Tuesday, December 22, 2009
Tuesday, December 15, 2009
Monday, December 14, 2009
Wednesday, December 9, 2009
Tuesday, December 8, 2009
Friday, December 4, 2009
Saturday, November 28, 2009
Wednesday, November 18, 2009
Saturday, November 14, 2009
Friday, November 13, 2009
Wednesday, November 4, 2009
Monday, November 2, 2009
Friday, October 30, 2009
Wednesday, October 28, 2009
Sunday, October 11, 2009
Friday, October 2, 2009
Friday, September 25, 2009
Tuesday, September 22, 2009
Sunday, September 20, 2009
Friday, September 18, 2009
Thursday, September 17, 2009
Monday, September 14, 2009
Tuesday, September 1, 2009
The New School
Last week went pretty smoothly. There was one incident, a sort of mini-melt, that occurred in the cafeteria. I guess DS got upset when he couldn't locate his buddy in the lunchroom. The para said they were going to try to set it up so that the boys could meet before lunch, to avoid a recurrence. I didn't hear of any aggressions, just that he got upset, so that's good. And they seemed to handle it rather well. It was only a partial week, but considering last year he was restrained on day 2, it was a far better beginning here than there.
Yesterday was rather touchy, however. The school called DH. (Not really sure why they call him. I thought I had indicated that I should be the primary contact?) DS was having a pretty good meltdown. Not yet aggressive, but unable to communicate, rigid, unmoving, frozen in the hallway.
Oh great. At that point, we had two people not show up in my department. I was the only one on the phones, until the gal from purchasing jumped in to help me. It's not her responsibility to cover my department. I couldn't leave with no one in the department!
I called the school and spoke to the Vice Principal. He seemed nice on the phone, and very understanding of what was going on with DS. But by now, DS was growling. Not good. And he'd been in the hallway for more than a class period. Shoot. I told him I'd try to get there, but right now I had no one to cover for me.
Fortunately, as soon as I got off the phone, a co-worker arrived. It was still the worst possible moment to ask to leave, but they were nice enough to allow it. I rushed to the school (which is closer to me than the old one, thank goodness).
DS wasn't in the hallway by the gym as I was told, so I headed to the office. The VP came to meet me. He seemed even nicer in person than on the phone, which was a huge relief for me.
DS was in the nurse's office, and had that dark-circles-under-the-eye thing going on. That's not a good sign. I tried to sound as cheerful as I could, so he wouldn't assume I was mad or he was in trouble. Poor kid was probably scared out of his mind after all the promises we'd heard previously to call the police if he melted. I was a bit worried myself, truth be told.
I tried to talk to him but he was completely shut off. He didn't growl, though, so that was at least a start. I managed to wheedle out of him that he got upset because he went to gym class and got into the locker room, when he realized that he forgot to bring his gym clothes. They were still in his backpack. Well, in a new place, where he didn't know what would happen, he freaked. He ran out of the locker room, and to his aide. Unfortunately, he couldn't TELL the poor aide what was wrong, so she was at a loss about what was happening and why.
Once we got the reason figured out, the VP and the nurse and the aide were extremely helpful. They offered to let him change in the nurse's office for now. He could keep his gym clothes there. That killed several birds with one stone. That offered DS some privacy, a less overwhelming (noisy, over-stimulating) place to change, and a routine to keep him from forgetting the uniform. They also asked about some other things that had upset him that day and previously. We've sent earplugs to help with the lunchroom and locker room. We also agreed to allow DS to walk into the school without his aide, and he would meet her inside. (He was upset about being escorted in, apparently.) And they already arranged for him to meet his buddy at lunch.
Okay, by now DS is really cheering up. He's talking again, at least in short sentences. He's SMILING, which is huge. I ask him if he's ready to go back to class, and he isn't sure. So we take our time of it, go get a drink at the drinking fountain, and chat a little. Now he seems like himself. I ask again about going to class, and he is all set to go. Phew. He went off cheerfully.
I left rather cheerful myself. The VP was unbelievably nice. Gosh, if he's always like this, this school could be a real turnaround for us. And the nurse was very sweet, and now the nurse's office is set up to be a kind of safe haven for DS. If he gets upset, he's free to go there (just let the aide know). I've already suggested that he point to where he's going, if he can't tell her. I hope he remembers that. But at least he knows he's got somewhere to go. And the aide, bless her heart, had the handbook I made in her hand.
I've made that handbook before. It's all kinds of info that I thought would help anyone working with DS. It talks about who he is, what he's normally like, how to deal with a meltdown, info about autism, etc. When I made the book before, no one read it. At least now, someone is actually looking at the information! Another improvement over the last school. I hope it helps.
So yesterday I walked out of the school feeling an enormous sense of relief. At least for this time. I want so badly to hope that things will always go this well. If they did, I could almost hope that the melts would fade away into a memory someday. Today, anyway, that actually seems like a possibility. I want to hope again, but so many bad experiences prevent me from jumping into that. It's early yet. And the melt wasn't severe. Who knows how the next one will go.
But it was a good start. DS had a melt without restraint. And they tried to work with him to feel more comfortable and at ease. The VP was downright COMPASSIONATE! Wow, what an improvement! Maybe this will help DS feel more comfortable here. The more comfortable and confident he feels with his school, the less likely a melt, and the less severe if it does happen.
I'd like to say I'm cautiously optimistic, but to be honest, I'm not really there yet. There's a flicker of hope going on in my heart, but it's so early. I can't really have faith in that yet. So I try to turn over my fear, and put it in God's hands, and just hope for the best. (I'm not good at that yet, either. I still fight an overwhelming sense of panic when I think about him being at school. But I'm trying to put my fear in God's hands. I'm trying.)
As reality settles in, I know this may all be just a honeymoon period. The aggression could resurface. The restraint could come back. The garbage could all be just around the corner. I know that. But at least I do know they have the potential to be good with DS. That's more than I believed last week. Sigh. Time will tell. But for today, at least, I'm smiling. :)
Yesterday was rather touchy, however. The school called DH. (Not really sure why they call him. I thought I had indicated that I should be the primary contact?) DS was having a pretty good meltdown. Not yet aggressive, but unable to communicate, rigid, unmoving, frozen in the hallway.
Oh great. At that point, we had two people not show up in my department. I was the only one on the phones, until the gal from purchasing jumped in to help me. It's not her responsibility to cover my department. I couldn't leave with no one in the department!
I called the school and spoke to the Vice Principal. He seemed nice on the phone, and very understanding of what was going on with DS. But by now, DS was growling. Not good. And he'd been in the hallway for more than a class period. Shoot. I told him I'd try to get there, but right now I had no one to cover for me.
Fortunately, as soon as I got off the phone, a co-worker arrived. It was still the worst possible moment to ask to leave, but they were nice enough to allow it. I rushed to the school (which is closer to me than the old one, thank goodness).
DS wasn't in the hallway by the gym as I was told, so I headed to the office. The VP came to meet me. He seemed even nicer in person than on the phone, which was a huge relief for me.
DS was in the nurse's office, and had that dark-circles-under-the-eye thing going on. That's not a good sign. I tried to sound as cheerful as I could, so he wouldn't assume I was mad or he was in trouble. Poor kid was probably scared out of his mind after all the promises we'd heard previously to call the police if he melted. I was a bit worried myself, truth be told.
I tried to talk to him but he was completely shut off. He didn't growl, though, so that was at least a start. I managed to wheedle out of him that he got upset because he went to gym class and got into the locker room, when he realized that he forgot to bring his gym clothes. They were still in his backpack. Well, in a new place, where he didn't know what would happen, he freaked. He ran out of the locker room, and to his aide. Unfortunately, he couldn't TELL the poor aide what was wrong, so she was at a loss about what was happening and why.
Once we got the reason figured out, the VP and the nurse and the aide were extremely helpful. They offered to let him change in the nurse's office for now. He could keep his gym clothes there. That killed several birds with one stone. That offered DS some privacy, a less overwhelming (noisy, over-stimulating) place to change, and a routine to keep him from forgetting the uniform. They also asked about some other things that had upset him that day and previously. We've sent earplugs to help with the lunchroom and locker room. We also agreed to allow DS to walk into the school without his aide, and he would meet her inside. (He was upset about being escorted in, apparently.) And they already arranged for him to meet his buddy at lunch.
Okay, by now DS is really cheering up. He's talking again, at least in short sentences. He's SMILING, which is huge. I ask him if he's ready to go back to class, and he isn't sure. So we take our time of it, go get a drink at the drinking fountain, and chat a little. Now he seems like himself. I ask again about going to class, and he is all set to go. Phew. He went off cheerfully.
I left rather cheerful myself. The VP was unbelievably nice. Gosh, if he's always like this, this school could be a real turnaround for us. And the nurse was very sweet, and now the nurse's office is set up to be a kind of safe haven for DS. If he gets upset, he's free to go there (just let the aide know). I've already suggested that he point to where he's going, if he can't tell her. I hope he remembers that. But at least he knows he's got somewhere to go. And the aide, bless her heart, had the handbook I made in her hand.
I've made that handbook before. It's all kinds of info that I thought would help anyone working with DS. It talks about who he is, what he's normally like, how to deal with a meltdown, info about autism, etc. When I made the book before, no one read it. At least now, someone is actually looking at the information! Another improvement over the last school. I hope it helps.
So yesterday I walked out of the school feeling an enormous sense of relief. At least for this time. I want so badly to hope that things will always go this well. If they did, I could almost hope that the melts would fade away into a memory someday. Today, anyway, that actually seems like a possibility. I want to hope again, but so many bad experiences prevent me from jumping into that. It's early yet. And the melt wasn't severe. Who knows how the next one will go.
But it was a good start. DS had a melt without restraint. And they tried to work with him to feel more comfortable and at ease. The VP was downright COMPASSIONATE! Wow, what an improvement! Maybe this will help DS feel more comfortable here. The more comfortable and confident he feels with his school, the less likely a melt, and the less severe if it does happen.
I'd like to say I'm cautiously optimistic, but to be honest, I'm not really there yet. There's a flicker of hope going on in my heart, but it's so early. I can't really have faith in that yet. So I try to turn over my fear, and put it in God's hands, and just hope for the best. (I'm not good at that yet, either. I still fight an overwhelming sense of panic when I think about him being at school. But I'm trying to put my fear in God's hands. I'm trying.)
As reality settles in, I know this may all be just a honeymoon period. The aggression could resurface. The restraint could come back. The garbage could all be just around the corner. I know that. But at least I do know they have the potential to be good with DS. That's more than I believed last week. Sigh. Time will tell. But for today, at least, I'm smiling. :)
Sunday, August 23, 2009
Saturday, August 15, 2009
The Website is a Mess
I've been so wrapped up in my family crises, that the website has really turned into a mess. I'm in the process now of cleaning up the calendar and some of the contact info. Sheesh, I've got a boatload of work ahead of me.
I just deleted the calendar and have started over from scratch. I wrote to Easter Seals and asked what the hot events are, things that will come up quickly. Then I started sorting through old emails.
Holy Toledo, on a slow day I get 200 emails, so you can imagine what an undertaking it is to sort through emails dating back to the early fall months of '08.
After I get it cleaned up a bit, I will work on reconstructing the site altogether. It may necessitate me taking a class on web design at the local community college. I bought software, but have yet to make it functionable for me. (It's all me, folks. I'm just not terribly computer savy.) For the time being, I'll use my old tried and true (and archaic, I guess). Then maybe I'll convert what I have into the new software. Then perhaps I'll get adventurous and start to rebuild it with an all new look.
I want to revamp it all with some of the graphics fun I'm learning. We'll see how it goes. I already feel over my head. (gulp)
I'll keep you posted. You can check out my progress at www.rockfordautism.com.
I just deleted the calendar and have started over from scratch. I wrote to Easter Seals and asked what the hot events are, things that will come up quickly. Then I started sorting through old emails.
Holy Toledo, on a slow day I get 200 emails, so you can imagine what an undertaking it is to sort through emails dating back to the early fall months of '08.
After I get it cleaned up a bit, I will work on reconstructing the site altogether. It may necessitate me taking a class on web design at the local community college. I bought software, but have yet to make it functionable for me. (It's all me, folks. I'm just not terribly computer savy.) For the time being, I'll use my old tried and true (and archaic, I guess). Then maybe I'll convert what I have into the new software. Then perhaps I'll get adventurous and start to rebuild it with an all new look.
I want to revamp it all with some of the graphics fun I'm learning. We'll see how it goes. I already feel over my head. (gulp)
I'll keep you posted. You can check out my progress at www.rockfordautism.com.
Thursday, August 13, 2009
Tuesday, August 4, 2009
Wednesday, July 22, 2009
Tuesday, July 21, 2009
Saturday, June 13, 2009
Thursday, June 4, 2009
Wednesday, May 27, 2009
Cured
Today was the IEP meeting. This is the one where they do the 3 year evaluation. The IEP team has decided that Nathan is no longer autistic.
Imagine that.
Apparently, he is cured of autism. Some of the tests do show signs of Aspergers, but their main diagnostic tests indicate that Nathan does not, indeed fall within the autism spectrum. At all.
Yes, he still qualifies for an IEP. They now classify him as having OHI/ADHD.
So now the Autism Team is no longer involved with him. And besides, the Autism Team indicates that they think his issues are "behavioral" anyway, according to the IEP team.
Wow, I must be amazing, to be able to come up with a cure for autism, huh?
Imagine that.
Apparently, he is cured of autism. Some of the tests do show signs of Aspergers, but their main diagnostic tests indicate that Nathan does not, indeed fall within the autism spectrum. At all.
Yes, he still qualifies for an IEP. They now classify him as having OHI/ADHD.
So now the Autism Team is no longer involved with him. And besides, the Autism Team indicates that they think his issues are "behavioral" anyway, according to the IEP team.
Wow, I must be amazing, to be able to come up with a cure for autism, huh?
Monday, May 11, 2009
Change of Plans??
The school called and left a message on my cell. They want to change the plans for the days of the field trip. The principal had a nice chat with DS, and they agreed that he would come to school for those three days, and he would work at his own pace, he could do computer work, and he could make his own schedule. Even decide when he would go to lunch. Supposedly, DS was all excited about this. (Yeah, sure. The kid would be more excited to go to school, than to not go to school. Yeah... that makes sense. Not.) This sent up all kinds of red flags. I couldn't imagine my son wanting this.
I was upset. I called DH and left him a message about it. I wanted to consult with him before calling them back. Hey, we arrange for him not to be in school those days because THEY advised us not to send him. Now suddenly they want him there and working? What changed?? Ah yes. Before it was because they didn't want to deal with him on the field trip. Now that he's had too many meltdowns, and this is his punishment to not go, they want to be absolutely sure he is miserable and punished. Missing the trip isn't punishment enough. Let's really sock it to him.
Before I could talk to DH, the teacher called. DS was having a meltdown. (No kidding? Wow, what a surprise. Like I didn't see that coming...) They wanted me to call him on his cell and talk him down. Oh for crying out loud!
I can't believe this. Why can't they just back off and let us handle this? WHY do they have to push and push and push?? Are they completely blind to the fact that he can't handle it? Even when he self destructs right in front of their faces??
I called back and his Case Manager answered his cell phone. She told me she had no idea why he melted down. DUH!! I told her I know why! He's all freaked out about the load of homework they're sending home, and his beloved grandmother is in the hospital again - We spent Friday in the emergency room. And now they're throwing more work at him. And they're making him go to school and work when we told him he can't handle this. Can't they just back off?
I don't know what to tell them. They aren't listening to us. They don't believe us. They are going to push for what they want and to hell with a poor little kid that gets caught in the middle.
We had to go get him from school. He would not calm down. So we keep missing more and more work. And I'm going to be in big trouble if these phone calls (I was on the phone for so long today!) don't stop. I could lose my job. Again. I lost a job a while back because the daycare couldn't handle him. Now it will be because the school can't.
Oh! And I just heard that when DH went to pick up DS from school, he said to DS's aide, "Do you know he spent nine hours doing homework this weekend?" She replied, "Good! Maybe it will make up for the six hours of schoolwork he didn't do on Friday!"
F*** you, you bitch! He wouldn't have missed all that school on Friday if you hadn't sent that shitload of homework home for him and caused him to melt down again!
The end of the school year can't come fast enough.
I was upset. I called DH and left him a message about it. I wanted to consult with him before calling them back. Hey, we arrange for him not to be in school those days because THEY advised us not to send him. Now suddenly they want him there and working? What changed?? Ah yes. Before it was because they didn't want to deal with him on the field trip. Now that he's had too many meltdowns, and this is his punishment to not go, they want to be absolutely sure he is miserable and punished. Missing the trip isn't punishment enough. Let's really sock it to him.
Before I could talk to DH, the teacher called. DS was having a meltdown. (No kidding? Wow, what a surprise. Like I didn't see that coming...) They wanted me to call him on his cell and talk him down. Oh for crying out loud!
I can't believe this. Why can't they just back off and let us handle this? WHY do they have to push and push and push?? Are they completely blind to the fact that he can't handle it? Even when he self destructs right in front of their faces??
I called back and his Case Manager answered his cell phone. She told me she had no idea why he melted down. DUH!! I told her I know why! He's all freaked out about the load of homework they're sending home, and his beloved grandmother is in the hospital again - We spent Friday in the emergency room. And now they're throwing more work at him. And they're making him go to school and work when we told him he can't handle this. Can't they just back off?
I don't know what to tell them. They aren't listening to us. They don't believe us. They are going to push for what they want and to hell with a poor little kid that gets caught in the middle.
We had to go get him from school. He would not calm down. So we keep missing more and more work. And I'm going to be in big trouble if these phone calls (I was on the phone for so long today!) don't stop. I could lose my job. Again. I lost a job a while back because the daycare couldn't handle him. Now it will be because the school can't.
Oh! And I just heard that when DH went to pick up DS from school, he said to DS's aide, "Do you know he spent nine hours doing homework this weekend?" She replied, "Good! Maybe it will make up for the six hours of schoolwork he didn't do on Friday!"
F*** you, you bitch! He wouldn't have missed all that school on Friday if you hadn't sent that shitload of homework home for him and caused him to melt down again!
The end of the school year can't come fast enough.
Not Good News
MIL is not doing so well. They found clots in both her legs. They will be putting in some sort of screening filter so the clots can't travel. They have called in a whole team of specialists. I got a chance to ask one of them some questions.
They are going to run numerous scans on her, including a cat scan and some kind of radio isotope (don't laugh at me if I spell this stuff wrong). They are going to change her meds. Apparently, they are completely baffled why she would be getting clots when on the meds. There is also fluid around her abdomen, and they have no idea why. She has pain in the center of her chest, and they have no idea why. Hm. They say the clots in her legs won't be life threatening (or at least not after they put in the screen?), so she would be able to continue physical therapy. They say it wouldn't prevent her from walking.
They are starting to suspect cancer may be at play. That just freaks me out. (My mom had cancer.) They don't have any proof at this point, only suspicion. I guess some cancers can cause blood clots. yikes.
So right now everything is up in the air as all the tests are organized. Forgive me if I've just repeated previous posts here. I'm a bit fuzzy on what I've told you. If you have read it before, then nothing much has been found out yet.
I don't think things are looking too good. And her spirits are way down. I think she's really bummed that there is no release from the hospital in sight. And she's bummed she was in there for mother's day. And we're all tired of the hospital, so I can only imagine how she must feel as a patient. She's got the worst end of this deal.
It's kinda weird, walking into the hospital, and a nurse you haven't seen since January looks at you and says, "I remember you!" In spite of the long line of faces and names that pass before them week after week, we are memorable enough to stick in their heads. Yikes. But like they told us, you don't often see someone spend six weeks in intensive care, and survive. It's quite rare. And we were there ALL the time. (Often all night.) Also pretty unusual from what I understand.
DH and I are getting worried. We both sense that this is not going well. I'm hoping for some good news to prove us wrong.
They are going to run numerous scans on her, including a cat scan and some kind of radio isotope (don't laugh at me if I spell this stuff wrong). They are going to change her meds. Apparently, they are completely baffled why she would be getting clots when on the meds. There is also fluid around her abdomen, and they have no idea why. She has pain in the center of her chest, and they have no idea why. Hm. They say the clots in her legs won't be life threatening (or at least not after they put in the screen?), so she would be able to continue physical therapy. They say it wouldn't prevent her from walking.
They are starting to suspect cancer may be at play. That just freaks me out. (My mom had cancer.) They don't have any proof at this point, only suspicion. I guess some cancers can cause blood clots. yikes.
So right now everything is up in the air as all the tests are organized. Forgive me if I've just repeated previous posts here. I'm a bit fuzzy on what I've told you. If you have read it before, then nothing much has been found out yet.
I don't think things are looking too good. And her spirits are way down. I think she's really bummed that there is no release from the hospital in sight. And she's bummed she was in there for mother's day. And we're all tired of the hospital, so I can only imagine how she must feel as a patient. She's got the worst end of this deal.
It's kinda weird, walking into the hospital, and a nurse you haven't seen since January looks at you and says, "I remember you!" In spite of the long line of faces and names that pass before them week after week, we are memorable enough to stick in their heads. Yikes. But like they told us, you don't often see someone spend six weeks in intensive care, and survive. It's quite rare. And we were there ALL the time. (Often all night.) Also pretty unusual from what I understand.
DH and I are getting worried. We both sense that this is not going well. I'm hoping for some good news to prove us wrong.
Saturday, May 9, 2009
More Melts
DS has been having more melts. Poor kid hasn't been like this in ages. We had to do his homework from yesterday, and it was too much for him. I've drawn the line. No more homework through the weekend. There's a report he's supposed to continue working on, but it's not due until Wed. It can wait. He needs a break BADLY.
Every time I see that look in his eyes, that one he gets as he's withdrawing, I just want to scream at that school. Don't we have enough struggles? Do you have to pile on top of that, more and more and more? What do you achieve by doing this? It just makes everyone miserable. Can't you just back off, and let us get on as best we can? Can't you see we're trying? We're not out to make your life more difficult - why do you have work to make ours so rough?
Every time I see that look in his eyes, that one he gets as he's withdrawing, I just want to scream at that school. Don't we have enough struggles? Do you have to pile on top of that, more and more and more? What do you achieve by doing this? It just makes everyone miserable. Can't you just back off, and let us get on as best we can? Can't you see we're trying? We're not out to make your life more difficult - why do you have work to make ours so rough?
And Back at the Hospital...
MIL does have a bladder infection. We expected that. She's dehydrated again. Not a big surprise since she couldn't keep anything down. But she also now has blood clots in her legs - odd, since she's been on meds to address the blood clot she had in her arm (months ago). The meds should have prevented more clots. Perhaps the meds couldn't work if she wasn't keeping them down? I don't know what else could explain it.
Now they are talking about doing tests on her heart. No one is completely certain what this is about. They also want to do a colonoscopy, but they are holding off on that because they don't feel they can do that cleansing thing. I'm thinking she's had so little solid food going through her system that a cleansing would be a moot point, but what do I know. I assume there must be a medical reason they can't do it right now.
Geez, I'm tired of hospitals. I can't even imagine how MIL must feel. And now she'll be there through Mothers Day. Bummer.
Now they are talking about doing tests on her heart. No one is completely certain what this is about. They also want to do a colonoscopy, but they are holding off on that because they don't feel they can do that cleansing thing. I'm thinking she's had so little solid food going through her system that a cleansing would be a moot point, but what do I know. I assume there must be a medical reason they can't do it right now.
Geez, I'm tired of hospitals. I can't even imagine how MIL must feel. And now she'll be there through Mothers Day. Bummer.
Friday, May 8, 2009
Wednesday, May 6, 2009
Oh How Nice
I got a response to my letter to the teacher. She replied by sending home 24 PAGES of homework to be done, for missing 3 days of school. She also said this was MODIFIED, and the amount reduced. So it was going to be more.
She said that the students participating in the camping trip will have an activity schedule and classroom curriculum as their classwork. So this homework is assigned to students not participating in that camping trip.
24 pages. For three days.
Yeah, sounds modified to me. And this is for a kid that can't handle homework, and they know this. When they sent home batches of homework of this size in the past, it has led to weeks of meltdowns.
Nice.
When is this f-ing semester coming to an end?!?!?!?
She said that the students participating in the camping trip will have an activity schedule and classroom curriculum as their classwork. So this homework is assigned to students not participating in that camping trip.
24 pages. For three days.
Yeah, sounds modified to me. And this is for a kid that can't handle homework, and they know this. When they sent home batches of homework of this size in the past, it has led to weeks of meltdowns.
Nice.
When is this f-ing semester coming to an end?!?!?!?
Tuesday, May 5, 2009
No Response. Yet. And a Melt.
I didn't hear anything from the school regarding my note. Not yet, anyway.
DS had a meltdown today. :( They called me on his cell phone, and asked if I would try talking to him.
At first he was growling, unable to communicate. But then, slowly, I started getting mono-syllabic responses, which led to partial sentences. When I could get him to talk, I got him to go back into his classroom.
During the entire conversation, he was left alone in the hallway. Probably the best thing they could have done. They just let us be. However, I did find out during that call that his aide was not there AGAIN during this melt. He had no idea where she was. Apparently, she was at school, just not with him. She is often mysteriously absent during his melts. Either that, or she just didn't see what happened. :(
The swine flu has closed some schools in the surrounding area. But since there haven't been any diagnosed cases in our district, our schools remain open. I sure wish they'd close, just as a precautionary measure. (Not because I fear the pandemic the media has hyped up, but because I can't stand dealing with this school.) I'm counting the days until summer vacation. I'm needing it even more than DS, I think. I just can't stand their stress.
DS had a meltdown today. :( They called me on his cell phone, and asked if I would try talking to him.
At first he was growling, unable to communicate. But then, slowly, I started getting mono-syllabic responses, which led to partial sentences. When I could get him to talk, I got him to go back into his classroom.
During the entire conversation, he was left alone in the hallway. Probably the best thing they could have done. They just let us be. However, I did find out during that call that his aide was not there AGAIN during this melt. He had no idea where she was. Apparently, she was at school, just not with him. She is often mysteriously absent during his melts. Either that, or she just didn't see what happened. :(
The swine flu has closed some schools in the surrounding area. But since there haven't been any diagnosed cases in our district, our schools remain open. I sure wish they'd close, just as a precautionary measure. (Not because I fear the pandemic the media has hyped up, but because I can't stand dealing with this school.) I'm counting the days until summer vacation. I'm needing it even more than DS, I think. I just can't stand their stress.
Double Punishment
Ds is not being permitted to attend the field trip this year. This trip is a sort of rite of passage. All kids his age attend. It's a three day camping trip. We had been told from day one that they could not accommodate his autism on the trip. I offered to go with, they refused. I asked that they make arrangements to have an aide of some kind attend with him. To my knowledge, they never made any attempts to do so. I was never informed of any attempts. Each kid had to raise money for the class to attend, or they have to pay their full way. Two days after DS participating in a fundraiser, and about a week before I was to decide whether or not he would go, we received a letter stating that he would not be permitted to attend. He had had too many meltdowns at school. They listed out the dates he had them, with all but one being unknown to us. And for that date, they counted TWICE. Which I feel is very unfair, counting the same meltdown twice, for two things he did during the same meltdown. But I didn't argue it, knowing full well that they would just come up with something else to prevent him from going. They had told us all along they did not want him to go on that trip.
Now I get a letter coming home that says they want to know if I will be sending him to school the three days that all the other kids his age will be gone. (I will not.) They want to send home the homework he will miss during those days!! HUH?? The rest of his class will not be there! Why would they send homework home??
This just sounds like double punishment to me. First he won't be allowed to attend, and then they give him work that none of the other kids have to do?
I had discussed all this with his teacher and the aide a few weeks ago. They told me then, that if he did not attend the field trip, I did not have to send him to school. Other parents in the same boat didn't send their kids in the past. I had been told from the beginning that if he didn't go on the trip, and he went to school, they would put him to work in the younger kids' classrooms. I expressed my concern that this would not be in his best interests. They assured me that it would be fine if I didn't send him. Just call him in absent during those days. No problem. They never mentioned that there would be additional work assigned!! It was never mentioned during the open house, either, when they discussed what would happen if your child was not allowed to go for punitive reasons. They talked about having them work in other classrooms, not doing homework assignments.
DS has a real issue with homework at ANY time, and this would just flip him out. I'm very upset about it.
I really believe that it wouldn't have mattered how good or bad he had been, they would find a reason not to allow him. They tried all year to talk me out of sending him. But they had made SUCH a big deal out of how "this will be the trip of a lifetime" that they made him really want to go.
I found it very interesting that they had not sent home any kind of reports during the school year indicating that he'd had the meltdowns. No disciplinary reports at all. One especially bad one I knew about. They did call me at work. But I was not informed about any others, and no report was sent home. Then all of a sudden he has too many. And they didn't tell me until after he participated in the fundraisers! Why did they insist that he participate in the fundraiser if they knew he was very close to not being allowed to go? (They were all activities requiring social skills - not exactly an easy thing for an autie to do.) I thought that was very low. They could have just told us that he was close to being banned from the trip, and let us decide if he should participate. But no. They waited until he had helped the other kids attend. THEN told us he wouldn't be allowed.
DS already feels that autism is "bad," and he is
"bad" because he has autism. They school has fed into this. He is constantly being told that his behavior is bad, even though they know it is out of his control. His meltdowns are a reaction, not an action. He spirals out of control when his needs are not being met, when he is not being supported properly. Meltdowns are rare at home, and no where near the intensity they are at school. But they refuse to listen when we tell them what works and what doesn't. They continue to restrain him, though we tell them that's the worst thing that they could do. They do not follow the IEP. (The IEP calls for them to empty the classroom if he becomes escalated, but they do not do this. The IEP states that restraint should only be used as a last resort, but they have used it for such stupid things as to drag him out from under a desk and remove him from the classroom - not exactly a last resort or when he or other children are in danger. Etc.) They do things they know will escalate him, and then get angry with him for escalating. They have a chart that is supposed to help de-escalate him, yet they never use it (that's in the IEP too). DS says they haven't used it since the beginning of the school year, though it's in his IEP to show it to him repeatedly through the day.
So lets ignore the things we're supposed to do to support his autism, then stand back and comment on what a bad kid he is when he escalates. Nice.
Now they plan to not only exclude him from a trip they have been promoting all fricking year, they also want to dump homework on him on top of that? WTF? And yes, they KNOW homework is a huge issue with him. They've known that all along. I've fought every year to have limits placed on his homework. Have they listened to that? Nooooo. That's not convenient for them.
And tell me, why wouldn't he feel that autism is bad, when they are constantly telling him what bad behavior he has. And why wouldn't he feel that he is being punished for being autistic? (I feel he is, too.) It all reeks of discrimination. And that he is being punished because that all makes it easier for them.
This has me very upset. I can't believe they would dump homework on him on top of the other punishment. I don't believe it's fair. And I don't believe he can deal with it. I think it's just inviting more meltdowns.
I've written a letter to the teacher. We'll see how that goes over.
Now I get a letter coming home that says they want to know if I will be sending him to school the three days that all the other kids his age will be gone. (I will not.) They want to send home the homework he will miss during those days!! HUH?? The rest of his class will not be there! Why would they send homework home??
This just sounds like double punishment to me. First he won't be allowed to attend, and then they give him work that none of the other kids have to do?
I had discussed all this with his teacher and the aide a few weeks ago. They told me then, that if he did not attend the field trip, I did not have to send him to school. Other parents in the same boat didn't send their kids in the past. I had been told from the beginning that if he didn't go on the trip, and he went to school, they would put him to work in the younger kids' classrooms. I expressed my concern that this would not be in his best interests. They assured me that it would be fine if I didn't send him. Just call him in absent during those days. No problem. They never mentioned that there would be additional work assigned!! It was never mentioned during the open house, either, when they discussed what would happen if your child was not allowed to go for punitive reasons. They talked about having them work in other classrooms, not doing homework assignments.
DS has a real issue with homework at ANY time, and this would just flip him out. I'm very upset about it.
I really believe that it wouldn't have mattered how good or bad he had been, they would find a reason not to allow him. They tried all year to talk me out of sending him. But they had made SUCH a big deal out of how "this will be the trip of a lifetime" that they made him really want to go.
I found it very interesting that they had not sent home any kind of reports during the school year indicating that he'd had the meltdowns. No disciplinary reports at all. One especially bad one I knew about. They did call me at work. But I was not informed about any others, and no report was sent home. Then all of a sudden he has too many. And they didn't tell me until after he participated in the fundraisers! Why did they insist that he participate in the fundraiser if they knew he was very close to not being allowed to go? (They were all activities requiring social skills - not exactly an easy thing for an autie to do.) I thought that was very low. They could have just told us that he was close to being banned from the trip, and let us decide if he should participate. But no. They waited until he had helped the other kids attend. THEN told us he wouldn't be allowed.
DS already feels that autism is "bad," and he is
"bad" because he has autism. They school has fed into this. He is constantly being told that his behavior is bad, even though they know it is out of his control. His meltdowns are a reaction, not an action. He spirals out of control when his needs are not being met, when he is not being supported properly. Meltdowns are rare at home, and no where near the intensity they are at school. But they refuse to listen when we tell them what works and what doesn't. They continue to restrain him, though we tell them that's the worst thing that they could do. They do not follow the IEP. (The IEP calls for them to empty the classroom if he becomes escalated, but they do not do this. The IEP states that restraint should only be used as a last resort, but they have used it for such stupid things as to drag him out from under a desk and remove him from the classroom - not exactly a last resort or when he or other children are in danger. Etc.) They do things they know will escalate him, and then get angry with him for escalating. They have a chart that is supposed to help de-escalate him, yet they never use it (that's in the IEP too). DS says they haven't used it since the beginning of the school year, though it's in his IEP to show it to him repeatedly through the day.
So lets ignore the things we're supposed to do to support his autism, then stand back and comment on what a bad kid he is when he escalates. Nice.
Now they plan to not only exclude him from a trip they have been promoting all fricking year, they also want to dump homework on him on top of that? WTF? And yes, they KNOW homework is a huge issue with him. They've known that all along. I've fought every year to have limits placed on his homework. Have they listened to that? Nooooo. That's not convenient for them.
And tell me, why wouldn't he feel that autism is bad, when they are constantly telling him what bad behavior he has. And why wouldn't he feel that he is being punished for being autistic? (I feel he is, too.) It all reeks of discrimination. And that he is being punished because that all makes it easier for them.
This has me very upset. I can't believe they would dump homework on him on top of the other punishment. I don't believe it's fair. And I don't believe he can deal with it. I think it's just inviting more meltdowns.
I've written a letter to the teacher. We'll see how that goes over.
Thursday, April 30, 2009
Sunday, April 26, 2009
From the Chicago Tribune
www.chicagotribune.com/news/local/chi-police-teen-autismapr25,0,3799143.story
chicagotribune.com
Family claims Chicago police officer beat autistic teenager
Cops decline to discuss incident which they say is under investigation
By Angela Rozas
Tribune reporter
April 25, 2009
Days after Chicago police promoted their expanded training for dealing with people with autism, a teen with the disorder was allegedly struck by an officer who ignored the family's pleas that he was a "special boy."
While Chicago police refused to discuss the incident, relatives of Oscar Guzman detailed the alleged assault and said it was an example of why more officers need to be trained in handling people with special needs.
Guzman, 16, was standing on the sidewalk Wednesday night, taking a break from working in his family's fast-food restaurant in the Pilsen neighborhood. He was watching cars go by when a police cruiser pulled up and two officers began asking him questions, his family says.
Guzman didn't understand the questions, said his sister Nubia, 25, and looked down, away and eventually began walking away. Diagnosed with moderate autism at age 4, he doesn't like confrontation, his sister said.
The officers went after him, his family said, prompting the frightened boy to run into the family restaurant, yelling "I'm a special boy!" as he fled, his sister said.
Despite Guzman's parents yelling to the officers that he was a "special boy" with "special needs," one of the officers struck Guzman in the head with a baton, cutting a gash that would require eight staples, his sister said. The parents witnessed the blow being struck, she said.
On the ground, blood pouring from his head, Guzman, who has the mental capacity of a 5th grader, mumbled again and again, "I'm sorry. I'm sorry. I submit. I submit," his family said.
The Police Department confirmed the incident is under investigation but declined to give the officers' version of what happened. The Independent Police Review Authority said it is investigating and has interviewed relatives of the boy.
The family said it is considering filing a lawsuit against the officers.
The incident occurred the same week the department promoted its award-winning Crisis Intervention Team, a program to train officers to recognize the needs of citizens with mental illness or disabilities. More than 1,100 of the department's 13,500 officers have gone through the 40-hour training since its inception in 2004. The program has won national praise, and just last month, its leader received a Chicago police departmental commendation for the team's work.
To mark Autism Awareness month, the department held its first Autism Safety Awareness night with the Easter Seals on Monday and sent out a six-page training memo to all sworn personnel on autism and police responses. The department also handed out thousands of index cards with tips on how to handle people with autism and distributed buttons for officers to wear.
The department also now trains new recruits in dealing with people with mental disabilities.
While he could not speak to what happened Wednesday, Officer Jerald Nelson, a member of the Crisis Intervention Team who has an 18-year-old son with autism, said the department has been working to better train officers on how to handle people with autism.
"To recognize it, that's number one," Nelson said. Some characteristics of autism -- avoiding eye contact, not responding to questions -- are the same trouble signs that officers are taught to look for in suspects, he said. But officers could make a situation worse if they don't recognize the difference between suspects and those with disabilities. Touching someone with autism lightly can agitate them, for instance, and certain restraints can even endanger them, Nelson said.
One in 160 children has a diagnosis of autism, Nelson said. Statistics show that officers are seven times more likely to have contact with a developmentally disabled person than the general public.
Colleen Shinn, training specialist and manager of the Autism Program service centers for the Easter Seals Metropolitan Chicago, said the department has made strides in developing autism training.
"I think it's great they're being proactive," she said. "There's more work to be done."
But two days after the incident, Guzman's family says not enough has been done. They want the officers involved fired.
"It's upsetting. Shouldn't they all be getting trained for this?" said Nubia Guzman.
She worries her brother is scarred. Guzman, who never had trouble with police, has cried at odd moments since Wednesday night, his family said.
He drew a picture of the incident, displaying the angry face of a towering officer holding what looks like a bat over a cowering figure. On Friday he described the incident in clipped phrases to a reporter.
"Something terrible happened," the teen said. "One chased me. Killing. Killing unnecessary people. Innocent. Beating people with the stick. It's terrible. ... It's going to heal. I'm all right."
His mother, who was always protective of him and had to be persuaded to let him walk to his favorite Chinese restaurant down the street, said she now fears letting the teen out of her sight.
"This time they hit him. The next time, they may kill him," Maria Guzman said.
arozas@tribune.com
Copyright © 2009, Chicago Tribune
chicagotribune.com
Family claims Chicago police officer beat autistic teenager
Cops decline to discuss incident which they say is under investigation
By Angela Rozas
Tribune reporter
April 25, 2009
Days after Chicago police promoted their expanded training for dealing with people with autism, a teen with the disorder was allegedly struck by an officer who ignored the family's pleas that he was a "special boy."
While Chicago police refused to discuss the incident, relatives of Oscar Guzman detailed the alleged assault and said it was an example of why more officers need to be trained in handling people with special needs.
Guzman, 16, was standing on the sidewalk Wednesday night, taking a break from working in his family's fast-food restaurant in the Pilsen neighborhood. He was watching cars go by when a police cruiser pulled up and two officers began asking him questions, his family says.
Guzman didn't understand the questions, said his sister Nubia, 25, and looked down, away and eventually began walking away. Diagnosed with moderate autism at age 4, he doesn't like confrontation, his sister said.
The officers went after him, his family said, prompting the frightened boy to run into the family restaurant, yelling "I'm a special boy!" as he fled, his sister said.
Despite Guzman's parents yelling to the officers that he was a "special boy" with "special needs," one of the officers struck Guzman in the head with a baton, cutting a gash that would require eight staples, his sister said. The parents witnessed the blow being struck, she said.
On the ground, blood pouring from his head, Guzman, who has the mental capacity of a 5th grader, mumbled again and again, "I'm sorry. I'm sorry. I submit. I submit," his family said.
The Police Department confirmed the incident is under investigation but declined to give the officers' version of what happened. The Independent Police Review Authority said it is investigating and has interviewed relatives of the boy.
The family said it is considering filing a lawsuit against the officers.
The incident occurred the same week the department promoted its award-winning Crisis Intervention Team, a program to train officers to recognize the needs of citizens with mental illness or disabilities. More than 1,100 of the department's 13,500 officers have gone through the 40-hour training since its inception in 2004. The program has won national praise, and just last month, its leader received a Chicago police departmental commendation for the team's work.
To mark Autism Awareness month, the department held its first Autism Safety Awareness night with the Easter Seals on Monday and sent out a six-page training memo to all sworn personnel on autism and police responses. The department also handed out thousands of index cards with tips on how to handle people with autism and distributed buttons for officers to wear.
The department also now trains new recruits in dealing with people with mental disabilities.
While he could not speak to what happened Wednesday, Officer Jerald Nelson, a member of the Crisis Intervention Team who has an 18-year-old son with autism, said the department has been working to better train officers on how to handle people with autism.
"To recognize it, that's number one," Nelson said. Some characteristics of autism -- avoiding eye contact, not responding to questions -- are the same trouble signs that officers are taught to look for in suspects, he said. But officers could make a situation worse if they don't recognize the difference between suspects and those with disabilities. Touching someone with autism lightly can agitate them, for instance, and certain restraints can even endanger them, Nelson said.
One in 160 children has a diagnosis of autism, Nelson said. Statistics show that officers are seven times more likely to have contact with a developmentally disabled person than the general public.
Colleen Shinn, training specialist and manager of the Autism Program service centers for the Easter Seals Metropolitan Chicago, said the department has made strides in developing autism training.
"I think it's great they're being proactive," she said. "There's more work to be done."
But two days after the incident, Guzman's family says not enough has been done. They want the officers involved fired.
"It's upsetting. Shouldn't they all be getting trained for this?" said Nubia Guzman.
She worries her brother is scarred. Guzman, who never had trouble with police, has cried at odd moments since Wednesday night, his family said.
He drew a picture of the incident, displaying the angry face of a towering officer holding what looks like a bat over a cowering figure. On Friday he described the incident in clipped phrases to a reporter.
"Something terrible happened," the teen said. "One chased me. Killing. Killing unnecessary people. Innocent. Beating people with the stick. It's terrible. ... It's going to heal. I'm all right."
His mother, who was always protective of him and had to be persuaded to let him walk to his favorite Chinese restaurant down the street, said she now fears letting the teen out of her sight.
"This time they hit him. The next time, they may kill him," Maria Guzman said.
arozas@tribune.com
Copyright © 2009, Chicago Tribune
Tuesday, March 31, 2009
Monday, March 30, 2009
Linking
Oh my. I just came from the "Linking Meeting," where the process begins to link DS from the school he is leaving to the school he will be attending next year. I'm overwhelmed. I can only imagine how that little guy feels.
The school is HUGE. I was surprised at how big it is. And when we walked in, we entered next to the boys locker room, where these gigantic kids (who resembled high schoolers more than middle schoolers) towered over me, and were noisy and full of commotion. Just as kids should be. But not how my little aspie is. DS just froze. I slid an arm around him and just scooped him right though the doors and on his way down the hallway, and he was fine. I was thinking holy Toledo, those kids are enormous. And loud. And how the hell is he going to cope with that??? But then again, I'm on high over-protection mode. Once DS got past the surprise of the big loud kids, he seemed fine. Mom on the other hand is shaking in her boots.
The meeting was up a ton of stairs, and my knees were killing me by the end. Let's hope I don't have to spend much time here.
The meeting went very well, for the most part. The people seemed very kind, very eager to help, and full of information. I was on info overload very quickly. DS was on every kind of overload, but he did reasonably well. Just very fidgety and nervous, and then went into a form of mild shut down, where he laid his head on the desk. It was okay, we didn't need him to be completely participating. And DH took him for a walk which helped tremendously. DS spoke for himself most of the time. I was asked how to avoid melts and how to de-escalate a melt (um, don't touch him...!), but they made it clear they had been completely and thoroughly filled in by the old school. Dang. Well, no surprise there. I knew that was coming. I was just having some wishful thinking that they could get to know the little squirt before they passed judgment on him, but that wasn't very realistic.
I was disheartened that they brought up the police in the very first meeting, and right in front of my son. Not a good sign. Not entirely unexpected, but I thought this would come later, not during the first hour. Sheesh. But I suppose it had to come up at some point.
But all in all, DH and I were very pleased with the meeting, and got a good vibe from everyone at the new school. I met one of DS's future teachers, and I really got a kick out of him! YOUNG. Holy cow, was he young. But he was quirky and funny and looked like a PERFECT teacher for my son, if first impressions are any indication. (Mine are not always on target.) I liked him right off the bat. This would be the math teacher. Even better, because DS loves math.
There was talk of a peer taking DS under his wing, and a student giving him a tour sometime very soon. And lots of kids that will be protective of him.
OH! And the teachers are talking of...WILLINGLY...VOLUNTARILY...taking a seminar on autism!!! Woohoo!! That could only help. There is one other autie there. I have no idea what they're like, or if they are high functioning or not. It will be interesting to find out. Wouldn't it be cool if someone actually had a bit of understanding about autism here? One can hope, right?
Overall, DH and I got the impression that this group was much more willing to work with us and help us. And they seemed very upbeat around DS (except for that one police bit, but that was brief, and kind of went over his head). DS is excited to hear there is a swimming pool. (Yikes, must teach him to swim NOW.) I hadn't expected that. Not in middle school.
Sigh. I'm a wreck. A complete nervous wreck. Nothing really went wrong, and the vast majority seemed to go right. But I've been warned over and over about middle school being rough on spectrum kids. And my mama bear instincts are on kicking up a notch...or ten.
DH thinks all will be fine. He'll do fine. The group seems helpful and friendly, and talk about being proactive, and preventing melts. All good.
The old school has left these scars on my optimism, however. And I struggle with all of this.
But it will be a new year, a new building, a new staff, and a whole new beginning. Right? Every reason to expect the best outcome, right? And DS has come SO far, in being more independent, in being more outgoing and social, in being more responsible. All good, right?
I'll keep my fingers crossed. And I'll keep trying to shove all this fear down, and just wait and see what happens.
Oh yeah. When we got back from the meeting, I got a letter from the (current, old) school. It said that DS has had four instances at the school, and if he has five, he will not be permitted to attend the school field trip. It's a camping trip, away for the weekend. Crap.
Interesting to note, we were not given formal write ups about these instances. And two of them were on the same day, and were actually from the same meltdown! Not very fair if you ask me.
We knew this was coming. They told us on the first day of school that they weren't going to be able to deal with his autism on this trip. And I knew right then and there that they would make absolutely sure he couldn't attend. Also, they have made no attempts to include him, no attempts to make arrangements. But they sure as hell made sure he did his part in the fundraising efforts BEFORE they sent that letter to me, informing me that he wouldn't be permitted to go if there is just one more incident.
Charming. And really emphasized the contrast between how the new school is trying to work with us, but how the old school isn't. I'm so glad to be leaving that place. I hope I never have to set foot on those school grounds again, or see those teachers again. A few of the therapists and such were very good, and I liked them. The Speech Therapist, for one. She was a gem. A real saving grace. I thought the world of her. I'll miss her. And the Social Worker. A few others, too. But there are some that bring up such contempt and pain in me. How can they treat a little boy that way? There are staff member that I truly wonder about, if they even have a conscience?
So out of one school and on to the next. Will it be more of the same? Or will we finally find someone who wants to help a little boy discover the joy of learning, while helping him get past his challenges? I know it can be done. I know it can be done easily. I know because I've done it myself. Now will they embrace that? Or will they try to fit him into the neurotypical box that he won't fit into?
The school is HUGE. I was surprised at how big it is. And when we walked in, we entered next to the boys locker room, where these gigantic kids (who resembled high schoolers more than middle schoolers) towered over me, and were noisy and full of commotion. Just as kids should be. But not how my little aspie is. DS just froze. I slid an arm around him and just scooped him right though the doors and on his way down the hallway, and he was fine. I was thinking holy Toledo, those kids are enormous. And loud. And how the hell is he going to cope with that??? But then again, I'm on high over-protection mode. Once DS got past the surprise of the big loud kids, he seemed fine. Mom on the other hand is shaking in her boots.
The meeting was up a ton of stairs, and my knees were killing me by the end. Let's hope I don't have to spend much time here.
The meeting went very well, for the most part. The people seemed very kind, very eager to help, and full of information. I was on info overload very quickly. DS was on every kind of overload, but he did reasonably well. Just very fidgety and nervous, and then went into a form of mild shut down, where he laid his head on the desk. It was okay, we didn't need him to be completely participating. And DH took him for a walk which helped tremendously. DS spoke for himself most of the time. I was asked how to avoid melts and how to de-escalate a melt (um, don't touch him...!), but they made it clear they had been completely and thoroughly filled in by the old school. Dang. Well, no surprise there. I knew that was coming. I was just having some wishful thinking that they could get to know the little squirt before they passed judgment on him, but that wasn't very realistic.
I was disheartened that they brought up the police in the very first meeting, and right in front of my son. Not a good sign. Not entirely unexpected, but I thought this would come later, not during the first hour. Sheesh. But I suppose it had to come up at some point.
But all in all, DH and I were very pleased with the meeting, and got a good vibe from everyone at the new school. I met one of DS's future teachers, and I really got a kick out of him! YOUNG. Holy cow, was he young. But he was quirky and funny and looked like a PERFECT teacher for my son, if first impressions are any indication. (Mine are not always on target.) I liked him right off the bat. This would be the math teacher. Even better, because DS loves math.
There was talk of a peer taking DS under his wing, and a student giving him a tour sometime very soon. And lots of kids that will be protective of him.
OH! And the teachers are talking of...WILLINGLY...VOLUNTARILY...taking a seminar on autism!!! Woohoo!! That could only help. There is one other autie there. I have no idea what they're like, or if they are high functioning or not. It will be interesting to find out. Wouldn't it be cool if someone actually had a bit of understanding about autism here? One can hope, right?
Overall, DH and I got the impression that this group was much more willing to work with us and help us. And they seemed very upbeat around DS (except for that one police bit, but that was brief, and kind of went over his head). DS is excited to hear there is a swimming pool. (Yikes, must teach him to swim NOW.) I hadn't expected that. Not in middle school.
Sigh. I'm a wreck. A complete nervous wreck. Nothing really went wrong, and the vast majority seemed to go right. But I've been warned over and over about middle school being rough on spectrum kids. And my mama bear instincts are on kicking up a notch...or ten.
DH thinks all will be fine. He'll do fine. The group seems helpful and friendly, and talk about being proactive, and preventing melts. All good.
The old school has left these scars on my optimism, however. And I struggle with all of this.
But it will be a new year, a new building, a new staff, and a whole new beginning. Right? Every reason to expect the best outcome, right? And DS has come SO far, in being more independent, in being more outgoing and social, in being more responsible. All good, right?
I'll keep my fingers crossed. And I'll keep trying to shove all this fear down, and just wait and see what happens.
Oh yeah. When we got back from the meeting, I got a letter from the (current, old) school. It said that DS has had four instances at the school, and if he has five, he will not be permitted to attend the school field trip. It's a camping trip, away for the weekend. Crap.
Interesting to note, we were not given formal write ups about these instances. And two of them were on the same day, and were actually from the same meltdown! Not very fair if you ask me.
We knew this was coming. They told us on the first day of school that they weren't going to be able to deal with his autism on this trip. And I knew right then and there that they would make absolutely sure he couldn't attend. Also, they have made no attempts to include him, no attempts to make arrangements. But they sure as hell made sure he did his part in the fundraising efforts BEFORE they sent that letter to me, informing me that he wouldn't be permitted to go if there is just one more incident.
Charming. And really emphasized the contrast between how the new school is trying to work with us, but how the old school isn't. I'm so glad to be leaving that place. I hope I never have to set foot on those school grounds again, or see those teachers again. A few of the therapists and such were very good, and I liked them. The Speech Therapist, for one. She was a gem. A real saving grace. I thought the world of her. I'll miss her. And the Social Worker. A few others, too. But there are some that bring up such contempt and pain in me. How can they treat a little boy that way? There are staff member that I truly wonder about, if they even have a conscience?
So out of one school and on to the next. Will it be more of the same? Or will we finally find someone who wants to help a little boy discover the joy of learning, while helping him get past his challenges? I know it can be done. I know it can be done easily. I know because I've done it myself. Now will they embrace that? Or will they try to fit him into the neurotypical box that he won't fit into?
Sunday, March 22, 2009
Friday, March 20, 2009
Tuesday, March 17, 2009
Sunday, March 15, 2009
Monday, March 9, 2009
Monday, March 2, 2009
Friday, February 27, 2009
Sunday, February 22, 2009
Things are piling up
It's been a while since I posted. It's been a difficult month.
Ds had a meltdown at school on Wednesday. A bad one. He threw things, and they said he got a pair of scissors within a few inches of a friend's face! (Ds denies this vehemently.) They said he threw a water bottle down, he threw a snack at his teacher, he threw a pencil at his friend (he ducked), and another at his friend's chair. (Ds denies this as well.)
I was at a loss, listening to all this. This was in a phone call, during my lunch hour, on Wednesday. They also informed me that he had a melt down the day before, though not quite so bad. (No one called me about that one.) He hasn't been having any problems at home at all. I had an inkling that there had been that meltdown on Tuesday, though I didn't know it had been bad, only that he had gotten upset. He mentioned having a headache, and that clued me in to asking more questions, and I knew he got upset about something, but couldn't get details out of him. He said he didn't remember. He looked so confused, that I didn't doubt his lack of memory. He did suddenly burst into tears, claiming that "Nothing has gone right in February." Huh?? He'd had a great month, from what I knew of. He was excited about being able to come home right after school, since Dh & I were working shorter hours. And Dh had bought him a new fishing pole, a real grown up fishing pole, just like Dad's, and they were really enjoying practice casting across my family room. He was happy all the time. Where did this come from, that February was so awful??? He also mentioned that his friend wouldn't play football with him, I think it was at recess. My first suspicion was that perhaps Ds had gotten upset while playing football and this caused his friend to not want to play with him anymore. Ds said no. He didn't understand why. Hm. There could be more to that story, I suspected.
Then this all happened the next day. I started to get the idea that his unhappiness with February was school related. The social worker said he'd had a meltdown, and wondered if anything was going on at home. No, we weren't aware of any problems, though the night before he had indicated that he was upset about not playing football, and that he was strangely upset about things going wrong in February.
The teacher gave me the rundown about him throwing pencils and scissors. Sheesh - where was this all coming from?? She indicated that he'd been moody, short tempered, aggressive, for a couple weeks! Dh and I hadn't seen this at all. He was pretty happy at home.
Then his principal got on the phone and asked if the meds had changed. No, nothing different. She expressed concern that there needed to be consequences for his actions. None of this would be tolerated in Junior High when he gets there, and if we don't start exposing him to some of the consequences for his actions now, he would be in culture shock when he arrived at Jr. High. She also told me that he hadn't been playing with his friends at all. That's a real regression. She was unaware of anything related to football, and said that the kids weren't really playing football right now because of the time of year and the weather. She would keep an eye out for that though, and inform the rest of the staff that this seems to be one of the keys to his latest aggression. She shocked me by telling me that DS wasn't getting shunned by the other students, to her knowledge, but she did see that he was completely closing everyone else off at recess and lunch. He didn't socialize at all. This was his doing, not the other kids. That worried me, since this is a bad regression, and a red flag went up that it was signaling something was badly amiss.
I also told her that I keep hearing about this particular boy in Ds' class that continually harasses Ds, and she wasn't aware of it, but said she wasn't surprised that his name would come up. She said he does get into similar trouble in class, and this fits. I suggested separating the two. I said I didn't know if this kid was truly pestering Ds as described (I hear about him DAILY), that Ds could be over-reacting if he's over stimulated or frustrated and just not able to tolerate this kid, but I said he seemed to perceive this kid as a real problem, and it might not hurt to just move him to a different table and put some space between them. The principal said that if DS' perception IS his reality, so if he thinks this is a problem, it is a problem. She agreed that moving them apart might be in order. (Thank goodness. I don't know if the kid is really doing anything wrong, or if Ds just has a personality clash with him or something, but I'll be very glad that they'll at least consider putting space between them. One less frustration could be HUGE.) The principal wants to call in the Autism Team. Oh good. That sounds like it might really help.
None of this stuff made sense to me. Ds was doing well at home, and was making progress with independence and control. He was always cheerful, and was learning to make small talk when visiting MIL in the nursing home. (He only goes maybe once a week, maybe less. Always on a weekend, when it doesn't cut into his rituals.) How is it that at school he was short tempered, aggressive, uncooperative, and explosive? He was also regressing socially there. Something is going on there. He's overwhelmed by something. This just doesn't fit with what we're seeing at home.
So that was bad enough. I had a long talk with Ds, and he was going to try to have a good day on Thursday. He seemed very subdued. I had questioned him about why all this was going on, and he didn't remember any of the really bad stuff at all. Denied up and down that it happened. He said he threw some stuff down, but nothing AT anybody. Even when I told him several adults were telling me the same story, he was completely baffled, and said it didn't happen. I believe he doesn't remember this. He was just too confused.
Thursday was a good day. A really good day! His aide even called me to tell me just how good it was. Thank Heavens. I was very sick with a cold or flu bug, and really wasn't up for more bad news, so this really cheered me.
Friday was not good. I had been so sick, I came home from work Thursday morning, and by Friday I was much worse. The fever climbed, and my throat was killing me. Ds walked in from school, and I could tell from his face that he'd been crying. Uh oh. He fed the dog and went into the bathroom, and then the principal called. This was not good news at all. Ds had gotten upset in the middle of the spelling test. Huh?? He knew those words backwards and forwards. For the past couple days, he hadn't missed a single word in practice. Why would he flip out during a spelling test??? He's good at this! He loves these tests! What would upset him there? The principal had no explanation. However, DS refused to leave the room when he melted, and they had to come restrain him and remove him. They took him to the principal's office, but said they didn't hold him there, just let him calm down. He was crying, but not exploding in the office. Shit. Restraint is only going to worsen the problems. He's going to lose all trust, if he had any left at all.
We were scheduled to be at the school for a fundraiser Friday night. I was sick as a dog, and so was Dh. We both stayed home from work, both of us sleeping all day. The principal knew we were both sick, and wanted to know if we intended on just dropping off Ds at school that night? Because they would understand if we wanted to keep him home. Sheesh. They were afraid I'd just drop him off, after a meltdown, and leave him and them to fend for themselves?? I assured her that if Ds was up to going, I would be with him. And if he wasn't up to going, I would keep him home. She seemed relieved to hear that. She said she thought he needed his mom. Yeah, no kidding. After being grabbed and dragged out of the room, he needs his mom all right. Thank God they INFORMED me of this restraint.
Ds was still very upset at home. He complained that his arms stung. Poor thing. I knew right off that he wasn't going anywhere that night, and I told him so. He was glad. He's been nothing like the child that school describes. He's been helping me, and even cooked dinner Thursday night. He was very proud of it, too. He thought it was the best mostaccioli he'd ever eaten. I thought it was pretty darned good myself, and the fact that I didn't have to cook it made it taste even better, lol. He also helped with cleaning off the table and setting the table and stuff like that. Saturday, he even cleared all his stuff out of the family room, WITHOUT BEING ASKED!! Wooohoo!!
Again, all this stuff at school seems like they are talking about a different child. What is it about that place, or the environment, or the routine, or whatever, that sets him off? Is it the noise level? The activity? The stress? Is it just that school? Or would it be any school?
When I questioned Ds about the spelling meltdown, he couldn't explain it. He said that he was confused, over and over again, because he didn't know where to go. He had come back from speech therapy, and the class was taking their spelling test. This is not unusual, and he's dealt with that before. They had to take him somewhere else for the test. He expressed concern, because his aide was suddenly not there. He couldn't tell me where she went, and he got all flustered. He said the paper they gave him to write on had no lines! And this seemed like a big deal to him. But he didn't know where to go. No one told him. He was confused, and worried. Then with the unlined paper on top of it, one thing piled up on top of another, and he didn't know what happened. He couldn't remember much of it. He didn't know what upset him so much. (Was that it? A missing aide, unsure where to go or what to do, different routine, different paper?) He was getting too agitated to question any further in depth. I guess this is as close to an answer as I'm going to get. I don't think it was any one thing that set him off. Just a bunch of little things that added up to be the last straw on the camel's back. Kaboom.
And while all this is going on, MIL is now being cut off financially from Medicare and the insurance company. So from now on, no insurance, no financial assistance. It costs approximately $200 a day to keep her in the nursing home as she recovers. They can't pay that for very long, not long enough for her to be able to walk or care for herself. She's still very weak. She can't walk. Mostly bed ridden or at least wheelchair bound. She has only stood for a matter of seconds, and took one step, once. The feeding tube has been turned down, and now off, to see if she can maintain eating on her own. It was turned off last week. So that's it.
FIL wants to bring her home. HUH??? How he expects to be able to care for her, when she can't even get herself out of bed, is beyond me. He wants to get a nurse to stop in twice a day to help. For a couple hours. That won't be enough. He can't lift her. He can't care for her on his own. What is he thinking? Dh took him to the Center on Aging, and they told him he has to apply for Medicaid. He refuses, because he doesn't want to lose his house. We've tried to discuss it with him, but he thinks it's out of the question. The office told him he had no choice. That ticked him off. Now he's determined to just get her home. Period. We've checked into other facilities, (one in particular is an assisted living facility), and gotten him the forms to fill out, but he won't look at it. Our hands are tied at this point. We can't pay for this ourselves. We can't hire him a nurse. We just don't have the money. We can't take them in, our house can't accommodate a wheelchair. And it's just not big enough. We've talked about moving in with them, but we'd have to sell our house to do it, and there's no freaking way we can sell a house in this economy. There are for sale signs all over this neighborhood, and have been for a year. Nobody is selling. How do we help them? At this point, all we can do is try to help them help themselves. Go for the medicaid. Get into a facility that can help you medically and still help you maintain your independence. So what if they take the house? They won't take it until you're gone. You won't be out on the street.
Sigh. It's like talking to a statue.
So we're juggling a lot, and so much is out of our control. It's frustrating. But hopefully it will get easier soon.
Ds had a meltdown at school on Wednesday. A bad one. He threw things, and they said he got a pair of scissors within a few inches of a friend's face! (Ds denies this vehemently.) They said he threw a water bottle down, he threw a snack at his teacher, he threw a pencil at his friend (he ducked), and another at his friend's chair. (Ds denies this as well.)
I was at a loss, listening to all this. This was in a phone call, during my lunch hour, on Wednesday. They also informed me that he had a melt down the day before, though not quite so bad. (No one called me about that one.) He hasn't been having any problems at home at all. I had an inkling that there had been that meltdown on Tuesday, though I didn't know it had been bad, only that he had gotten upset. He mentioned having a headache, and that clued me in to asking more questions, and I knew he got upset about something, but couldn't get details out of him. He said he didn't remember. He looked so confused, that I didn't doubt his lack of memory. He did suddenly burst into tears, claiming that "Nothing has gone right in February." Huh?? He'd had a great month, from what I knew of. He was excited about being able to come home right after school, since Dh & I were working shorter hours. And Dh had bought him a new fishing pole, a real grown up fishing pole, just like Dad's, and they were really enjoying practice casting across my family room. He was happy all the time. Where did this come from, that February was so awful??? He also mentioned that his friend wouldn't play football with him, I think it was at recess. My first suspicion was that perhaps Ds had gotten upset while playing football and this caused his friend to not want to play with him anymore. Ds said no. He didn't understand why. Hm. There could be more to that story, I suspected.
Then this all happened the next day. I started to get the idea that his unhappiness with February was school related. The social worker said he'd had a meltdown, and wondered if anything was going on at home. No, we weren't aware of any problems, though the night before he had indicated that he was upset about not playing football, and that he was strangely upset about things going wrong in February.
The teacher gave me the rundown about him throwing pencils and scissors. Sheesh - where was this all coming from?? She indicated that he'd been moody, short tempered, aggressive, for a couple weeks! Dh and I hadn't seen this at all. He was pretty happy at home.
Then his principal got on the phone and asked if the meds had changed. No, nothing different. She expressed concern that there needed to be consequences for his actions. None of this would be tolerated in Junior High when he gets there, and if we don't start exposing him to some of the consequences for his actions now, he would be in culture shock when he arrived at Jr. High. She also told me that he hadn't been playing with his friends at all. That's a real regression. She was unaware of anything related to football, and said that the kids weren't really playing football right now because of the time of year and the weather. She would keep an eye out for that though, and inform the rest of the staff that this seems to be one of the keys to his latest aggression. She shocked me by telling me that DS wasn't getting shunned by the other students, to her knowledge, but she did see that he was completely closing everyone else off at recess and lunch. He didn't socialize at all. This was his doing, not the other kids. That worried me, since this is a bad regression, and a red flag went up that it was signaling something was badly amiss.
I also told her that I keep hearing about this particular boy in Ds' class that continually harasses Ds, and she wasn't aware of it, but said she wasn't surprised that his name would come up. She said he does get into similar trouble in class, and this fits. I suggested separating the two. I said I didn't know if this kid was truly pestering Ds as described (I hear about him DAILY), that Ds could be over-reacting if he's over stimulated or frustrated and just not able to tolerate this kid, but I said he seemed to perceive this kid as a real problem, and it might not hurt to just move him to a different table and put some space between them. The principal said that if DS' perception IS his reality, so if he thinks this is a problem, it is a problem. She agreed that moving them apart might be in order. (Thank goodness. I don't know if the kid is really doing anything wrong, or if Ds just has a personality clash with him or something, but I'll be very glad that they'll at least consider putting space between them. One less frustration could be HUGE.) The principal wants to call in the Autism Team. Oh good. That sounds like it might really help.
None of this stuff made sense to me. Ds was doing well at home, and was making progress with independence and control. He was always cheerful, and was learning to make small talk when visiting MIL in the nursing home. (He only goes maybe once a week, maybe less. Always on a weekend, when it doesn't cut into his rituals.) How is it that at school he was short tempered, aggressive, uncooperative, and explosive? He was also regressing socially there. Something is going on there. He's overwhelmed by something. This just doesn't fit with what we're seeing at home.
So that was bad enough. I had a long talk with Ds, and he was going to try to have a good day on Thursday. He seemed very subdued. I had questioned him about why all this was going on, and he didn't remember any of the really bad stuff at all. Denied up and down that it happened. He said he threw some stuff down, but nothing AT anybody. Even when I told him several adults were telling me the same story, he was completely baffled, and said it didn't happen. I believe he doesn't remember this. He was just too confused.
Thursday was a good day. A really good day! His aide even called me to tell me just how good it was. Thank Heavens. I was very sick with a cold or flu bug, and really wasn't up for more bad news, so this really cheered me.
Friday was not good. I had been so sick, I came home from work Thursday morning, and by Friday I was much worse. The fever climbed, and my throat was killing me. Ds walked in from school, and I could tell from his face that he'd been crying. Uh oh. He fed the dog and went into the bathroom, and then the principal called. This was not good news at all. Ds had gotten upset in the middle of the spelling test. Huh?? He knew those words backwards and forwards. For the past couple days, he hadn't missed a single word in practice. Why would he flip out during a spelling test??? He's good at this! He loves these tests! What would upset him there? The principal had no explanation. However, DS refused to leave the room when he melted, and they had to come restrain him and remove him. They took him to the principal's office, but said they didn't hold him there, just let him calm down. He was crying, but not exploding in the office. Shit. Restraint is only going to worsen the problems. He's going to lose all trust, if he had any left at all.
We were scheduled to be at the school for a fundraiser Friday night. I was sick as a dog, and so was Dh. We both stayed home from work, both of us sleeping all day. The principal knew we were both sick, and wanted to know if we intended on just dropping off Ds at school that night? Because they would understand if we wanted to keep him home. Sheesh. They were afraid I'd just drop him off, after a meltdown, and leave him and them to fend for themselves?? I assured her that if Ds was up to going, I would be with him. And if he wasn't up to going, I would keep him home. She seemed relieved to hear that. She said she thought he needed his mom. Yeah, no kidding. After being grabbed and dragged out of the room, he needs his mom all right. Thank God they INFORMED me of this restraint.
Ds was still very upset at home. He complained that his arms stung. Poor thing. I knew right off that he wasn't going anywhere that night, and I told him so. He was glad. He's been nothing like the child that school describes. He's been helping me, and even cooked dinner Thursday night. He was very proud of it, too. He thought it was the best mostaccioli he'd ever eaten. I thought it was pretty darned good myself, and the fact that I didn't have to cook it made it taste even better, lol. He also helped with cleaning off the table and setting the table and stuff like that. Saturday, he even cleared all his stuff out of the family room, WITHOUT BEING ASKED!! Wooohoo!!
Again, all this stuff at school seems like they are talking about a different child. What is it about that place, or the environment, or the routine, or whatever, that sets him off? Is it the noise level? The activity? The stress? Is it just that school? Or would it be any school?
When I questioned Ds about the spelling meltdown, he couldn't explain it. He said that he was confused, over and over again, because he didn't know where to go. He had come back from speech therapy, and the class was taking their spelling test. This is not unusual, and he's dealt with that before. They had to take him somewhere else for the test. He expressed concern, because his aide was suddenly not there. He couldn't tell me where she went, and he got all flustered. He said the paper they gave him to write on had no lines! And this seemed like a big deal to him. But he didn't know where to go. No one told him. He was confused, and worried. Then with the unlined paper on top of it, one thing piled up on top of another, and he didn't know what happened. He couldn't remember much of it. He didn't know what upset him so much. (Was that it? A missing aide, unsure where to go or what to do, different routine, different paper?) He was getting too agitated to question any further in depth. I guess this is as close to an answer as I'm going to get. I don't think it was any one thing that set him off. Just a bunch of little things that added up to be the last straw on the camel's back. Kaboom.
And while all this is going on, MIL is now being cut off financially from Medicare and the insurance company. So from now on, no insurance, no financial assistance. It costs approximately $200 a day to keep her in the nursing home as she recovers. They can't pay that for very long, not long enough for her to be able to walk or care for herself. She's still very weak. She can't walk. Mostly bed ridden or at least wheelchair bound. She has only stood for a matter of seconds, and took one step, once. The feeding tube has been turned down, and now off, to see if she can maintain eating on her own. It was turned off last week. So that's it.
FIL wants to bring her home. HUH??? How he expects to be able to care for her, when she can't even get herself out of bed, is beyond me. He wants to get a nurse to stop in twice a day to help. For a couple hours. That won't be enough. He can't lift her. He can't care for her on his own. What is he thinking? Dh took him to the Center on Aging, and they told him he has to apply for Medicaid. He refuses, because he doesn't want to lose his house. We've tried to discuss it with him, but he thinks it's out of the question. The office told him he had no choice. That ticked him off. Now he's determined to just get her home. Period. We've checked into other facilities, (one in particular is an assisted living facility), and gotten him the forms to fill out, but he won't look at it. Our hands are tied at this point. We can't pay for this ourselves. We can't hire him a nurse. We just don't have the money. We can't take them in, our house can't accommodate a wheelchair. And it's just not big enough. We've talked about moving in with them, but we'd have to sell our house to do it, and there's no freaking way we can sell a house in this economy. There are for sale signs all over this neighborhood, and have been for a year. Nobody is selling. How do we help them? At this point, all we can do is try to help them help themselves. Go for the medicaid. Get into a facility that can help you medically and still help you maintain your independence. So what if they take the house? They won't take it until you're gone. You won't be out on the street.
Sigh. It's like talking to a statue.
So we're juggling a lot, and so much is out of our control. It's frustrating. But hopefully it will get easier soon.
Friday, February 13, 2009
Monday, January 19, 2009
Uber Newbie
http://ping.fm/p/98Bwf - I'm trying out a new hobby. I'm playing around with photo editing software, to learn how to create siggys. I have been dying to learn this, and now I've joined some tutorial groups in hopes of figuring this stuff out.
My first tutorial was to learn how to make a very basic siggy. It was fun to play with. Now, I was just playing with the stuff built into the program - nothing fancy. But it was fun! And I came up with something that I didn't think was hideous.
The software is already getting a little less scary. Maybe I'll be able to get this figured out one of these days. But for now, baby steps.
Friday, January 16, 2009
Thursday, January 15, 2009
Wednesday, January 14, 2009
Tuesday, January 13, 2009
Monday, January 12, 2009
Saturday, January 10, 2009
Wednesday, January 7, 2009
Untrustworthy
I'm upset. Ds came home all frustrated and unhappy. He said he was taken to the nurse's office this morning, and accused of lying. He said his para told him he was "untrustworthy."
What the heck?! He was all confused, and didn't understand what it was all about. I've gotten bits and pieces of the story, but I don't understand the whole thing myself. I know part of it was that he was supposed to call me from the nurse's office yesterday. Which he did. And the nurse called me too. But apparently they are saying he didn't call. (I have voicemail and missed calls on my cell to prove that he did.)
I don't know how this relates to his hurt foot? The nurse assured me it wasn't that bad. Some Tylenol, ice pack, raise it up, and time. He seemed a bit better today, but I gave him some Ibuprofin this morning. It should have lasted all day. He was walking on it better today. So what's going on with the school?
I'll tell you, it's making me see red that they called him "untrustworthy!" Huh??? The staff that lies to me and hangs up on me and threatens me and withholds information from me, accuses my son of being untrustworthy??? If I trusted every word that EVER came out of my son's mouth, I'd be far better off than if I trusted one sentence that came out of their mouths!!
Grrrrrr!
And why the hell didn't anyone call me if there was something going on, and if they had questions about whether or not he called me?
This boy is incredibly confused about what happened. He is NOT lying about this. If he was supposed to do something, and didn't, then he didn't understand. He is baffled. And so am I.
The end of the school year can't come fast enough for me.
What the heck?! He was all confused, and didn't understand what it was all about. I've gotten bits and pieces of the story, but I don't understand the whole thing myself. I know part of it was that he was supposed to call me from the nurse's office yesterday. Which he did. And the nurse called me too. But apparently they are saying he didn't call. (I have voicemail and missed calls on my cell to prove that he did.)
I don't know how this relates to his hurt foot? The nurse assured me it wasn't that bad. Some Tylenol, ice pack, raise it up, and time. He seemed a bit better today, but I gave him some Ibuprofin this morning. It should have lasted all day. He was walking on it better today. So what's going on with the school?
I'll tell you, it's making me see red that they called him "untrustworthy!" Huh??? The staff that lies to me and hangs up on me and threatens me and withholds information from me, accuses my son of being untrustworthy??? If I trusted every word that EVER came out of my son's mouth, I'd be far better off than if I trusted one sentence that came out of their mouths!!
Grrrrrr!
And why the hell didn't anyone call me if there was something going on, and if they had questions about whether or not he called me?
This boy is incredibly confused about what happened. He is NOT lying about this. If he was supposed to do something, and didn't, then he didn't understand. He is baffled. And so am I.
The end of the school year can't come fast enough for me.
Tuesday, January 6, 2009
Back to that School
The Christmas break has come to an end, and with enormous trepidation, I watched him head back to class.
It would be nice to be like other parents once again, and look forward to my child's return to school. That is not our lot. For me, school has become a fear, a danger.
The phone rang from the school today. Of course, my heart fell into my shoes. What now? Restraint? Seclusion? Humiliation? Injury?
This time it was a simple childhood booboo. Nothing to panic over. Ice pack and comforting words and back to class. Whew. The other kind of calls are far too plentiful. I can't take much more of those.
I wonder how these people on the school staff can bring themselves to inflict such trauma on children, and on their families. Where is their conscious? Where is that still small voice within that whispers, "This is wrong. So very wrong."?
They must be at least aware that what they are doing is wrong, because they hide it from me as best they can. They have even taken to hanging up the phone on me, so they can restrain him without my knowledge. They don't file reports about restraining him, so they have no one to answer for when they violate the IEP. Nothing written, no proof. Twice within one week, too.
I'm sick to my stomach that he's back there. Summer can't come soon enough for this mom.
It would be nice to be like other parents once again, and look forward to my child's return to school. That is not our lot. For me, school has become a fear, a danger.
The phone rang from the school today. Of course, my heart fell into my shoes. What now? Restraint? Seclusion? Humiliation? Injury?
This time it was a simple childhood booboo. Nothing to panic over. Ice pack and comforting words and back to class. Whew. The other kind of calls are far too plentiful. I can't take much more of those.
I wonder how these people on the school staff can bring themselves to inflict such trauma on children, and on their families. Where is their conscious? Where is that still small voice within that whispers, "This is wrong. So very wrong."?
They must be at least aware that what they are doing is wrong, because they hide it from me as best they can. They have even taken to hanging up the phone on me, so they can restrain him without my knowledge. They don't file reports about restraining him, so they have no one to answer for when they violate the IEP. Nothing written, no proof. Twice within one week, too.
I'm sick to my stomach that he's back there. Summer can't come soon enough for this mom.
Sunday, January 4, 2009
Back Several Paces
Docs say MIL's kidneys were failing but are now improving since they are re-hydrating her. The UTI is improving. White cell count was high but also coming down. She's very weak and won't eat. She has thrush, and they are treating that. Inserting a feeding tube in her side may be the next step. She is so weak now, she can't sit on the edge of her bed. Hard to believe just over a week ago she was home for four hours for Christmas. She's been able to sit up in a wheelchair for weeks, but now she can't. The c.diff. is mostly to blame, coupled with her refusal to eat enough to keep a bird alive.
We don't understand her inability to eat. It isn't just that her mouth is sore. Even when given foods that don't irritate her mouth, she barely ingests anything. Seriously, it's like two teaspoons of soup and a sip or two of tea. It's more of a "won't eat" than a "can't eat" kind of thing. And we're perplexed. There is no medical reason, according to the docs. It's been going on all along, at least to some degree, as if she's lost all interest in food.
The hospital asks if she is depressed, and I suppose that could be a factor, at least now, when she is losing ground on getting well. But I didn't see depression before, and not eating has been a problem since this began. I don't know. She insists that she's not hungry. Ever. I can't understand this. The men (Dh, FIL, her brother) all get angry and frustrated because they think she's not trying. I'm just confused. Sometimes she does seem to act like she's not going to be bothered with working to get better, at least where food is concerned. Other times she shocks us all and survives things that no one thought she would. She seems to be a fighter! So why not fight to get well by doing what should be simple? Eat! For Chrissake!
The doc told us that if she won't eat, this cycle will repeat. She will go back to the nursing home, not eat, get sick again, and be right back at the hospital. Her kidneys will continue to fail for lack of nutrition, the c.diff. will keep coming back, and it will all be a vicious cycle. Eventually the kidneys will shut down altogether.
And the doctors won't allow this cycle to continue.
They asked about the feeding tube. We are all for it, but MIL was not, at least not the last time. This time, the doc was able to get her verbal permission. So it looks like that might happen tomorrow. Or soon, anyway. They say if they can get nutrition into her, and she can get stronger, she should be able to fight off this bout of c.diff. (whew). Let's hope so. They can always remove the feeding tube later, if she starts to eat on her own.
I just want to see her well again.
We don't understand her inability to eat. It isn't just that her mouth is sore. Even when given foods that don't irritate her mouth, she barely ingests anything. Seriously, it's like two teaspoons of soup and a sip or two of tea. It's more of a "won't eat" than a "can't eat" kind of thing. And we're perplexed. There is no medical reason, according to the docs. It's been going on all along, at least to some degree, as if she's lost all interest in food.
The hospital asks if she is depressed, and I suppose that could be a factor, at least now, when she is losing ground on getting well. But I didn't see depression before, and not eating has been a problem since this began. I don't know. She insists that she's not hungry. Ever. I can't understand this. The men (Dh, FIL, her brother) all get angry and frustrated because they think she's not trying. I'm just confused. Sometimes she does seem to act like she's not going to be bothered with working to get better, at least where food is concerned. Other times she shocks us all and survives things that no one thought she would. She seems to be a fighter! So why not fight to get well by doing what should be simple? Eat! For Chrissake!
The doc told us that if she won't eat, this cycle will repeat. She will go back to the nursing home, not eat, get sick again, and be right back at the hospital. Her kidneys will continue to fail for lack of nutrition, the c.diff. will keep coming back, and it will all be a vicious cycle. Eventually the kidneys will shut down altogether.
And the doctors won't allow this cycle to continue.
They asked about the feeding tube. We are all for it, but MIL was not, at least not the last time. This time, the doc was able to get her verbal permission. So it looks like that might happen tomorrow. Or soon, anyway. They say if they can get nutrition into her, and she can get stronger, she should be able to fight off this bout of c.diff. (whew). Let's hope so. They can always remove the feeding tube later, if she starts to eat on her own.
I just want to see her well again.
Saturday, January 3, 2009
Friday, January 2, 2009
Deja Vu
Just came from the hospital. MIL has a UTI, is very dehydrated, and they are testing her again for c. diff. We have to gown up again as a precaution, until they get the test results.
Sounds like the next step is to put the feeding tube into her side. She hasn't been eating, and she's very weak. Oh, and she has thrush in her mouth, so they are treating that now as well.
We're all bummed out and discouraged. Seems like we've taken several steps backwards. Not only that, but if this is c. diff. again, we worry that she may not survive another go of it.
It was hard to drive into that hospital parking lot again. Poor MIL. She's so tired and wrung out. She's struggling with the same discouragement that we all face. But she's the one who can't afford to lose hope. If she gives up, that's all folks.
Dh is grumpy and strung out, too. He's frustrated with the medical care, but we probably don't have realistic expectations of the facilities we're dealing with. Right now, she's in the hospital, and she'll get more direct care. That's a good thing. Maybe she'll get on the right path this time.
We just spoke to one of her doctors. She was very nice. She isn't one I remember from before, but she is very familiar with the case already. It makes you memorable when you spend 2 months in the hospital, mostly in ICU. They all seem to know MIL, and us. The doc knew more about her medical condition than anyone at the nursing home did, so that was encouraging. I just hope they can get her on the road to healing.
Sounds like the next step is to put the feeding tube into her side. She hasn't been eating, and she's very weak. Oh, and she has thrush in her mouth, so they are treating that now as well.
We're all bummed out and discouraged. Seems like we've taken several steps backwards. Not only that, but if this is c. diff. again, we worry that she may not survive another go of it.
It was hard to drive into that hospital parking lot again. Poor MIL. She's so tired and wrung out. She's struggling with the same discouragement that we all face. But she's the one who can't afford to lose hope. If she gives up, that's all folks.
Dh is grumpy and strung out, too. He's frustrated with the medical care, but we probably don't have realistic expectations of the facilities we're dealing with. Right now, she's in the hospital, and she'll get more direct care. That's a good thing. Maybe she'll get on the right path this time.
We just spoke to one of her doctors. She was very nice. She isn't one I remember from before, but she is very familiar with the case already. It makes you memorable when you spend 2 months in the hospital, mostly in ICU. They all seem to know MIL, and us. The doc knew more about her medical condition than anyone at the nursing home did, so that was encouraging. I just hope they can get her on the road to healing.
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