Guest guest Posted September 27, 2006 Report Share Posted September 27, 2006 Hi , Welcome to the world of the painstakingly slow crawl of dealing with the school distict. Seems like there are just continuing delays and testing and indecisiveness, etc. I too just survived our 504 meeting. Finally, after 6 years, we have a sound field system written in the 504. I am too thrilled for words. We basically reviewed all the tests from last year and determined that we had no educational delays that would warrant special ed status, and thus an IEP. I still have some concerns, but over all, he has progressed in the areas of concern, and his new teacher feels like he will be just fine. (He is a July 30 baby, so is always the youngest in his class) So, I am going with that, for the moment. Most joyfully, I report that he is doing a great job of advocating for himself in the classroom, choosing seating that allows him oral access to information, moving to maintain speach reading etc. The teacher has a workshop model of teaching, which it turns out is just fabulous for my son, and she uses tons of visual aids when teaching, as well as writes the homework on the board, and the daily schedule. She has them do the daily planner writing at the begining of the day, instead of the end when they are all tired, but my son exceptionally so. So all in all he is off to a great start. I have to say, that the teacher has not used the sound field system yet (45 days after school has started, although it was installed over the summer, it was not officially in the 504 plan, thus no plan to show the teacher how it worked) and after discussing all the succeses my son was having, thought there was no need to use it, nor write it in the 504 plan. THANKFULLY, our TOD consultant was there, and she quickly discussed the need for it, to reduce auditory fatigue, etc. I also produced a copy of Carol Flexer's article for her to review. The team concurred and wrote it in! Now, I will wait and see if it will be used or not. I really hope she tries it, as I think she will see what a great tool it can be. Anyhow, just thought I would share my 504 experience. Can't say enough how glad I am to have a Hearing Loss Professional not employed by the school district to consult and advise. And a happy new school year to all.... Tracey > > Hello Again- > > I just wanted to thank everyone again for the replies and ideas. And > let you know that I survived the IEP/504 meeting, although did not get > resolution. As it happens, land law allows that the school system > does not have to accept medical evaluations from " outside " sources, no > matter the quality of that source. So we ordered a new audiology and > speech assessment done by the school system and so are delayed in > making decisions. The special ed representatives did say they see > Ruby as a 504 kid, because she is so bright and not behind > academically. While that is a common arguement, it is clear that IDEA > applies whenever the diability affects learning and provides for > appropriate education, so many courts have held that using simply > academic level is not the issue. What is appropriate education for > Ruby includes more than just being able to score well on their > ratings. She should be progressing consistently and also making gains > in things that are age appropriate like participating and initiating > interaction with peers, gathering skills for independent living, etc. > Really, anything that has a curricular impact relates to learning, it > seems to me. We'll see how it all shakes out, but I was pleased that > the members of the IEP team that were present were very nice to work > with and at least willing to think about my ideas. Of course, the > head of the team was not there (with no prior notification or reason > given), so we'll see how it goes when he arrives at the next meeting > (75 days hence!). > > In the meantime, it is an interesting process. When I have new > information about audiology and speech, I am sure I will be back here > looking for more input. Until then, I continue to appreciate reading > all your posts and seeing what a great community of advocates is out > there looking out for their kids. > > Thanks again, > , father to Ruby (and Ethan, age 16 months... who is going to > give *me* hearing loss if he doesn't start chilling out soon!) > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 27, 2006 Report Share Posted September 27, 2006 Hi Tracey - congratulations on the start of a good year! I do worry, though, about the teacher not using the soundfield system. Sounds like she's out of compliance and needs to work with it til she gets it! Barbara traceyandynathen wrote: > Hi , > Welcome to the world of the painstakingly slow crawl of dealing with > the school distict. Seems like there are just continuing delays and > testing and indecisiveness, etc. > > > I too just survived our 504 meeting. Finally, after 6 years, we > have a sound field system written in the 504. I am too thrilled for > words. > > We basically reviewed all the tests from last year and determined > that we had no educational delays that would warrant special ed > status, and thus an IEP. I still have some concerns, but over all, > he has progressed in the areas of concern, and his new teacher feels > like he will be just fine. (He is a July 30 baby, so is always the > youngest in his class) So, I am going with that, for the moment. > > Most joyfully, I report that he is doing a great job of advocating > for himself in the classroom, choosing seating that allows him oral > access to information, moving to maintain speach reading etc. The > teacher has a workshop model of teaching, which it turns out is just > fabulous for my son, and she uses tons of visual aids when teaching, > as well as writes the homework on the board, and the daily > schedule. She has them do the daily planner writing at the begining > of the day, instead of the end when they are all tired, but my son > exceptionally so. So all in all he is off to a great start. > > I have to say, that the teacher has not used the sound field system > yet (45 days after school has started, although it was installed > over the summer, it was not officially in the 504 plan, thus no plan > to show the teacher how it worked) and after discussing all the > succeses my son was having, thought there was no need to use it, nor > write it in the 504 plan. THANKFULLY, our TOD consultant was there, > and she quickly discussed the need for it, to reduce auditory > fatigue, etc. I also produced a copy of Carol Flexer's article for > her to review. The team concurred and wrote it in! Now, I will > wait and see if it will be used or not. I really hope she tries it, > as I think she will see what a great tool it can be. > > Anyhow, just thought I would share my 504 experience. Can't say > enough how glad I am to have a Hearing Loss Professional not > employed by the school district to consult and advise. > > And a happy new school year to all.... > Tracey > > > > > > > > > > >> Hello Again- >> >> I just wanted to thank everyone again for the replies and ideas. >> > And > >> let you know that I survived the IEP/504 meeting, although did not >> > get > >> resolution. As it happens, land law allows that the school >> > system > >> does not have to accept medical evaluations from " outside " >> > sources, no > >> matter the quality of that source. So we ordered a new audiology >> > and > >> speech assessment done by the school system and so are delayed in >> making decisions. The special ed representatives did say they see >> Ruby as a 504 kid, because she is so bright and not behind >> academically. While that is a common arguement, it is clear that >> > IDEA > >> applies whenever the diability affects learning and provides for >> appropriate education, so many courts have held that using simply >> academic level is not the issue. What is appropriate education for >> Ruby includes more than just being able to score well on their >> ratings. She should be progressing consistently and also making >> > gains > >> in things that are age appropriate like participating and >> > initiating > >> interaction with peers, gathering skills for independent living, >> > etc. > >> Really, anything that has a curricular impact relates to >> > learning, it > >> seems to me. We'll see how it all shakes out, but I was pleased >> > that > >> the members of the IEP team that were present were very nice to >> > work > >> with and at least willing to think about my ideas. Of course, the >> head of the team was not there (with no prior notification or >> > reason > >> given), so we'll see how it goes when he arrives at the next >> > meeting > >> (75 days hence!). >> >> In the meantime, it is an interesting process. When I have new >> information about audiology and speech, I am sure I will be back >> > here > >> looking for more input. Until then, I continue to appreciate >> > reading > >> all your posts and seeing what a great community of advocates is >> > out > >> there looking out for their kids. >> >> Thanks again, >> , father to Ruby (and Ethan, age 16 months... who is going to >> give *me* hearing loss if he doesn't start chilling out soon!) >> >> > > > > > > > > All messages posted to this list are private and confidential. Each post is the intellectual property of the author and therefore subject to copyright restrictions. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 27, 2006 Report Share Posted September 27, 2006 Hi Tracey - congratulations on the start of a good year! I do worry, though, about the teacher not using the soundfield system. Sounds like she's out of compliance and needs to work with it til she gets it! Barbara traceyandynathen wrote: > Hi , > Welcome to the world of the painstakingly slow crawl of dealing with > the school distict. Seems like there are just continuing delays and > testing and indecisiveness, etc. > > > I too just survived our 504 meeting. Finally, after 6 years, we > have a sound field system written in the 504. I am too thrilled for > words. > > We basically reviewed all the tests from last year and determined > that we had no educational delays that would warrant special ed > status, and thus an IEP. I still have some concerns, but over all, > he has progressed in the areas of concern, and his new teacher feels > like he will be just fine. (He is a July 30 baby, so is always the > youngest in his class) So, I am going with that, for the moment. > > Most joyfully, I report that he is doing a great job of advocating > for himself in the classroom, choosing seating that allows him oral > access to information, moving to maintain speach reading etc. The > teacher has a workshop model of teaching, which it turns out is just > fabulous for my son, and she uses tons of visual aids when teaching, > as well as writes the homework on the board, and the daily > schedule. She has them do the daily planner writing at the begining > of the day, instead of the end when they are all tired, but my son > exceptionally so. So all in all he is off to a great start. > > I have to say, that the teacher has not used the sound field system > yet (45 days after school has started, although it was installed > over the summer, it was not officially in the 504 plan, thus no plan > to show the teacher how it worked) and after discussing all the > succeses my son was having, thought there was no need to use it, nor > write it in the 504 plan. THANKFULLY, our TOD consultant was there, > and she quickly discussed the need for it, to reduce auditory > fatigue, etc. I also produced a copy of Carol Flexer's article for > her to review. The team concurred and wrote it in! Now, I will > wait and see if it will be used or not. I really hope she tries it, > as I think she will see what a great tool it can be. > > Anyhow, just thought I would share my 504 experience. Can't say > enough how glad I am to have a Hearing Loss Professional not > employed by the school district to consult and advise. > > And a happy new school year to all.... > Tracey > > > > > > > > > > >> Hello Again- >> >> I just wanted to thank everyone again for the replies and ideas. >> > And > >> let you know that I survived the IEP/504 meeting, although did not >> > get > >> resolution. As it happens, land law allows that the school >> > system > >> does not have to accept medical evaluations from " outside " >> > sources, no > >> matter the quality of that source. So we ordered a new audiology >> > and > >> speech assessment done by the school system and so are delayed in >> making decisions. The special ed representatives did say they see >> Ruby as a 504 kid, because she is so bright and not behind >> academically. While that is a common arguement, it is clear that >> > IDEA > >> applies whenever the diability affects learning and provides for >> appropriate education, so many courts have held that using simply >> academic level is not the issue. What is appropriate education for >> Ruby includes more than just being able to score well on their >> ratings. She should be progressing consistently and also making >> > gains > >> in things that are age appropriate like participating and >> > initiating > >> interaction with peers, gathering skills for independent living, >> > etc. > >> Really, anything that has a curricular impact relates to >> > learning, it > >> seems to me. We'll see how it all shakes out, but I was pleased >> > that > >> the members of the IEP team that were present were very nice to >> > work > >> with and at least willing to think about my ideas. Of course, the >> head of the team was not there (with no prior notification or >> > reason > >> given), so we'll see how it goes when he arrives at the next >> > meeting > >> (75 days hence!). >> >> In the meantime, it is an interesting process. When I have new >> information about audiology and speech, I am sure I will be back >> > here > >> looking for more input. Until then, I continue to appreciate >> > reading > >> all your posts and seeing what a great community of advocates is >> > out > >> there looking out for their kids. >> >> Thanks again, >> , father to Ruby (and Ethan, age 16 months... who is going to >> give *me* hearing loss if he doesn't start chilling out soon!) >> >> > > > > > > > > All messages posted to this list are private and confidential. Each post is the intellectual property of the author and therefore subject to copyright restrictions. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 27, 2006 Report Share Posted September 27, 2006 Hi Tracey - congratulations on the start of a good year! I do worry, though, about the teacher not using the soundfield system. Sounds like she's out of compliance and needs to work with it til she gets it! Barbara traceyandynathen wrote: > Hi , > Welcome to the world of the painstakingly slow crawl of dealing with > the school distict. Seems like there are just continuing delays and > testing and indecisiveness, etc. > > > I too just survived our 504 meeting. Finally, after 6 years, we > have a sound field system written in the 504. I am too thrilled for > words. > > We basically reviewed all the tests from last year and determined > that we had no educational delays that would warrant special ed > status, and thus an IEP. I still have some concerns, but over all, > he has progressed in the areas of concern, and his new teacher feels > like he will be just fine. (He is a July 30 baby, so is always the > youngest in his class) So, I am going with that, for the moment. > > Most joyfully, I report that he is doing a great job of advocating > for himself in the classroom, choosing seating that allows him oral > access to information, moving to maintain speach reading etc. The > teacher has a workshop model of teaching, which it turns out is just > fabulous for my son, and she uses tons of visual aids when teaching, > as well as writes the homework on the board, and the daily > schedule. She has them do the daily planner writing at the begining > of the day, instead of the end when they are all tired, but my son > exceptionally so. So all in all he is off to a great start. > > I have to say, that the teacher has not used the sound field system > yet (45 days after school has started, although it was installed > over the summer, it was not officially in the 504 plan, thus no plan > to show the teacher how it worked) and after discussing all the > succeses my son was having, thought there was no need to use it, nor > write it in the 504 plan. THANKFULLY, our TOD consultant was there, > and she quickly discussed the need for it, to reduce auditory > fatigue, etc. I also produced a copy of Carol Flexer's article for > her to review. The team concurred and wrote it in! Now, I will > wait and see if it will be used or not. I really hope she tries it, > as I think she will see what a great tool it can be. > > Anyhow, just thought I would share my 504 experience. Can't say > enough how glad I am to have a Hearing Loss Professional not > employed by the school district to consult and advise. > > And a happy new school year to all.... > Tracey > > > > > > > > > > >> Hello Again- >> >> I just wanted to thank everyone again for the replies and ideas. >> > And > >> let you know that I survived the IEP/504 meeting, although did not >> > get > >> resolution. As it happens, land law allows that the school >> > system > >> does not have to accept medical evaluations from " outside " >> > sources, no > >> matter the quality of that source. So we ordered a new audiology >> > and > >> speech assessment done by the school system and so are delayed in >> making decisions. The special ed representatives did say they see >> Ruby as a 504 kid, because she is so bright and not behind >> academically. While that is a common arguement, it is clear that >> > IDEA > >> applies whenever the diability affects learning and provides for >> appropriate education, so many courts have held that using simply >> academic level is not the issue. What is appropriate education for >> Ruby includes more than just being able to score well on their >> ratings. She should be progressing consistently and also making >> > gains > >> in things that are age appropriate like participating and >> > initiating > >> interaction with peers, gathering skills for independent living, >> > etc. > >> Really, anything that has a curricular impact relates to >> > learning, it > >> seems to me. We'll see how it all shakes out, but I was pleased >> > that > >> the members of the IEP team that were present were very nice to >> > work > >> with and at least willing to think about my ideas. Of course, the >> head of the team was not there (with no prior notification or >> > reason > >> given), so we'll see how it goes when he arrives at the next >> > meeting > >> (75 days hence!). >> >> In the meantime, it is an interesting process. When I have new >> information about audiology and speech, I am sure I will be back >> > here > >> looking for more input. Until then, I continue to appreciate >> > reading > >> all your posts and seeing what a great community of advocates is >> > out > >> there looking out for their kids. >> >> Thanks again, >> , father to Ruby (and Ethan, age 16 months... who is going to >> give *me* hearing loss if he doesn't start chilling out soon!) >> >> > > > > > > > > All messages posted to this list are private and confidential. Each post is the intellectual property of the author and therefore subject to copyright restrictions. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 27, 2006 Report Share Posted September 27, 2006 Thanks Jill. I completely agree and am prepared to do so and am just thrilled to finally have it in writing so I have a leg to stand on! I truly am not terrible worried about it in his class now, but am terrified of what could happen next year in Middle School without it. A big reason why I wanted it added this year. Side note: I wish I could join you all on your fun day! > > > In a message dated 9/27/2006 6:28:18 P.M. Eastern Standard Time, > tracey@... writes: > > Now, I will > wait and see if it will be used or not. I really hope she tries it, > as I think she will see what a great tool it can be. > > > > > > If she doesn't use it, then the school district is out of compliance. So, if > she doesn't " try " it soon, then I'd be making noise, and keeping track of > every day it's not used after having been written into the official plan. Wait > and watch is okay for the moment, but if the teacher ignores the equipment for > much longer, then I'd be making some loud noises. > > Best -- Jill > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 27, 2006 Report Share Posted September 27, 2006 Actully, since yesterday was the first day of having it written into the plan, today is the first day that she would be out of compliance, and I am prepared to give her a day or two to get it going. I can't wait to get home to ask my son if she used it today or not. Honestly, after the TOD jumped in and explained things further, I think she was committed to giving it a try. I know I can force the issue, but this team is so cooperative (although rather ignorant) that I hate to have that antagonism going unless I have to. But I am not afraid to do what I have to do. I just don't want everyone crossing the street when they see me coming, like they do Jill! (just kidding) And I really do just love the 5th grade teacher we have. She just pulsates with energy and excitement about all the things the 5th graders are learning and my son just clicked with her right away and loves school again. Such a huge relief after the emotional, traumatic last year. I really think she will absorb all the new information we have given her and embrace doing everything she can to help my son. Gosh, I knew about my son's hearing loss for almost 4 years before I figured out that I needed to do anything to help him, and I am his Mom. But I have her on the crash course and expect her to get it by about a week. Thank you, Thank you to you all again. I know I wuoldn't be informed and ready to tackle all of this with out your incredibley generous sharing of your experiences. And darn Yahoo for not having spell check! Tracey > > > >> Hello Again- > >> > >> I just wanted to thank everyone again for the replies and ideas. > >> > > And > > > >> let you know that I survived the IEP/504 meeting, although did not > >> > > get > > > >> resolution. As it happens, land law allows that the school > >> > > system > > > >> does not have to accept medical evaluations from " outside " > >> > > sources, no > > > >> matter the quality of that source. So we ordered a new audiology > >> > > and > > > >> speech assessment done by the school system and so are delayed in > >> making decisions. The special ed representatives did say they see > >> Ruby as a 504 kid, because she is so bright and not behind > >> academically. While that is a common arguement, it is clear that > >> > > IDEA > > > >> applies whenever the diability affects learning and provides for > >> appropriate education, so many courts have held that using simply > >> academic level is not the issue. What is appropriate education for > >> Ruby includes more than just being able to score well on their > >> ratings. She should be progressing consistently and also making > >> > > gains > > > >> in things that are age appropriate like participating and > >> > > initiating > > > >> interaction with peers, gathering skills for independent living, > >> > > etc. > > > >> Really, anything that has a curricular impact relates to > >> > > learning, it > > > >> seems to me. We'll see how it all shakes out, but I was pleased > >> > > that > > > >> the members of the IEP team that were present were very nice to > >> > > work > > > >> with and at least willing to think about my ideas. Of course, the > >> head of the team was not there (with no prior notification or > >> > > reason > > > >> given), so we'll see how it goes when he arrives at the next > >> > > meeting > > > >> (75 days hence!). > >> > >> In the meantime, it is an interesting process. When I have new > >> information about audiology and speech, I am sure I will be back > >> > > here > > > >> looking for more input. Until then, I continue to appreciate > >> > > reading > > > >> all your posts and seeing what a great community of advocates is > >> > > out > > > >> there looking out for their kids. > >> > >> Thanks again, > >> , father to Ruby (and Ethan, age 16 months... who is going to > >> give *me* hearing loss if he doesn't start chilling out soon!) > >> > >> > > > > > > > > > > > > > > > > All messages posted to this list are private and confidential. Each post is the intellectual property of the author and therefore subject to copyright restrictions. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 27, 2006 Report Share Posted September 27, 2006 ha ha ha - I'm thinking " and proud of it! " . So how far is Norwalk - that's Connecticut? - from Hanover NH. I guess I could Mapquest it... JillcWood@... wrote: > > In a message dated 9/27/2006 7:49:50 P.M. Eastern Standard Time, > tracey@... writes: > > I just don't want > everyone crossing the street when they see me coming, like they do > Jill! (just kidding) > > > > > Hey, I worked really hard to be this disliked, dare I say " despised " by so > many. It's not easy, ya know, it's taken lots of hard work to get me where I > am today. > > LOL!! > Jill > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 27, 2006 Report Share Posted September 27, 2006 Actually, this is yet another good line offered by ...let me guess....Baltimore County/City, Harford County? Actually, IDEA supercedes COMAR regs (land regs). There is absolutely NOTHING that says that the school system must test your child. Did they provide legal citations proving these alleged statements of fact. I can see by your email that you're at Hopkins. If you'd like someone who has battled this for nearly 16 years with various Counties as an advocate for my son and for others with special ed needs, mainly hearing loss, I'd be happy to discuss the " reality " of the law vs the often willful misapplication of the law by the local school systems. I can also provide you with the strategy with which to battle these inaccuracies. If you'd like, I can give you my phone number off list as I'm in Towson -------------- Original message -------------- Hello Again- I just wanted to thank everyone again for the replies and ideas. And let you know that I survived the IEP/504 meeting, although did not get resolution. As it happens, land law allows that the school system does not have to accept medical evaluations from " outside " sources, no matter the quality of that source. So we ordered a new audiology and speech assessment done by the school system and so are delayed in making decisions. The special ed representatives did say they see Ruby as a 504 kid, because she is so bright and not behind academically. While that is a common arguement, it is clear that IDEA applies whenever the diability affects learning and provides for appropriate education, so many courts have held that using simply academic level is not the issue. What is appropriate education for Ruby includes more than just being able to score well on their ratings. She should be progressing consistently and also making gains in things that are age appropriate like participating and initiating interaction with peers, gathering skills for independent living, etc. Really, anything that has a curricular impact relates to learning, it seems to me. We'll see how it all shakes out, but I was pleased that the members of the IEP team that were present were very nice to work with and at least willing to think about my ideas. Of course, the head of the team was not there (with no prior notification or reason given), so we'll see how it goes when he arrives at the next meeting (75 days hence!). In the meantime, it is an interesting process. When I have new information about audiology and speech, I am sure I will be back here looking for more input. Until then, I continue to appreciate reading all your posts and seeing what a great community of advocates is out there looking out for their kids. Thanks again, , father to Ruby (and Ethan, age 16 months... who is going to give *me* hearing loss if he doesn't start chilling out soon!) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 28, 2006 Report Share Posted September 28, 2006 , this is an article that I got from another list that deals with special ed law... I think it addresses part of your situation. Let me know how it goes. I think we will be facing similar problems with Elias. Bonnie --------------------------------------------------------------------------------\ ---------------------------------------------------- Denial of Eligibility Because of Gifted Intellectual Ability and/or Lack of Failure The U.S. Department of Education, in a written response to questions from the Learning Disabilities Association of North Carolina, stated that " ...each child who is evaluated for a suspected learning disability must be measured against his or her own expected performance, and not against some arbitrary general standard. " As required by Part B regulation (34 CFR §§300.540-300.543), the multidisciplinary evaluation team is responsible for determining if a severe discrepancy exists between a student's ability and performance. Under Part B of IDEA and Part B regulations there are no " exclusions based on intelligence level in determining eligibility. " In other words, a student cannot be excluded from consideration of eligibility for special education services solely on the basis of a high IQ; no child's IQ can be too high for that child to be considered for eligibility for special education services -- even an intellectually gifted student may be considered for eligibility for special education. In order to qualify as having a specific learning disability, the student, according to Part B of IDEA and Part B regulations, must have a severe discrepancy between achievement and intellectual ability " in one or more of the following areas: oral expression, listening comprehension, written expression, basic reading skill, reading comprehension, mathematics calculation, or mathematics reasoning. " Intellectual ability is determined by administration of intelligence or IQ test(s). Achievement is determined by administration of tests designed to measure basic reading skill and comprehension, math computational and reasoning skills, and the ability of the child to express his/her ideas in writing. Oral expression and listening comprehension are generally determined by giving speech and language tests. Scores earned on achievement and IQ tests are then compared. In order to be eligible for special education services, the multidisciplinary team must determine if the student has an " impairment " or disability which " adversely affects educational performance " 34 CFR §300.7 ( (1) - ( (13). In a letter to M. Lybarger, Ed.D., dated September 14, 1990, the Department of Education described " educational performance " as different for each child, " determined on an individual basis, " and " includ(ing) non-academic and academic skills. " In other words, a student with suspected learning disabilities must need special education and related services in order to qualify for those services. A multidisciplinary team may find a child has a specific learning disability if " the child does not achieve commensurate with his or her age and ability levels in one or more of the areas listed in paragraph (a) (2) of this section, when provided with learning experiences appropriate for the child's age and ability levels ... " 34 CFR §300.541 (a) (1). The Department of Education, in its letter to LDA of North Carolina, wrote that it is " generally " appropriate for the multidisciplinary team to include in its written report (to determine eligibility) information regarding " outside or extra " instructional help or support which " may indicate the child's current educational achievements reflects the service augmentation, not what the child's achievement would be without such help. " Such information should be considered by the team in deciding if the child has " a severe discrepancy between achievement and ability that is not correctable without special education and related services. " If, for example, a student with an IQ of 125 and significantly lower achievement scores maintains passing or even exemplary grades, the team should consider whether or not the student achieves only because of special assistance or support. If the student receives no special help, the multidisciplinary team might conclude that student would not need special education. If, on the other hand, the student has tutoring several times a week, works for three to five hours each night on homework with parental assistance, and must have extra time to complete tests in order to pass or maintain a certain grade level, that student might be considered to have a " specific learning disability. " His/her grades may reflect all the assistance the student is getting rather than the student's actual achievement level. (Reference: Letter of Clarification from Hehir, Director, Office of Special Education Programs, to Ms. M. Lillie, and Felton, Ph.D., Learning Disabilities Association of North Carolina, Inc., dated April 5, 1995. Portions of the letter have been bolded for emphasis.) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 28, 2006 Report Share Posted September 28, 2006 , this is an article that I got from another list that deals with special ed law... I think it addresses part of your situation. Let me know how it goes. I think we will be facing similar problems with Elias. Bonnie --------------------------------------------------------------------------------\ ---------------------------------------------------- Denial of Eligibility Because of Gifted Intellectual Ability and/or Lack of Failure The U.S. Department of Education, in a written response to questions from the Learning Disabilities Association of North Carolina, stated that " ...each child who is evaluated for a suspected learning disability must be measured against his or her own expected performance, and not against some arbitrary general standard. " As required by Part B regulation (34 CFR §§300.540-300.543), the multidisciplinary evaluation team is responsible for determining if a severe discrepancy exists between a student's ability and performance. Under Part B of IDEA and Part B regulations there are no " exclusions based on intelligence level in determining eligibility. " In other words, a student cannot be excluded from consideration of eligibility for special education services solely on the basis of a high IQ; no child's IQ can be too high for that child to be considered for eligibility for special education services -- even an intellectually gifted student may be considered for eligibility for special education. In order to qualify as having a specific learning disability, the student, according to Part B of IDEA and Part B regulations, must have a severe discrepancy between achievement and intellectual ability " in one or more of the following areas: oral expression, listening comprehension, written expression, basic reading skill, reading comprehension, mathematics calculation, or mathematics reasoning. " Intellectual ability is determined by administration of intelligence or IQ test(s). Achievement is determined by administration of tests designed to measure basic reading skill and comprehension, math computational and reasoning skills, and the ability of the child to express his/her ideas in writing. Oral expression and listening comprehension are generally determined by giving speech and language tests. Scores earned on achievement and IQ tests are then compared. In order to be eligible for special education services, the multidisciplinary team must determine if the student has an " impairment " or disability which " adversely affects educational performance " 34 CFR §300.7 ( (1) - ( (13). In a letter to M. Lybarger, Ed.D., dated September 14, 1990, the Department of Education described " educational performance " as different for each child, " determined on an individual basis, " and " includ(ing) non-academic and academic skills. " In other words, a student with suspected learning disabilities must need special education and related services in order to qualify for those services. A multidisciplinary team may find a child has a specific learning disability if " the child does not achieve commensurate with his or her age and ability levels in one or more of the areas listed in paragraph (a) (2) of this section, when provided with learning experiences appropriate for the child's age and ability levels ... " 34 CFR §300.541 (a) (1). The Department of Education, in its letter to LDA of North Carolina, wrote that it is " generally " appropriate for the multidisciplinary team to include in its written report (to determine eligibility) information regarding " outside or extra " instructional help or support which " may indicate the child's current educational achievements reflects the service augmentation, not what the child's achievement would be without such help. " Such information should be considered by the team in deciding if the child has " a severe discrepancy between achievement and ability that is not correctable without special education and related services. " If, for example, a student with an IQ of 125 and significantly lower achievement scores maintains passing or even exemplary grades, the team should consider whether or not the student achieves only because of special assistance or support. If the student receives no special help, the multidisciplinary team might conclude that student would not need special education. If, on the other hand, the student has tutoring several times a week, works for three to five hours each night on homework with parental assistance, and must have extra time to complete tests in order to pass or maintain a certain grade level, that student might be considered to have a " specific learning disability. " His/her grades may reflect all the assistance the student is getting rather than the student's actual achievement level. (Reference: Letter of Clarification from Hehir, Director, Office of Special Education Programs, to Ms. M. Lillie, and Felton, Ph.D., Learning Disabilities Association of North Carolina, Inc., dated April 5, 1995. Portions of the letter have been bolded for emphasis.) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 28, 2006 Report Share Posted September 28, 2006 , this is an article that I got from another list that deals with special ed law... I think it addresses part of your situation. Let me know how it goes. I think we will be facing similar problems with Elias. Bonnie --------------------------------------------------------------------------------\ ---------------------------------------------------- Denial of Eligibility Because of Gifted Intellectual Ability and/or Lack of Failure The U.S. Department of Education, in a written response to questions from the Learning Disabilities Association of North Carolina, stated that " ...each child who is evaluated for a suspected learning disability must be measured against his or her own expected performance, and not against some arbitrary general standard. " As required by Part B regulation (34 CFR §§300.540-300.543), the multidisciplinary evaluation team is responsible for determining if a severe discrepancy exists between a student's ability and performance. Under Part B of IDEA and Part B regulations there are no " exclusions based on intelligence level in determining eligibility. " In other words, a student cannot be excluded from consideration of eligibility for special education services solely on the basis of a high IQ; no child's IQ can be too high for that child to be considered for eligibility for special education services -- even an intellectually gifted student may be considered for eligibility for special education. In order to qualify as having a specific learning disability, the student, according to Part B of IDEA and Part B regulations, must have a severe discrepancy between achievement and intellectual ability " in one or more of the following areas: oral expression, listening comprehension, written expression, basic reading skill, reading comprehension, mathematics calculation, or mathematics reasoning. " Intellectual ability is determined by administration of intelligence or IQ test(s). Achievement is determined by administration of tests designed to measure basic reading skill and comprehension, math computational and reasoning skills, and the ability of the child to express his/her ideas in writing. Oral expression and listening comprehension are generally determined by giving speech and language tests. Scores earned on achievement and IQ tests are then compared. In order to be eligible for special education services, the multidisciplinary team must determine if the student has an " impairment " or disability which " adversely affects educational performance " 34 CFR §300.7 ( (1) - ( (13). In a letter to M. Lybarger, Ed.D., dated September 14, 1990, the Department of Education described " educational performance " as different for each child, " determined on an individual basis, " and " includ(ing) non-academic and academic skills. " In other words, a student with suspected learning disabilities must need special education and related services in order to qualify for those services. A multidisciplinary team may find a child has a specific learning disability if " the child does not achieve commensurate with his or her age and ability levels in one or more of the areas listed in paragraph (a) (2) of this section, when provided with learning experiences appropriate for the child's age and ability levels ... " 34 CFR §300.541 (a) (1). The Department of Education, in its letter to LDA of North Carolina, wrote that it is " generally " appropriate for the multidisciplinary team to include in its written report (to determine eligibility) information regarding " outside or extra " instructional help or support which " may indicate the child's current educational achievements reflects the service augmentation, not what the child's achievement would be without such help. " Such information should be considered by the team in deciding if the child has " a severe discrepancy between achievement and ability that is not correctable without special education and related services. " If, for example, a student with an IQ of 125 and significantly lower achievement scores maintains passing or even exemplary grades, the team should consider whether or not the student achieves only because of special assistance or support. If the student receives no special help, the multidisciplinary team might conclude that student would not need special education. If, on the other hand, the student has tutoring several times a week, works for three to five hours each night on homework with parental assistance, and must have extra time to complete tests in order to pass or maintain a certain grade level, that student might be considered to have a " specific learning disability. " His/her grades may reflect all the assistance the student is getting rather than the student's actual achievement level. (Reference: Letter of Clarification from Hehir, Director, Office of Special Education Programs, to Ms. M. Lillie, and Felton, Ph.D., Learning Disabilities Association of North Carolina, Inc., dated April 5, 1995. Portions of the letter have been bolded for emphasis.) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 28, 2006 Report Share Posted September 28, 2006 This is great. Thanks very much. I am on my way out of town, but am going to print it and read it and may reply more on Monday. Thanks! > > , this is an article that I got from another list that deals with > special ed law... I think it addresses part of your situation. Let me know > how it goes. I think we will be facing similar problems with > Elias. > > Bonnie > > --------------------------------------------------------------------------------\ ---------------------------------------------------- > Denial of Eligibility Because of Gifted Intellectual Ability and/or Lack of > Failure > > > The U.S. Department of Education, in a written response to questions from > the Learning Disabilities Association of North Carolina, stated that > " ...each child who is evaluated for a suspected learning disability must be > measured against his or her own expected performance, and not against some > arbitrary general standard. " As required by Part B regulation (34 CFR > §§300.540-300.543), the multidisciplinary evaluation team is responsible for > determining if a severe discrepancy exists between a student's ability and > performance. Under Part B of IDEA and Part B regulations there are no > " exclusions based on intelligence level in determining eligibility. " In > other words, a student cannot be excluded from consideration of eligibility > for special education services solely on the basis of a high IQ; no child's > IQ can be too high for that child to be considered for eligibility for > special education services -- even an intellectually gifted student may be > considered for eligibility for special education. > > In order to qualify as having a specific learning disability, the student, > according to Part B of IDEA and Part B regulations, must have a severe > discrepancy between achievement and intellectual ability " in one or more of > the following areas: oral expression, listening comprehension, written > expression, basic reading skill, reading comprehension, mathematics > calculation, or mathematics reasoning. " Intellectual ability is determined > by administration of intelligence or IQ test(s). Achievement is determined > by administration of tests designed to measure basic reading skill and > comprehension, math computational and reasoning skills, and the ability of > the child to express his/her ideas in writing. Oral expression and listening > comprehension are generally determined by giving speech and language tests. > Scores earned on achievement and IQ tests are then compared. > > In order to be eligible for special education services, the > multidisciplinary team must determine if the student has an " impairment " or > disability which " adversely affects educational performance " 34 CFR §300.7 > ( (1) - ( (13). In a letter to M. Lybarger, Ed.D., dated > September 14, 1990, the Department of Education described " educational > performance " as different for each child, " determined on an individual > basis, " and " includ(ing) non-academic and academic skills. " In other words, > a student with suspected learning disabilities must need special education > and related services in order to qualify for those services. > > A multidisciplinary team may find a child has a specific learning disability > if " the child does not achieve commensurate with his or her age and ability > levels in one or more of the areas listed in paragraph (a) (2) of this > section, when provided with learning experiences appropriate for the child's > age and ability levels ... " 34 CFR §300.541 (a) (1). The Department of > Education, in its letter to LDA of North Carolina, wrote that it is > " generally " appropriate for the multidisciplinary team to include in its > written report (to determine eligibility) information regarding " outside or > extra " instructional help or support which " may indicate the child's current > educational achievements reflects the service augmentation, not what the > child's achievement would be without such help. " Such information should be > considered by the team in deciding if the child has " a severe discrepancy > between achievement and ability that is not correctable without special > education and related services. " If, for example, a student with an IQ of > 125 and significantly lower achievement scores maintains passing or even > exemplary grades, the team should consider whether or not the student > achieves only because of special assistance or support. If the student > receives no special help, the multidisciplinary team might conclude that > student would not need special education. If, on the other hand, the student > has tutoring several times a week, works for three to five hours each night > on homework with parental assistance, and must have extra time to complete > tests in order to pass or maintain a certain grade level, that student might > be considered to have a " specific learning disability. " His/her grades may > reflect all the assistance the student is getting rather than the student's > actual achievement level. > > (Reference: Letter of Clarification from Hehir, Director, Office of > Special Education Programs, to Ms. M. Lillie, and Felton, > Ph.D., Learning Disabilities Association of North Carolina, Inc., dated > April 5, 1995. Portions of the letter have been bolded for emphasis.) > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 28, 2006 Report Share Posted September 28, 2006 Hi Bonnie- She is about 10 months out of the second transplant. They do the neuropsych eval before so they have a baseline to evaluate the late effect impacts of exactly the things you mention (TBI, etc.). No doubt that the consent form for the TBI, with possibility of cognitive effects was the hardest to sign of the zillions I have signed. But it was the best option we had and so we sucked it up and did it. One nice thing is that the preliminary data from these levels of radiation have shown not actual dimunition in IQ in the small cohort they have followed for over five years. Without checking the protocol, I am not 100% sure of the timing for the next eval. I think it is at two years and I know that it is not valid to redo the eval before one year (having to do with the testing itself). At this point, there is nothing medically to be done to prevent the effects, so in a sense there is no rush. As for hearing loss, she saw plenty of cisplatin and carboplatin as well as the TBI and a few weeks of gentamicin and vancomicin which are, obviously, potentiall problematic. But only carbo once transplant started. Amazingly, she had no measureable hearing loss before transplant. The nurse practioneer actually thought she had the wrong audiology report. But in transplant she had carbo, TBI and some gent, plus maybe the previous stuff kicked in, so what can ya do? Interesting about Elias's late walking and low tone with no clear reason. Ruby was also in Early Intervention/Infants and Toddler, but the transition to regular IDEA/IEP stuff got botched up because she was hospitalized and in active treatment. We had an IEP in place, but it was canceled since we couldn't participate in any meetings and Ruby was in Philadelphia. I think I could have dealt with that and made things easier for the transition, but I was, obviously, pretty focused elsewhere. I have had many unchartible thoughts about the special ed folks here in Baltimore through our five years in the system! But it's a new day and I am hoping for better! Gotta run. Thanks- > > > > Hi Bonnie- > > > > Thanks for the reply and hello. In answer to your questions: Yes, I > > did find this list through you note on the ACOR Neuroblastoma list. > > Thanks. I have been reading this one a bit, but have been so busy and > > it is all such a new " language " to me, that I haven't been able to > > absorb it. But now I think it is time I get going up the learning > > curve about this hearing loss stuff! > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 28, 2006 Report Share Posted September 28, 2006 Hi Bonnie- She is about 10 months out of the second transplant. They do the neuropsych eval before so they have a baseline to evaluate the late effect impacts of exactly the things you mention (TBI, etc.). No doubt that the consent form for the TBI, with possibility of cognitive effects was the hardest to sign of the zillions I have signed. But it was the best option we had and so we sucked it up and did it. One nice thing is that the preliminary data from these levels of radiation have shown not actual dimunition in IQ in the small cohort they have followed for over five years. Without checking the protocol, I am not 100% sure of the timing for the next eval. I think it is at two years and I know that it is not valid to redo the eval before one year (having to do with the testing itself). At this point, there is nothing medically to be done to prevent the effects, so in a sense there is no rush. As for hearing loss, she saw plenty of cisplatin and carboplatin as well as the TBI and a few weeks of gentamicin and vancomicin which are, obviously, potentiall problematic. But only carbo once transplant started. Amazingly, she had no measureable hearing loss before transplant. The nurse practioneer actually thought she had the wrong audiology report. But in transplant she had carbo, TBI and some gent, plus maybe the previous stuff kicked in, so what can ya do? Interesting about Elias's late walking and low tone with no clear reason. Ruby was also in Early Intervention/Infants and Toddler, but the transition to regular IDEA/IEP stuff got botched up because she was hospitalized and in active treatment. We had an IEP in place, but it was canceled since we couldn't participate in any meetings and Ruby was in Philadelphia. I think I could have dealt with that and made things easier for the transition, but I was, obviously, pretty focused elsewhere. I have had many unchartible thoughts about the special ed folks here in Baltimore through our five years in the system! But it's a new day and I am hoping for better! Gotta run. Thanks- > > > > Hi Bonnie- > > > > Thanks for the reply and hello. In answer to your questions: Yes, I > > did find this list through you note on the ACOR Neuroblastoma list. > > Thanks. I have been reading this one a bit, but have been so busy and > > it is all such a new " language " to me, that I haven't been able to > > absorb it. But now I think it is time I get going up the learning > > curve about this hearing loss stuff! > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 29, 2006 Report Share Posted September 29, 2006 Ah yes, those consent forms. I remember having to sign off on those, and feeling so sad about the hearing loss part. We are a musical family, and it just seemed so awful. Now, of course, I am totally happy to be dealing with hearing aids instead of neuroblastoma (and I realize people on this list will not understand that but it is how it is). The hearing loss is correctable, and while I do have to keep on top of it, I just keep saying " We can deal with this! " . Elias is even signed up to take music lessons starting in a few weeks. And he is as musical as his brother. I have a friend here in Westchester whose daughter is a 4 year survivor of stage IV neuroblastoma. She didn't do TBI, but she had head radiation because of mets to her skull. She has to do the neuropsych every year because of it, but it never shows any learning problems. She also somehow escaped the hearing loss part - lucky kid! I think that may contribute to her lack of learning problems, actually. And cancelling the IEP because you couldn't get to the meetings was illegal, illegal, illegal! The law says clearly that meetings have to be scheduled so that the parents can participate. Our district tried to pull that one on us last spring. They scheduled the meeting right during an antibody round, and sent me a form that made it look like I had to take that meeting time or waive the right to be present. On the advice of friends who were knowledgable in this stuff, I took their stupid form and put my own note on it saying that the meeting had to be rescheduled so that I could be there. I totally understand how hard it is to focus on IEPs when your child is in treatment. Elias was entirely in the EI system during treatment, which is a little more parent-friendly. Even there, it was dicey - trying to get evals done when we had no idea if he would be inpatient or outpatient - oh boy was that hard. He actually had his speech eval done while he was inpatient at MSKCC. The EI person was willing to come there. And his motor skills eval was done in the evening after he had been discharged that morning. We called the evaluator on our drive home from MSKCC and said " can you come this evening? He's home, but we don't know for how long " . And she came. I think I set all that up mainly as a distraction from the horrors of chemo. It was something more hopeful to think about. Have a good trip, and I hope everything is working out well for you. Bonnie > > Hi Bonnie- > > She is about 10 months out of the second transplant. They do the > neuropsych eval before so they have a baseline to evaluate the late > effect impacts of exactly the things you mention (TBI, etc.). No > doubt that the consent form for the TBI, with possibility of cognitive > effects was the hardest to sign of the zillions I have signed. But it > was the best option we had and so we sucked it up and did it. One > nice thing is that the preliminary data from these levels of radiation > have shown not actual dimunition in IQ in the small cohort they have > followed for over five years. Without checking the protocol, I am not > 100% sure of the timing for the next eval. I think it is at two years > and I know that it is not valid to redo the eval before one year > (having to do with the testing itself). At this point, there is > nothing medically to be done to prevent the effects, so in a sense > there is no rush. > > As for hearing loss, she saw plenty of cisplatin and carboplatin as > well as the TBI and a few weeks of gentamicin and vancomicin which > are, obviously, potentiall problematic. But only carbo once > transplant started. Amazingly, she had no measureable hearing loss > before transplant. The nurse practioneer actually thought she had the > wrong audiology report. But in transplant she had carbo, TBI and some > gent, plus maybe the previous stuff kicked in, so what can ya do? > > Interesting about Elias's late walking and low tone with no clear > reason. Ruby was also in Early Intervention/Infants and Toddler, but > the transition to regular IDEA/IEP stuff got botched up because she > was hospitalized and in active treatment. We had an IEP in place, but > it was canceled since we couldn't participate in any meetings and Ruby > was in Philadelphia. I think I could have dealt with that and made > things easier for the transition, but I was, obviously, pretty focused > elsewhere. I have had many unchartible thoughts about the special ed > folks here in Baltimore through our five years in the system! But > it's a new day and I am hoping for better! > > Gotta run. > > Thanks- > > > > > > > > > Hi Bonnie- > > > > > > Thanks for the reply and hello. In answer to your questions: Yes, I > > > did find this list through you note on the ACOR Neuroblastoma list. > > > Thanks. I have been reading this one a bit, but have been so busy and > > > it is all such a new " language " to me, that I haven't been able to > > > absorb it. But now I think it is time I get going up the learning > > > curve about this hearing loss stuff! > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 29, 2006 Report Share Posted September 29, 2006 Ah yes, those consent forms. I remember having to sign off on those, and feeling so sad about the hearing loss part. We are a musical family, and it just seemed so awful. Now, of course, I am totally happy to be dealing with hearing aids instead of neuroblastoma (and I realize people on this list will not understand that but it is how it is). The hearing loss is correctable, and while I do have to keep on top of it, I just keep saying " We can deal with this! " . Elias is even signed up to take music lessons starting in a few weeks. And he is as musical as his brother. I have a friend here in Westchester whose daughter is a 4 year survivor of stage IV neuroblastoma. She didn't do TBI, but she had head radiation because of mets to her skull. She has to do the neuropsych every year because of it, but it never shows any learning problems. She also somehow escaped the hearing loss part - lucky kid! I think that may contribute to her lack of learning problems, actually. And cancelling the IEP because you couldn't get to the meetings was illegal, illegal, illegal! The law says clearly that meetings have to be scheduled so that the parents can participate. Our district tried to pull that one on us last spring. They scheduled the meeting right during an antibody round, and sent me a form that made it look like I had to take that meeting time or waive the right to be present. On the advice of friends who were knowledgable in this stuff, I took their stupid form and put my own note on it saying that the meeting had to be rescheduled so that I could be there. I totally understand how hard it is to focus on IEPs when your child is in treatment. Elias was entirely in the EI system during treatment, which is a little more parent-friendly. Even there, it was dicey - trying to get evals done when we had no idea if he would be inpatient or outpatient - oh boy was that hard. He actually had his speech eval done while he was inpatient at MSKCC. The EI person was willing to come there. And his motor skills eval was done in the evening after he had been discharged that morning. We called the evaluator on our drive home from MSKCC and said " can you come this evening? He's home, but we don't know for how long " . And she came. I think I set all that up mainly as a distraction from the horrors of chemo. It was something more hopeful to think about. Have a good trip, and I hope everything is working out well for you. Bonnie > > Hi Bonnie- > > She is about 10 months out of the second transplant. They do the > neuropsych eval before so they have a baseline to evaluate the late > effect impacts of exactly the things you mention (TBI, etc.). No > doubt that the consent form for the TBI, with possibility of cognitive > effects was the hardest to sign of the zillions I have signed. But it > was the best option we had and so we sucked it up and did it. One > nice thing is that the preliminary data from these levels of radiation > have shown not actual dimunition in IQ in the small cohort they have > followed for over five years. Without checking the protocol, I am not > 100% sure of the timing for the next eval. I think it is at two years > and I know that it is not valid to redo the eval before one year > (having to do with the testing itself). At this point, there is > nothing medically to be done to prevent the effects, so in a sense > there is no rush. > > As for hearing loss, she saw plenty of cisplatin and carboplatin as > well as the TBI and a few weeks of gentamicin and vancomicin which > are, obviously, potentiall problematic. But only carbo once > transplant started. Amazingly, she had no measureable hearing loss > before transplant. The nurse practioneer actually thought she had the > wrong audiology report. But in transplant she had carbo, TBI and some > gent, plus maybe the previous stuff kicked in, so what can ya do? > > Interesting about Elias's late walking and low tone with no clear > reason. Ruby was also in Early Intervention/Infants and Toddler, but > the transition to regular IDEA/IEP stuff got botched up because she > was hospitalized and in active treatment. We had an IEP in place, but > it was canceled since we couldn't participate in any meetings and Ruby > was in Philadelphia. I think I could have dealt with that and made > things easier for the transition, but I was, obviously, pretty focused > elsewhere. I have had many unchartible thoughts about the special ed > folks here in Baltimore through our five years in the system! But > it's a new day and I am hoping for better! > > Gotta run. > > Thanks- > > > > > > > > > Hi Bonnie- > > > > > > Thanks for the reply and hello. In answer to your questions: Yes, I > > > did find this list through you note on the ACOR Neuroblastoma list. > > > Thanks. I have been reading this one a bit, but have been so busy and > > > it is all such a new " language " to me, that I haven't been able to > > > absorb it. But now I think it is time I get going up the learning > > > curve about this hearing loss stuff! > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 29, 2006 Report Share Posted September 29, 2006 Ah yes, those consent forms. I remember having to sign off on those, and feeling so sad about the hearing loss part. We are a musical family, and it just seemed so awful. Now, of course, I am totally happy to be dealing with hearing aids instead of neuroblastoma (and I realize people on this list will not understand that but it is how it is). The hearing loss is correctable, and while I do have to keep on top of it, I just keep saying " We can deal with this! " . Elias is even signed up to take music lessons starting in a few weeks. And he is as musical as his brother. I have a friend here in Westchester whose daughter is a 4 year survivor of stage IV neuroblastoma. She didn't do TBI, but she had head radiation because of mets to her skull. She has to do the neuropsych every year because of it, but it never shows any learning problems. She also somehow escaped the hearing loss part - lucky kid! I think that may contribute to her lack of learning problems, actually. And cancelling the IEP because you couldn't get to the meetings was illegal, illegal, illegal! The law says clearly that meetings have to be scheduled so that the parents can participate. Our district tried to pull that one on us last spring. They scheduled the meeting right during an antibody round, and sent me a form that made it look like I had to take that meeting time or waive the right to be present. On the advice of friends who were knowledgable in this stuff, I took their stupid form and put my own note on it saying that the meeting had to be rescheduled so that I could be there. I totally understand how hard it is to focus on IEPs when your child is in treatment. Elias was entirely in the EI system during treatment, which is a little more parent-friendly. Even there, it was dicey - trying to get evals done when we had no idea if he would be inpatient or outpatient - oh boy was that hard. He actually had his speech eval done while he was inpatient at MSKCC. The EI person was willing to come there. And his motor skills eval was done in the evening after he had been discharged that morning. We called the evaluator on our drive home from MSKCC and said " can you come this evening? He's home, but we don't know for how long " . And she came. I think I set all that up mainly as a distraction from the horrors of chemo. It was something more hopeful to think about. Have a good trip, and I hope everything is working out well for you. Bonnie > > Hi Bonnie- > > She is about 10 months out of the second transplant. They do the > neuropsych eval before so they have a baseline to evaluate the late > effect impacts of exactly the things you mention (TBI, etc.). No > doubt that the consent form for the TBI, with possibility of cognitive > effects was the hardest to sign of the zillions I have signed. But it > was the best option we had and so we sucked it up and did it. One > nice thing is that the preliminary data from these levels of radiation > have shown not actual dimunition in IQ in the small cohort they have > followed for over five years. Without checking the protocol, I am not > 100% sure of the timing for the next eval. I think it is at two years > and I know that it is not valid to redo the eval before one year > (having to do with the testing itself). At this point, there is > nothing medically to be done to prevent the effects, so in a sense > there is no rush. > > As for hearing loss, she saw plenty of cisplatin and carboplatin as > well as the TBI and a few weeks of gentamicin and vancomicin which > are, obviously, potentiall problematic. But only carbo once > transplant started. Amazingly, she had no measureable hearing loss > before transplant. The nurse practioneer actually thought she had the > wrong audiology report. But in transplant she had carbo, TBI and some > gent, plus maybe the previous stuff kicked in, so what can ya do? > > Interesting about Elias's late walking and low tone with no clear > reason. Ruby was also in Early Intervention/Infants and Toddler, but > the transition to regular IDEA/IEP stuff got botched up because she > was hospitalized and in active treatment. We had an IEP in place, but > it was canceled since we couldn't participate in any meetings and Ruby > was in Philadelphia. I think I could have dealt with that and made > things easier for the transition, but I was, obviously, pretty focused > elsewhere. I have had many unchartible thoughts about the special ed > folks here in Baltimore through our five years in the system! But > it's a new day and I am hoping for better! > > Gotta run. > > Thanks- > > > > > > > > > Hi Bonnie- > > > > > > Thanks for the reply and hello. In answer to your questions: Yes, I > > > did find this list through you note on the ACOR Neuroblastoma list. > > > Thanks. I have been reading this one a bit, but have been so busy and > > > it is all such a new " language " to me, that I haven't been able to > > > absorb it. But now I think it is time I get going up the learning > > > curve about this hearing loss stuff! > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 29, 2006 Report Share Posted September 29, 2006 A deaf boy in our school district was first chair clarinet player several years ago. He used an instrument clipped onto his clarinet that showed if he was on pitch. Tish Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 29, 2006 Report Share Posted September 29, 2006 A deaf boy in our school district was first chair clarinet player several years ago. He used an instrument clipped onto his clarinet that showed if he was on pitch. Tish Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 29, 2006 Report Share Posted September 29, 2006 A deaf boy in our school district was first chair clarinet player several years ago. He used an instrument clipped onto his clarinet that showed if he was on pitch. Tish Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 1, 2006 Report Share Posted October 1, 2006 Now that is very cool! Thanks for sharing that. I come from the musical part of my family and had always hoped that Ruby would share that with me. Time will tell I guess. She has only recently seemed to develop much ability to sing on pitch and we have been living without my piano, so she hasn't had the benefit of being around that. But she has always connected with my guitar playing, singing, violin and some rhythm stuff, so hopefully it is in there and if it is, I suspect it will find a way to come out. Her paralysis makes dancing awkward, but I have also seen the amazing teenage wheelchair athletes we know at a dance and, you know, there is just no stopping a determined teenager from dancing when they are moved to do so! Thanks again for letting me know- > > A deaf boy in our school district was first chair clarinet player several > years ago. He used an instrument clipped onto his clarinet that showed if > he was on pitch. Tish > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 3, 2006 Report Share Posted October 3, 2006 Yeah, music is mostly my thing, not my wife's. Growing up, I played piano, violin, trombone, a little bit of other random things without lessons and sang inschool chrouses and productions. I added guitar later in life. Initially, Ruby wanted ot play guitar, but I think it is not a great instrument to start on. Especially young. Mostly because it is kind of hard for small hands without a lot of dexterity and strength. My guess is that it takes more strength than violin. But obviously lots of little kids do play, so who knows? I thikn that classically, violin and piano are good starters since they can clearly carry a melody. I actually got Ruby a nice ukelele when she was two or three which filled her desire for a guitar for a while and she has enjoyed strumming along, making up songs of one sort or another. I have great pictures of heron day +1 or +2 of transplant, sitting up in bed playing her uke and making up a song called " I'm not a honey bear " . Amazing to me to look at, knowing she has had lethalchemo at that point and is in limbo waiting to see if she will engraft or die and yet there she is singing. Ruby wanted a violin last year, but on the advice of my old piano teacher, I put her off. I did Suzuki as a kid and I think it has pluses nad missus. I decided I wanted her to learn another way if she did it and also not start so early that she then got bored or bummed at it. I am thinking that if she shows interest again, we'll go for it. I wish I had time to play or write or sing again now. Maybe when life gets simple again! lol! > > > > Now that is very cool! Thanks for sharing that. I come from the > > musical part of my family and had always hoped that Ruby would share > > that with me. Time will tell I guess. She has only recently seemed > > to develop much ability to sing on pitch and we have been living > > without my piano, so she hasn't had the benefit of being around that. > > But she has always connected with my guitar playing, singing, violin > > and some rhythm stuff, so hopefully it is in there and if it is, I > > suspect it will find a way to come out. Her paralysis makes dancing > > awkward, but I have also seen the amazing teenage wheelchair athletes > > we know at a dance and, you know, there is just no stopping a > > determined teenager from dancing when they are moved to do so! > > > > Thanks again for letting me know- > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 4, 2006 Report Share Posted October 4, 2006 Trust me, life will never get simple again... But you will have time to make music again. We're finally at that point again. You'll get there. I didn't do Suzuki as a child, and wish I had. I like the focus on ear training. My older son did two years of it, but bailed this year because he didn't like the teacher (whose heart wasn't in Suzuki anyway), and the book gets kind of boring. But Suzuki was great prep for playing fiddle music, which is all about playing by ear. He is really loving his fiddle lessons. I think the reason Elias wants to play guitar is because the Wiggles have a guitar player. Wiggles videos were his constant comfort during the 2 years of painful 3F8 treatments. He even met them once at MSKCC! To take this back on track with this mailing list - I am wondering about using the FM system when Elias starts music class. He starts a Dalcroize Eurythimics class in 2 weeks. The school says that the instructor has a lot of experience with special needs kids, and teaches in their music therapy division. But this class is for non-special-needs class. I am wondering if I should ask the instructor to use the FM system during class. Bonnie > > Yeah, music is mostly my thing, not my wife's. Growing up, I played > piano, violin, trombone, a little bit of other random things without > lessons and sang inschool chrouses and productions. I added guitar > later in life. Initially, Ruby wanted ot play guitar, but I think it > is not a great instrument to start on. Especially young. Mostly > because it is kind of hard for small hands without a lot of dexterity > and strength. My guess is that it takes more strength than violin. > But obviously lots of little kids do play, so who knows? I thikn that > classically, violin and piano are good starters since they can clearly > carry a melody. I actually got Ruby a nice ukelele when she was two > or three which filled her desire for a guitar for a while and she has > enjoyed strumming along, making up songs of one sort or another. I > have great pictures of heron day +1 or +2 of transplant, sitting up in > bed playing her uke and making up a song called " I'm not a honey > bear " . Amazing to me to look at, knowing she has had lethalchemo at > that point and is in limbo waiting to see if she will engraft or die > and yet there she is singing. > > Ruby wanted a violin last year, but on the advice of my old piano > teacher, I put her off. I did Suzuki as a kid and I think it has > pluses nad missus. I decided I wanted her to learn another way if she > did it and also not start so early that she then got bored or bummed > at it. I am thinking that if she shows interest again, we'll go for > it. I wish I had time to play or write or sing again now. Maybe when > life gets simple again! lol! > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 4, 2006 Report Share Posted October 4, 2006 How fun! My undergrad degree is in music - I'm a classical organist. When I found out that both my kids were deaf, I figured neither would do music but my Sam loves it. He's in two choruses and also plays the sax in band. My boy! We did have the teacher use the FM in music class and for the most part it worked well. He/she just needs to turn it off with a group sing (if that's the focus of the class) and one of our music teachers played the piano while the kids sang so in that situation, it needed to be turned off. You might want to monitor the class a time or two to see how it works but our guys liked it. Oh - once our boys could read, we'd have the teacher give them the words to the songs; before they read they'd give them to us and we'd go over the lyrics with our guys. Barbara Bonnie MacKellar wrote: > Trust me, life will never get simple again... But you will have time to > make music again. We're finally at that point again. You'll get there. > > I didn't do Suzuki as a child, and wish I had. I like the focus on > ear training. My older son did two years of it, but bailed this > year because he didn't like the teacher (whose heart wasn't > in Suzuki anyway), and the book gets kind of boring. But Suzuki > was great prep for playing fiddle music, which is all about > playing by ear. He is really loving his fiddle lessons. > > I think the reason Elias wants to play guitar is because > the Wiggles have a guitar player. Wiggles videos were > his constant comfort during the 2 years of painful 3F8 treatments. > He even met them once at MSKCC! > > To take this back on track with this mailing list - I am wondering > about using the FM system when Elias starts music class. > He starts a Dalcroize Eurythimics class in 2 weeks. The school > says that the instructor has a lot of experience with special > needs kids, and teaches in their music therapy division. But this > class is for non-special-needs class. I am wondering if I should > ask the instructor to use the FM system during class. > > Bonnie > > > >> Yeah, music is mostly my thing, not my wife's. Growing up, I played >> piano, violin, trombone, a little bit of other random things without >> lessons and sang inschool chrouses and productions. I added guitar >> later in life. Initially, Ruby wanted ot play guitar, but I think it >> is not a great instrument to start on. Especially young. Mostly >> because it is kind of hard for small hands without a lot of dexterity >> and strength. My guess is that it takes more strength than violin. >> But obviously lots of little kids do play, so who knows? I thikn that >> classically, violin and piano are good starters since they can clearly >> carry a melody. I actually got Ruby a nice ukelele when she was two >> or three which filled her desire for a guitar for a while and she has >> enjoyed strumming along, making up songs of one sort or another. I >> have great pictures of heron day +1 or +2 of transplant, sitting up in >> bed playing her uke and making up a song called " I'm not a honey >> bear " . Amazing to me to look at, knowing she has had lethalchemo at >> that point and is in limbo waiting to see if she will engraft or die >> and yet there she is singing. >> >> Ruby wanted a violin last year, but on the advice of my old piano >> teacher, I put her off. I did Suzuki as a kid and I think it has >> pluses nad missus. I decided I wanted her to learn another way if she >> did it and also not start so early that she then got bored or bummed >> at it. I am thinking that if she shows interest again, we'll go for >> it. I wish I had time to play or write or sing again now. Maybe when >> life gets simple again! lol! >> >> >> >> > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 4, 2006 Report Share Posted October 4, 2006 We did Yamaha with Maggie and her older sister. Older sister was " singing " on key before she was 1 year old! So she definitely inherited the family's musical ear. She did Yamaha and then went on to regular piano lessons from the Yamaha teacher who knew how to make the transition. She sings very well and learned to harmonize in about an hour. I benefitted from the solfege singing to the point where I can now sing alto harmony (the musical ear is in my husband's family!). But it took me a few YEARS. Maggie didn't get much out of Yamaha but I really think she might have if we'd had the FM then. She did develop a love for music though. We found in 5th grade when she tried to play the baritone horn that she simply couldn't hear the difference in half steps. Was fine with whole steps. We have found over the years that if she sings along with a CD and knows the song well she can carry a tune, but it takes work on her part. We have always chalked it up to the hearing loss but there are plenty of people with hearing loss that can hear and do music. So Bonnie, I'd definitely suggest trying the FM in music class. Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.