Guest guest Posted March 17, 2010 Report Share Posted March 17, 2010 Dara, LOL!! The school nurse is going to educate the staff about lyme??!!! Yes, I think you are doing the correct thing by getting an advocate! Sorry you have to go through all this. It's another long hard road!( Like you don't have a long enough one  already!) Please keep us updated! Hugs judy ________________________________ From: darabeth2003 <dara.alewine@...> Sent: Tue, March 16, 2010 11:33:51 PM Subject: Re: [ ] IEP  Thanks for the responses. Unfortunately as expected, it was the meeting from hell. When the psychologist insisted on doing their own testing, and I told them that without knowledge of lyme disease the results would not be put into the right context, I was told they would consult the school nurse to educate them about lyme disease. Ya, that should be informative (please note the absolute sarcasm). Guess I've got to get an advocate. Dara > > Hi Dara, > I went through all of this too with my son. This was pre lyme, when I thought he had only ocd and tourettes. Your correct in thinking that if the school does their own testing, it is going to be nothing like the testing you already had done.They have a right to evaluate your child, but I highlly doubt they have any LLMD " S to do the eval!!! > I would tell them that they can either go by your LLMD's recommendations or they can pay for another LLMD of your choice to evaluate your child,therefore it would be much easier for them to go by the recommendations you already have. > The school is already at fault if they are not implementing what is on your IEP. Bring all of it to their attention and tape record the entire meeting. > Keep us posted! > Hugs > judy > > > > ____________ _________ _________ __ > From: darabeth2003 <dara.alewine@ ...> > > Sent: Sun, March 14, 2010 11:48:16 PM > Subject: [ ] IEP > >  > My 7yo son completed neuropsych testing with a lyme literate psychologist, and now I have 2 pages of services and accomodations she recommends for him to help with school performance. My son already has an IEP, developed pre-lyme dx. I requested an IEP mtg, set for Tuesday, to ask talk to the school about his lyme dx and request the things on the report be added to his IEP. His team leader already mentioned to me " we might have to do our own testing " . > I wanted to say, Are you kidding me? I hardly think any testing the school will do will be as thorough or accurate as the 3 days of testing and 23 page report I handed you. > But since I have to be diplomatic, at least to start, I am first wondering, does anyone know what my rights are around this? I know I have a right to outside testing, which I already have done, but if there is a disparity in test results, what are my rights? > > His teacher already does not implement most of the accomodations that are already on the IEP. Always an uphill battle. My stomach is already turning at the thought of this meeting on Tuesday. > > Thanks, > Dara > > > > Reply to sender | Reply to group | Reply via web post | Start a New Topic Messages in this topic (1) > Recent Activity: * New Members 2 > Visit Your Group > Lyme Disease News continually updated from thousands of sources around the > net: http://www.topix. net/health/ lyme-disease > > MedWorm: The latest items on: Lyme Disease > http://tinyurl. com/23dgy8 > > > Switch to: Text-Only, Daily Digest • Unsubscribe • Terms of Use > . > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 17, 2010 Report Share Posted March 17, 2010 At my daughters middle school the school nurse did educate the teachers and the rest about chronic lyme - it was amazing - now we are at the high school and my daughters father (that has no legal rights over her) is making problems - I so understand what you are going through and pray for you - but, get the school nurse on your side and the fight will be easier for you!! God Bless - Diane ________________________________ From: jchabot <jchabot@...> Sent: Wed, March 17, 2010 11:54:30 AM Subject: Re: [ ] IEP  Dara, LOL!! The school nurse is going to educate the staff about lyme??!!! Yes, I think you are doing the correct thing by getting an advocate! Sorry you have to go through all this. It's another long hard road!( Like you don't have a long enough one  already!) Please keep us updated! Hugs judy ____________ _________ _________ __ From: darabeth2003 <dara.alewine@ verizon.net> Sent: Tue, March 16, 2010 11:33:51 PM Subject: Re: [ ] IEP  Thanks for the responses. Unfortunately as expected, it was the meeting from hell. When the psychologist insisted on doing their own testing, and I told them that without knowledge of lyme disease the results would not be put into the right context, I was told they would consult the school nurse to educate them about lyme disease. Ya, that should be informative (please note the absolute sarcasm). Guess I've got to get an advocate. Dara > > Hi Dara, > I went through all of this too with my son. This was pre lyme, when I thought he had only ocd and tourettes. Your correct in thinking that if the school does their own testing, it is going to be nothing like the testing you already had done.They have a right to evaluate your child, but I highlly doubt they have any LLMD " S to do the eval!!! > I would tell them that they can either go by your LLMD's recommendations or they can pay for another LLMD of your choice to evaluate your child,therefore it would be much easier for them to go by the recommendations you already have. > The school is already at fault if they are not implementing what is on your IEP. Bring all of it to their attention and tape record the entire meeting. > Keep us posted! > Hugs > judy > > > > ____________ _________ _________ __ > From: darabeth2003 <dara.alewine@ ...> > > Sent: Sun, March 14, 2010 11:48:16 PM > Subject: [ ] IEP > >  > My 7yo son completed neuropsych testing with a lyme literate psychologist, and now I have 2 pages of services and accomodations she recommends for him to help with school performance. My son already has an IEP, developed pre-lyme dx. I requested an IEP mtg, set for Tuesday, to ask talk to the school about his lyme dx and request the things on the report be added to his IEP. His team leader already mentioned to me " we might have to do our own testing " . > I wanted to say, Are you kidding me? I hardly think any testing the school will do will be as thorough or accurate as the 3 days of testing and 23 page report I handed you. > But since I have to be diplomatic, at least to start, I am first wondering, does anyone know what my rights are around this? I know I have a right to outside testing, which I already have done, but if there is a disparity in test results, what are my rights? > > His teacher already does not implement most of the accomodations that are already on the IEP. Always an uphill battle. My stomach is already turning at the thought of this meeting on Tuesday. > > Thanks, > Dara > > > > Reply to sender | Reply to group | Reply via web post | Start a New Topic Messages in this topic (1) > Recent Activity: * New Members 2 > Visit Your Group > Lyme Disease News continually updated from thousands of sources around the > net: http://www.topix. net/health/ lyme-disease > > MedWorm: The latest items on: Lyme Disease > http://tinyurl. com/23dgy8 > > > Switch to: Text-Only, Daily Digest • Unsubscribe • Terms of Use > . > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 17, 2010 Report Share Posted March 17, 2010 DianeDid you contact ?How are you feeling?peace:)Laina From: Diane Biel <dkbmama@...> Subject: Re: [ ] IEP Date: Wednesday, March 17, 2010, 1:47 PM  At my daughters middle school the school nurse did educate the teachers and the rest about chronic lyme - it was amazing - now we are at the high school and my daughters father (that has no legal rights over her) is making problems - I so understand what you are going through and pray for you - but, get the school nurse on your side and the fight will be easier for you!! God Bless - Diane ____________ _________ _________ __ From: jchabot <jchabotsnet (DOT) net> Sent: Wed, March 17, 2010 11:54:30 AM Subject: Re: [ ] IEP  Dara, LOL!! The school nurse is going to educate the staff about lyme??!!! Yes, I think you are doing the correct thing by getting an advocate! Sorry you have to go through all this. It's another long hard road!( Like you don't have a long enough one  already!) Please keep us updated! Hugs judy ____________ _________ _________ __ From: darabeth2003 <dara.alewine@ verizon.net> Sent: Tue, March 16, 2010 11:33:51 PM Subject: Re: [ ] IEP  Thanks for the responses. Unfortunately as expected, it was the meeting from hell. When the psychologist insisted on doing their own testing, and I told them that without knowledge of lyme disease the results would not be put into the right context, I was told they would consult the school nurse to educate them about lyme disease. Ya, that should be informative (please note the absolute sarcasm). Guess I've got to get an advocate. Dara > > Hi Dara, > I went through all of this too with my son. This was pre lyme, when I thought he had only ocd and tourettes. Your correct in thinking that if the school does their own testing, it is going to be nothing like the testing you already had done.They have a right to evaluate your child, but I highlly doubt they have any LLMD " S to do the eval!!! > I would tell them that they can either go by your LLMD's recommendations or they can pay for another LLMD of your choice to evaluate your child,therefore it would be much easier for them to go by the recommendations you already have. > The school is already at fault if they are not implementing what is on your IEP. Bring all of it to their attention and tape record the entire meeting. > Keep us posted! > Hugs > judy > > > > ____________ _________ _________ __ > From: darabeth2003 <dara.alewine@ ...> > > Sent: Sun, March 14, 2010 11:48:16 PM > Subject: [ ] IEP > >  > My 7yo son completed neuropsych testing with a lyme literate psychologist, and now I have 2 pages of services and accomodations she recommends for him to help with school performance. My son already has an IEP, developed pre-lyme dx. I requested an IEP mtg, set for Tuesday, to ask talk to the school about his lyme dx and request the things on the report be added to his IEP. His team leader already mentioned to me " we might have to do our own testing " . > I wanted to say, Are you kidding me? I hardly think any testing the school will do will be as thorough or accurate as the 3 days of testing and 23 page report I handed you. > But since I have to be diplomatic, at least to start, I am first wondering, does anyone know what my rights are around this? I know I have a right to outside testing, which I already have done, but if there is a disparity in test results, what are my rights? > > His teacher already does not implement most of the accomodations that are already on the IEP. Always an uphill battle. My stomach is already turning at the thought of this meeting on Tuesday. > > Thanks, > Dara > > > > Reply to sender | Reply to group | Reply via web post | Start a New Topic Messages in this topic (1) > Recent Activity: * New Members 2 > Visit Your Group > Lyme Disease News continually updated from thousands of sources around the > net: http://www.topix. net/health/ lyme-disease > > MedWorm: The latest items on: Lyme Disease > http://tinyurl. com/23dgy8 > > > Switch to: Text-Only, Daily Digest • Unsubscribe • Terms of Use > . > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 17, 2010 Report Share Posted March 17, 2010 I wish there was any hope of the school nurse knowing anything about lyme. But it does not look likely. When I went in a few weeks ago to give her a list of Jonah's meds, she told me a story about how much zithromax helped her last sinus infection, so hopefully it would really help the lyme too. That is her extent of lyme knowledge. Oh, and that one time she found a tick crawling on her desk and she killed it. As I said, uphill battle. Dara > > > > Hi Dara, > > I went through all of this too with my son. This was pre lyme, when I thought he had only ocd and tourettes. Your correct in thinking that if the school does their own testing, it is going to be nothing like the testing you already had done.They have a right to evaluate your child, but I highlly doubt they have any LLMD " S to do the eval!!! > > I would tell them that they can either go by your LLMD's recommendations or they can pay for another LLMD of your choice to evaluate your child,therefore it would be much easier for them to go by the recommendations you already have. > > The school is already at fault if they are not implementing what is on your IEP. Bring all of it to their attention and tape record the entire meeting. > > Keep us posted! > > Hugs > > judy > > > > > > > > ____________ _________ _________ __ > > From: darabeth2003 <dara.alewine@ ...> > > > > Sent: Sun, March 14, 2010 11:48:16 PM > > Subject: [ ] IEP > > > >  > > My 7yo son completed neuropsych testing with a lyme literate psychologist, and now I have 2 pages of services and accomodations she recommends for him to help with school performance. My son already has an IEP, developed pre-lyme dx. I requested an IEP mtg, set for Tuesday, to ask talk to the school about his lyme dx and request the things on the report be added to his IEP. His team leader already mentioned to me " we might have to do our own testing " . > > I wanted to say, Are you kidding me? I hardly think any testing the school will do will be as thorough or accurate as the 3 days of testing and 23 page report I handed you. > > But since I have to be diplomatic, at least to start, I am first wondering, does anyone know what my rights are around this? I know I have a right to outside testing, which I already have done, but if there is a disparity in test results, what are my rights? > > > > His teacher already does not implement most of the accomodations that are already on the IEP. Always an uphill battle. My stomach is already turning at the thought of this meeting on Tuesday. > > > > Thanks, > > Dara > > > > > > > > Reply to sender | Reply to group | Reply via web post | Start a New Topic Messages in this topic (1) > > Recent Activity: * New Members 2 > > Visit Your Group > > Lyme Disease News continually updated from thousands of sources around the > > net: http://www.topix. net/health/ lyme-disease > > > > MedWorm: The latest items on: Lyme Disease > > http://tinyurl. com/23dgy8 > > > > > > Switch to: Text-Only, Daily Digest • Unsubscribe • Terms of Use > > . > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 18, 2010 Report Share Posted March 18, 2010 Our district nurse informed me haughtily that she knew all about Lyme, that my daughters were hardly the only ones who had had it in the district (really? How many cases of congenital, late stage neuro lyme in Palo Alto, CA?), and that the knew all about herxing -- my daughters should only have it a day or two (this in the face of a doctor's note saying my daughter would need to be out for the semester and home schooled on those days when she could handle being out of bed at all) and that I needed to " let go " and let my seventh and sixth grade dughters " learn independence. " (again, REALLY? while undergoing what Dr. H calls " chemotherapy " and being bedridden, that would be the best time to cut them loose and tell them they're on their own?) I handled it by having the doctor write a very specific letter, plus giving documentation with a bibliography to support what I said were the syptoms they kids were showing, plus giving a copy of " Under Our Skin " to educate them that this disease is really no even remotely like bronchitis, the flu, an ear infection, sinusitis, or anything that most people could even experience to analogize it to.... And then I just let the nurse blather on in her incredibly rude way. When she finished telling me the way it was, I politely asked her what legal authority she had for substituting her own judgment for that of the treating physician. Also said I thought she must have " misheard " our doctor telling her the herxes last only a day or two, since he had written in the letter that she would be out of school all semester and re From: darabeth2003 <dara.alewine@...> Subject: Re: [ ] IEP Date: Wednesday, March 17, 2010, 3:38 PM  I wish there was any hope of the school nurse knowing anything about lyme. But it does not look likely. When I went in a few weeks ago to give her a list of Jonah's meds, she told me a story about how much zithromax helped her last sinus infection, so hopefully it would really help the lyme too. That is her extent of lyme knowledge. Oh, and that one time she found a tick crawling on her desk and she killed it. As I said, uphill battle. Dara > > > > Hi Dara, > > I went through all of this too with my son. This was pre lyme, when I thought he had only ocd and tourettes. Your correct in thinking that if the school does their own testing, it is going to be nothing like the testing you already had done.They have a right to evaluate your child, but I highlly doubt they have any LLMD " S to do the eval!!! > > I would tell them that they can either go by your LLMD's recommendations or they can pay for another LLMD of your choice to evaluate your child,therefore it would be much easier for them to go by the recommendations you already have. > > The school is already at fault if they are not implementing what is on your IEP. Bring all of it to their attention and tape record the entire meeting. > > Keep us posted! > > Hugs > > judy > > > > > > > > ____________ _________ _________ __ > > From: darabeth2003 <dara.alewine@ ...> > > > > Sent: Sun, March 14, 2010 11:48:16 PM > > Subject: [ ] IEP > > > >  > > My 7yo son completed neuropsych testing with a lyme literate psychologist, and now I have 2 pages of services and accomodations she recommends for him to help with school performance. My son already has an IEP, developed pre-lyme dx. I requested an IEP mtg, set for Tuesday, to ask talk to the school about his lyme dx and request the things on the report be added to his IEP. His team leader already mentioned to me " we might have to do our own testing " . > > I wanted to say, Are you kidding me? I hardly think any testing the school will do will be as thorough or accurate as the 3 days of testing and 23 page report I handed you. > > But since I have to be diplomatic, at least to start, I am first wondering, does anyone know what my rights are around this? I know I have a right to outside testing, which I already have done, but if there is a disparity in test results, what are my rights? > > > > His teacher already does not implement most of the accomodations that are already on the IEP. Always an uphill battle. My stomach is already turning at the thought of this meeting on Tuesday. > > > > Thanks, > > Dara > > > > > > > > Reply to sender | Reply to group | Reply via web post | Start a New Topic Messages in this topic (1) > > Recent Activity: * New Members 2 > > Visit Your Group > > Lyme Disease News continually updated from thousands of sources around the > > net: http://www.topix. net/health/ lyme-disease > > > > MedWorm: The latest items on: Lyme Disease > > http://tinyurl. com/23dgy8 > > > > > > Switch to: Text-Only, Daily Digest • Unsubscribe • Terms of Use > > . > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 18, 2010 Report Share Posted March 18, 2010 oop, pushed send accidentally. Anyway, I just calmly pushed back, but I was ready. The school is NOT allowed to substitute its judgment for that of the treating physician. If you have a letter from the treating physician telling what symptoms she is experiencing and what accommodations she needs (I helped ours by preparing the list and then having him sign off on it) the district is really going out on a limb to have a separate assessment done. Remember that the neuropsych issues with lyme are physical and medical, not psychological and subjective. Why they would want to spend the money on that assessment is a mystery. But for sure, substituting the judgment of a lyme specialist MD with that of a generalist school nurse is just asking for an appeal and a lawsuit. I got a long way by being polite but firm. The teachers ended up being so completely appalled by the nurse's high handedness that they accommodated us without our having to deal with the district at all any more. Not to say that I don't have to do most of it myself -- tutoring my daughter, writing to get assignments so I can help her stay caught up, etc. But last semester she ended up just getting a " pass " in everything and she is back in school more or less full time and earning real grades now (still a challenge because she has had a bad week this week, but in general much more workable). Sorry, sorry you are going through this. Ignorant and dogmatic people are the last thing we should have to deal with. Hang in there. You are not alone. Natasha From: darabeth2003 <dara.alewine@...> Subject: Re: [ ] IEP Date: Wednesday, March 17, 2010, 3:38 PM  I wish there was any hope of the school nurse knowing anything about lyme. But it does not look likely. When I went in a few weeks ago to give her a list of Jonah's meds, she told me a story about how much zithromax helped her last sinus infection, so hopefully it would really help the lyme too. That is her extent of lyme knowledge. Oh, and that one time she found a tick crawling on her desk and she killed it. As I said, uphill battle. Dara > > > > Hi Dara, > > I went through all of this too with my son. This was pre lyme, when I thought he had only ocd and tourettes. Your correct in thinking that if the school does their own testing, it is going to be nothing like the testing you already had done.They have a right to evaluate your child, but I highlly doubt they have any LLMD " S to do the eval!!! > > I would tell them that they can either go by your LLMD's recommendations or they can pay for another LLMD of your choice to evaluate your child,therefore it would be much easier for them to go by the recommendations you already have. > > The school is already at fault if they are not implementing what is on your IEP. Bring all of it to their attention and tape record the entire meeting. > > Keep us posted! > > Hugs > > judy > > > > > > > > ____________ _________ _________ __ > > From: darabeth2003 <dara.alewine@ ...> > > > > Sent: Sun, March 14, 2010 11:48:16 PM > > Subject: [ ] IEP > > > >  > > My 7yo son completed neuropsych testing with a lyme literate psychologist, and now I have 2 pages of services and accomodations she recommends for him to help with school performance. My son already has an IEP, developed pre-lyme dx. I requested an IEP mtg, set for Tuesday, to ask talk to the school about his lyme dx and request the things on the report be added to his IEP. His team leader already mentioned to me " we might have to do our own testing " . > > I wanted to say, Are you kidding me? I hardly think any testing the school will do will be as thorough or accurate as the 3 days of testing and 23 page report I handed you. > > But since I have to be diplomatic, at least to start, I am first wondering, does anyone know what my rights are around this? I know I have a right to outside testing, which I already have done, but if there is a disparity in test results, what are my rights? > > > > His teacher already does not implement most of the accomodations that are already on the IEP. Always an uphill battle. My stomach is already turning at the thought of this meeting on Tuesday. > > > > Thanks, > > Dara > > > > > > > > Reply to sender | Reply to group | Reply via web post | Start a New Topic Messages in this topic (1) > > Recent Activity: * New Members 2 > > Visit Your Group > > Lyme Disease News continually updated from thousands of sources around the > > net: http://www.topix. net/health/ lyme-disease > > > > MedWorm: The latest items on: Lyme Disease > > http://tinyurl. com/23dgy8 > > > > > > Switch to: Text-Only, Daily Digest • Unsubscribe • Terms of Use > > . > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 18, 2010 Report Share Posted March 18, 2010 Hi Dara, I apologize for not responding sooner. I went through all of this with my daughter's school. Let me first say, you do not need to try to be diplomatic! It doesn't work. I advocated for my child fervently. Some of the teachers didn't like me much but she got everything I asked for. If a doctor stated her needs, I believe they are required to follow it. You do not have to allow them to do their own testing. It would be redundant, ineffectual because it will not be completed by a LLMD and put your child through more tests than he's already had to endure. And that is exactly what I would tell them. I would also let your doc know that you are getting resistance from the school. He may be willing to back you up. Because my daughter also had health issues that needed to be adddressed, we went the 504 route, not IEP. I got what I wanted by dealing with the guidance couselor mostly and not letting up. If you can find one person in the school who is at least sympathetic if not understanding, build a relationship with them and let them help you advocate. I also called everytime they didn't follow the 504. If I got alot of resistance I put it in writing. Once they know you're serious, aren't going to be pushed around and are willing to call a lawyer if neccesary, they tend to cave. Also call the state board of ed where you are. At your next meeting mention you called them and what they said. That will let them know you're not messing around. If you have the personality that allows you to be tenacious and assertive, you are the best advocate for your child because you know him the best and love him the most. It was a struggle at first but once they knew I wasn't going to give up advocating for my daughter they gave me everything I asked for, sometimes even more then I asked for. I also insisted on having a meeting that involved every teacher, the guidance counselor and the nurses so I could explain to them her symptoms and what they should expect. All my best to you. He's young so you have a long road ahead of you in dealing with the school system. If you start out taking control, you'll get what you want. Annie ________________________________ From: Diane Biel <dkbmama@...> Sent: Wed, March 17, 2010 1:47:04 PM Subject: Re: [ ] IEP  At my daughters middle school the school nurse did educate the teachers and the rest about chronic lyme - it was amazing - now we are at the high school and my daughters father (that has no legal rights over her) is making problems - I so understand what you are going through and pray for you - but, get the school nurse on your side and the fight will be easier for you!! God Bless - Diane ____________ _________ _________ __ From: jchabot <jchabotsnet (DOT) net> Sent: Wed, March 17, 2010 11:54:30 AM Subject: Re: [ ] IEP  Dara, LOL!! The school nurse is going to educate the staff about lyme??!!! Yes, I think you are doing the correct thing by getting an advocate! Sorry you have to go through all this. It's another long hard road!( Like you don't have a long enough one  already!) Please keep us updated! Hugs judy ____________ _________ _________ __ From: darabeth2003 <dara.alewine@ verizon.net> Sent: Tue, March 16, 2010 11:33:51 PM Subject: Re: [ ] IEP  Thanks for the responses. Unfortunately as expected, it was the meeting from hell. When the psychologist insisted on doing their own testing, and I told them that without knowledge of lyme disease the results would not be put into the right context, I was told they would consult the school nurse to educate them about lyme disease. Ya, that should be informative (please note the absolute sarcasm). Guess I've got to get an advocate. Dara > > Hi Dara, > I went through all of this too with my son. This was pre lyme, when I thought he had only ocd and tourettes. Your correct in thinking that if the school does their own testing, it is going to be nothing like the testing you already had done.They have a right to evaluate your child, but I highlly doubt they have any LLMD " S to do the eval!!! > I would tell them that they can either go by your LLMD's recommendations or they can pay for another LLMD of your choice to evaluate your child,therefore it would be much easier for them to go by the recommendations you already have. > The school is already at fault if they are not implementing what is on your IEP. Bring all of it to their attention and tape record the entire meeting. > Keep us posted! > Hugs > judy > > > > ____________ _________ _________ __ > From: darabeth2003 <dara.alewine@ ...> > > Sent: Sun, March 14, 2010 11:48:16 PM > Subject: [ ] IEP > >  > My 7yo son completed neuropsych testing with a lyme literate psychologist, and now I have 2 pages of services and accomodations she recommends for him to help with school performance. My son already has an IEP, developed pre-lyme dx. I requested an IEP mtg, set for Tuesday, to ask talk to the school about his lyme dx and request the things on the report be added to his IEP. His team leader already mentioned to me " we might have to do our own testing " . > I wanted to say, Are you kidding me? I hardly think any testing the school will do will be as thorough or accurate as the 3 days of testing and 23 page report I handed you. > But since I have to be diplomatic, at least to start, I am first wondering, does anyone know what my rights are around this? I know I have a right to outside testing, which I already have done, but if there is a disparity in test results, what are my rights? > > His teacher already does not implement most of the accomodations that are already on the IEP. Always an uphill battle. My stomach is already turning at the thought of this meeting on Tuesday. > > Thanks, > Dara > > > > Reply to sender | Reply to group | Reply via web post | Start a New Topic Messages in this topic (1) > Recent Activity: * New Members 2 > Visit Your Group > Lyme Disease News continually updated from thousands of sources around the > net: http://www.topix. net/health/ lyme-disease > > MedWorm: The latest items on: Lyme Disease > http://tinyurl. com/23dgy8 > > > Switch to: Text-Only, Daily Digest • Unsubscribe • Terms of Use > . > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 18, 2010 Report Share Posted March 18, 2010 Thanks Annie, They told me the county the the " right " to do their own testing. Ever since the meeting, I feel sick that I signed off on allowing them to do it, because I hate the thought of my son going through more testing, and I know they will do whatever it takes to come up with different results and refute mine even more. I've got to call someone in the state today and find out if it is in fact their right and if not rescind my authorization. I learned quickly at the meeting that collaboration is not the way to go. I hate the fact that I have to fight with the people that have my son more hours in a day than I do. Thanks for the feedaback Dara > > > > Hi Dara, > > I went through all of this too with my son. This was pre lyme, when I thought he had only ocd and tourettes. Your correct in thinking that if the school does their own testing, it is going to be nothing like the testing you already had done.They have a right to evaluate your child, but I highlly doubt they have any LLMD " S to do the eval!!! > > I would tell them that they can either go by your LLMD's recommendations or they can pay for another LLMD of your choice to evaluate your child,therefore it would be much easier for them to go by the recommendations you already have. > > The school is already at fault if they are not implementing what is on your IEP. Bring all of it to their attention and tape record the entire meeting. > > Keep us posted! > > Hugs > > judy > > > > > > > > ____________ _________ _________ __ > > From: darabeth2003 <dara.alewine@ ...> > > > > Sent: Sun, March 14, 2010 11:48:16 PM > > Subject: [ ] IEP > > > >  > > My 7yo son completed neuropsych testing with a lyme literate psychologist, and now I have 2 pages of services and accomodations she recommends for him to help with school performance. My son already has an IEP, developed pre-lyme dx. I requested an IEP mtg, set for Tuesday, to ask talk to the school about his lyme dx and request the things on the report be added to his IEP. His team leader already mentioned to me " we might have to do our own testing " . > > I wanted to say, Are you kidding me? I hardly think any testing the school will do will be as thorough or accurate as the 3 days of testing and 23 page report I handed you. > > But since I have to be diplomatic, at least to start, I am first wondering, does anyone know what my rights are around this? I know I have a right to outside testing, which I already have done, but if there is a disparity in test results, what are my rights? > > > > His teacher already does not implement most of the accomodations that are already on the IEP. Always an uphill battle. My stomach is already turning at the thought of this meeting on Tuesday. > > > > Thanks, > > Dara > > > > > > > > Reply to sender | Reply to group | Reply via web post | Start a New Topic Messages in this topic (1) > > Recent Activity: * New Members 2 > > Visit Your Group > > Lyme Disease News continually updated from thousands of sources around the > > net: http://www.topix. net/health/ lyme-disease > > > > MedWorm: The latest items on: Lyme Disease > > http://tinyurl. com/23dgy8 > > > > > > Switch to: Text-Only, Daily Digest • Unsubscribe • Terms of Use > > . > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 18, 2010 Report Share Posted March 18, 2010 For anyone dealing with IEP's, www.wrightslaw.com is an excellent site to start with. 2 of my kids have IEP's and I've been through a lot with it. Also, please remember that a 504 doesn't have the same legal protections that an IEP has, and if a school district tries to tell you that a 504 is for physical accomodations and an IEP is for emotional impairments, etc. they are incorrect. Physical disabilities also fall under an IEP. If a child qualifies for an IEP, then they automatically qualify for a 504 (basically a 504 is " less " than an IEP). However if a child qualifies for a 504, they don't automatically qualify for an IEP. If anyone needs help finding out the specific laws for their state (if you're having trouble finding them on your state's dept of ed website), let me know and I'll do what I can to help you with the research on it. When I have time, I also assist people in writing letters to the school, usually when a school has not followed the law and drug their feet in getting evals done on time, or when an IEP has been violated. Charlotte iamwhimsy@... http://whimsy.t35.com [ ] IEP > > > > Ã, > > My 7yo son completed neuropsych testing with a lyme literate psychologist, and now I have 2 pages of services and accomodations she recommends for him to help with school performance. My son already has an IEP, developed pre-lyme dx. I requested an IEP mtg, set for Tuesday, to ask talk to the school about his lyme dx and request the things on the report be added to his IEP. His team leader already mentioned to me " we might have to do our own testing " . > > I wanted to say, Are you kidding me? I hardly think any testing the school will do will be as thorough or accurate as the 3 days of testing and 23 page report I handed you. > > But since I have to be diplomatic, at least to start, I am first wondering, does anyone know what my rights are around this? I know I have a right to outside testing, which I already have done, but if there is a disparity in test results, what are my rights? > > > > His teacher already does not implement most of the accomodations that are already on the IEP. Always an uphill battle. My stomach is already turning at the thought of this meeting on Tuesday. > > > > Thanks, > > Dara > > > > > > > > Reply to sender | Reply to group | Reply via web post | Start a New Topic Messages in this topic (1) > > Recent Activity: * New Members 2 > > Visit Your Group > > Lyme Disease News continually updated from thousands of sources around the > > net: http://www.topix. net/health/ lyme-disease > > > > MedWorm: The latest items on: Lyme Disease > > http://tinyurl. com/23dgy8 > > > > > > Switch to: Text-Only, Daily Digest ââ,¬Â¢ Unsubscribe ââ,¬Â¢ Terms of Use > > . > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 18, 2010 Report Share Posted March 18, 2010 I am wondering if a child that has an IEP has to have a doctors letter stating that they have a disability? thanks - Diane ________________________________ From: CT <iamwhimsy@...> Sent: Thu, March 18, 2010 8:41:30 AM Subject: Re: [ ] IEP  For anyone dealing with IEP's, www.wrightslaw. com is an excellent site to start with. 2 of my kids have IEP's and I've been through a lot with it. Also, please remember that a 504 doesn't have the same legal protections that an IEP has, and if a school district tries to tell you that a 504 is for physical accomodations and an IEP is for emotional impairments, etc. they are incorrect. Physical disabilities also fall under an IEP. If a child qualifies for an IEP, then they automatically qualify for a 504 (basically a 504 is " less " than an IEP). However if a child qualifies for a 504, they don't automatically qualify for an IEP. If anyone needs help finding out the specific laws for their state (if you're having trouble finding them on your state's dept of ed website), let me know and I'll do what I can to help you with the research on it. When I have time, I also assist people in writing letters to the school, usually when a school has not followed the law and drug their feet in getting evals done on time, or when an IEP has been violated. Charlotte iamwhimsygmail (DOT) com http://whimsy. t35.com [ ] IEP > > > > Ã, > > My 7yo son completed neuropsych testing with a lyme literate psychologist, and now I have 2 pages of services and accomodations she recommends for him to help with school performance. My son already has an IEP, developed pre-lyme dx. I requested an IEP mtg, set for Tuesday, to ask talk to the school about his lyme dx and request the things on the report be added to his IEP. His team leader already mentioned to me " we might have to do our own testing " . > > I wanted to say, Are you kidding me? I hardly think any testing the school will do will be as thorough or accurate as the 3 days of testing and 23 page report I handed you. > > But since I have to be diplomatic, at least to start, I am first wondering, does anyone know what my rights are around this? I know I have a right to outside testing, which I already have done, but if there is a disparity in test results, what are my rights? > > > > His teacher already does not implement most of the accomodations that are already on the IEP. Always an uphill battle. My stomach is already turning at the thought of this meeting on Tuesday. > > > > Thanks, > > Dara > > > > > > > > Reply to sender | Reply to group | Reply via web post | Start a New Topic Messages in this topic (1) > > Recent Activity: * New Members 2 > > Visit Your Group > > Lyme Disease News continually updated from thousands of sources around the > > net: http://www.topix. net/health/ lyme-disease > > > > MedWorm: The latest items on: Lyme Disease > > http://tinyurl. com/23dgy8 > > > > > > Switch to: Text-Only, Daily Digest ââ,¬Â¢ Unsubscribe ââ,¬Â¢ Terms of Use > > . > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 18, 2010 Report Share Posted March 18, 2010 If it is a physical disability yes, and highly recommended for " emotional impairment " disabilities also. If you don't have your own dr provide the info on the " emotional disability " and how it affects access to a free and appropriate education then you have to go by the eval that the school does. The biggest thing is showing that whatever the disability, the effects of it, limit the access to free and appropriate education. Double check on 's Law (and I will when I get the chance), but I don't believe that the school can perform their own physical exam of a child, so they have to go by your medical dr. So for example right now for my daughter she is on homebound schooling because her lyme symptoms are so great that she can't function in a traditional school environment (due to pain and fatigue, and a " messed up " sleep schedule). We were able to show (with a dr's note) that due to these situations, she can not attend school during the traditional day, so instead she works on her school work whenever it works for her (usually the middle of the night) and sees her homebound teacher twice a week. For my son, one of his issues is extreme anxiety (he is listed under an autism dx) and one of his accomodations in his IEP to ensure that he has assess " to a free and appropriate education " is to work in small groups, oral reports are usually presented in front of the teacher and his caseworker rather than in front of the class, he is allowed a " fidget " to play with, and he has a " free pass " to " escape " from the classroom when the anxiety is overwhelming. With these accomodations in place, it allows him to function in the traditional school environment. Charlotte iamwhimsy@... http://whimsy.t35.com [ ] IEP > > > > Ã, > > My 7yo son completed neuropsych testing with a lyme literate psychologist, and now I have 2 pages of services and accomodations she recommends for him to help with school performance. My son already has an IEP, developed pre-lyme dx. I requested an IEP mtg, set for Tuesday, to ask talk to the school about his lyme dx and request the things on the report be added to his IEP. His team leader already mentioned to me " we might have to do our own testing " . > > I wanted to say, Are you kidding me? I hardly think any testing the school will do will be as thorough or accurate as the 3 days of testing and 23 page report I handed you. > > But since I have to be diplomatic, at least to start, I am first wondering, does anyone know what my rights are around this? I know I have a right to outside testing, which I already have done, but if there is a disparity in test results, what are my rights? > > > > His teacher already does not implement most of the accomodations that are already on the IEP. Always an uphill battle. My stomach is already turning at the thought of this meeting on Tuesday. > > > > Thanks, > > Dara > > > > > > > > Reply to sender | Reply to group | Reply via web post | Start a New Topic Messages in this topic (1) > > Recent Activity: * New Members 2 > > Visit Your Group > > Lyme Disease News continually updated from thousands of sources around the > > net: http://www.topix. net/health/ lyme-disease > > > > MedWorm: The latest items on: Lyme Disease > > http://tinyurl. com/23dgy8 > > > > > > Switch to: Text-Only, Daily Digest ââ,¬Â¢ Unsubscribe ââ,¬Â¢ Terms of Use > > . > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 18, 2010 Report Share Posted March 18, 2010 I REmember feeling the same way about having to push and threaten them to get my dauhgter what she needed. I am really sorry they are being so unhelpful. I remember feeling like if I didn t go to school with her, which they d never allow, that she wasn t going to be taken care of. It s an awful feeling sending your child off to people who refuse to listen and cooperate. You will get through this and you will find a way to get him what he needs. Remember to take a breath every now and then. You will get there. On Thu Mar 18th, 2010 9:13 AM EDT darabeth2003 wrote: >Thanks Annie, > >They told me the county the the " right " to do their own testing. Ever since the meeting, I feel sick that I signed off on allowing them to do it, because I hate the thought of my son going through more testing, and I know they will do whatever it takes to come up with different results and refute mine even more. I've got to call someone in the state today and find out if it is in fact their right and if not rescind my authorization. > >I learned quickly at the meeting that collaboration is not the way to go. I hate the fact that I have to fight with the people that have my son more hours in a day than I do. > >Thanks for the feedaback > >Dara > > >> > >> > Hi Dara, >> > I went through all of this too with my son. This was pre lyme, when I thought he had only ocd and tourettes. Your correct in thinking that if the school does their own testing, it is going to be nothing like the testing you already had done.They have a right to evaluate your child, but I highlly doubt they have any LLMD " S to do the eval!!! >> > I would tell them that they can either go by your LLMD's recommendations or they can pay for another LLMD of your choice to evaluate your child,therefore it would be much easier for them to go by the recommendations you already have. >> > The school is already at fault if they are not implementing what is on your IEP. Bring all of it to their attention and tape record the entire meeting. >> > Keep us posted! >> > Hugs >> > judy >> > >> > >> > >> > ____________ _________ _________ __ >> > From: darabeth2003 <dara.alewine@ ...> >> > >> > Sent: Sun, March 14, 2010 11:48:16 PM >> > Subject: [ ] IEP >> > >> >  >> > My 7yo son completed neuropsych testing with a lyme literate psychologist, and now I have 2 pages of services and accomodations she recommends for him to help with school performance. My son already has an IEP, developed pre-lyme dx. I requested an IEP mtg, set for Tuesday, to ask talk to the school about his lyme dx and request the things on the report be added to his IEP. His team leader already mentioned to me " we might have to do our own testing " . >> > I wanted to say, Are you kidding me? I hardly think any testing the school will do will be as thorough or accurate as the 3 days of testing and 23 page report I handed you. >> > But since I have to be diplomatic, at least to start, I am first wondering, does anyone know what my rights are around this? I know I have a right to outside testing, which I already have done, but if there is a disparity in test results, what are my rights? >> > >> > His teacher already does not implement most of the accomodations that are already on the IEP. Always an uphill battle. My stomach is already turning at the thought of this meeting on Tuesday. >> > >> > Thanks, >> > Dara >> > >> > >> > >> > Reply to sender | Reply to group | Reply via web post | Start a New Topic Messages in this topic (1) >> > Recent Activity: * New Members 2 >> > Visit Your Group >> > Lyme Disease News continually updated from thousands of sources around the >> > net: http://www.topix. net/health/ lyme-disease >> > >> > MedWorm: The latest items on: Lyme Disease >> > http://tinyurl. com/23dgy8 >> > >> > >> > Switch to: Text-Only, Daily Digest • Unsubscribe • Terms of Use >> > . >> > >> > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 18, 2010 Report Share Posted March 18, 2010 I don't know the answer to that but I do know that if you are trying to get an IEP and you have a doctor's letter they are pretty much stuck with what the doctor says. They cannot substitute their own judgment for that of a medical professional unless, I suppose, they use their own medical professional but if that person is not an expert in the area of your child's impairment they risk losing and appeal and having to pay out damages in a lawsuit for bad faith violation of the ADA. That is, assuming that they haven't just successfully discouraged the parents from moving forward because they didn't know that the district wasn't allowed to do that. From: Diane Biel <dkbmama@...> Subject: Re: [ ] IEP Date: Thursday, March 18, 2010, 7:48 AM  I am wondering if a child that has an IEP has to have a doctors letter stating that they have a disability? thanks - Diane ____________ _________ _________ __ From: CT <iamwhimsygmail (DOT) com> Sent: Thu, March 18, 2010 8:41:30 AM Subject: Re: [ ] IEP  For anyone dealing with IEP's, www.wrightslaw. com is an excellent site to start with. 2 of my kids have IEP's and I've been through a lot with it. Also, please remember that a 504 doesn't have the same legal protections that an IEP has, and if a school district tries to tell you that a 504 is for physical accomodations and an IEP is for emotional impairments, etc. they are incorrect. Physical disabilities also fall under an IEP. If a child qualifies for an IEP, then they automatically qualify for a 504 (basically a 504 is " less " than an IEP). However if a child qualifies for a 504, they don't automatically qualify for an IEP. If anyone needs help finding out the specific laws for their state (if you're having trouble finding them on your state's dept of ed website), let me know and I'll do what I can to help you with the research on it. When I have time, I also assist people in writing letters to the school, usually when a school has not followed the law and drug their feet in getting evals done on time, or when an IEP has been violated. Charlotte iamwhimsygmail (DOT) com http://whimsy. t35.com [ ] IEP > > > > Ã, > > My 7yo son completed neuropsych testing with a lyme literate psychologist, and now I have 2 pages of services and accomodations she recommends for him to help with school performance. My son already has an IEP, developed pre-lyme dx. I requested an IEP mtg, set for Tuesday, to ask talk to the school about his lyme dx and request the things on the report be added to his IEP. His team leader already mentioned to me " we might have to do our own testing " . > > I wanted to say, Are you kidding me? I hardly think any testing the school will do will be as thorough or accurate as the 3 days of testing and 23 page report I handed you. > > But since I have to be diplomatic, at least to start, I am first wondering, does anyone know what my rights are around this? I know I have a right to outside testing, which I already have done, but if there is a disparity in test results, what are my rights? > > > > His teacher already does not implement most of the accomodations that are already on the IEP. Always an uphill battle. My stomach is already turning at the thought of this meeting on Tuesday. > > > > Thanks, > > Dara > > > > > > > > Reply to sender | Reply to group | Reply via web post | Start a New Topic Messages in this topic (1) > > Recent Activity: * New Members 2 > > Visit Your Group > > Lyme Disease News continually updated from thousands of sources around the > > net: http://www.topix. net/health/ lyme-disease > > > > MedWorm: The latest items on: Lyme Disease > > http://tinyurl. com/23dgy8 > > > > > > Switch to: Text-Only, Daily Digest ââ,¬Â¢ Unsubscribe ââ,¬Â¢ Terms of Use > > . > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 18, 2010 Report Share Posted March 18, 2010 I just read over the list of accomodations the IEP is rejecting again, and see now that great many of them are because they don't see or believe that he has sensory overload, is tired, anxious, or in pain. This goes along with the " you don't look sick " phenonmenon, right? It is true, he does not tell them when he is tired, he tells me about it when he gets home and breaks down. At 7 I don't think he can go to the teacher and say that he feels anxious- but the fact that he throws up in the morning because he is so nervous about going to school covers it. The school tells me how the kids don't notice the noise and distractions of 24 kids, connected to another room of 24 kids with no door in between. " they are so resilient it does not bother them the way it bothers adults " , but don't hear my son complain when he gets home about how noisy it is in school. Or how he performs better on tests when it is presented in a way that does not overwhelm him with too much info at once or time constraints. The senosory issues, fatigue, anxiety, pain are all talked about in the report and listed by Dr. J in his letter. So when their testing comes back, it will not be interpreted with these things in mind. Any suggestions on how to address this? Thanks, Dara > > > > > > Hi Dara, > > > I went through all of this too with my son. This was pre lyme, when I thought he had only ocd and tourettes. Your correct in thinking that if the school does their own testing, it is going to be nothing like the testing you already had done.They have a right to evaluate your child, but I highlly doubt they have any LLMD " S to do the eval!!! > > > I would tell them that they can either go by your LLMD's recommendations or they can pay for another LLMD of your choice to evaluate your child,therefore it would be much easier for them to go by the recommendations you already have. > > > The school is already at fault if they are not implementing what is on your IEP. Bring all of it to their attention and tape record the entire meeting. > > > Keep us posted! > > > Hugs > > > judy > > > > > > > > > > > > ____________ _________ _________ __ > > > From: darabeth2003 <dara.alewine@ ...> > > > > > > Sent: Sun, March 14, 2010 11:48:16 PM > > > Subject: [ ] IEP > > > > > > Ã, > > > My 7yo son completed neuropsych testing with a lyme literate psychologist, and now I have 2 pages of services and accomodations she recommends for him to help with school performance. My son already has an IEP, developed pre-lyme dx. I requested an IEP mtg, set for Tuesday, to ask talk to the school about his lyme dx and request the things on the report be added to his IEP. His team leader already mentioned to me " we might have to do our own testing " . > > > I wanted to say, Are you kidding me? I hardly think any testing the school will do will be as thorough or accurate as the 3 days of testing and 23 page report I handed you. > > > But since I have to be diplomatic, at least to start, I am first wondering, does anyone know what my rights are around this? I know I have a right to outside testing, which I already have done, but if there is a disparity in test results, what are my rights? > > > > > > His teacher already does not implement most of the accomodations that are already on the IEP. Always an uphill battle. My stomach is already turning at the thought of this meeting on Tuesday. > > > > > > Thanks, > > > Dara > > > > > > > > > > > > Reply to sender | Reply to group | Reply via web post | Start a New Topic Messages in this topic (1) > > > Recent Activity: * New Members 2 > > > Visit Your Group > > > Lyme Disease News continually updated from thousands of sources around the > > > net: http://www.topix. net/health/ lyme-disease > > > > > > MedWorm: The latest items on: Lyme Disease > > > http://tinyurl. com/23dgy8 > > > > > > > > > Switch to: Text-Only, Daily Digest ââ,¬Â¢ Unsubscribe ââ,¬Â¢ Terms of Use > > > . > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 18, 2010 Report Share Posted March 18, 2010 His doctor sees him in the context of Lyme. These people are wanting to separate them. That is completely unjustified. They need to explain the basis for their decision to treat them as separate problems. They don't get to make you justify treating them together. You have a doctor's letter that does that. Natasha From: darabeth2003 <dara.alewine@...> Subject: Re: [ ] IEP Date: Thursday, March 18, 2010, 1:25 PM  I just read over the list of accomodations the IEP is rejecting again, and see now that great many of them are because they don't see or believe that he has sensory overload, is tired, anxious, or in pain. This goes along with the " you don't look sick " phenonmenon, right? It is true, he does not tell them when he is tired, he tells me about it when he gets home and breaks down. At 7 I don't think he can go to the teacher and say that he feels anxious- but the fact that he throws up in the morning because he is so nervous about going to school covers it. The school tells me how the kids don't notice the noise and distractions of 24 kids, connected to another room of 24 kids with no door in between. " they are so resilient it does not bother them the way it bothers adults " , but don't hear my son complain when he gets home about how noisy it is in school. Or how he performs better on tests when it is presented in a way that does not overwhelm him with too much info at once or time constraints. The senosory issues, fatigue, anxiety, pain are all talked about in the report and listed by Dr. J in his letter. So when their testing comes back, it will not be interpreted with these things in mind. Any suggestions on how to address this? Thanks, Dara > > > > > > Hi Dara, > > > I went through all of this too with my son. This was pre lyme, when I thought he had only ocd and tourettes. Your correct in thinking that if the school does their own testing, it is going to be nothing like the testing you already had done.They have a right to evaluate your child, but I highlly doubt they have any LLMD " S to do the eval!!! > > > I would tell them that they can either go by your LLMD's recommendations or they can pay for another LLMD of your choice to evaluate your child,therefore it would be much easier for them to go by the recommendations you already have. > > > The school is already at fault if they are not implementing what is on your IEP. Bring all of it to their attention and tape record the entire meeting. > > > Keep us posted! > > > Hugs > > > judy > > > > > > > > > > > > ____________ _________ _________ __ > > > From: darabeth2003 <dara.alewine@ ...> > > > > > > Sent: Sun, March 14, 2010 11:48:16 PM > > > Subject: [ ] IEP > > > > > > Ã, > > > My 7yo son completed neuropsych testing with a lyme literate psychologist, and now I have 2 pages of services and accomodations she recommends for him to help with school performance. My son already has an IEP, developed pre-lyme dx. I requested an IEP mtg, set for Tuesday, to ask talk to the school about his lyme dx and request the things on the report be added to his IEP. His team leader already mentioned to me " we might have to do our own testing " . > > > I wanted to say, Are you kidding me? I hardly think any testing the school will do will be as thorough or accurate as the 3 days of testing and 23 page report I handed you. > > > But since I have to be diplomatic, at least to start, I am first wondering, does anyone know what my rights are around this? I know I have a right to outside testing, which I already have done, but if there is a disparity in test results, what are my rights? > > > > > > His teacher already does not implement most of the accomodations that are already on the IEP. Always an uphill battle. My stomach is already turning at the thought of this meeting on Tuesday. > > > > > > Thanks, > > > Dara > > > > > > > > > > > > Reply to sender | Reply to group | Reply via web post | Start a New Topic Messages in this topic (1) > > > Recent Activity: * New Members 2 > > > Visit Your Group > > > Lyme Disease News continually updated from thousands of sources around the > > > net: http://www.topix. net/health/ lyme-disease > > > > > > MedWorm: The latest items on: Lyme Disease > > > http://tinyurl. com/23dgy8 > > > > > > > > > Switch to: Text-Only, Daily Digest ââ,¬Â¢ Unsubscribe ââ,¬Â¢ Terms of Use > > > . > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 19, 2010 Report Share Posted March 19, 2010 I had to get an attorney(unfortunately!) Judy ________________________________ From: darabeth2003 <dara.alewine@...> Sent: Thu, March 18, 2010 4:25:36 PM Subject: Re: [ ] IEP  I just read over the list of accomodations the IEP is rejecting again, and see now that great many of them are because they don't see or believe that he has sensory overload, is tired, anxious, or in pain. This goes along with the " you don't look sick " phenonmenon, right? It is true, he does not tell them when he is tired, he tells me about it when he gets home and breaks down. At 7 I don't think he can go to the teacher and say that he feels anxious- but the fact that he throws up in the morning because he is so nervous about going to school covers it. The school tells me how the kids don't notice the noise and distractions of 24 kids, connected to another room of 24 kids with no door in between. " they are so resilient it does not bother them the way it bothers adults " , but don't hear my son complain when he gets home about how noisy it is in school. Or how he performs better on tests when it is presented in a way that does not overwhelm him with too much info at once or time constraints. The senosory issues, fatigue, anxiety, pain are all talked about in the report and listed by Dr. J in his letter. So when their testing comes back, it will not be interpreted with these things in mind. Any suggestions on how to address this? Thanks, Dara > > > > > > Hi Dara, > > > I went through all of this too with my son. This was pre lyme, when I thought he had only ocd and tourettes. Your correct in thinking that if the school does their own testing, it is going to be nothing like the testing you already had done.They have a right to evaluate your child, but I highlly doubt they have any LLMD " S to do the eval!!! > > > I would tell them that they can either go by your LLMD's recommendations or they can pay for another LLMD of your choice to evaluate your child,therefore it would be much easier for them to go by the recommendations you already have. > > > The school is already at fault if they are not implementing what is on your IEP. Bring all of it to their attention and tape record the entire meeting. > > > Keep us posted! > > > Hugs > > > judy > > > > > > > > > > > > ____________ _________ _________ __ > > > From: darabeth2003 <dara.alewine@ ...> > > > > > > Sent: Sun, March 14, 2010 11:48:16 PM > > > Subject: [ ] IEP > > > > > > Ã, > > > My 7yo son completed neuropsych testing with a lyme literate psychologist, and now I have 2 pages of services and accomodations she recommends for him to help with school performance. My son already has an IEP, developed pre-lyme dx. I requested an IEP mtg, set for Tuesday, to ask talk to the school about his lyme dx and request the things on the report be added to his IEP. His team leader already mentioned to me " we might have to do our own testing " . > > > I wanted to say, Are you kidding me? I hardly think any testing the school will do will be as thorough or accurate as the 3 days of testing and 23 page report I handed you. > > > But since I have to be diplomatic, at least to start, I am first wondering, does anyone know what my rights are around this? I know I have a right to outside testing, which I already have done, but if there is a disparity in test results, what are my rights? > > > > > > His teacher already does not implement most of the accomodations that are already on the IEP. Always an uphill battle. My stomach is already turning at the thought of this meeting on Tuesday. > > > > > > Thanks, > > > Dara > > > > > > > > > > > > Reply to sender | Reply to group | Reply via web post | Start a New Topic Messages in this topic (1) > > > Recent Activity: * New Members 2 > > > Visit Your Group > > > Lyme Disease News continually updated from thousands of sources around the > > > net: http://www.topix. net/health/ lyme-disease > > > > > > MedWorm: The latest items on: Lyme Disease > > > http://tinyurl. com/23dgy8 > > > > > > > > > Switch to: Text-Only, Daily Digest ââ,¬Â¢ Unsubscribe ââ,¬Â¢ Terms of Use > > > . > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 19, 2010 Report Share Posted March 19, 2010 I just wanted to say that I absolutely feel empowered by all the strong women who post here about what they have done to advocate for their children. My daughter was in a wheel chair for a few months in 5th grade and the principal and nurse absolutely refused to allow her to come in and try to use the bathroom by herself. Needless to say, the " momma bear " in me took a while to emerge from behind the " om my ..this is my child in a wheel chair " but the bear finally came out. I called in the advocate for the district and then he recommended I call in the advocate from the MA Dept Of Education. It was not a plesant meeting but they did get the idea that we weren't going away and were willing to go over their heads. Press on... it's worth it! > > My 7yo son completed neuropsych testing with a lyme literate psychologist, and now I have 2 pages of services and accomodations she recommends for him to help with school performance. My son already has an IEP, developed pre-lyme dx. I requested an IEP mtg, set for Tuesday, to ask talk to the school about his lyme dx and request the things on the report be added to his IEP. His team leader already mentioned to me " we might have to do our own testing " . > I wanted to say, Are you kidding me? I hardly think any testing the school will do will be as thorough or accurate as the 3 days of testing and 23 page report I handed you. > But since I have to be diplomatic, at least to start, I am first wondering, does anyone know what my rights are around this? I know I have a right to outside testing, which I already have done, but if there is a disparity in test results, what are my rights? > > His teacher already does not implement most of the accomodations that are already on the IEP. Always an uphill battle. My stomach is already turning at the thought of this meeting on Tuesday. > > Thanks, > Dara > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 20, 2010 Report Share Posted March 20, 2010 One thing that worked well with my daughter regarding the anxiety since she also had trouble verbalizing it, especially once it started to hit her (she couldn't communicate much at all at that point). Her caseworker created a card that had like 5 different faces on it. Starting with a really happy face, and going from there to the 5th one was like a very alarmed, anxious, scared face. When she started feeling anxious, she was able to take the card to the teacher and simply point to where she was at. She would then usually leave the room to a " safe " place. This was sometimes with her caseworker (and they would often walk around the school until she calmed down), or sometimes in student services where she could sit and watch the fish. The object was for her to communicate (even if just by pointing to a face on a card) what she was feeling, and then appropriate action was taken. Believe it or not, this method was used when she was 14 years old and had just entered high school. She was so incredibly anxious that she often couldn't communicate at all and it was like she was early elementary age. The other thing, it's important to have a " safe system " set up. This would be like 3 people who are usually available to have the child spend time with them, or under their supervision. It could be the secretary in the office, another teacher, the librarian, school social worker, etc. There is a primary safe person, and then the 2 or 3 (if necessary) back-ups. When the child is with their safe person, it's important for that person to help the child get to a point where they can " self-calm " . Some kids can do this quickly once they are away from the stimulus or anxiety provoking situation, others need more direction and help. Once the child is starting to " self-calm " , the safe person needs to back off a bit and let the child calm down on their own. When the child is calm, it's helpful to go back and see if they can pinpoint what set off the anxiety and how they were able to calm down. Hope this helps. Charlotte iamwhimsy@... http://whimsy.t35.com [ ] IEP > > > > > > Ã, > > > My 7yo son completed neuropsych testing with a lyme literate psychologist, and now I have 2 pages of services and accomodations she recommends for him to help with school performance. My son already has an IEP, developed pre-lyme dx. I requested an IEP mtg, set for Tuesday, to ask talk to the school about his lyme dx and request the things on the report be added to his IEP. His team leader already mentioned to me " we might have to do our own testing " . > > > I wanted to say, Are you kidding me? I hardly think any testing the school will do will be as thorough or accurate as the 3 days of testing and 23 page report I handed you. > > > But since I have to be diplomatic, at least to start, I am first wondering, does anyone know what my rights are around this? I know I have a right to outside testing, which I already have done, but if there is a disparity in test results, what are my rights? > > > > > > His teacher already does not implement most of the accomodations that are already on the IEP. Always an uphill battle. My stomach is already turning at the thought of this meeting on Tuesday. > > > > > > Thanks, > > > Dara > > > > > > > > > > > > Reply to sender | Reply to group | Reply via web post | Start a New Topic Messages in this topic (1) > > > Recent Activity: * New Members 2 > > > Visit Your Group > > > Lyme Disease News continually updated from thousands of sources around the > > > net: http://www.topix. net/health/ lyme-disease > > > > > > MedWorm: The latest items on: Lyme Disease > > > http://tinyurl. com/23dgy8 > > > > > > > > > Switch to: Text-Only, Daily Digest ââ,¬Â¢ Unsubscribe ââ,¬Â¢ Terms of Use > > > . > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 8, 2010 Report Share Posted April 8, 2010 Teri, I don't think you are going overboard. We don't have an IEP, but we do have a 504. I thought that the teachers got copies of the 504 plans as well when my daughter had hers (she's in high school), but I quess that is not the case. We have found that sending emails to all her teachers is the best way to communicate with them and be sure that she is getting the accomodations she needs. (She doesn't like to draw attention to herself in class.) We also use her counselor as a resource a lot. I am thinking of copying her 504 plan and putting a copy in each of the teachers boxes. I read that on here somewhere and it sounds like a good idea. But one thing is for sure, if you don't contact each teacher your child goes to then you are running the risk of some teachers not knowing what your child needs to succeed in class. My daughter was 15 when she was diagnosed and we are still learning our way around so I hope that I have helped in some way. Good luck to you and your son! , Ashely (16, poly) > > Hello Group, > OK, I need to vent a little. does anybody's child have an IEP ? My oldest son > has develpomental delays and has an IEP. We do not go back to commitee > until next month and his OT & PT are supposed to start the 2nd week of > school. OK, here's my slight problem. On the first day of school Josh's > teacher did not have a copy of the IEP . When I asked the school psychologist > about this she stated that for confidentiality reasons the teachers do not > get a " hard copy " of the IEP. Why cant the teachers keep it confidential ? My > best friends son has an IEP, and her sons teachers get a copy( different > school district though but still in NY state). Josh has difficulty with fine > and gross motor skills ( cutting , writing, jumping) etc... I think the > teacher should be aware of these difficulties. The therapists only touched > lightly on these subjects before school . The therapists do have a meeting > with the teacher but I feel it should be in writitng for referance. Am I > going overboard ? I figured I would ask since some of our children ( in the > group have an IEP) Any replies would be greatly appreciated. > Teri > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 15, 2010 Report Share Posted September 15, 2010 Cathleen, I'm in the same boat as you are. Our son has an IEP for his bipolar, PDD-NOS, and sensory situations including the ODD behavior. But now I am learning and stepping into another chapter as how help our son with his Asperger's and how to get him tested when insurance won't pay for it and the possibility the school won't test him. I am hoping the school will help and can help our guy and be able to stay in the school he is in, in our district. I don't relish the idea of him going to a school 45 minutes from everyday one-way. If I learn of anything, I will let you know, just keep in mind we might be in different states but hopefully there will a general idea of how to go about this. Hang in there,On Wed, Sep 15, 2010 at 2:24 PM, Barbara Pinckney <b-pinckney@...> wrote: Cathleen, I am very new at this so take what I have to say with a grain of salt! We have not had our IEP meeting yet (my daughter was diagnosed last month) because the school wanted to give her 8th grade teachers a few weeks to get to know her. They will then bring in my husband and I and a few of her seventh grade teachers and we will all discuss what we think will best help her. So from what I understand that the IEP is really targeted to the individual child. With my Liz, her needs revolve most around organization and social support. From: cathleen.veloria@... Date: Tue, 14 Sep 2010 17:21:39 +0000Subject: ( ) IEP I have a new question re:IEPs. We have one this Thurs. My son is diagnosed ADHD but not Aspergers because this is very new to us. Does anyone know what accomodations I should be getting from the school for a kid with Asp.? I pretty much know what he needs for the ADD, but any info would be a great help. Thanks Cathleen Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 18, 2010 Report Share Posted September 18, 2010 I think in the background I am hearing the Hallelujah Chorus!! So happy for you, ! Kym IEP > Oh.. I FORGOT to tell you.. we have the IEP scheduled at the NEW school > for Tuesday. I did ask that they invite the sped teacher from the old > school to attend because she IS a good teacher (I am choosing to believe > that the principal made her lie) and she knows Logan well so she will be > an asset in helping set up goals and sharing her knowledge. But.. the dir > of sped had gotten a copy of my email that I sent to the principal and > many others telling them of the difficulty of having an IEP meeting at > 3:15. So, she said.. we will hold his IEP meetings between 9 am and 2 pm. > So, Tuesday we are going to have our IEP meeting at 12 noon!!!!!!! > I will take subs or something for lunch. I might even bake cookies if I > have time between Amari getting his stiches out, going to the > dentist, going for a pacemaker check....... I'll try. > 12 noon with no arguments! > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 18, 2010 Report Share Posted September 18, 2010 thank you for your reply, and unfortunately I already had the IEP and couldn't give those suggestions. My IEP was horrific. The school admitted my child had deep ;and troubling issues and all they offered was "Power Hour" which is an hour of intense lessons that ALL the kids at the school get, so basically I was offered nothing for my son. I am so mad!! Cathleen Help Me From: bucaroobonzai2003 <bucaroobonzai2003@...> Sent: Wed, September 15, 2010 6:17:48 PMSubject: ( ) Re: IEP ABA therapy or some sort of behavior modification help in the classroomSocial skills trainingOT for handwriting and sensory skillsUntimed tests>> I have a new question re:IEPs. We have one this Thurs. My son is diagnosed ADHD but not Aspergers because this is very new to us. Does anyone know what accomodations I should be getting from the school for a kid with Asp.? I pretty much know what he needs for the ADD, but any info would be a great help.> Thanks> Cathleen> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 9, 2011 Report Share Posted February 9, 2011 Abscences Water at desk Able to go to the bathroom as needed Hepa filter in room Sanitizer on entering room each time Extra time for tests - grew out of that Notification of grade level illnesses Set of school books just for the house Ursula - mom to Macey (15,CVID) On Feb 9, 2011, at 1:06 PM, " April " <n2katz2003@...> wrote: > Does anybody have an IEP for their child because of the PID? My son is 3.5 years old and attends a special ed preschool due to various delays so he has an IEP already. > > I met with the nurse at his school the other day and she asked a bunch of questions and seemed very interested and helpful about the new CVID diagnosis. She didn't know anything about it, but our Immunologist sent her a packet with information. > > We have an IEP Revision meeting coming up so the nurse said she would have some stuff written up to add to his IEP. We agreed this would just be a starting point for adding to his IEP regarding the CVID since right now we won't have to add anything about excessive absence since he has no homework, grades or anything like that. > > I am wondering what exactly you all have in the IEP. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 9, 2011 Report Share Posted February 9, 2011 Wow! My son is only 4 so I haven't had this issue yet! But these are great ideas I never would have thought of them... On Feb 9, 2011 1:41 PM, " Ursula Holleman " <uahollem@...> wrote: > Abscences > Water at desk > Able to go to the bathroom as needed > Hepa filter in room > Sanitizer on entering room each time > Extra time for tests - grew out of that > Notification of grade level illnesses > Set of school books just for the house > > Ursula - mom to Macey (15,CVID) > > > On Feb 9, 2011, at 1:06 PM, " April " <n2katz2003@...> wrote: > >> Does anybody have an IEP for their child because of the PID? My son is 3.5 years old and attends a special ed preschool due to various delays so he has an IEP already. >> >> I met with the nurse at his school the other day and she asked a bunch of questions and seemed very interested and helpful about the new CVID diagnosis. She didn't know anything about it, but our Immunologist sent her a packet with information. >> >> We have an IEP Revision meeting coming up so the nurse said she would have some stuff written up to add to his IEP. We agreed this would just be a starting point for adding to his IEP regarding the CVID since right now we won't have to add anything about excessive absence since he has no homework, grades or anything like that. >> >> I am wondering what exactly you all have in the IEP. >> >> > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 9, 2011 Report Share Posted February 9, 2011 Wow! My son is only 4 so I haven't had this issue yet! But these are great ideas I never would have thought of them... On Feb 9, 2011 1:41 PM, " Ursula Holleman " <uahollem@...> wrote: > Abscences > Water at desk > Able to go to the bathroom as needed > Hepa filter in room > Sanitizer on entering room each time > Extra time for tests - grew out of that > Notification of grade level illnesses > Set of school books just for the house > > Ursula - mom to Macey (15,CVID) > > > On Feb 9, 2011, at 1:06 PM, " April " <n2katz2003@...> wrote: > >> Does anybody have an IEP for their child because of the PID? My son is 3.5 years old and attends a special ed preschool due to various delays so he has an IEP already. >> >> I met with the nurse at his school the other day and she asked a bunch of questions and seemed very interested and helpful about the new CVID diagnosis. She didn't know anything about it, but our Immunologist sent her a packet with information. >> >> We have an IEP Revision meeting coming up so the nurse said she would have some stuff written up to add to his IEP. We agreed this would just be a starting point for adding to his IEP regarding the CVID since right now we won't have to add anything about excessive absence since he has no homework, grades or anything like that. >> >> I am wondering what exactly you all have in the IEP. >> >> > > > Quote Link to comment Share on other sites More sharing options...
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