A while back I mentioned how I requested permission to tape record the IEP meeting, and was told I would not be allowed, because to do so would be felony eavesdropping.
The school principal instructed me to call the legal department if I had any questions regarding the fact that I was being refused permission to tape record my son’s next IEP meeting. The principal declined to discuss it with me “since this is a legal issue versus a policy issue,” and referred me to the legal department.
My first phone call to the legal department was not returned. I left a voicemail message on the evening of March 7th, requesting that she send me the district’s policy prohibiting the tape recording of IEP meetings. I provided my name, address, phone number and email address. There was no response to this voicemail request.
When the paralegal did not return my phone call, and did not forward me the requested district policy, I then contacted the principal again and requested that she send the requested information. During a phone conversation on the morning of March 13th from the principal, I was informed that she had spoken to the paralegal and discussed the fact that I had left a message for the paralegal that had not been returned. Although the paralegal was informed verbally that I had attempted to reach her, I still received no return telephone call from the paralegal.
I telephoned the paralegal on the afternoon of March 13th. The purpose of my telephone call was to again ask her for a copy of the district policy prohibiting the tape recording of IEP meetings. The paralegal instead recited Illinois state law regarding felony eavesdropping. I repeated my request to receive a copy of the district policy prohibiting the tape recording of IEP meetings. She once again recited state law. I then asked her if the district has a policy prohibiting the tape recording of IEP meetings. She replied, “Not in writing.” She went on to say that “the district follows state law, and it's against the law to record a conversation if someone objects.” I told her that I was permitted to tape the first meeting and asked why that permission was being revoked. Again she recited that state law prohibits the tape recording of a meeting if someone objects. I said, as I understand it, state law refers to private conversations, and an IEP is not considered a private conversation. She told me, “I’m not going to argue with you,” and declined to discuss it.
Since it was my intent to gather information and understanding and not to argue, I inquired why I was given permission to tape record the last meeting but was being denied permission to record future meetings. She again stated that it was against state law to tape record a meeting if someone objects. I said that IllinoisSpecialEd.com encourages the taping of IEP meetings and even goes so far as to suggest a brand of tape recording device to use, and asked why they would do so if it was prohibited by state law. The paralegal said, “I’m not going to argue with you. The district follows state law, and state law prohibits the tape recording of a meeting if anyone objects.” I told her that I know of people in Illinois that openly tape their children’s IEP meetings, and asked why it was permissible for them but not for me? She again stated that she wouldn’t argue with me, and repeated that the district follows state law. She said, “We tell any parent that calls that they are not permitted to tape record IEP meetings.”
I explained that the first time I taped a meeting, I requested permission, and they told me that they were not authorized to permit it because the principal was not there and that she was the only one authorized to approve it, and that I would have to ask the principal for permission. When the principal arrived, she granted me permission. “No one had voiced any objections at that time,” I stated. “Why was permission now being revoked?” The paralegal said, “I don’t know. All I know is that the principal received objections from teachers after the meeting, and as long as anyone objects to the meeting being taped, then it is felony eavesdropping.” I asked, “Who is it that is objecting?” The paralegal said, “I don’t know. It doesn’t matter. If anyone objects, you can’t tape. If you do, that violates state law.” I asked why they object to the meeting being tape recorded. She again stated that she wasn’t going to argue with me.
I explained that my husband’s company is under new ownership, and his hours have been changed. He currently leaves for work at 5:15 in the morning, and returns around 5:15 at night, and works Saturdays. He can’t take off of work right now, because the company is under transition, and the business is moving. I depend upon my husband’s opinions, insights and input in order to make decisions regarding our son’s future. Tape recording the meeting made it possible for my husband to actively participate in our son’s academic future. It is also easier for me to participate fully in the meetings when they are taped since I don’t have to take detailed notes. I have arthritis, tendonitis and carpal tunnel in my shoulders, elbows and hands, and taking notes is, at times, quite painful. Taping the meetings was a great help to my family. I asked the paralegal if the school would be able to accommodate my husband’s work hours when scheduling the IEP meetings? The paralegal replied, “As I understand it, the staff comes in early to accommodate your work hours. I think we accommodate you enough.”
I then asked, “Could I bring the tape recorder to the meeting, and then if anyone objects they can just leave the meeting?” The paralegal responded, “You cannot tape record a meeting! The principal has been instructed that if you even bring a tape recorder to the meeting, she is to immediately contact the State’s Attorney!” I ended the phone conversation, stating that I didn’t feel this matter was resolved. I called back a few minutes later and asked if she would put it in writing, that if I brought a tape recorder to a meeting that the State’s Attorney would be called. The paralegal said, “I will not put that in writing.” When I asked her why, she hung up.
Wednesday, May 7, 2008
Monday, May 5, 2008
Grease Is The Word
Fonzie, eat your heart out!
Here’s a picture of my little greaser. I had him all dressed up for his rock ‘n roll music program, that featured music of the 50s and early 60s. The outfit was thrown together at the last minute. The school neglected to tell me that we needed to dress him as a greaser or a flower child, until the NIGHT BEFORE the program! Ack! And dh and I were so sick with colds, there was no way we were running out to the store at this late hour.
But Mom is good in a pinch. I rummaged through dh’s old clothes, and found a plain white t-shirt. It was still too big for Nathan, but it was workable. Then I managed to find dh’s old leather jacket!! Jackpot! Throw in a pair of dark shades, and a couple of handfuls of Mom’s hair products, and Presto! One Greaser, coming up!
How’d I do?
Here’s a picture of my little greaser. I had him all dressed up for his rock ‘n roll music program, that featured music of the 50s and early 60s. The outfit was thrown together at the last minute. The school neglected to tell me that we needed to dress him as a greaser or a flower child, until the NIGHT BEFORE the program! Ack! And dh and I were so sick with colds, there was no way we were running out to the store at this late hour.
But Mom is good in a pinch. I rummaged through dh’s old clothes, and found a plain white t-shirt. It was still too big for Nathan, but it was workable. Then I managed to find dh’s old leather jacket!! Jackpot! Throw in a pair of dark shades, and a couple of handfuls of Mom’s hair products, and Presto! One Greaser, coming up!
How’d I do?
A Spring Melt
Thursday was not a good day.
I got Nathan dressed up in his greaser outfit for the rock ‘n roll music program, and he went off to school as happy as could be. Then a couple hours later, I get a call from his teacher, who is PISSED OFF, and telling me that Nathan is in full blown meltdown mode, throwing things at the teachers and pinning teachers to the wall. Omg. I rushed right over. They had cleared the area, lecturing me about how ALL the other children had to stop learning because of MY son, and move across the room. Then, as Nathan became increasingly more aggressive, they had to remove the other kids entirely (this is the first time they have actually followed the IEP and removed the class!), and again lectured me about how ALL the other children had to stop learning because of MY son, and they had to leave the classroom, because of MY son.
Look, I know this is frustrating for the school, and very upsetting. But right then, I’d just driven halfway across town, scared to death that they were going to again restrain my son (and possibly hurt him, or worse), and I walk into the classroom completely clueless on what has happened, with my son in one corner of the room, his face pale, dark circles under his eyes, red blotchiness on his forehead and cheeks (indicating to me that he is extremely upset and possibly traumatized), hands in fists, with his teachers, para, and principal gathered in the complete opposite corner, looking like they plan to tell me Nathan’s being thrown out of school), and the LAST thing I need is to sit there and listen to accusatory lectures while I’m just trying to find out what the F*** has been going on and get to my son!
Finally, after finding out, yes he did pin a teacher, but what that means is that the para was sitting across from him at the table, and he pushed the table forward. She was not hurt or unable to get up, she had the table pushed into her. She had continued to try to talk to Nathan and work with him, as he pushed at the table. And yes, he threw something at a teacher. It was an empty water bottle, he threw at her back as she walked away, after she informed him that she was going to call me to come and get him (and he knew that meant he wouldn’t get to be in the music program). I don’t know if it hit her or not. Yeah, it was a very bad thing to do, but it was also becoming clear that no one was hurt, and this was not exactly the picture I was given over the telephone. At least that was a little better, he wasn’t throwing furniture as he had in the past, and he hadn’t hurt anybody. I stopped the teacher at that point and said I was going to go to Nathan and see if I could help calm him down.
Nathan was a mess. He looked absolutely hysterical, freaked out, growling. (The more upset he is, the more he loses the ability to communicate, until all he’s able to do is growl.) It took me a long time to get him out of the corner, get him to take his 2nd dose of meds, and finally start talking and calm down. (Btw, I never had to raise my voice, or grab him.) They brought in a lunch they saved for him (he was starved, which wouldn’t have helped his mood any). Within a half hour of my arrival, I had him calm, eating, and had even apologized to the para and the teacher, and thanked the para for saving him a lunch.
They weren’t kicking him out of school as I thought. They told me he could stay, if he could stay calm. They hinted that they would prefer it if I stay. (I was already sick as a dog with a cold, and had been just about ready to leave work anyway, so work had told me to just stay home when I left). But they would allow Nathan to be in the music program, both the dress rehearsal at 1:00 and the show at 7:00, as long as he was done with the meltdown. From the looks on their faces, and the fact that they were gathered in the corner whispering the whole time I was with Nathan, I thought for sure this was going to be bad news. And here, they were perfectly willing to let him go right back to the music program. (Which was great, by the way.)
From talking to Nathan later about the whole thing, none of it was handled very well. Nathan wasn’t focused all day, with the excitement of the music program, and couldn’t keep his mind on classes. I understood that, but the teacher did not. She was growing increasingly more irritated with his behavior as the day went on. She had sent him to another teacher’s room, to work on math at one point, and when he came back, he was behind the rest of the class. I wasn’t clear on if it was all from the visit to the teacher, or if Nathan just wasn’t getting anyting done at all, or both. So they told him he could catch up on what he missed, in school, or do it at home. This was after his whole class had been told that NO ONE had any homework that night because of the music program, and now he had homework. Stupid move. Anyway, Nathan started to get upset, so they told him he could either do that work he missed, or work on a math page along with the rest of the class. Well, Nathan thought since they were giving him a choice, he asked if he could work on his art project. They refused that, and in fact got angry about the suggestion, and said it was one or the other, math or language arts. But by now, he had his heart set on art, and he didn’t understand the refusal to allow it, and he didn’t understand the anger, and he started to lose it. The teacher said he just wanted to get out of the real work and do art. They said he just didn’t want to do any work, like he was just being lazy. Nathan got more upset. They tried some methods to calm him down, but they were trying them too late, and doing too little, so Nathan just kept getting more and more upset. Finally, the teacher insisted that he get the work done, or they would call me to come and get him, and he lost it completely.
I know the teachers don’t know what they did wrong. It’s not an easy thing to explain to them. They don’t realize that any time Nathan comes in and finds out that he is behind, that’s upsetting to him. And they don’t realize that you can’t tell him one moment that he has no homework, and then tell him now you do. He is fixed on the fact that there is no homework tonight. He happily and quickly did the EXTRA homework the night before, celebrating the fact that he would not have homework tonight – no one had homework tonight – and now that was being taken away. He couldn’t wrap his brain around that one. And he gets very upset that he often takes home more work than the other kids, even though the other kids don’t have to take it home because they did it in class. This concept doesn’t click with him: Homework is homework, regardless of why you get it, and it’s not fair that he has homework when no one else does. Now I understand that reasoning, but reasonably the teacher isn’t going to understand that. His mind works differently, and his reasoning is different. Had the teacher told him that he’d have homework to bring home on another day, he probably would have been able to wrap his brain around that. And to tell him he has to ‘do it or else’ only sets up a confrontational block, and he can’t cope with that either, and he resists further. I don’t have any trouble getting him to do any work. I try to emphasize the positives, and I sometimes throw a curve into it to make it a little more fun. I wouldn’t have shoved two papers at him and said “here pick one.” I would have tried to put more of a positive spin on it. “Which of these two assignments do you like the best?” Something like that. And if I still got resistance, I’d start trying to see if I could incorporate something he loves into the assignment. Is it a writing assignment? Can we toss in a little outer space? Dinosaurs? Is one of the assignments math? He loves math, and can do it quickly. Or we can make a game out of it using my spare coins. Is it to read a story? Let’s take turns reading, and I’ll use funny voices. Then, once he’s working on the one assignment, I’d tell him that the other assignment we’d save for another day, and pick a day I didn’t promise him NO HOMEWORK.
Nobody wants to deal with all that personalized work. No one wants to have to learn all his little nuances to make this flow smoothly. I understand that. It’s a lot of work. But even if you don’t want to bother figuring out how to get through to him, can’t you at least try to not get angry when he can’t do something? Can’t you not get confrontational, and draw a line in the sand? Maybe a little patience? A little more laid back approach? A little flexibility? A little creativity? And can you PLEASE not tell my son that he’s just being lazy? Or imply it? He’s not lazy, and he’s not resistant to school work. I can get him to do it just fine, without hassle, sometimes with a lot of fun! He loves to get the work done, and to get positive feedback on the work. He’s eager to please. And when you accuse him of being lazy, he is understandably offended by this, and is completely confused by it. (And it really pisses me off!) And please STOP promising him things like ‘no homework’ or ‘free time on the computer’ and then turn around and take it away from him! He can’t handle that. I mean really, when you tell him week after week that you’re taking away his free time on the computer, and week after week he has a complete meltdown when you do, can you explain to me why you keep doing it? Is it that you are so blind to the fact that this is happening over and over again? Or are you just trying to instigate something here? Sheesh. And same goes for homework. If you tell him he has no homework, and then you tell him he’ll take it home as homework, even though you promised no homework, is it such a shock that he got upset?
And when I get notes home that say Nathan had trouble getting something done on time today, but we didn’t send it home because he was being “respectful,” don’t expect me to believe that you aren’t using extra homework as a form of punishment. Even if that isn’t your intention, it sure as hell feels that way to Nathan. And it does to his parents, too.
I know none of this is easy. But I sure wish we didn’t have to make it harder. The meltdowns can be avoided. The confrontations can be avoided. It really doesn’t take that much. Even if you don’t understand how to avoid getting him upset, if you take a few minutes to find out what is bothering him and just try to be a little patient and maybe a little creative, you might find that you can avoid a lot of problems, and get a lot of work out of him. Willingly. Happily. Threats don’t work. Punishment doesn’t work. Removal, seclusion and restraint don’t work. Criticism and judgment don’t work. Drawing a line in the sand doesn’t work. All you have to do is find out what is at the root of the problem, when he balks. That’s it. Take care of whatever that little issue is, even if it requires a little creativity, and all the rest will fall into place easily. Some teachers have done it. And they thought he was a fantastic student. The ones that don’t want to bother think he’s something else entirely. But in the end, you control what kind of student he is for you. Not him. Not the autism. Not his parents. Not inflexible lesson plans. Just you.
I got Nathan dressed up in his greaser outfit for the rock ‘n roll music program, and he went off to school as happy as could be. Then a couple hours later, I get a call from his teacher, who is PISSED OFF, and telling me that Nathan is in full blown meltdown mode, throwing things at the teachers and pinning teachers to the wall. Omg. I rushed right over. They had cleared the area, lecturing me about how ALL the other children had to stop learning because of MY son, and move across the room. Then, as Nathan became increasingly more aggressive, they had to remove the other kids entirely (this is the first time they have actually followed the IEP and removed the class!), and again lectured me about how ALL the other children had to stop learning because of MY son, and they had to leave the classroom, because of MY son.
Look, I know this is frustrating for the school, and very upsetting. But right then, I’d just driven halfway across town, scared to death that they were going to again restrain my son (and possibly hurt him, or worse), and I walk into the classroom completely clueless on what has happened, with my son in one corner of the room, his face pale, dark circles under his eyes, red blotchiness on his forehead and cheeks (indicating to me that he is extremely upset and possibly traumatized), hands in fists, with his teachers, para, and principal gathered in the complete opposite corner, looking like they plan to tell me Nathan’s being thrown out of school), and the LAST thing I need is to sit there and listen to accusatory lectures while I’m just trying to find out what the F*** has been going on and get to my son!
Finally, after finding out, yes he did pin a teacher, but what that means is that the para was sitting across from him at the table, and he pushed the table forward. She was not hurt or unable to get up, she had the table pushed into her. She had continued to try to talk to Nathan and work with him, as he pushed at the table. And yes, he threw something at a teacher. It was an empty water bottle, he threw at her back as she walked away, after she informed him that she was going to call me to come and get him (and he knew that meant he wouldn’t get to be in the music program). I don’t know if it hit her or not. Yeah, it was a very bad thing to do, but it was also becoming clear that no one was hurt, and this was not exactly the picture I was given over the telephone. At least that was a little better, he wasn’t throwing furniture as he had in the past, and he hadn’t hurt anybody. I stopped the teacher at that point and said I was going to go to Nathan and see if I could help calm him down.
Nathan was a mess. He looked absolutely hysterical, freaked out, growling. (The more upset he is, the more he loses the ability to communicate, until all he’s able to do is growl.) It took me a long time to get him out of the corner, get him to take his 2nd dose of meds, and finally start talking and calm down. (Btw, I never had to raise my voice, or grab him.) They brought in a lunch they saved for him (he was starved, which wouldn’t have helped his mood any). Within a half hour of my arrival, I had him calm, eating, and had even apologized to the para and the teacher, and thanked the para for saving him a lunch.
They weren’t kicking him out of school as I thought. They told me he could stay, if he could stay calm. They hinted that they would prefer it if I stay. (I was already sick as a dog with a cold, and had been just about ready to leave work anyway, so work had told me to just stay home when I left). But they would allow Nathan to be in the music program, both the dress rehearsal at 1:00 and the show at 7:00, as long as he was done with the meltdown. From the looks on their faces, and the fact that they were gathered in the corner whispering the whole time I was with Nathan, I thought for sure this was going to be bad news. And here, they were perfectly willing to let him go right back to the music program. (Which was great, by the way.)
From talking to Nathan later about the whole thing, none of it was handled very well. Nathan wasn’t focused all day, with the excitement of the music program, and couldn’t keep his mind on classes. I understood that, but the teacher did not. She was growing increasingly more irritated with his behavior as the day went on. She had sent him to another teacher’s room, to work on math at one point, and when he came back, he was behind the rest of the class. I wasn’t clear on if it was all from the visit to the teacher, or if Nathan just wasn’t getting anyting done at all, or both. So they told him he could catch up on what he missed, in school, or do it at home. This was after his whole class had been told that NO ONE had any homework that night because of the music program, and now he had homework. Stupid move. Anyway, Nathan started to get upset, so they told him he could either do that work he missed, or work on a math page along with the rest of the class. Well, Nathan thought since they were giving him a choice, he asked if he could work on his art project. They refused that, and in fact got angry about the suggestion, and said it was one or the other, math or language arts. But by now, he had his heart set on art, and he didn’t understand the refusal to allow it, and he didn’t understand the anger, and he started to lose it. The teacher said he just wanted to get out of the real work and do art. They said he just didn’t want to do any work, like he was just being lazy. Nathan got more upset. They tried some methods to calm him down, but they were trying them too late, and doing too little, so Nathan just kept getting more and more upset. Finally, the teacher insisted that he get the work done, or they would call me to come and get him, and he lost it completely.
I know the teachers don’t know what they did wrong. It’s not an easy thing to explain to them. They don’t realize that any time Nathan comes in and finds out that he is behind, that’s upsetting to him. And they don’t realize that you can’t tell him one moment that he has no homework, and then tell him now you do. He is fixed on the fact that there is no homework tonight. He happily and quickly did the EXTRA homework the night before, celebrating the fact that he would not have homework tonight – no one had homework tonight – and now that was being taken away. He couldn’t wrap his brain around that one. And he gets very upset that he often takes home more work than the other kids, even though the other kids don’t have to take it home because they did it in class. This concept doesn’t click with him: Homework is homework, regardless of why you get it, and it’s not fair that he has homework when no one else does. Now I understand that reasoning, but reasonably the teacher isn’t going to understand that. His mind works differently, and his reasoning is different. Had the teacher told him that he’d have homework to bring home on another day, he probably would have been able to wrap his brain around that. And to tell him he has to ‘do it or else’ only sets up a confrontational block, and he can’t cope with that either, and he resists further. I don’t have any trouble getting him to do any work. I try to emphasize the positives, and I sometimes throw a curve into it to make it a little more fun. I wouldn’t have shoved two papers at him and said “here pick one.” I would have tried to put more of a positive spin on it. “Which of these two assignments do you like the best?” Something like that. And if I still got resistance, I’d start trying to see if I could incorporate something he loves into the assignment. Is it a writing assignment? Can we toss in a little outer space? Dinosaurs? Is one of the assignments math? He loves math, and can do it quickly. Or we can make a game out of it using my spare coins. Is it to read a story? Let’s take turns reading, and I’ll use funny voices. Then, once he’s working on the one assignment, I’d tell him that the other assignment we’d save for another day, and pick a day I didn’t promise him NO HOMEWORK.
Nobody wants to deal with all that personalized work. No one wants to have to learn all his little nuances to make this flow smoothly. I understand that. It’s a lot of work. But even if you don’t want to bother figuring out how to get through to him, can’t you at least try to not get angry when he can’t do something? Can’t you not get confrontational, and draw a line in the sand? Maybe a little patience? A little more laid back approach? A little flexibility? A little creativity? And can you PLEASE not tell my son that he’s just being lazy? Or imply it? He’s not lazy, and he’s not resistant to school work. I can get him to do it just fine, without hassle, sometimes with a lot of fun! He loves to get the work done, and to get positive feedback on the work. He’s eager to please. And when you accuse him of being lazy, he is understandably offended by this, and is completely confused by it. (And it really pisses me off!) And please STOP promising him things like ‘no homework’ or ‘free time on the computer’ and then turn around and take it away from him! He can’t handle that. I mean really, when you tell him week after week that you’re taking away his free time on the computer, and week after week he has a complete meltdown when you do, can you explain to me why you keep doing it? Is it that you are so blind to the fact that this is happening over and over again? Or are you just trying to instigate something here? Sheesh. And same goes for homework. If you tell him he has no homework, and then you tell him he’ll take it home as homework, even though you promised no homework, is it such a shock that he got upset?
And when I get notes home that say Nathan had trouble getting something done on time today, but we didn’t send it home because he was being “respectful,” don’t expect me to believe that you aren’t using extra homework as a form of punishment. Even if that isn’t your intention, it sure as hell feels that way to Nathan. And it does to his parents, too.
I know none of this is easy. But I sure wish we didn’t have to make it harder. The meltdowns can be avoided. The confrontations can be avoided. It really doesn’t take that much. Even if you don’t understand how to avoid getting him upset, if you take a few minutes to find out what is bothering him and just try to be a little patient and maybe a little creative, you might find that you can avoid a lot of problems, and get a lot of work out of him. Willingly. Happily. Threats don’t work. Punishment doesn’t work. Removal, seclusion and restraint don’t work. Criticism and judgment don’t work. Drawing a line in the sand doesn’t work. All you have to do is find out what is at the root of the problem, when he balks. That’s it. Take care of whatever that little issue is, even if it requires a little creativity, and all the rest will fall into place easily. Some teachers have done it. And they thought he was a fantastic student. The ones that don’t want to bother think he’s something else entirely. But in the end, you control what kind of student he is for you. Not him. Not the autism. Not his parents. Not inflexible lesson plans. Just you.
Sunday, May 4, 2008
There's Something Else Going On Here
I went to the orthopedic doctor friday. I love this guy. Not only is he a terrific doctor, he is also very compassionate towards people with arthritis. Right off the bat, he took a whole new set of xrays, because he didn’t like the views provided by my GP.
First of all, yes, I do have arthritis in my shoulders. Does it explain the level of pain I’m now experiencing? No. He showed me the evidence of arthritis in my xrays. There were numerous examples that he pointed out to me. But it isn’t bad enough to explain the horrible pain I feel when I get dressed.
He interviewed me about my symptoms, and asked me all kinds of questions. Then he tested me on my range of motion, and strength/weakness. He would have me provide resistance as he pushed on my arms or my hands in various positions. He also informed me that I have carpel tunnel, but that's another issue.
He said what I have is rotator cuff impingement. This can be caused by three things. 1) tendonitis/bursitis 2) a tear in the rotator cuff 3) a hole in the rotator cuff. If it is tendonitis or bursitis (sort of like tennis elbow, only in your shoulder), he will continue to treat me, and likely put me into physical therapy. If it is the tear in the rotator cuff, or the hole in the rotator cuff (and a pin hole is all it would take), both of these require surgery, and he would refer me to the shoulder specialist that he’s partners with. (This is an office of numerous specialists).
He said I need an MRI to determine what the problem is. He wanted it done immediately, and had the nurse call the hospital right then and there to schedule it. So I go for the MRI Monday morning, at 5:30 am. (They were shocked that I didn’t even hesitate at the early hour, lol! But I’m a morning person. Early doesn't bother me at all.) Dh will go into work late, and stay with Nathan while I go for the test. My meds have been changed, to increase the anti-inflamatories and gave me a stronger pain killer to help me sleep at night.
So my GP was right and wrong. Right in the fact that I do have arthritis, but wrong in the fact that this pain is not typical of my level of arthritis. And now I’m headed for either physical therapy, or shoulder surgery.
I feel vindicated and scared, all at the same time. I knew this didn’t feel like just arthritis. But wow, I didn’t expect shoulder surgery, either.
First of all, yes, I do have arthritis in my shoulders. Does it explain the level of pain I’m now experiencing? No. He showed me the evidence of arthritis in my xrays. There were numerous examples that he pointed out to me. But it isn’t bad enough to explain the horrible pain I feel when I get dressed.
He interviewed me about my symptoms, and asked me all kinds of questions. Then he tested me on my range of motion, and strength/weakness. He would have me provide resistance as he pushed on my arms or my hands in various positions. He also informed me that I have carpel tunnel, but that's another issue.
He said what I have is rotator cuff impingement. This can be caused by three things. 1) tendonitis/bursitis 2) a tear in the rotator cuff 3) a hole in the rotator cuff. If it is tendonitis or bursitis (sort of like tennis elbow, only in your shoulder), he will continue to treat me, and likely put me into physical therapy. If it is the tear in the rotator cuff, or the hole in the rotator cuff (and a pin hole is all it would take), both of these require surgery, and he would refer me to the shoulder specialist that he’s partners with. (This is an office of numerous specialists).
He said I need an MRI to determine what the problem is. He wanted it done immediately, and had the nurse call the hospital right then and there to schedule it. So I go for the MRI Monday morning, at 5:30 am. (They were shocked that I didn’t even hesitate at the early hour, lol! But I’m a morning person. Early doesn't bother me at all.) Dh will go into work late, and stay with Nathan while I go for the test. My meds have been changed, to increase the anti-inflamatories and gave me a stronger pain killer to help me sleep at night.
So my GP was right and wrong. Right in the fact that I do have arthritis, but wrong in the fact that this pain is not typical of my level of arthritis. And now I’m headed for either physical therapy, or shoulder surgery.
I feel vindicated and scared, all at the same time. I knew this didn’t feel like just arthritis. But wow, I didn’t expect shoulder surgery, either.
Sunday, April 27, 2008
Please Sign This Petition
Please follow the link and read the petition regarding tax breaks for families with special needs children, and sign if you support the idea. Pass it along to anyone you think might be interested, whether they have special needs children or not.
http://www.petitiononline.com/txbrk456/petition.html
Thank you.
http://www.petitiononline.com/txbrk456/petition.html
Thank you.
Friday, April 25, 2008
Live With It
I've been MIA for a while now. Part of the reason is that the school is hassling me. (I'll save that for another post.) The other reason is that my arthritis is giving me grief.
Some of you know that I have arthritis in my knees, and that I have had knee surgery. I've been told I will be a candidate for replacement on my knees, but because of my YOUNG age (I love saying that), they will do arthoscopic surgery several times before they go the replacement route. It seems you can only have a limited number of knee replacements in your lifetime, and the replacements only last a limited numnber of years, so they don't want to do the surgery on someone so YOUNG (bear with me, this is fun!), so they go the "scope" route first. I sometimes walk with a cane when the pain acts up, or when the ground is icy (it makes me feel more stable). But I do find that the surgery I had a few years ago was like turning back the clock ten years.
I've had other arthritis pain, too. I have gout, which is the most common form of arthritis, and usually affects your toes or feet. I've got arthritis or tendonitis in my hands, feet, back, elbow and shoulder.
Lately my shoulder has been really giving me grief. It is extremely painful. And it has gotten worse over the past couple months. Just getting dressed in the morning is absolutely excruciating now, and has left me blinded with pain, and nauseated. I have a super high tolerance for pain, but this is way beyond my limits.
I went to the doctor, just my general practitioner. I figured this was some kind of tendonitis, bursitis, or maybe a nerve? I was shocked to be told that the pain is due to arthritis. This seemed so much more painful than anything I've dealt with, with other parts of my body. I didn't expect that. Then the nurse tells me, "this is just the aging process" and told me there was nothing I could do about it. She told me to keep taking the pain meds (but they aren't doing anything!) and come back in late May for a follow up. I was desperate. "But I can barely function!" I told her. She LAUGHED at me, and told me "it's tough to get old!" I asked isn't there anything I can do to help the pain? She told me I needed to learn to live with it.
By the way, I'm 46. It's not like I'm a senior citizen here. I have a ten year old son. I work full time. I run an autism website. I have to be able to function. I have a life to live here. I can't just take it easy when the pain hits. It hurts to get dressed, undressed, to shop, to drive, to dry or curl my hair, to put my coat on, to reach up or behind, to lift, etc.
I can't live with this level of pain. If you told me it would be bad like this for a while and get better, I think I could cope. But I can't handle pain that nearly makes me faint, and pain that makes me sick to my stomach. Not every day. Not for the rest of my life.
Now, I'm no wimp. I handle a lot of pain. After I had my c-section, I took NO pain medication. Not even an aspirin. And I was down the basement doing laundry the week after I got home from the hospital. I went to work immediately after having two wisdom teeth pulled, in spite of the fact that half my face turned a horrific mixture of black and blue. I can even take cortisone shots without even a blink or a flinch. My tolerance for pain really freaked out my ortho. He'd never had a patient take a cortisone shot without even a flinch. Never. So it's not like I'm a simpering wuss. I can handle pain. But this shoulder thing, this is more pain than I can live with for the rest of my life. The thought honestly panics me. And to laugh at me, and tell me "it's tough to get old" is not only lacking in empathy, it's downright cold, and cruel. It hit me hard, and I was very depressed about it. It felt like someone chopped off my arm, for all the good it was to me at this point. And it was a kind of death sentence, at least for life as I knew it.
After a while, I decided to call my knee surgeon. I heard he specialized in knees, so I wouldn't be able to go to him for my shoulder, but at least maybe he could recommend someone. It was actually hard for me to make that call. I was really afraid that a second opinion would only confirm what the first doctor told me, and I wasn't ready to deal with that. But I finally screwed up my courage and called my knee miracle worker.
The nurse at that office was MUCH more compassionate. When I told her I couldn't live like this, she murmered "of course!" and spoke to me in an empathetic manner. Then she gave me fantastic news! She said my doctor DOES work on shoulders, and she'd be happy to get me an appointment to have him look at my shoulder!! YIPPEEEEE!!
I'm sure that this doctor will be able to accurately diagnose the situation, and help me to deal with this. Even if this is arthritis, and there is nothing that can be done to improve it, at least he might be able to help me figure out how to cope with it. Maybe physical therapy, or vitiamin/diet supplements, exercises, something, anything! Accupuncture, even! Don't just tell me to 'suck it up old woman.' I'm a human being. Give me some hope, some compassion, some control...
Anyway, now that my orthopedic surgeon is involved, I have hope again. Keep your fingers crossed for me, will ya?
Some of you know that I have arthritis in my knees, and that I have had knee surgery. I've been told I will be a candidate for replacement on my knees, but because of my YOUNG age (I love saying that), they will do arthoscopic surgery several times before they go the replacement route. It seems you can only have a limited number of knee replacements in your lifetime, and the replacements only last a limited numnber of years, so they don't want to do the surgery on someone so YOUNG (bear with me, this is fun!), so they go the "scope" route first. I sometimes walk with a cane when the pain acts up, or when the ground is icy (it makes me feel more stable). But I do find that the surgery I had a few years ago was like turning back the clock ten years.
I've had other arthritis pain, too. I have gout, which is the most common form of arthritis, and usually affects your toes or feet. I've got arthritis or tendonitis in my hands, feet, back, elbow and shoulder.
Lately my shoulder has been really giving me grief. It is extremely painful. And it has gotten worse over the past couple months. Just getting dressed in the morning is absolutely excruciating now, and has left me blinded with pain, and nauseated. I have a super high tolerance for pain, but this is way beyond my limits.
I went to the doctor, just my general practitioner. I figured this was some kind of tendonitis, bursitis, or maybe a nerve? I was shocked to be told that the pain is due to arthritis. This seemed so much more painful than anything I've dealt with, with other parts of my body. I didn't expect that. Then the nurse tells me, "this is just the aging process" and told me there was nothing I could do about it. She told me to keep taking the pain meds (but they aren't doing anything!) and come back in late May for a follow up. I was desperate. "But I can barely function!" I told her. She LAUGHED at me, and told me "it's tough to get old!" I asked isn't there anything I can do to help the pain? She told me I needed to learn to live with it.
By the way, I'm 46. It's not like I'm a senior citizen here. I have a ten year old son. I work full time. I run an autism website. I have to be able to function. I have a life to live here. I can't just take it easy when the pain hits. It hurts to get dressed, undressed, to shop, to drive, to dry or curl my hair, to put my coat on, to reach up or behind, to lift, etc.
I can't live with this level of pain. If you told me it would be bad like this for a while and get better, I think I could cope. But I can't handle pain that nearly makes me faint, and pain that makes me sick to my stomach. Not every day. Not for the rest of my life.
Now, I'm no wimp. I handle a lot of pain. After I had my c-section, I took NO pain medication. Not even an aspirin. And I was down the basement doing laundry the week after I got home from the hospital. I went to work immediately after having two wisdom teeth pulled, in spite of the fact that half my face turned a horrific mixture of black and blue. I can even take cortisone shots without even a blink or a flinch. My tolerance for pain really freaked out my ortho. He'd never had a patient take a cortisone shot without even a flinch. Never. So it's not like I'm a simpering wuss. I can handle pain. But this shoulder thing, this is more pain than I can live with for the rest of my life. The thought honestly panics me. And to laugh at me, and tell me "it's tough to get old" is not only lacking in empathy, it's downright cold, and cruel. It hit me hard, and I was very depressed about it. It felt like someone chopped off my arm, for all the good it was to me at this point. And it was a kind of death sentence, at least for life as I knew it.
After a while, I decided to call my knee surgeon. I heard he specialized in knees, so I wouldn't be able to go to him for my shoulder, but at least maybe he could recommend someone. It was actually hard for me to make that call. I was really afraid that a second opinion would only confirm what the first doctor told me, and I wasn't ready to deal with that. But I finally screwed up my courage and called my knee miracle worker.
The nurse at that office was MUCH more compassionate. When I told her I couldn't live like this, she murmered "of course!" and spoke to me in an empathetic manner. Then she gave me fantastic news! She said my doctor DOES work on shoulders, and she'd be happy to get me an appointment to have him look at my shoulder!! YIPPEEEEE!!
I'm sure that this doctor will be able to accurately diagnose the situation, and help me to deal with this. Even if this is arthritis, and there is nothing that can be done to improve it, at least he might be able to help me figure out how to cope with it. Maybe physical therapy, or vitiamin/diet supplements, exercises, something, anything! Accupuncture, even! Don't just tell me to 'suck it up old woman.' I'm a human being. Give me some hope, some compassion, some control...
Anyway, now that my orthopedic surgeon is involved, I have hope again. Keep your fingers crossed for me, will ya?
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