that the teacher will be able to individualize his education in such a way that Zack gets English at an appropriate academic level.
I do have concerns with the walking program though. I do not feel that this walking program is an appropriate introduction to high school for him. He needs something to motivate him, and walking will not provide that. I propose to start on something computer based instead, either keyboarding, or studying academic subjects with the help of a computer. There is a great deal of research which supports my position: "Research studies indicate a sense of empowerment among children with autism when using a computer as well as allowing children to exercise control and to act in a purposeful manner toward a desired goal...Specific research results demonstrate an increase in word reading, phonological awareness, and enjoyment, more interest, motivation, and better behavior during computer assisted instruction, and enhancement of problem-solving skills among children with autism. Promotion of verbal interaction between autistic students and improved social skills that extended to other situations was also noted." [Closing the Gap: Computer Technology in Special Education and Rehabilitation. Hileman, Camilla. Computer education can make a difference for children with autism]
I consulted with the hospital on your plan. They told me that the walking was inappropriate for Zack for school introduction, and he should be exposed to computers instead. I trust that you will be able to change the current plans to include computers in his daily lessons.
I appreciate your willingness to work with us to make Zack's experience at school as fruitful and fullfilling as possible and to help us meet his unique educational needs,
Kind regards,
School Visit
Apart from not getting him out of bed until shortly before we had to leave, the visit went pretty well.
Gopher, a 'special needs person' in the high school (not sure about his exact position), met us and led us around. Gopher asked whether Zack wanted to go school, Zack replied that he was willing to. Funny thing, Gopher shook Zack's hand, Zack did accept the handshake (although he never made any eye contact), but then after the handshake, Zack looked kind of doubtfully at his own hand. Like he was counting the germs Gopher just transferred to him.
A good thing, Zack told Gopher that he wanted harder classes than they are giving him now, since he wants to go to college. Gopher jumped in on that by taking him to the guidance counselors office, where there were many many books about getting into college, specific colleges, and more like that.
We visited most of the school, and the grounds. They do have a really cool rope course, although people can usually only do that when they are sophomores. Gopher told Zack that if things went well with him, that he might be able to get special exception to do so. I hope this will help Zack with motivation.
Zack told Gopher that he wasn't interested in a walking class, but Gopher told him he had too, since he needs to get phys ed credits, and they have to get to know him. I wanted to explain that they could do any other credits instead of phys ed (like keyboarding) and that they could get to know him that way too, but I didn't want to get into a fight with Gopher right with Zack there. I still don't agree on the walking and will request a change, but this didn't feel like right time/place.
Memorable Zack quotes: 'If I electrocute someone, how long would I be suspended for?' and 'Can I shoot drug dealers in the school?' Gopher explained there is a police officer in the school to confront drug dealers.
We visited the school library which has those security things at the entrance so you can't leave with books. Zack pointed out that you could hold book up high or slip it over the floor and the port might not notice. Gopher said 'Hmmm, good point, let's try that' They did find out that this indeed circumvents the alarm system. Not bad to find way to circumvent security system, during the first day of school :p The librarian said she knew, but they would like not to advertize this weakness.
We'll have another visit tomorrow.
Gopher, a 'special needs person' in the high school (not sure about his exact position), met us and led us around. Gopher asked whether Zack wanted to go school, Zack replied that he was willing to. Funny thing, Gopher shook Zack's hand, Zack did accept the handshake (although he never made any eye contact), but then after the handshake, Zack looked kind of doubtfully at his own hand. Like he was counting the germs Gopher just transferred to him.
A good thing, Zack told Gopher that he wanted harder classes than they are giving him now, since he wants to go to college. Gopher jumped in on that by taking him to the guidance counselors office, where there were many many books about getting into college, specific colleges, and more like that.
We visited most of the school, and the grounds. They do have a really cool rope course, although people can usually only do that when they are sophomores. Gopher told Zack that if things went well with him, that he might be able to get special exception to do so. I hope this will help Zack with motivation.
Zack told Gopher that he wasn't interested in a walking class, but Gopher told him he had too, since he needs to get phys ed credits, and they have to get to know him. I wanted to explain that they could do any other credits instead of phys ed (like keyboarding) and that they could get to know him that way too, but I didn't want to get into a fight with Gopher right with Zack there. I still don't agree on the walking and will request a change, but this didn't feel like right time/place.
Memorable Zack quotes: 'If I electrocute someone, how long would I be suspended for?' and 'Can I shoot drug dealers in the school?' Gopher explained there is a police officer in the school to confront drug dealers.
We visited the school library which has those security things at the entrance so you can't leave with books. Zack pointed out that you could hold book up high or slip it over the floor and the port might not notice. Gopher said 'Hmmm, good point, let's try that' They did find out that this indeed circumvents the alarm system. Not bad to find way to circumvent security system, during the first day of school :p The librarian said she knew, but they would like not to advertize this weakness.
We'll have another visit tomorrow.
Sleep
Good thing first: daytime behavior is pretty good.
Bad thing: sleep still is an issue, even with the 10 mg of Ambien at night. He falls asleep late at night (actually early morning), and can't get out of bed in the morning. We are going to visit the school today, and it took me ages to get him out of bed around noon...
Today is half hour visit to school. Wish us luck.
Bad thing: sleep still is an issue, even with the 10 mg of Ambien at night. He falls asleep late at night (actually early morning), and can't get out of bed in the morning. We are going to visit the school today, and it took me ages to get him out of bed around noon...
Today is half hour visit to school. Wish us luck.
Friday, August 24, 2007
Katie Beckett
AM: I got a call back from our Katie Beckett person. She -thinks- she has everything she needs. Now it goes to nurse (next week, possibly wednesday) and then after nurse, it goes to doctor. Phew!
Amazing
The sleeping still is bad (slept from maybe 4am to 7am, although not sure whether he maybe had shorter spells before that??)
But
The amazing thing.
He ate breakfast at the table with some of his siblings there, and he did NOT explode or complain about their noises while eating. That definitely is an improvement over how things used to be.
Of course, later he got in a fight with older brother, with much potty language of both of them. No violence though, just annoyance without exploding. Pretty darned amazing.
But
The amazing thing.
He ate breakfast at the table with some of his siblings there, and he did NOT explode or complain about their noises while eating. That definitely is an improvement over how things used to be.
Of course, later he got in a fight with older brother, with much potty language of both of them. No violence though, just annoyance without exploding. Pretty darned amazing.
Meeting
Finally getting around to posting about yesterday's meeting. It is late, and I am tired, so I am not promising any kind of coherence in this post. There are so many things on my mind that I do want to share and document though.
The meeting was at the high school. The people attending were the assistant principal (I will call her AP), the director of special education for the school district, the inclusion person for the school district, some kind of special needs person for the high school, Zack's counselor, my SNSP, my friend, and myself.
The plans they put on the table was that Zack will attend two periods, the sixth and the seventh, getting him started after lunch and staying for about 1.5 hours. This sounded good. The classes they want to start him on is walking, and English. 'MaryLou will walk with him for a period.' I have to admit that I am still not sure what exactly is meant by the walking, sounded like just physical walking around (in school/out of school???) maybe at their outdoors track. I am not so sure about this class. When they said it, I wanted to keep an open mind and thought maybe this was a way for them to get to know him. But the more I think about it, the more I think this is not the best class to start with.
One of the things the AP used to justify it, is that he needs 40 credits at the end of high school and this would start building them. As I said, not sure whether this is the best way to do so.
His other class, will be an English class in a very small class room, with two other special needs students. It sounds like they are working at a significantly lower academic level than Zack is though, one of the people helpfully told me that they would do things like helping the kids to read. I guess the teacher would be able to individualize the instruction with only three kids there though. I am not sure, but it sounds like a workable start for now. I did stress that writing would be an issue, and they talked about scribing for him, but not sure how much they really grokked it.
We briefly talked about other schooling options, but the school clearly first wants to try locally, which seems at least worth a try.
Computer room was mentioned, but kind of blown aside by the PA because it is open access for everyone, and would be too overwhelming for him. The more I think about it, the more I think that walking should be replaced by something computer based, and the hospital totally agreed with me on that when I talked to them today. Actually the hospital is going to contact the school to ask just that, I might have to do the same. Just have to ponder how to best do it and which reasoning to use.
The meta skills we will mostly be focusing on at first will be daily attendance and compliance. Not to mention that there will be a big emotional adjustment to school.
Zack will meet weekly with psychologist. Also once a week a meeting with their speech / language pathologist, to help her getting started on evaluating him. It sounds like she has some specialized knowledge on social communication for Aspergers students, so that would be good.
His therapist told the school that Zack has a very interesting internal world, with many misconceptions and misinterpretations.
The current plan is to have Zack visit school for half an hour on Monday and Tuesday, which is before the school year offically starts. This will enable him to see the building and meet at least some of the people he will be working with.
Our next meeting (first official IEP meeting) will be at Sept 5. They plan on having Zack start at Sept 6, with a bare-bones IEP in place. It sounded like they want an IEP drawn up before starting school at all.
One issue here might be that I don't plan on signing the IEP at the meeting. I have gotten the advice to always take it home and ponder, and have it reviewed by my advisors. If I don't sign the IEP right away, not sure whether they will let Zack start the day after. I will have to ask them about that.
Still mulling over, and pondering this meeting. The more I think , the more I feel that walking is not going to do it, computer based (maybe learning to type) sounds like the way to go.
BTW, it is past 3:30am now and Zack just came downstairs to complain that he can't sleep. So much for the doctors 'fixing' that. He is on 10 mg of Ambien, which he did take, but seems not to be working so well tonight.
The meeting was at the high school. The people attending were the assistant principal (I will call her AP), the director of special education for the school district, the inclusion person for the school district, some kind of special needs person for the high school, Zack's counselor, my SNSP, my friend, and myself.
The plans they put on the table was that Zack will attend two periods, the sixth and the seventh, getting him started after lunch and staying for about 1.5 hours. This sounded good. The classes they want to start him on is walking, and English. 'MaryLou will walk with him for a period.' I have to admit that I am still not sure what exactly is meant by the walking, sounded like just physical walking around (in school/out of school???) maybe at their outdoors track. I am not so sure about this class. When they said it, I wanted to keep an open mind and thought maybe this was a way for them to get to know him. But the more I think about it, the more I think this is not the best class to start with.
One of the things the AP used to justify it, is that he needs 40 credits at the end of high school and this would start building them. As I said, not sure whether this is the best way to do so.
His other class, will be an English class in a very small class room, with two other special needs students. It sounds like they are working at a significantly lower academic level than Zack is though, one of the people helpfully told me that they would do things like helping the kids to read. I guess the teacher would be able to individualize the instruction with only three kids there though. I am not sure, but it sounds like a workable start for now. I did stress that writing would be an issue, and they talked about scribing for him, but not sure how much they really grokked it.
We briefly talked about other schooling options, but the school clearly first wants to try locally, which seems at least worth a try.
Computer room was mentioned, but kind of blown aside by the PA because it is open access for everyone, and would be too overwhelming for him. The more I think about it, the more I think that walking should be replaced by something computer based, and the hospital totally agreed with me on that when I talked to them today. Actually the hospital is going to contact the school to ask just that, I might have to do the same. Just have to ponder how to best do it and which reasoning to use.
The meta skills we will mostly be focusing on at first will be daily attendance and compliance. Not to mention that there will be a big emotional adjustment to school.
Zack will meet weekly with psychologist. Also once a week a meeting with their speech / language pathologist, to help her getting started on evaluating him. It sounds like she has some specialized knowledge on social communication for Aspergers students, so that would be good.
His therapist told the school that Zack has a very interesting internal world, with many misconceptions and misinterpretations.
The current plan is to have Zack visit school for half an hour on Monday and Tuesday, which is before the school year offically starts. This will enable him to see the building and meet at least some of the people he will be working with.
Our next meeting (first official IEP meeting) will be at Sept 5. They plan on having Zack start at Sept 6, with a bare-bones IEP in place. It sounded like they want an IEP drawn up before starting school at all.
One issue here might be that I don't plan on signing the IEP at the meeting. I have gotten the advice to always take it home and ponder, and have it reviewed by my advisors. If I don't sign the IEP right away, not sure whether they will let Zack start the day after. I will have to ask them about that.
Still mulling over, and pondering this meeting. The more I think , the more I feel that walking is not going to do it, computer based (maybe learning to type) sounds like the way to go.
BTW, it is past 3:30am now and Zack just came downstairs to complain that he can't sleep. So much for the doctors 'fixing' that. He is on 10 mg of Ambien, which he did take, but seems not to be working so well tonight.
Home
Home again, although this time he has not been discharged yet, he is home on a pass. The pass said it was so that he can visit the school next Monday and Tuesday. The plans are to have him visit school for half an hour both those days, to see the building and meet people.
I guess the good thing about the pass is that it will enable to skip the ER when things go hairy over the next few days.
So far so good. He mostly played video games and video games, and did I mention video games? This kept him nicely out of trouble though ^^
I guess the good thing about the pass is that it will enable to skip the ER when things go hairy over the next few days.
So far so good. He mostly played video games and video games, and did I mention video games? This kept him nicely out of trouble though ^^
Wednesday, August 22, 2007
And More Forms
Just got a 'financial statement' form from the hospital to fill to decide how much we are required to pay for Zack's hospitalizations (from what insurance doesn't cover). It has many monthly budget questions I will have to figure out. It even asks how much we do spend for cigarettes every month... I also got the forms to officially enroll him in school. So many forms, so little time.
I am still pondering today's meeting, will write about it later. For now have to work on finding all the recent hospital bills, one day I'll be organized, I swear!
Zack will come home tomorrow on a pass, and if it goes well, he will be discharged.
I need to make a list for all the things that need to be done, to help myself get more organized. I feel a tiny bit overwhelmed.
So instead of doing anything I sit at the computer and read blogs, not very productive.
I am still pondering today's meeting, will write about it later. For now have to work on finding all the recent hospital bills, one day I'll be organized, I swear!
Zack will come home tomorrow on a pass, and if it goes well, he will be discharged.
I need to make a list for all the things that need to be done, to help myself get more organized. I feel a tiny bit overwhelmed.
So instead of doing anything I sit at the computer and read blogs, not very productive.
Tuesday, August 21, 2007
Meeting Tomorrow
Tomorrow morning, at 8am (yawn!), we'll have a meeting at the local high school. This will be the local school district and the director of our local parent-to-parent special needs support center (who I am calling SNSP for short).
Not sure what exactly will be covered, I think more brain storming and getting to know the high school people? I also will officially enroll him in high school. Very weird for someone who is into homeschooling as we are. I still have many mixed feelings about it.
I will try to set up way for Zack to visit the school before school starts, so that he can see the buildings and such. I will also bring up the issue of communication devices, someone gave me a link to possible ones. Writing is a high stress activity for him, it is slow, clumsy and leads to many explosions.
She wrote:
A suggestion for the handwriting. Have you heard of a portable word processor called an AlphaSmart Neo or Dana? There are many instances of students with Autism who have done phenomenally well using them for communication. http://www.alphasmart.com/neo/ They are a lightweight keyboard that has 8 files of several pages, automatically saves everything, etc. It's easy to carry between classes, take notes, or type papers. Then you just hook it by USB cable to a computer and your files can be downloaded or printed. The Dana is a keyboard but also can act like a PDA so it's a little more conplex. They are not horribly expensive and could be included as Assistive Technology on the IEP and would have to be paid for by the school district. There is another similar device called the Writer http://www.writerlearning.com/ that also offers a keyboarding program right in it, as well as word prediction so a choice of words pop up when you start typing a word so you don't have to completely spell everything.
Not sure what else will come up.
Zack called, he can try sleeping the night at home on Thursday. If that goes well, he can be discharged from the hospital.
Not sure what exactly will be covered, I think more brain storming and getting to know the high school people? I also will officially enroll him in high school. Very weird for someone who is into homeschooling as we are. I still have many mixed feelings about it.
I will try to set up way for Zack to visit the school before school starts, so that he can see the buildings and such. I will also bring up the issue of communication devices, someone gave me a link to possible ones. Writing is a high stress activity for him, it is slow, clumsy and leads to many explosions.
She wrote:
A suggestion for the handwriting. Have you heard of a portable word processor called an AlphaSmart Neo or Dana? There are many instances of students with Autism who have done phenomenally well using them for communication. http://www.alphasmart.com/neo/ They are a lightweight keyboard that has 8 files of several pages, automatically saves everything, etc. It's easy to carry between classes, take notes, or type papers. Then you just hook it by USB cable to a computer and your files can be downloaded or printed. The Dana is a keyboard but also can act like a PDA so it's a little more conplex. They are not horribly expensive and could be included as Assistive Technology on the IEP and would have to be paid for by the school district. There is another similar device called the Writer http://www.writerlearning.com/ that also offers a keyboarding program right in it, as well as word prediction so a choice of words pop up when you start typing a word so you don't have to completely spell everything.
Not sure what else will come up.
Zack called, he can try sleeping the night at home on Thursday. If that goes well, he can be discharged from the hospital.
Monday, August 20, 2007
Home for the Day
Today, Zack came home for the day, on a pass. They are working on sleeping, and not much happens during weekend daytimes anyway, so they gave him a pass to spend the day at home. He did pretty well, mostly played video games. He had one incident when he threw a fork, but he pulled himself together pretty well from that. Still , makes me realize what a vulcano he can be.
Currently, they think he can come home on Wednesday. We'll see. Wednes is also when I have my next meeting with the school system.
Currently, they think he can come home on Wednesday. We'll see. Wednes is also when I have my next meeting with the school system.
Saturday, August 18, 2007
Meeting
I have been mulling over the meeting we had. I am still not sure what to think about the result, I think the big issue that is glaring at me is that there are so many unknowns. We don't know how Zack will do in particular circumstances, we don't know what will work and what will not work. I don't know what is best placement for him, I guess my tentative conclusion for now is that I'll just make the best choices I can make for now, with the knowledge I have now, and hope for the best.
First the attendants. His hospital psychiatrist, psychologist, occupational therapist, and his social worker. The principal of the school at the hospital. His local therapist. The director of special services from our SAU. Some inclusion person (not sure about his exact role) from our school district. My SNSP and me.
This was not an official IEP meeting or anything, more a kind of brainstorming meeting and a way to get all those people together. I think it was good that they finally talked to each other at the same time and I think everyone got a bit more complete image of what Zack is like, his issues, his strengths, his challenges.
One thing that kept coming back was Zack's amazing sense of irony, he can make very sharp and to the point remarks.
Everyone agreed that we could not just drop him into the school system. We talked a lot about different options, and for now have tentatively planned to start with one hour every day, after the morning madness in school is over (maybe around 9am ? 10am? ). He will be picked up by school bus, and work on speech therapy and typing in school. He has expressed interest in learning to type, and this would be a good way of easing him into the school system.
We first assumed he would go to junior high, but after talking for a while, and throwing ideas around, we decided that the high school would be better. We would hate to spend a year getting him comfortable in the junior high building, only to have him transition to high school at the end of the year. Also , it seems that there is more space and educational flexibility at the high school.
I was happy to see that there were willing to think out of the box for location and program and such. They even briefly considered some community locations within walking distance of school, so they could meet there with Zack, do some work, and walk to the school for a short period of time. But yet again, seemed better to start at the high school building , to decrease transition issues later. It was just cool to see how they were willing to contemplate alternatives. I felt they were pretty flexible in that.
My SNSP brought up a local spec ed school and wondered whether he would be a candidate for that. That is where their flexibility ended. They clearly were not going to pay for something like that without trying in-school options first. I can see their point, but in a way it feels a bit like setting him up for failure before he can get what he needs. OTOH, it also could be seen as giving him a chance before we go to other options. I don't know. I really have no idea what is best for him and which option is the one to push for. We did not talk about residential at all. It was interesting to see how they were flexible till the costs were getting too high. At least, that was the impression I got. If I was sure residential, or spec ed school would be the best option for him, I would push hard for it. But I am still hoping that the structure of going to school every day, will help him enough to be able to stay at home. So many unknowns.
I had many things I had wanting to bring up and never got around to. I did bring up that he should have a safe place at school, where he could go when he felt too overwhelmed. They agreed that that would be good. We also talked about not starting when school starts, but a few days later, when the other students have settled in a bit.
We talked about waking him up and getting him at the school bus, realizing that that might be an issue. We did not find solutions for that, but they are aware of the potential problem there. Yet another unknown. The hospital is finally starting to seriously work at the sleep issues, so maybe it will not be as much of a problem as it seems now.
I still have to officially register him for school, I guess I'll do that next week. I am not sure about the whole IEP issues, he got one in 2005 when he had the last testing done, but I haven't found my copy yet, and he was still homeschooling at that point, so not sure how relevant it can be. I have to find out what his coding was. I think the coding needs to be adjusted to make it easier to get Katie Beckett. Will have to look into that. I also will have to look into rewriting IEP. Is that even possible? I would think so, since so many things changed. New diagnosis, new situation. I am not sure whether I should push for it right now or to first see how things go at school. So many things I need to find out. So many loose ends.
My final conclusion: I don't know. I can see their point of wanting to get to know him, and wanting to try 'normal' local options first, so the normal high school with individualized program. OTOH, I have to admit that I do wonder about his behavior at home, there is always the vulcano aspect, something that is hard to forget. But I feel we should give him a chance at least, this might just be what he needs. And if not, we'll adjust till we find what he does need.
One thing that does worry me, is that the issue that they might have to call the police on him when he acts up violently or threatends people in school. I agree that that would be the natural consequence, but it still does worry me.
We will meet again next Wed, locally, just the school system, his local therapist, and my SNSP.
Any input/feedback on all this would be welcomed. I am still pondering.
First the attendants. His hospital psychiatrist, psychologist, occupational therapist, and his social worker. The principal of the school at the hospital. His local therapist. The director of special services from our SAU. Some inclusion person (not sure about his exact role) from our school district. My SNSP and me.
This was not an official IEP meeting or anything, more a kind of brainstorming meeting and a way to get all those people together. I think it was good that they finally talked to each other at the same time and I think everyone got a bit more complete image of what Zack is like, his issues, his strengths, his challenges.
One thing that kept coming back was Zack's amazing sense of irony, he can make very sharp and to the point remarks.
Everyone agreed that we could not just drop him into the school system. We talked a lot about different options, and for now have tentatively planned to start with one hour every day, after the morning madness in school is over (maybe around 9am ? 10am? ). He will be picked up by school bus, and work on speech therapy and typing in school. He has expressed interest in learning to type, and this would be a good way of easing him into the school system.
We first assumed he would go to junior high, but after talking for a while, and throwing ideas around, we decided that the high school would be better. We would hate to spend a year getting him comfortable in the junior high building, only to have him transition to high school at the end of the year. Also , it seems that there is more space and educational flexibility at the high school.
I was happy to see that there were willing to think out of the box for location and program and such. They even briefly considered some community locations within walking distance of school, so they could meet there with Zack, do some work, and walk to the school for a short period of time. But yet again, seemed better to start at the high school building , to decrease transition issues later. It was just cool to see how they were willing to contemplate alternatives. I felt they were pretty flexible in that.
My SNSP brought up a local spec ed school and wondered whether he would be a candidate for that. That is where their flexibility ended. They clearly were not going to pay for something like that without trying in-school options first. I can see their point, but in a way it feels a bit like setting him up for failure before he can get what he needs. OTOH, it also could be seen as giving him a chance before we go to other options. I don't know. I really have no idea what is best for him and which option is the one to push for. We did not talk about residential at all. It was interesting to see how they were flexible till the costs were getting too high. At least, that was the impression I got. If I was sure residential, or spec ed school would be the best option for him, I would push hard for it. But I am still hoping that the structure of going to school every day, will help him enough to be able to stay at home. So many unknowns.
I had many things I had wanting to bring up and never got around to. I did bring up that he should have a safe place at school, where he could go when he felt too overwhelmed. They agreed that that would be good. We also talked about not starting when school starts, but a few days later, when the other students have settled in a bit.
We talked about waking him up and getting him at the school bus, realizing that that might be an issue. We did not find solutions for that, but they are aware of the potential problem there. Yet another unknown. The hospital is finally starting to seriously work at the sleep issues, so maybe it will not be as much of a problem as it seems now.
I still have to officially register him for school, I guess I'll do that next week. I am not sure about the whole IEP issues, he got one in 2005 when he had the last testing done, but I haven't found my copy yet, and he was still homeschooling at that point, so not sure how relevant it can be. I have to find out what his coding was. I think the coding needs to be adjusted to make it easier to get Katie Beckett. Will have to look into that. I also will have to look into rewriting IEP. Is that even possible? I would think so, since so many things changed. New diagnosis, new situation. I am not sure whether I should push for it right now or to first see how things go at school. So many things I need to find out. So many loose ends.
My final conclusion: I don't know. I can see their point of wanting to get to know him, and wanting to try 'normal' local options first, so the normal high school with individualized program. OTOH, I have to admit that I do wonder about his behavior at home, there is always the vulcano aspect, something that is hard to forget. But I feel we should give him a chance at least, this might just be what he needs. And if not, we'll adjust till we find what he does need.
One thing that does worry me, is that the issue that they might have to call the police on him when he acts up violently or threatends people in school. I agree that that would be the natural consequence, but it still does worry me.
We will meet again next Wed, locally, just the school system, his local therapist, and my SNSP.
Any input/feedback on all this would be welcomed. I am still pondering.
Wednesday, August 15, 2007
Sigh
Just called my oldest brother, to tell about Zack, and to ask about family history of 'weirdness' (since mental disorders weren't really diagnosed as much in the past). He is a lot older than I am, so I figured he might know stories that I don't. Not much showed up. Out of many many cousins/siblings/family members, he knows of one of our nephews , who committed suicide last year ('he always was very quiet, and so is his father (which is my #2 brother)') Hmmmm. Very quiet = something going on? Who knows :p
The other one was one of our cousins, who was an alcoholist, and died in an alcohol related car accident. These are the only two out of many many family members.
My brother's theory was that it was all in my husband's family, which I am not as close to, so not sure how to find out about that. My husband has a long long term history of depression and definitely has issues with anger management too. He has been diagnosed with ADHD, but I have wondered whether more is going on with him. Social skills sure aren't his strongest point :p Actually, for years I have suspected that he is on the spectrum too.
They did tell me something new though, which they hadn't shared with me before. Last year, my oldest, Oliver, visited them and spent two weeks at their house. Oliver told me that he had a good time, not mentioning any issues with the visit. Today, I got a very different story. Basically, they couldn't get any contact with Oliver, he had his nose in a book at all times. There was family visiting, and he did not make any contact with them, he actually was afraid and ran away from them, hiding. When my brother took him shopping, he sat down somewhere in store and put his head in his hands, waiting for the shopping trip to be over, basically shutting out everything. This was behavior they witnessed more often.
One of my cousins is a psychiatrist and he observed Oliver when he was visiting, and he told my brother that Oliver for sure was on the spectrum too.
Great.
Just what I needed. In a way it makes sense, in another way, it makes me feel even more overwhelmed and lost. Oliver clearly can compensate better, but seems not to do very well in an environment away from home, like the familiy visit last year.
The other one was one of our cousins, who was an alcoholist, and died in an alcohol related car accident. These are the only two out of many many family members.
My brother's theory was that it was all in my husband's family, which I am not as close to, so not sure how to find out about that. My husband has a long long term history of depression and definitely has issues with anger management too. He has been diagnosed with ADHD, but I have wondered whether more is going on with him. Social skills sure aren't his strongest point :p Actually, for years I have suspected that he is on the spectrum too.
They did tell me something new though, which they hadn't shared with me before. Last year, my oldest, Oliver, visited them and spent two weeks at their house. Oliver told me that he had a good time, not mentioning any issues with the visit. Today, I got a very different story. Basically, they couldn't get any contact with Oliver, he had his nose in a book at all times. There was family visiting, and he did not make any contact with them, he actually was afraid and ran away from them, hiding. When my brother took him shopping, he sat down somewhere in store and put his head in his hands, waiting for the shopping trip to be over, basically shutting out everything. This was behavior they witnessed more often.
One of my cousins is a psychiatrist and he observed Oliver when he was visiting, and he told my brother that Oliver for sure was on the spectrum too.
Great.
Just what I needed. In a way it makes sense, in another way, it makes me feel even more overwhelmed and lost. Oliver clearly can compensate better, but seems not to do very well in an environment away from home, like the familiy visit last year.
One more Issue
One issue which came up in my phone call , was the possibility of a bipolar diagnosis. I had wondered about that too, but I didn't see manic phases in Zack. She pointed out to me that the aggression can very well be his manic phases. She said it might be a good idea to see whether I can find out whether there were similar issues in my direct family. Will have to call my mom and find out.
Yet another thing to ponder.
Yet another thing to ponder.
Excellent Phone Call
Yesterday, I was reading one of my homeschooling mailing lists, when I noticed someone in a somewhat similar sitution we are in, kids/issues wise. She lives in the same state we are in. Her kid actually goes to public school, so she has many years of experience dealing with public school, IEP, and special education.
I emailed her, and got a very nice, very long email back, raising many good points. She gave me her phone number, so I called her today, to help me prepare better for tomorrow's meeting. This post is to help me remember all the things she mentioned, in no particular order.
She was extremely helpful, it was good to hear her personal experiences and for her to tell me the things I can ask for and look into. She also helped me by giving me a bunch of key phrases, the phrases that will be heard more clearly than if I use my own words.
She told me that a special school usually is more suited to behaviorally challenged kids, and they are way more focused on managing the kids than on educating him. With Zack's superior intelligence, he would most likely not get an appropriate education there. This is a good point that I hadn't pondered yet. I think I just wanted things to be 'fixed' and hadn't looked enough at the education part of the equation yet.
She told me I can ask for a self contained class room and a special education teacher just for him. The special education teacher can work with the other teachers to get him the appropriate grade level work. With his intelligence, Zack should at least be in honors classes (Not that I know much of it, I have never understood the whole American high school system). She stressed to me how important it would be for Zack to have a safe place (self contained class room), where he can stress out or cry without the other pupils seeing him do so. If they witness his behavior, it might lead to ridicule and bullying, which is obviously not a good thing. I should stress that it would be very disrespectful and disruptive for a teacher to deal with this in a regular classroom, since she also has the other kids to educate. A self contained class room sounds like a good idea.
Her son has started in a self contained class room, and over time, his own spec-ed teacher would take him into the regular class room and be available to him when he needs a break. This started by 20-30 mins and has gone up to half of the day after a few years. It is very important to state in the IEP that Zack should be allowed to leave the regular class room when HE feels the need, not when the teacher think it is needed. His spec ed teacher can accompany him to his own class room. Also being able to go outside when needed, might be an accomodation to ask for, since that tends to calm Zack down.
I should stress the anger and aggression issues, to make them understand that there is a serious emotional disability here. She also told me about the 'coding' we will need for the IEP, which should at least include autism and emotional disabilities, and maybe also ADHD (or is OCD one too? I will have to look into that?) If they complain about financial issues, that hiring a spec-ed teacher for him is much cheaper than paying for a special school. If he goes to high school, he would have many different teachers, which might not be the best thing for him at this point.
A special school would be considered a change in placement, and they can only do that if I agree with that.
She told me that to get appropriate level education for him, the key phrase is 'access the general curriculum'. They should teach him what he is entitled to, age and intelligence wise. Not a lower subset of skills which would be a common denominator with a bunch of other people. The district has an obligation to meet Zack's unique needs, both educationally and emotionally.
The words frustration and anger and agression kept coming back throughout the call, and I will need to stress them. When Zack gets frustrated, he will explode, and this might include aggression.
There are special education teachers who are specialized in emotionally disabled kids. But those are rare and we might not be able to get one. But it wouldn't hurt to ask for one.
She recommended him to see the school psychologist every day, to help him learn to manage his anger. I told her that I thought our school system only had psychologist coming in once a week (I will need to check on that), and wondered whether a guidance counselor might be a replacement. She said that a guidance counselor wouldn't be enough, Zack needs someone who is equipped and trained to deal with his emotional issues. A guidance counselor would lack that training.
She asked about his hand writing. I have to admit that it is totally awful, and he is very clumsy. She said I could request someone to scribe for him, or/and I can request his work to be done on a computer. Zack really wants to learn how to type anyway, so I can request them to teach him typing skills, to help him with his note taking.
If they want to push the special school, I can yet again stress that he is not a trouble maker, his aggression stems from being unable to deal with frustrations, other kids his age are able to deal with. He needs to be educated, not just managed.
Legally, if he spends 60 - 80 % of class time away from a regular class, they might be able to call this a self contained class room. I should not be satisfied with that solution (will have to look more into this, I wasn't sure when I read my notes)
An important advice: do not sign any IEP documents during the meeting. I have a legal right to take them home and ponder them for 10 days. Use it.
In their case, they have their son's outside psychologist as a member of the IEP team. This has worked out very well for them. Of course , we don't have a non-hospital psychologist yet (yet another loose end) but it is something to ponder. This gives the school the ability to consult with the psychologist about issues, if they need to.
She was happy to hear that I will have my SNSP with me, it is good to have an objective person on our side, since it is harder as a mother not to be too emotional about this all. Not to mention that he has much experience with those issues, which I am sorely lacking.
Very helpful phone call, many things to ponder, and many new useful phrases to use in tomorrow's meeting.
I emailed her, and got a very nice, very long email back, raising many good points. She gave me her phone number, so I called her today, to help me prepare better for tomorrow's meeting. This post is to help me remember all the things she mentioned, in no particular order.
She was extremely helpful, it was good to hear her personal experiences and for her to tell me the things I can ask for and look into. She also helped me by giving me a bunch of key phrases, the phrases that will be heard more clearly than if I use my own words.
She told me that a special school usually is more suited to behaviorally challenged kids, and they are way more focused on managing the kids than on educating him. With Zack's superior intelligence, he would most likely not get an appropriate education there. This is a good point that I hadn't pondered yet. I think I just wanted things to be 'fixed' and hadn't looked enough at the education part of the equation yet.
She told me I can ask for a self contained class room and a special education teacher just for him. The special education teacher can work with the other teachers to get him the appropriate grade level work. With his intelligence, Zack should at least be in honors classes (Not that I know much of it, I have never understood the whole American high school system). She stressed to me how important it would be for Zack to have a safe place (self contained class room), where he can stress out or cry without the other pupils seeing him do so. If they witness his behavior, it might lead to ridicule and bullying, which is obviously not a good thing. I should stress that it would be very disrespectful and disruptive for a teacher to deal with this in a regular classroom, since she also has the other kids to educate. A self contained class room sounds like a good idea.
Her son has started in a self contained class room, and over time, his own spec-ed teacher would take him into the regular class room and be available to him when he needs a break. This started by 20-30 mins and has gone up to half of the day after a few years. It is very important to state in the IEP that Zack should be allowed to leave the regular class room when HE feels the need, not when the teacher think it is needed. His spec ed teacher can accompany him to his own class room. Also being able to go outside when needed, might be an accomodation to ask for, since that tends to calm Zack down.
I should stress the anger and aggression issues, to make them understand that there is a serious emotional disability here. She also told me about the 'coding' we will need for the IEP, which should at least include autism and emotional disabilities, and maybe also ADHD (or is OCD one too? I will have to look into that?) If they complain about financial issues, that hiring a spec-ed teacher for him is much cheaper than paying for a special school. If he goes to high school, he would have many different teachers, which might not be the best thing for him at this point.
A special school would be considered a change in placement, and they can only do that if I agree with that.
She told me that to get appropriate level education for him, the key phrase is 'access the general curriculum'. They should teach him what he is entitled to, age and intelligence wise. Not a lower subset of skills which would be a common denominator with a bunch of other people. The district has an obligation to meet Zack's unique needs, both educationally and emotionally.
The words frustration and anger and agression kept coming back throughout the call, and I will need to stress them. When Zack gets frustrated, he will explode, and this might include aggression.
There are special education teachers who are specialized in emotionally disabled kids. But those are rare and we might not be able to get one. But it wouldn't hurt to ask for one.
She recommended him to see the school psychologist every day, to help him learn to manage his anger. I told her that I thought our school system only had psychologist coming in once a week (I will need to check on that), and wondered whether a guidance counselor might be a replacement. She said that a guidance counselor wouldn't be enough, Zack needs someone who is equipped and trained to deal with his emotional issues. A guidance counselor would lack that training.
She asked about his hand writing. I have to admit that it is totally awful, and he is very clumsy. She said I could request someone to scribe for him, or/and I can request his work to be done on a computer. Zack really wants to learn how to type anyway, so I can request them to teach him typing skills, to help him with his note taking.
If they want to push the special school, I can yet again stress that he is not a trouble maker, his aggression stems from being unable to deal with frustrations, other kids his age are able to deal with. He needs to be educated, not just managed.
Legally, if he spends 60 - 80 % of class time away from a regular class, they might be able to call this a self contained class room. I should not be satisfied with that solution (will have to look more into this, I wasn't sure when I read my notes)
An important advice: do not sign any IEP documents during the meeting. I have a legal right to take them home and ponder them for 10 days. Use it.
In their case, they have their son's outside psychologist as a member of the IEP team. This has worked out very well for them. Of course , we don't have a non-hospital psychologist yet (yet another loose end) but it is something to ponder. This gives the school the ability to consult with the psychologist about issues, if they need to.
She was happy to hear that I will have my SNSP with me, it is good to have an objective person on our side, since it is harder as a mother not to be too emotional about this all. Not to mention that he has much experience with those issues, which I am sorely lacking.
Very helpful phone call, many things to ponder, and many new useful phrases to use in tomorrow's meeting.
Tuesday, August 14, 2007
Another Haha
Today, I got a letter from my health insurance. I figured it would be something about Zack, and opened it somewhat tentatively.
Well...
It started with 'Dear valued customer' and was a standard survey, asking me how well they were doing, and how satisfied I was with their services. Not sure where even to start. But I sure loved how much they value me as a customor...
Well...
It started with 'Dear valued customer' and was a standard survey, asking me how well they were doing, and how satisfied I was with their services. Not sure where even to start. But I sure loved how much they value me as a customor...
Haha
My sister AM has been making many phone calls on my behalf to schools and other places. While trying to reach the school system, she left many messages on the answering machines of the guidance counselor. Of course, by now we finally connected with the director of special needs services and have a meeting set up with her on Thursday, so we didn't really need him anymore after the ten days we tried to reach him.
Today, she came home and to her surprise finally found a message of the guidance counselor on her answering machine.
AM: So, amusingly..
..Horatius, the guidance counselor called me today to tell me that if I want to enroll, er, My Son, in school, I can make appointment with him any day between the 20th and 24th of August.
..he's a little behind ;-)
Just gave us a chuckle in the middle of all the stress. I guess she'll have to call him tomorrow and tell him that we have gotten started without him for now :p
Today, she came home and to her surprise finally found a message of the guidance counselor on her answering machine.
AM: So, amusingly..
..Horatius, the guidance counselor called me today to tell me that if I want to enroll, er, My Son, in school, I can make appointment with him any day between the 20th and 24th of August.
..he's a little behind ;-)
Just gave us a chuckle in the middle of all the stress. I guess she'll have to call him tomorrow and tell him that we have gotten started without him for now :p
Monday, August 13, 2007
ER Charges
Just one of the times we went there:
Emergency Deparment, Total Charges: $ 1,142.00
Commercial Insurance Pay: $ 0.00
Due from Patient --------> $ 1,142.00
I don't even know how many more bills like that are buried in my stack. We went to ER four times so far in the last few months.
Emergency Deparment, Total Charges: $ 1,142.00
Commercial Insurance Pay: $ 0.00
Due from Patient --------> $ 1,142.00
I don't even know how many more bills like that are buried in my stack. We went to ER four times so far in the last few months.
Thursday
I have a meeting set up with school system and hospital on Thursday morning. Yes, early in the morning, I love getting up early to make it to all those meetings and court appearances. I hope the counseling center can be there too, but don't know yet. I am trying to get my SNSP with me.
Plan of Attack for Insurance
OK, after pondering the money issue, this is my plan of attack for insurance mental health issues.
I will get their benefits guide in writing, so that my friend GC, who has extensive experience with health insurance issues, can go over it. She will also look into what our state's Dept of Insurance says about mental health benefits.
If that doesn't yield good results, I'll get lawyer and let him look into it more and give them some phone calls if needed. It might still not work, but at least I will know we tried everything we could. There are so many stories of people being denied benefits when they should get them, I do not want to be one of them. I have a lawyer lined up already, will keep him on standby for now.
I will get their benefits guide in writing, so that my friend GC, who has extensive experience with health insurance issues, can go over it. She will also look into what our state's Dept of Insurance says about mental health benefits.
If that doesn't yield good results, I'll get lawyer and let him look into it more and give them some phone calls if needed. It might still not work, but at least I will know we tried everything we could. There are so many stories of people being denied benefits when they should get them, I do not want to be one of them. I have a lawyer lined up already, will keep him on standby for now.
Enrolled
Today, I sent the forms to enroll Zack in public school. I sent it by certified mail, with return receipt, being told the importance of making a paper trail.
It feels very weird. It goes against everything I thought I believed in. I have always said that my kids could go to school if / when they wanted, but they would have to be responsible for things like taking bus and making lunch, and especially homework. Now I end up with one in public school who doesn't even want to be there. I have NO idea how I will even get him up in the morning.
And yet, I feel that this is the best thing for him right now, since he seems to crave structure. A lot more structure than I can give him at home. I will have to sit down and ponder what should be in his IEP, the thing is that I am not even sure what he needs. This parenting thing is really really hard!
It feels very weird. It goes against everything I thought I believed in. I have always said that my kids could go to school if / when they wanted, but they would have to be responsible for things like taking bus and making lunch, and especially homework. Now I end up with one in public school who doesn't even want to be there. I have NO idea how I will even get him up in the morning.
And yet, I feel that this is the best thing for him right now, since he seems to crave structure. A lot more structure than I can give him at home. I will have to sit down and ponder what should be in his IEP, the thing is that I am not even sure what he needs. This parenting thing is really really hard!
Friday, August 10, 2007
Katie Beckett update
Just talked to the Katie Beckett person at the social security office. She told me that she has the forms now, but they can't do anything till they have something like a treatment plan for his discharge, and they can do medical determination whether he can get Katie Beckett. So she would like the hospital and/or the counseling center to get into contact with her when They know more. A treatment plan might be a novel idea to them :p Yes, I know I am being sarcastic, it is one of my survival strategies.
I also asked her about reimbursement if we paid out of pocket for some services now, but she was more on the medical side of things than on the financial side, so she couldn't answer those questions.
So many loose ends. Did I mention feeling a bit overwhelmed?
I also asked her about reimbursement if we paid out of pocket for some services now, but she was more on the medical side of things than on the financial side, so she couldn't answer those questions.
So many loose ends. Did I mention feeling a bit overwhelmed?
Overwhelmed
Somehow I am feeling particularly overwhelmed today, not sure why. Maybe because I am waiting for a bunch of phone calls, and also have to remember so many things which need to happen.
The weather looks gloomy which doesn't help. And some of the kids are behaving less than optimal. Things would be easier if normal life would stop for a few days, so I could take care of the Zack issues. But that's not how it works :p
I guess I will need to get counseling set up for myself, no, that hasn't happened yet either. Oh well. Back to making phone calls.
The weather looks gloomy which doesn't help. And some of the kids are behaving less than optimal. Things would be easier if normal life would stop for a few days, so I could take care of the Zack issues. But that's not how it works :p
I guess I will need to get counseling set up for myself, no, that hasn't happened yet either. Oh well. Back to making phone calls.
Thursday, August 9, 2007
Money, Money, Money
Today's meeting made even more clear to me how important money is in all this crap. I was able to have my 'special needs center support person' there, which I found very helpful. He was the only one who actually raised the issue of residential placement. I did almost all of the talking, my husband was just sitting and listening. I told them that I felt the current way of doing things wasn't working, and that I think things should be different, but I didn't know how. I told them I didn't know which questions to ask, didn't know which road to go to get the correct services.
Ultimately, it all seems to boil down to money 'We cannot get him the services we think he needs unless we know medicaid is going to pay for it' I asked whether Katie Beckett would pay for it retroactively if we would pay out of pocket first. They are going to look into that. I know we asked for three months retroactively from the date of application, so logically you would expect them to pay from that date, everything that should be covered once he has been approved. But we also know that logic and reasonableness are not always the strongest points of our current systems.
I kept stressing that safety was my main concern, both for Zack and for his family. I told again how much his siblings are affected by all this, and they agreed, that yes, there was trauma for them too, and family therapy definitely was warranted. But yet again, money issues interfering...
The CHINS petition was mentioned as a possible way of financing things, but it seems that even with a CHINS, the family might still have to pay for the placement, which would be way above what we could afford. Not to mention there seem to be other issues with CHINS, issues I cannot totally figure out right now.
I cannot easily work with a local psychologist, it might be better to have the hospital psychologist do a full workup. I have no idea how much they have done so far, that is a question I will have to ask them. When the psychiater thought I was going to use the local psychologist for services, they went all hairy on me. Until it was clear I wasn't looking for therapy from the psychologist, just for an evaluation and more correct diagnosis.
The psychiatrist really wants to be at the meeting with the hospital and is going on vacation for a week. So that means Zack will be in the hospital for at least the next week, but I have to admit that I don't mind that at all. We can get a pass if we want to do something with him outside of the hospital.
I guess I will have to look more into our insurance covering any of this, but they have not been very helpful so far, not surprisingly. I have had one person offer me to help me in that regard, but I haven't even been able to talk to her yet (yes, I would welcome the help, GC), that's on my list too. Since insurance is covering the current hospitalization, it makes me wonder whether more could be possible if we find the right channels. Maybe not, but I would like to know for sure. I also have heard that it is possible to get a case manager at an insurance company, which feels like something that might be worth looking into.
I am not sure what to think of the meeting yet, I will have to ponder a bit. I know that it feels that at least they were listening to me this time, which hasn't really happened before yet. It seems like things have been really disorganized so far.
Off to the hospital for yet another visit.
Ultimately, it all seems to boil down to money 'We cannot get him the services we think he needs unless we know medicaid is going to pay for it' I asked whether Katie Beckett would pay for it retroactively if we would pay out of pocket first. They are going to look into that. I know we asked for three months retroactively from the date of application, so logically you would expect them to pay from that date, everything that should be covered once he has been approved. But we also know that logic and reasonableness are not always the strongest points of our current systems.
I kept stressing that safety was my main concern, both for Zack and for his family. I told again how much his siblings are affected by all this, and they agreed, that yes, there was trauma for them too, and family therapy definitely was warranted. But yet again, money issues interfering...
The CHINS petition was mentioned as a possible way of financing things, but it seems that even with a CHINS, the family might still have to pay for the placement, which would be way above what we could afford. Not to mention there seem to be other issues with CHINS, issues I cannot totally figure out right now.
I cannot easily work with a local psychologist, it might be better to have the hospital psychologist do a full workup. I have no idea how much they have done so far, that is a question I will have to ask them. When the psychiater thought I was going to use the local psychologist for services, they went all hairy on me. Until it was clear I wasn't looking for therapy from the psychologist, just for an evaluation and more correct diagnosis.
The psychiatrist really wants to be at the meeting with the hospital and is going on vacation for a week. So that means Zack will be in the hospital for at least the next week, but I have to admit that I don't mind that at all. We can get a pass if we want to do something with him outside of the hospital.
- My Special Needs Support Person will contact the local school system.
- I will follow up with the school system tomorrow morning.
- I will request all psychological records so far from the hospital.
- I will request a full psychological workup if they haven't done one yet.
- I will request a full neuropsych work up too.
- I will find out whether Katie Beckett retroactively would pay for services Zack needs, like the case manager and family therapy.
- I will get names from my Special Needs Support Person (who is going to be called SNSP from now on) to talk to them about the repercussions of the CHINS option. What would happen, what are the effects, what are financial issues, what are other issues?
- I will contact local autism support group and talk to their contact person, since she has gone through similar experiences with her kids.
- I will ask SNSP about support groups for siblings with issues, he mentioned a support group for 7 - 12 years old siblings. I have a few in that age group who would qualify.
I guess I will have to look more into our insurance covering any of this, but they have not been very helpful so far, not surprisingly. I have had one person offer me to help me in that regard, but I haven't even been able to talk to her yet (yes, I would welcome the help, GC), that's on my list too. Since insurance is covering the current hospitalization, it makes me wonder whether more could be possible if we find the right channels. Maybe not, but I would like to know for sure. I also have heard that it is possible to get a case manager at an insurance company, which feels like something that might be worth looking into.
I am not sure what to think of the meeting yet, I will have to ponder a bit. I know that it feels that at least they were listening to me this time, which hasn't really happened before yet. It seems like things have been really disorganized so far.
Off to the hospital for yet another visit.
Local Psychologist
Looks like I might have found a local psychologist who seems to be asking all the right questions. She seems to suspect something more might be going on than the PDD-NOS and the OCD, and I have to admit that I agree with her on that.
I hadn't pondered schizophrenia yet, but the NPR show last night sounded eerily like Zack. It makes me go 'Hmmmm'.
I am a bit anxious about the talk with the psychiatrist and counselor tomorrow, hoping that it will be productive. I know I will be stressing safety first, as the paramount concern. I just don't know how much my husband will support me in all this, he has not been the most understanding of all the issues and dangers I think. He works six days a week, so hasn't lived as closely with Zack's issues as I have.
I hadn't pondered schizophrenia yet, but the NPR show last night sounded eerily like Zack. It makes me go 'Hmmmm'.
I am a bit anxious about the talk with the psychiatrist and counselor tomorrow, hoping that it will be productive. I know I will be stressing safety first, as the paramount concern. I just don't know how much my husband will support me in all this, he has not been the most understanding of all the issues and dangers I think. He works six days a week, so hasn't lived as closely with Zack's issues as I have.
Wednesday, August 8, 2007
Tomorrow
Tomorrow, me and my husband will meet with Zack's local therapist and his psychiatrist. They want to talk about the issues I raised in my letter last week. Hmmm, finally someone reading it?
I will stress safety concerns when I speak to them.
More later, have to run now, I am very late for a non-Zack related meeting.
I will stress safety concerns when I speak to them.
More later, have to run now, I am very late for a non-Zack related meeting.
Tuesday, August 7, 2007
Quick Update
Yet another court date. Zack's lawyer asked me 'Weren't you guys here two weeks ago??? Or was it one week ago.' I confirmed, yes, it was one week ago... So depressing.
This time, I didn't need to tell the whole sordid story, the judge asked whether what I wrote in my witness report was the truth and whether I wanted to use it for my statement for today? Much easier than trying to make a good flowing story, not leaving out important details.
Zack was a bit overwhelmed in the waiting area at court. His aide tried to take him on a walk, but Zack refused. The aide was very good in calming him down though.
Todays Zack comments
What worries me a lot is that he obviously sees no issue at all with the fact that he was threatening to kill people. He does not grasp at all that that is not an ok thing to do. It scares me.
At night there was an interview with Elyn R. Saks, author of CENTER CANNOT HOLD, THE: MY JOURNEY THROUGH MADNESS . It was very weird to hear so many things that are similar in her symptoms and Zack's. She was sure people were out to kill her, she talked about demons. I will have to get that book and read it. It was also such a coincidence to have the radio on when this happened.
I think I have found a great local psychologist, via a friend. She asked all the right questions and I think she can be good for Zack to help him figure out what the heck is going on. The more and more I read, the more I think just prozac isn't the answer though.
This time, I didn't need to tell the whole sordid story, the judge asked whether what I wrote in my witness report was the truth and whether I wanted to use it for my statement for today? Much easier than trying to make a good flowing story, not leaving out important details.
Zack was a bit overwhelmed in the waiting area at court. His aide tried to take him on a walk, but Zack refused. The aide was very good in calming him down though.
Todays Zack comments
- If you keep sending me to the hospital, they will take away all your kids.
- Pippi and Annika are closet psychopaths, they are out to kill me.
- If the police would raid Pippi and Annika's house, they would find it filled with drugs and weapons.
- If only you wouldn't have them over, I would behave well.
- Etc, etc, etc.
What worries me a lot is that he obviously sees no issue at all with the fact that he was threatening to kill people. He does not grasp at all that that is not an ok thing to do. It scares me.
At night there was an interview with Elyn R. Saks, author of CENTER CANNOT HOLD, THE: MY JOURNEY THROUGH MADNESS . It was very weird to hear so many things that are similar in her symptoms and Zack's. She was sure people were out to kill her, she talked about demons. I will have to get that book and read it. It was also such a coincidence to have the radio on when this happened.
I think I have found a great local psychologist, via a friend. She asked all the right questions and I think she can be good for Zack to help him figure out what the heck is going on. The more and more I read, the more I think just prozac isn't the answer though.
Monday, August 6, 2007
Social Worker
Just spoke to Zack's social worker at the hospital. They are trying to set up meeting with school system, counseling center liaison, and the hospital. They are running into exactly the same issues I have with the school system, not being able to reach anyone and finding out that the person we need is out till Thursday. She gleefully said she left message telling them 'He is going to show up at the door of your school system in a few weeks, so you'd better get your act together.' They must have so many messages about Zack on their phone systems now, and still no reaction.
The good news is that she asked 'Do you think we should keep him in the hospital till after that meeting?' and I agreed that yes, I am quite concerned about the safety of the little ones and I agreed that bouncing in and out of the hospital like this is not good for anyone. Neither for him, nor for the family. So at least we'll have some kind of quietness in the house till we all meet together. Finally we will have everyone together instead of trying to make phone calls to different people all the time. Maybe they are finally getting the message that things are not working the way they are. And not only that, but we might actually DO something about it.
I know the meeting is not going to solve everything at once, but it will be the first time that the problem gets publicly acknowledged by all the parties at the same time and there will be looking for a solution.
Zack seems to be 'happy' in a way to be in the hospital and was all ready to go to the activities. They were talking about writing letter of apology first, and I have no idea what happened to that and whether he ever did.
He also was quite upset about parasites again, and in a way I am glad he is showing that behavior in the hospital now too. The demons and parasites make me wonder about psychosis, even if he denies it all afterwards. She said that he used to be more OCD-ish at first, and now the other behavior seems to be happening more. So maybe the prozac is giving some improvement on the OCD, but not helping with the other issues.
This is not easy.
The good news is that she asked 'Do you think we should keep him in the hospital till after that meeting?' and I agreed that yes, I am quite concerned about the safety of the little ones and I agreed that bouncing in and out of the hospital like this is not good for anyone. Neither for him, nor for the family. So at least we'll have some kind of quietness in the house till we all meet together. Finally we will have everyone together instead of trying to make phone calls to different people all the time. Maybe they are finally getting the message that things are not working the way they are. And not only that, but we might actually DO something about it.
I know the meeting is not going to solve everything at once, but it will be the first time that the problem gets publicly acknowledged by all the parties at the same time and there will be looking for a solution.
Zack seems to be 'happy' in a way to be in the hospital and was all ready to go to the activities. They were talking about writing letter of apology first, and I have no idea what happened to that and whether he ever did.
He also was quite upset about parasites again, and in a way I am glad he is showing that behavior in the hospital now too. The demons and parasites make me wonder about psychosis, even if he denies it all afterwards. She said that he used to be more OCD-ish at first, and now the other behavior seems to be happening more. So maybe the prozac is giving some improvement on the OCD, but not helping with the other issues.
This is not easy.
I Will Get Counseling
I will get counseling. Many friends have urged me to do so, and I have finally realized they are right. One was the most clear about 'You can get it paid for and it is out there, why not use it'. I realized he , and many others were right and this is something that would not be bad to have yet another person to talk to , with a fresh perspective.
Now just need to find counselor and add it to my list of things to do, which is one reason i had been resistant, i feel so overwhelmed already.
I also have decided that my counselor will not be connected to center Zack uses, so that I can get outside and fresh viewpoint. I haven't been too impressed with the current counseling center.
And my grammar is not making sense today, but too tired to go back and fix it, so you can just shake your head at me and pretend my english is understandable.
Now just need to find counselor and add it to my list of things to do, which is one reason i had been resistant, i feel so overwhelmed already.
I also have decided that my counselor will not be connected to center Zack uses, so that I can get outside and fresh viewpoint. I haven't been too impressed with the current counseling center.
And my grammar is not making sense today, but too tired to go back and fix it, so you can just shake your head at me and pretend my english is understandable.
Many Phone Calls
Today, many phone calls have been made and received. We talked to insurance about current hospitalization and whether they would pay for residential care, or even for a case manager at his counseling center. They won't pay for either. The counseling center won't do anything like case management unless Katie Beckett is in place. So we are trying to speed up the Katie Beckett process which is taking many phone calls.
I wonder about the insurance. How come they pay for current hospitalization on emergency basis, but not for residential treatment. I wonder how to find out more about that. I wonder whether the person we were talking to even knows every detail. She was adamant about 'only 26 counseling sessions, that's all we do' Adding that item to my list of things to do.
Oh, I also got phone call from hospital that I have to be in XXX (city about an hour away from here) at 9:10 am to appear before judge. I sooooo hate hate hate hate hate hate hate having to do that. Did I mention I hate it? It is just plain miserable, I have a hard time even thinking about it today and am too close to tears.
I will meet with Zack's therapist at Beta Counseling on Wednesday to talk about current situation. I know this isn't working. I hope she will agree with me and have some good suggestionsl.
I feel very out of control, and very overwhelmed. Thankfully, I have this blog to help me deal with things and verbalize things.
I wonder about the insurance. How come they pay for current hospitalization on emergency basis, but not for residential treatment. I wonder how to find out more about that. I wonder whether the person we were talking to even knows every detail. She was adamant about 'only 26 counseling sessions, that's all we do' Adding that item to my list of things to do.
Oh, I also got phone call from hospital that I have to be in XXX (city about an hour away from here) at 9:10 am to appear before judge. I sooooo hate hate hate hate hate hate hate having to do that. Did I mention I hate it? It is just plain miserable, I have a hard time even thinking about it today and am too close to tears.
I will meet with Zack's therapist at Beta Counseling on Wednesday to talk about current situation. I know this isn't working. I hope she will agree with me and have some good suggestionsl.
I feel very out of control, and very overwhelmed. Thankfully, I have this blog to help me deal with things and verbalize things.
School Update
Since last Wednesday, we have been trying to get into contact with someone from the school system to enroll him and talk to them. The responsible people all seem to hope that if they just ignore us , we will go away. And the most responsible person is at a conference till Thursday. So this is yet another exercise in frustration. And yet another thing to arrange and keep track of.
Our special needs support center sent me a very helpful booklet about the special education process. It answers a lot of the timeline questions I had
So this means possible 15 + 45 + 30 days till initial IEP gets written. That is three freaking months! I feel that this might be a bit long to wait :p Not to mention that we haven't even started the process yet, since we can't get the right people to reply to us.
And yes, we can try to speed up the process, but my earlier experiences with this school system do not give me much hope for that.
Can you tell I am a bit frustrated?
Our special needs support center sent me a very helpful booklet about the special education process. It answers a lot of the timeline questions I had
- 15 days from receipt or referral to the disposition of the referral by the IEP team.
- 45 days from receipt of written parental consent for evulations, until the evaluations are to be completed and given to the parents
- 30 days from determination of child's eligibility to conduct meeting to write IEP
- 10 days written notice for parents before an IEP meeting (which can be waived by the parents)
So this means possible 15 + 45 + 30 days till initial IEP gets written. That is three freaking months! I feel that this might be a bit long to wait :p Not to mention that we haven't even started the process yet, since we can't get the right people to reply to us.
And yes, we can try to speed up the process, but my earlier experiences with this school system do not give me much hope for that.
Can you tell I am a bit frustrated?
Saturday, August 4, 2007
And Yet Another Hospitalization...
Today, things fell apart yet again.
Zack's sleeping is all messed up already, so he got up late, around noon. He seemed in an ok mood and made himself some breakfast. Enter my friends Pippi and Annika. The moment they are on the driveway, Zack starts screaming. 'Pippi and Annika are here!!! Now I can't eat! I CAN'T EAT!' Mind you, Pippi and Annika hadn't even made it into the house yet, they actually spent their whole visit in the yard.
Zack got more upset by the minute. He yelled, 'I cannot eat, so I will have to throw my bowl!' Proceeding to fling his bowl to the floor, including cheerios and milk... Very messy.
I told him to pick it up and moved outside to be with my friends, hoping that some time would calm him down, it often does. Not today though. He came running outside and yelling 'I want Pippi and Annika to leave. If they won't leave I'll kill them!' He was very upset. I calmly told them that I was not going to ask them to leave, they are my friends, I can have friends over.' He clearly did not agree to that and screamed more. Pippi offered to help him clean up the mess he made but he screamed 'NOOOOOOOOOOO!'
He disappeared inside and came out almost immediately 'I cleaned it up!' When I checked on it, he had cleaned up the milk, but there still were many milk-soggy cheerios on the floor. Not only that, but two chairs had been thrown through the kitchen. I asked him to clean up the rest of the mess. He was still very mad and telling us he would kill us. He told me I was clearly a bad mother for allowing Annika and Pippi to be here. He was spitting on me.
Eventually he went inside again and came out with dustpan full of soggy cheerios. He proceeded to throw them all over me... I stayed calm, but I had this sinking feeling in my stomach that things were not going particularly well today.
He still was very upset and again threatened to kill me. He was waving the dustpan and the brush around and was going to kill all of us. He hit me with the brush and then ran inside again. In between all this he told us he was doing all this because the parasites were eating him and that gave him a bad mood. And his medication wasn't helping, because the parasites eat all the meds and they take all his nutrients. Those parasites really were bothering him today.
By now, Ysa, 11yo and Barbara, 10yo came home from a birthday party. They went inside and came out again almost immediately. 'Mama! Zack is throwing sweaters at us! We didn't do anything, he just started throwing.' Now I have to admit that sweaters isn't a very impressive throwing weapon, but later, in ER he told the doctor 'I was just throwing them as a warning, I knew they wouldn't hurt. But I wanted to warn them that if they annoyed me, I would throw something heavier and more dangerous.'
He kept insisting that he would kill Pippi and Annika, he also wanted to kill himself. He asked me to take him in car and drive the car off a cliff. 'If only you would let me kill myself, I would be happy.' 'I want you to let me commit suicide!' 'I need my gun!' He also told me that he wanted to go away.
He asked me that I should get restraining order on my friends Pippi and Annika, so that they couldn't come to our house anymore. Um... no. Later in ER he told me he was just going to kill their kids, so that they wouldn't have to come visit us anymore. He also told to the dr in ER 'I don't really want to kill them, but if they keep coming, I might not be able to restrain myself.' Did I mention lately how frustrated I am with this current situation?
In between all this we had complaints about the parasites and also that demons made him do this. At the hospital , there were all those demons, and that's why he couldn't go back to the hospital. Every time he goes to the hospital, those demons try to possess him and make him do things when he gets back home. Later he denied anything about demons, but the parasites still were a very big thing to him during ER visit.
I called the emergency counselor, who actually did call back promptly today. I told him the situation, and he told me that if I thought people weren't safe, I should get Zack to ER. I wasn't too worried about myself, but I have to admit that threat to the little ones worries me when he is in a mood like this. He is a LOT bigger and stronger than the 3yo and 6yo, and last week, he has threatened to strangle the 6yo. He tends to be very in her face and verbally abusive to the 3yo when he is upset.
So yet again, off we go to the ER. So much for spending relaxed weekend day.
At the ER, I find out the secret of getting almost instantenuous service. I tell the front desk person 'I am here with my almost 14yo who wants to kill himself and others.' Zack runs at us, screaming 'I AM NOT 14YO, I AM 13YO!!!' and is quite loud and insistent about it. I correct his age, but he still clearly is very upset.
Usually we have to sit down in waiting room and wait for a bit before we even see the nurse. THis time, we can go in right away. When the nurse tries to get his information and he starts yelling at her about 'Those parasites are eating me, you bitch!', it doesn't take long for her to make quick phone call to ask for a 'lockdown room' and she leads us on a fast shortcut to exam room. In that room, one of the walls with desk and drawers got covered by a metal wall thingy, so he couldn't reach any of that. They also took out one of those instrument table thingies. They clearly tried to make the room as safe as possible. Which was good, because he ended up throwing pillows, sheets, mattress, and his cup.
We yet again, got our very own security persons in front of our door. They had to come in a few times to tell him to calm down, especially when Zack started kicking me. The drs asked me what I expected from this ER visit and I told them how frustrated this all was , and how I felt that this was my only option, even if not a good one. I really did not feel that I could keep the little ones safe if he gets into moods like this. Anything can set him off. Today it was visitors. Tomorrow it can be sibling eating pasta. The next day can be a dog in our yard.
The ER doctors were not too happy about this all, but did feel that if I thought people weren't safe, he should go to child psych ward again. So the paperwork got started, and about five hours later, he got transferred.
During the wait, they gave him a pill to help him calm down, which helped somewhat. Later, he kept walking around the bed, from one side to the other side, over and over, while his hand had to trace around the circumference of the mattress. He kept walking and walking and walking and walking. Finally, the ambulance showed up.
This is getting ridiculous. How long before he gets the help he needs????
Zack's sleeping is all messed up already, so he got up late, around noon. He seemed in an ok mood and made himself some breakfast. Enter my friends Pippi and Annika. The moment they are on the driveway, Zack starts screaming. 'Pippi and Annika are here!!! Now I can't eat! I CAN'T EAT!' Mind you, Pippi and Annika hadn't even made it into the house yet, they actually spent their whole visit in the yard.
Zack got more upset by the minute. He yelled, 'I cannot eat, so I will have to throw my bowl!' Proceeding to fling his bowl to the floor, including cheerios and milk... Very messy.
I told him to pick it up and moved outside to be with my friends, hoping that some time would calm him down, it often does. Not today though. He came running outside and yelling 'I want Pippi and Annika to leave. If they won't leave I'll kill them!' He was very upset. I calmly told them that I was not going to ask them to leave, they are my friends, I can have friends over.' He clearly did not agree to that and screamed more. Pippi offered to help him clean up the mess he made but he screamed 'NOOOOOOOOOOO!'
He disappeared inside and came out almost immediately 'I cleaned it up!' When I checked on it, he had cleaned up the milk, but there still were many milk-soggy cheerios on the floor. Not only that, but two chairs had been thrown through the kitchen. I asked him to clean up the rest of the mess. He was still very mad and telling us he would kill us. He told me I was clearly a bad mother for allowing Annika and Pippi to be here. He was spitting on me.
Eventually he went inside again and came out with dustpan full of soggy cheerios. He proceeded to throw them all over me... I stayed calm, but I had this sinking feeling in my stomach that things were not going particularly well today.
He still was very upset and again threatened to kill me. He was waving the dustpan and the brush around and was going to kill all of us. He hit me with the brush and then ran inside again. In between all this he told us he was doing all this because the parasites were eating him and that gave him a bad mood. And his medication wasn't helping, because the parasites eat all the meds and they take all his nutrients. Those parasites really were bothering him today.
By now, Ysa, 11yo and Barbara, 10yo came home from a birthday party. They went inside and came out again almost immediately. 'Mama! Zack is throwing sweaters at us! We didn't do anything, he just started throwing.' Now I have to admit that sweaters isn't a very impressive throwing weapon, but later, in ER he told the doctor 'I was just throwing them as a warning, I knew they wouldn't hurt. But I wanted to warn them that if they annoyed me, I would throw something heavier and more dangerous.'
He kept insisting that he would kill Pippi and Annika, he also wanted to kill himself. He asked me to take him in car and drive the car off a cliff. 'If only you would let me kill myself, I would be happy.' 'I want you to let me commit suicide!' 'I need my gun!' He also told me that he wanted to go away.
He asked me that I should get restraining order on my friends Pippi and Annika, so that they couldn't come to our house anymore. Um... no. Later in ER he told me he was just going to kill their kids, so that they wouldn't have to come visit us anymore. He also told to the dr in ER 'I don't really want to kill them, but if they keep coming, I might not be able to restrain myself.' Did I mention lately how frustrated I am with this current situation?
In between all this we had complaints about the parasites and also that demons made him do this. At the hospital , there were all those demons, and that's why he couldn't go back to the hospital. Every time he goes to the hospital, those demons try to possess him and make him do things when he gets back home. Later he denied anything about demons, but the parasites still were a very big thing to him during ER visit.
I called the emergency counselor, who actually did call back promptly today. I told him the situation, and he told me that if I thought people weren't safe, I should get Zack to ER. I wasn't too worried about myself, but I have to admit that threat to the little ones worries me when he is in a mood like this. He is a LOT bigger and stronger than the 3yo and 6yo, and last week, he has threatened to strangle the 6yo. He tends to be very in her face and verbally abusive to the 3yo when he is upset.
So yet again, off we go to the ER. So much for spending relaxed weekend day.
At the ER, I find out the secret of getting almost instantenuous service. I tell the front desk person 'I am here with my almost 14yo who wants to kill himself and others.' Zack runs at us, screaming 'I AM NOT 14YO, I AM 13YO!!!' and is quite loud and insistent about it. I correct his age, but he still clearly is very upset.
Usually we have to sit down in waiting room and wait for a bit before we even see the nurse. THis time, we can go in right away. When the nurse tries to get his information and he starts yelling at her about 'Those parasites are eating me, you bitch!', it doesn't take long for her to make quick phone call to ask for a 'lockdown room' and she leads us on a fast shortcut to exam room. In that room, one of the walls with desk and drawers got covered by a metal wall thingy, so he couldn't reach any of that. They also took out one of those instrument table thingies. They clearly tried to make the room as safe as possible. Which was good, because he ended up throwing pillows, sheets, mattress, and his cup.
We yet again, got our very own security persons in front of our door. They had to come in a few times to tell him to calm down, especially when Zack started kicking me. The drs asked me what I expected from this ER visit and I told them how frustrated this all was , and how I felt that this was my only option, even if not a good one. I really did not feel that I could keep the little ones safe if he gets into moods like this. Anything can set him off. Today it was visitors. Tomorrow it can be sibling eating pasta. The next day can be a dog in our yard.
The ER doctors were not too happy about this all, but did feel that if I thought people weren't safe, he should go to child psych ward again. So the paperwork got started, and about five hours later, he got transferred.
During the wait, they gave him a pill to help him calm down, which helped somewhat. Later, he kept walking around the bed, from one side to the other side, over and over, while his hand had to trace around the circumference of the mattress. He kept walking and walking and walking and walking. Finally, the ambulance showed up.
This is getting ridiculous. How long before he gets the help he needs????
Involuntary Commitment
J wrote: 'I feel frustrated by the lack of help you are receiving as well. It is unreal that they sent him home after such threats he made, and I do worry about you all.
He really should be hospitalized while he adjusts to his meds. Can you admit him involuntarily to a psych hospital? I am almost certain you can get him in for at least 30 days, and from there, he has a hearing and you can commit him for another 30 days if he needs it. I don't know this for certain in your state, but it is worth checking out.
The times aren't as generous in our state. He was involuntarily committed three times already. The thing is that they kick him out when he behaves well in the hospital. On the other hand, they are an emergency solution and in their viewpoint, the emergency is over. So they do what they are supposed to do, I feel we really need to make clear to everyone that we need a long term solution, not something like going in and out of hospital all the time.
That's what I hoped the letter would help us accomplish, but they have decided that ignoring the letter is easier than dealing with it. I guess we'll have to squeak more till they give us services, just to shut me up. I can hope, right?
He really should be hospitalized while he adjusts to his meds. Can you admit him involuntarily to a psych hospital? I am almost certain you can get him in for at least 30 days, and from there, he has a hearing and you can commit him for another 30 days if he needs it. I don't know this for certain in your state, but it is worth checking out.
The times aren't as generous in our state. He was involuntarily committed three times already. The thing is that they kick him out when he behaves well in the hospital. On the other hand, they are an emergency solution and in their viewpoint, the emergency is over. So they do what they are supposed to do, I feel we really need to make clear to everyone that we need a long term solution, not something like going in and out of hospital all the time.
That's what I hoped the letter would help us accomplish, but they have decided that ignoring the letter is easier than dealing with it. I guess we'll have to squeak more till they give us services, just to shut me up. I can hope, right?
Exploring Police Options
Today, I decided that it was time to visit the police station, to talk to them in a non-emergency situation about what would happen if I would have to call 911. I didn't take Zack, I just went with a friend.
It was very helpful, he explained that they basically try to help to calm the kid down. He also explained to me that if I call 911, and even if I hang up, an officer will come to check out the situation. This is good to know, since Zack doesn't always allow me to call when he is in one of his violent moods and he gets a bit stronger every day. Up till now I have been physically able to make the call anyway, but who knows when that will end. Did I mention lately how frustrated I am with the hospital to just send him home?
One useful piece of information, is that sometimes people file a Child in Need of Services, or so called CHINS petition. I am not sure whether it is helpful in our case, but it is something I do want to read up on and figure out whether that would be an option.
I am happy we visited with the police, got some more idea of what would happen, and gave them a heads-up that their assistance could be needed.
School wise, we have been trying to reach the right persons for the last few days, and they have decided that not calling us back will make us go away. The person we will eventually need, is in a conference till next Thursday. I really feel someone threw us in the water and told us 'OK, now you can learn how to swim, or you can choose to drown. We'll come back two weeks from now to see which option you chose.'
Zack's sleep is all messed up already, one day out of the hospital. He fell asleep around 3am and of course, couldn't get up in the morning. He got up around 1pm. Now it's 2:15am and he is still awake.
It was very helpful, he explained that they basically try to help to calm the kid down. He also explained to me that if I call 911, and even if I hang up, an officer will come to check out the situation. This is good to know, since Zack doesn't always allow me to call when he is in one of his violent moods and he gets a bit stronger every day. Up till now I have been physically able to make the call anyway, but who knows when that will end. Did I mention lately how frustrated I am with the hospital to just send him home?
One useful piece of information, is that sometimes people file a Child in Need of Services, or so called CHINS petition. I am not sure whether it is helpful in our case, but it is something I do want to read up on and figure out whether that would be an option.
I am happy we visited with the police, got some more idea of what would happen, and gave them a heads-up that their assistance could be needed.
School wise, we have been trying to reach the right persons for the last few days, and they have decided that not calling us back will make us go away. The person we will eventually need, is in a conference till next Thursday. I really feel someone threw us in the water and told us 'OK, now you can learn how to swim, or you can choose to drown. We'll come back two weeks from now to see which option you chose.'
Zack's sleep is all messed up already, one day out of the hospital. He fell asleep around 3am and of course, couldn't get up in the morning. He got up around 1pm. Now it's 2:15am and he is still awake.
Friday, August 3, 2007
Family Impact
Yesterday, Tristan, 6yo, in tears 'I don't want Zack to come home!'
Today, Isolde, 8yo, fell totally apart, and was physically quite intensely attacking her sister. But she still is old enough that I can carry her upstairs and wait for her to calm down. Which took a long time, at least 30 or 40 minutes. She was screaming, she was throwing things, she was yelling how much she hates me and is going to kill me, yelling that she is going to kill her siblings. She was going to jump out of the window. Yelling 'You never punish ANYONE but me! Zack only had to go to the hospital, but *I* get sent to my room!'
Can we say copycat behavior? Can we say that the stress of current events is not being very kind to her?
Sigh.
Today, Isolde, 8yo, fell totally apart, and was physically quite intensely attacking her sister. But she still is old enough that I can carry her upstairs and wait for her to calm down. Which took a long time, at least 30 or 40 minutes. She was screaming, she was throwing things, she was yelling how much she hates me and is going to kill me, yelling that she is going to kill her siblings. She was going to jump out of the window. Yelling 'You never punish ANYONE but me! Zack only had to go to the hospital, but *I* get sent to my room!'
Can we say copycat behavior? Can we say that the stress of current events is not being very kind to her?
Sigh.
Thursday, August 2, 2007
If Only Reality Were This Easy
It is Friday morning. It promises to be yet another warm day. I get Zack out of bed and we drive to our local school.
8am, enter school building.
'Hello, I brought you Zack for schooling today.'
Person, Sitting At Desk 'Um... Zack?'
Me, smiling 'Yes, remember how we called about enrolling him?'
PSAD, warily 'Yes?'
Me, in a positive tone of voice 'He is yours! The hospital told me that you could solve all his problems. I am so grateful you guys are helping us with that.'
PSAD 'All his problems?'
Me 'I am sure the hospital can fill you in on the details, I need to run. Would you like me to pick him up at 3pm or 4pm?' not giving time for a word in between.
Me 'OK, 4pm it is! See you! Have a great day!'
8am, enter school building.
'Hello, I brought you Zack for schooling today.'
Person, Sitting At Desk 'Um... Zack?'
Me, smiling 'Yes, remember how we called about enrolling him?'
PSAD, warily 'Yes?'
Me, in a positive tone of voice 'He is yours! The hospital told me that you could solve all his problems. I am so grateful you guys are helping us with that.'
PSAD 'All his problems?'
Me 'I am sure the hospital can fill you in on the details, I need to run. Would you like me to pick him up at 3pm or 4pm?' not giving time for a word in between.
Me 'OK, 4pm it is! See you! Have a great day!'
Home Again
Today, I picked up Zack from the hospital yet again. The discharge nurse told me 'We got your letter and public school will take care of all the issues you are raising.' I feebly told her that I didn't think that was going to be a very fast solution, since it will take them time to evaluate, write IEP, etc etc, and we would be months away from now. She happily waved that away, it clearly wasn't a problem at all in her mind.
Zack was there too, so I didn't want to get into a 'What planet did you fall from????' fight with her, so I looked a bit dubious, and decided to get back to someone like social worker or doctor later. I don't even know whether they have seen it yet.
W, I decided to write the letter for a few reasons. One, it helped me to verbalize the current issues, both for my sake and for the sake of the hospital and counseling center. Two, I figured it would have more clout to have the issues on paper, so people do not have to play the telephone game and things get more and more confused in every re-telling. Three, if it ever would come to legal action (which i don't expect, I am not the lawsuiting kind of person), this would show very clearly which issues, we raised when. I have to admit that I am not adverse to the counseling center pondering possible legal action against them, and hopefully being more willing to help.
And four, I find more and more that it's the squeaky wheel which gets the attention. Verbal squeaking just gets heard by one person, written squeaking might be read by more.
Zack's family doctor called with results from his recent bloodwork. He does not have celiac, his white bloodcells are up, but still low-ish. His prolactin is back to normal.
This was the perfect time to talk to her about recent hospitalization and about the frustrating lack of followup care. She agreed with me and said I should raise it with Beta Counseling when we see them on Monday. I faxed her the letter I sent to the hospital and the counseling center, so she knows what issues I touched upon.
Now just hoping the vulcano won't erupt :p
Zack was there too, so I didn't want to get into a 'What planet did you fall from????' fight with her, so I looked a bit dubious, and decided to get back to someone like social worker or doctor later. I don't even know whether they have seen it yet.
W, I decided to write the letter for a few reasons. One, it helped me to verbalize the current issues, both for my sake and for the sake of the hospital and counseling center. Two, I figured it would have more clout to have the issues on paper, so people do not have to play the telephone game and things get more and more confused in every re-telling. Three, if it ever would come to legal action (which i don't expect, I am not the lawsuiting kind of person), this would show very clearly which issues, we raised when. I have to admit that I am not adverse to the counseling center pondering possible legal action against them, and hopefully being more willing to help.
And four, I find more and more that it's the squeaky wheel which gets the attention. Verbal squeaking just gets heard by one person, written squeaking might be read by more.
Zack's family doctor called with results from his recent bloodwork. He does not have celiac, his white bloodcells are up, but still low-ish. His prolactin is back to normal.
This was the perfect time to talk to her about recent hospitalization and about the frustrating lack of followup care. She agreed with me and said I should raise it with Beta Counseling when we see them on Monday. I faxed her the letter I sent to the hospital and the counseling center, so she knows what issues I touched upon.
Now just hoping the vulcano won't erupt :p
Wednesday, August 1, 2007
Letter
I will fax this letter to the hospital and the counseling center tomorrow morning. Feel free to give any feedback on it, I still can change things if needed.
I am writing this letter to raise some concerns I have concerning Zack's current situation.
First, I would like to say, that both the Alpha Center and Beta Counseling have been helpful during Zack's crisis and I would like to express my gratitude for that.
Over the last two and a half months, Zack has been hospitalized three times and has spent thirty eight days in the Alpha Center. Every time he comes home, things seem to be going well for a few weeks. He can hold himself together reasonably well, but once he snaps, he snaps very dramatically. Also, the incidents have gotten more severe at every occurrence, which worries me. I realize that Prozac can make some people more aggressive, and I am wondering whether Zack is one of the individuals for whom this is the case.
Today, Zack is coming home again. I am wondering which plan is in place to get him the intensive help he needs. I feel that he needs more frequent and more intense help than he is receiving at the moment. I am worried that he will snap again and we will be back to ground zero. This merry-go-round has to stop. He cannot keep bouncing in and out of the hospital. He needs to learn accountability, and I would prefer him not to learn this by getting into contact with our police force.
Yesterday, I learned about a program called XXX. It sounds like this might be a program that could benefit Zack and his family. Is there any way to access this program via Beta Counseling?
This disease is not only affecting Zack, it's engendering a family crisis situation. We have many smaller children in our home. His increasing violence is very worrisome to me. I feel that the hospitalization at the Alpha Center is a great short term solution, but it is not addressing the underlying issues. The behavior he exhibits in the hospital is not the same behavior he shows out of the hospital. The medication regime that works when an inpatient does not seem to be working for him as an outpatient. His siblings often are tiptoeing around him, afraid to set him off. This is not a healthy situation for Zack or his family.
Zack needs to learn new stress management techniques. So far this has not really been addressed much, outside of an offer during a session at Beta Counseling to teach Zack breathing exercises, which he rejected outright at the time. It seems imperative that he be taught more ways to reduce stress. I realize that this is not going to be a quick fix, and I would like him to get started on it sooner, rather than later.
I feel that I have not been given enough information to make autonomous decisions. The XXX program was a program that I didn't know about. I have not been informed whether Zack has a case manager at Beta Counseling yet. If he does, I haven't been in any contact with her. In a way it seems that Beta Counseling is waiting for the Katie Beckett program to kick in before they go into the more intense therapy sessions, but I don't feel we can wait that long. I hope I am incorrect in that assumption. We need help now. I am confident that the Alpha Center and Beta Counseling can coordinate the best way to get Zack the help he desperately needs.
I am writing this letter to raise some concerns I have concerning Zack's current situation.
First, I would like to say, that both the Alpha Center and Beta Counseling have been helpful during Zack's crisis and I would like to express my gratitude for that.
Over the last two and a half months, Zack has been hospitalized three times and has spent thirty eight days in the Alpha Center. Every time he comes home, things seem to be going well for a few weeks. He can hold himself together reasonably well, but once he snaps, he snaps very dramatically. Also, the incidents have gotten more severe at every occurrence, which worries me. I realize that Prozac can make some people more aggressive, and I am wondering whether Zack is one of the individuals for whom this is the case.
Today, Zack is coming home again. I am wondering which plan is in place to get him the intensive help he needs. I feel that he needs more frequent and more intense help than he is receiving at the moment. I am worried that he will snap again and we will be back to ground zero. This merry-go-round has to stop. He cannot keep bouncing in and out of the hospital. He needs to learn accountability, and I would prefer him not to learn this by getting into contact with our police force.
Yesterday, I learned about a program called XXX. It sounds like this might be a program that could benefit Zack and his family. Is there any way to access this program via Beta Counseling?
This disease is not only affecting Zack, it's engendering a family crisis situation. We have many smaller children in our home. His increasing violence is very worrisome to me. I feel that the hospitalization at the Alpha Center is a great short term solution, but it is not addressing the underlying issues. The behavior he exhibits in the hospital is not the same behavior he shows out of the hospital. The medication regime that works when an inpatient does not seem to be working for him as an outpatient. His siblings often are tiptoeing around him, afraid to set him off. This is not a healthy situation for Zack or his family.
Zack needs to learn new stress management techniques. So far this has not really been addressed much, outside of an offer during a session at Beta Counseling to teach Zack breathing exercises, which he rejected outright at the time. It seems imperative that he be taught more ways to reduce stress. I realize that this is not going to be a quick fix, and I would like him to get started on it sooner, rather than later.
I feel that I have not been given enough information to make autonomous decisions. The XXX program was a program that I didn't know about. I have not been informed whether Zack has a case manager at Beta Counseling yet. If he does, I haven't been in any contact with her. In a way it seems that Beta Counseling is waiting for the Katie Beckett program to kick in before they go into the more intense therapy sessions, but I don't feel we can wait that long. I hope I am incorrect in that assumption. We need help now. I am confident that the Alpha Center and Beta Counseling can coordinate the best way to get Zack the help he desperately needs.
Support
My friend found me someone who has two kids with similar issues as Zack, who is a few years ahead of is in our local school system. She talked to her and it sounds like she will be the perfect person for me to talk to. She gave me some local resources which I will visit today. I hope to talk to her tonight or tomorrow.
One of her kids in is residential placement, the other is in private school. I am looking forward to talking to her and hear her voice of experience.
One of her kids in is residential placement, the other is in private school. I am looking forward to talking to her and hear her voice of experience.
Katie Beckett
Talked to someone at social security today. She told me that the forms are all still at the district office, to review them financially. Once they are done with it, they will send them to her and she will send out the medical questionaires. She also told me that Zack need to initial to approve the release of his psychological records. Any kid over 12yo can go see a counselor without parents knowledge or permission. So kids that age, need to give explicit permission to have records released. That is going to be fun, to convince Zack to sign this.
She faxed me the pertinent forms and I will fill them in and fax them back to her once I have Zack's signature. More paperwork crap, feh.
She also said it is almost impossible for him to get Katie Beckett unless they know how he has been coded for the school system... I told her he had been homeschooled so far, and any information in the school system is years old. But I also told her we were enrolling him in the school system now, so that might help them. I don't know, I feel that I am on very unfamiliar terrain and just trying to stay afloat while juggling many balls. I always have wanted to learn how to juggle, so this will be perfect life opportunity.
She faxed me the pertinent forms and I will fill them in and fax them back to her once I have Zack's signature. More paperwork crap, feh.
She also said it is almost impossible for him to get Katie Beckett unless they know how he has been coded for the school system... I told her he had been homeschooled so far, and any information in the school system is years old. But I also told her we were enrolling him in the school system now, so that might help them. I don't know, I feel that I am on very unfamiliar terrain and just trying to stay afloat while juggling many balls. I always have wanted to learn how to juggle, so this will be perfect life opportunity.
Court and Other Crap
Yesterday, at 9am, I had to show up in court. I hate hate hate having to go through this and having to put Zack through this. We both are on opposite sides of the court room, Zack with his lawyer and someon from the hospital, me just by myself. I was sworn in and the judge asked questions. So did his lawyer. Afer listening, he told us that he would let us know his decision shortly.
This was different from last time, when he told us the decision immediately. No idea why the difference. It sure made me wonder whether he was going to say 'no due cause' this time, but there wasn't anything I could do about it, so I hoped for the best.
After court, we visited with Zack for a while, before seeing his doctor. We brought up the issue of residential placement with his doctor. He said that paying for it was going to be an issue. He told me it usually happens in three different ways.
Clearly, none of those options apply for Zack at the moment. But the good news is, that I had decided already that I was going to enroll him in public school. I am a firm believer in homeschooling, but I feel it is not working for Zack at the moment. I can not give him the academics he needs, because of his oppositional behavior. I can not give him the structure he seems to crave because of his Apergers and his OCD. I cannot be teacher, therapist, caregiver, and mother to him, all at the same time.
The school system, by law, is required to give him an appropriate education, and to pay for residential school if it turns out that that is what he needs. So we have started phone calls to find out how to enroll him, and get him the evalutions and special services he needs.
They have 30 or 45 days from when they have the request in writing, to come up with an IEP. Zack's social worker was very opposed to the idea of a home tutor, if they proposed that. She said we should press for more. I had been thinking that a home tutor might be good transition into school, but I have no idea at all. I guess that is all details we'll have to work out over the next few months.
I am both happy about having found a possible solution for him, and said that we have to enroll him in public school to do so. My issues with public schools are many, but I feel that this is best for him right now. Not easy to admit though. I am past feeling like a failure though, I am convinced I am doing the best I can under the circumstances I've been handed. I am grateful for the support of you all, it has helped me a lot to write down things and talk through things.
But in the short term, this all means he'll be home again. He will be discharged tomorrow. I am a bit tentative about how this will go and what the impact on the family will be. The dr and social worker are going to work on getting him on a 'voluntary list' at the hospital though, making it such that we can get him into the hospital when needed WITHOUT going through the ER. This will improve things somewhat. Maybe not the perfect solution for now, but we should give it a chance I guess.
This was different from last time, when he told us the decision immediately. No idea why the difference. It sure made me wonder whether he was going to say 'no due cause' this time, but there wasn't anything I could do about it, so I hoped for the best.
After court, we visited with Zack for a while, before seeing his doctor. We brought up the issue of residential placement with his doctor. He said that paying for it was going to be an issue. He told me it usually happens in three different ways.
- Kid gets into trouble with the law and gets court ordered into treatment.
- Kid gets put into treatment by Child Protective Services.
- School system pays for residential school / treatment because kid can not be educated at the normal school.
Clearly, none of those options apply for Zack at the moment. But the good news is, that I had decided already that I was going to enroll him in public school. I am a firm believer in homeschooling, but I feel it is not working for Zack at the moment. I can not give him the academics he needs, because of his oppositional behavior. I can not give him the structure he seems to crave because of his Apergers and his OCD. I cannot be teacher, therapist, caregiver, and mother to him, all at the same time.
The school system, by law, is required to give him an appropriate education, and to pay for residential school if it turns out that that is what he needs. So we have started phone calls to find out how to enroll him, and get him the evalutions and special services he needs.
They have 30 or 45 days from when they have the request in writing, to come up with an IEP. Zack's social worker was very opposed to the idea of a home tutor, if they proposed that. She said we should press for more. I had been thinking that a home tutor might be good transition into school, but I have no idea at all. I guess that is all details we'll have to work out over the next few months.
I am both happy about having found a possible solution for him, and said that we have to enroll him in public school to do so. My issues with public schools are many, but I feel that this is best for him right now. Not easy to admit though. I am past feeling like a failure though, I am convinced I am doing the best I can under the circumstances I've been handed. I am grateful for the support of you all, it has helped me a lot to write down things and talk through things.
But in the short term, this all means he'll be home again. He will be discharged tomorrow. I am a bit tentative about how this will go and what the impact on the family will be. The dr and social worker are going to work on getting him on a 'voluntary list' at the hospital though, making it such that we can get him into the hospital when needed WITHOUT going through the ER. This will improve things somewhat. Maybe not the perfect solution for now, but we should give it a chance I guess.
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