Guest guest Posted October 21, 2004 Report Share Posted October 21, 2004 In a message dated 10/21/2004 3:35:32 PM Eastern Daylight Time, tanya@... writes: That's what I saw happening with my son. He would stand there with this dazed look on his face, and wouldn't respond to me talking right behind him directly into his hearing aid. The teacher's voice, loud and distorted combined with all the backround noise, overwelmed him - and she wasn't always talking to him anyway, which confused him even more. Did Ian end up with an FM system ever? , Yes, he did get the little boot style system. It was what our doctors had requested all along. The school put the words " FM system " into his IEP and when the time came for the system to be there in the fall of 5th grade, we found they had cobbled together this sound field system using parts from the AV department. The micorphone looked like something a 1980s game show host would hold, not something that clipped easily to a shirt. They'd created some kind of neck loop so the teacher could wear it. But it was shaped like a regular microphone, so kids would hold it and pass it around the room as they were reading. The speakers were mounted on the walls. One was right next to where Ian sat. It was terrible. The poor kid could not follow a thing. The one teacher kept forgetting he was wearing the microphone, so he'd go out in the hall and the entire class would hear everything. Sometimes it was conversations with other teachers on topics that were inappropriate for the kids to overhear. Once he took a kid out to reprimand him, and the whole room listened along. Once he wore it to the bathroom ... yuck!! Ian also got that deer-in-the-headlights look. The increase in overall sound was incredibly overwhelming. It was an inclusion room, so there was also a Spec Ed teacher. She was a screamer in a quiet room, so you can just imagine how her volume increased in that room ... she'd scream as though she was trying to be heard over her own magnified voice. It was simply terrible. We demanded that the stupid system be removed but they refused because if it came down they would not be in compliance with Ian's IEP. On several occassions I think Ian intentionally messed with the microphone or the wiring so they'd have to send it over to the AV dept to get it fixed. He'd come home and happily tell me that the FM system would be down for a week or two for fixing. He'd be thrilled. Thedistrict wouldn't listen to us about his actual needs, so I pulled in the big guns. Our professionals wrote letters. I contacted the State Ed Dept and faxed them descriptions of the way Ian's IEP was being creatively interpreted. The district fought us on whatever grounds they could invent. They delayed meetings because certain people could not make it, demanded new evaluations from their own experts to argue that ours were wrong --even after they'd agreed with ours. (We'd been to Columbia Prebysterian and Montefiore Hospitals -- who were they going to get to argue with them?!) They intentionally did things that would cause us to cancel or delay meetings (inviting extra people to the meetings without prior notice and then insisting that they were necessary, I'd refuse to continue the meeting and demand it be rescheduled). At some point the CSE chairman started skipping my meetings but showing up for the ones right before or after mine. (He really didn't like me after I offered to help him fill out the state requisition forms so he could get the district reimbursed for services. He had claimed to be having trouble with getting money for Ian's " expensive " services.) And finally, I called the lawyer to turn it all over to him to handle. By then it was mid-April. At about the same time as we were ready to sue the school, the CSE chairman (he was also an assistant superintendent) quietly disappeared and an interum chair was brought in. Long story made shorter, the new guy looked over Ian's file and said he could not understand why the district had been fighting us. He gave Ian everything he needed and adjusted the IEP in every detail we'd requested. He was also astounded at some of the papers the district had asked us to sign -- they were illegal. (I'd also sent copies of those papers to the State Ed Dept, not realizing they were illegal .... I was just looking for help and an explanation as to what they were. The State Ed Dept got just a touch angry over those. Oh well. -- grin!) When Ian started 6th grade, the FM system was waiting for him. The TOD had already trained his new classroom teachers at in-service sessions the week before school ... and all done without me nudging anyone. I definitely called to make sure things were happening, but when I'd call, I would find that things were already completed. I was stunned at how quickly and easily things could happen when the district wanted to cooperate. So, yes, he did get the FM system. He also got a wonderfully qualified TOD every day. And the school is still very intent on making sure Ian has what he needs. My reputation preceeds me, and the new, permanent, CSE chair told me at our first meeting that it was her intention to make sure his needs were met and that I would have no reason to contact the State again. Once he was transferred over to a 504 plan, she was very blunt about the havoc I could cause if I started with complaints to the Dept. of Labor (in NY they oversee the 504 enforcement). She was pushing for Ian to be moved to a 504 plan because that is where he belonged given his issues. She was right, but it took 3 private meetings for me to agree. I sat there and argued the law with her. We went over the difference between 504 and IDEA in annoying detail. I made her explain every detail of who was in charge of oversight of 504 and how complaints would be processed and resolved. Poor woman, I am sure she wanted to strangle me. (grin) But in past 3 years since then, I've never even had to threaten to complain to the State. Truthfully, since she has been in charge things have been very different in our district. All the kids are benefiting from the fact that she knows her stuff and is doing the right things for them. Does that mean that parents don't have to prove their children's needs are valid and fight for some services? No, but it is now much easier. Two summers ago she took a course about CART because there are a few kids coming up through the schools who may need it. (Ian is one.) Imagine that?! Actually being prepared and informed about new technology. Sorry to ramble on so long ... you asked me a simple question and I gave you a novel in response. (grin) Best -- Jill Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 21, 2004 Report Share Posted October 21, 2004 In a message dated 10/21/2004 3:35:32 PM Eastern Daylight Time, tanya@... writes: That's what I saw happening with my son. He would stand there with this dazed look on his face, and wouldn't respond to me talking right behind him directly into his hearing aid. The teacher's voice, loud and distorted combined with all the backround noise, overwelmed him - and she wasn't always talking to him anyway, which confused him even more. Did Ian end up with an FM system ever? , Yes, he did get the little boot style system. It was what our doctors had requested all along. The school put the words " FM system " into his IEP and when the time came for the system to be there in the fall of 5th grade, we found they had cobbled together this sound field system using parts from the AV department. The micorphone looked like something a 1980s game show host would hold, not something that clipped easily to a shirt. They'd created some kind of neck loop so the teacher could wear it. But it was shaped like a regular microphone, so kids would hold it and pass it around the room as they were reading. The speakers were mounted on the walls. One was right next to where Ian sat. It was terrible. The poor kid could not follow a thing. The one teacher kept forgetting he was wearing the microphone, so he'd go out in the hall and the entire class would hear everything. Sometimes it was conversations with other teachers on topics that were inappropriate for the kids to overhear. Once he took a kid out to reprimand him, and the whole room listened along. Once he wore it to the bathroom ... yuck!! Ian also got that deer-in-the-headlights look. The increase in overall sound was incredibly overwhelming. It was an inclusion room, so there was also a Spec Ed teacher. She was a screamer in a quiet room, so you can just imagine how her volume increased in that room ... she'd scream as though she was trying to be heard over her own magnified voice. It was simply terrible. We demanded that the stupid system be removed but they refused because if it came down they would not be in compliance with Ian's IEP. On several occassions I think Ian intentionally messed with the microphone or the wiring so they'd have to send it over to the AV dept to get it fixed. He'd come home and happily tell me that the FM system would be down for a week or two for fixing. He'd be thrilled. Thedistrict wouldn't listen to us about his actual needs, so I pulled in the big guns. Our professionals wrote letters. I contacted the State Ed Dept and faxed them descriptions of the way Ian's IEP was being creatively interpreted. The district fought us on whatever grounds they could invent. They delayed meetings because certain people could not make it, demanded new evaluations from their own experts to argue that ours were wrong --even after they'd agreed with ours. (We'd been to Columbia Prebysterian and Montefiore Hospitals -- who were they going to get to argue with them?!) They intentionally did things that would cause us to cancel or delay meetings (inviting extra people to the meetings without prior notice and then insisting that they were necessary, I'd refuse to continue the meeting and demand it be rescheduled). At some point the CSE chairman started skipping my meetings but showing up for the ones right before or after mine. (He really didn't like me after I offered to help him fill out the state requisition forms so he could get the district reimbursed for services. He had claimed to be having trouble with getting money for Ian's " expensive " services.) And finally, I called the lawyer to turn it all over to him to handle. By then it was mid-April. At about the same time as we were ready to sue the school, the CSE chairman (he was also an assistant superintendent) quietly disappeared and an interum chair was brought in. Long story made shorter, the new guy looked over Ian's file and said he could not understand why the district had been fighting us. He gave Ian everything he needed and adjusted the IEP in every detail we'd requested. He was also astounded at some of the papers the district had asked us to sign -- they were illegal. (I'd also sent copies of those papers to the State Ed Dept, not realizing they were illegal .... I was just looking for help and an explanation as to what they were. The State Ed Dept got just a touch angry over those. Oh well. -- grin!) When Ian started 6th grade, the FM system was waiting for him. The TOD had already trained his new classroom teachers at in-service sessions the week before school ... and all done without me nudging anyone. I definitely called to make sure things were happening, but when I'd call, I would find that things were already completed. I was stunned at how quickly and easily things could happen when the district wanted to cooperate. So, yes, he did get the FM system. He also got a wonderfully qualified TOD every day. And the school is still very intent on making sure Ian has what he needs. My reputation preceeds me, and the new, permanent, CSE chair told me at our first meeting that it was her intention to make sure his needs were met and that I would have no reason to contact the State again. Once he was transferred over to a 504 plan, she was very blunt about the havoc I could cause if I started with complaints to the Dept. of Labor (in NY they oversee the 504 enforcement). She was pushing for Ian to be moved to a 504 plan because that is where he belonged given his issues. She was right, but it took 3 private meetings for me to agree. I sat there and argued the law with her. We went over the difference between 504 and IDEA in annoying detail. I made her explain every detail of who was in charge of oversight of 504 and how complaints would be processed and resolved. Poor woman, I am sure she wanted to strangle me. (grin) But in past 3 years since then, I've never even had to threaten to complain to the State. Truthfully, since she has been in charge things have been very different in our district. All the kids are benefiting from the fact that she knows her stuff and is doing the right things for them. Does that mean that parents don't have to prove their children's needs are valid and fight for some services? No, but it is now much easier. Two summers ago she took a course about CART because there are a few kids coming up through the schools who may need it. (Ian is one.) Imagine that?! Actually being prepared and informed about new technology. Sorry to ramble on so long ... you asked me a simple question and I gave you a novel in response. (grin) Best -- Jill Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 22, 2004 Report Share Posted October 22, 2004 --- You wrote: Yes thank you I have just applied for an advocate for my son and they are going to see what they can do I am just all too new to all of this and I feel as though people are running all over me with what i can't do and I need some one to say oh yes she can! --- end of quote --- Hi - go girl! That's exactly what you should be doing. I was talking with another listmate this morning (it was *so* nice to get to know you by phone, Lydia!) and remembering when my son was first diagnosed and how everybody at that point in your life knows more than you do about hearing loss. I think we all tend to believe whoever our first audiologist was, etc. You're asking excellent questions and having an advocate is the right way to go. Take care Barbara Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 22, 2004 Report Share Posted October 22, 2004 --- Kay wrote: A mild hearing loss is educationally significant - just ask anyone who has one (like me). If I'm not sitting near the front or if there is a lot of background noise, I miss a lot and I find myself using speech-reading quite a bit. --- end of quote --- When you consider that Kay is an adult who hasn't always had hearing loss and then think about a young child who hasn't heard perfectly from the beginning - you see what the issues are! It's just not a level playing field for any kid with a hearing loss unless they're properly aided and get services. Barbara Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 22, 2004 Report Share Posted October 22, 2004 --- Kay wrote: A mild hearing loss is educationally significant - just ask anyone who has one (like me). If I'm not sitting near the front or if there is a lot of background noise, I miss a lot and I find myself using speech-reading quite a bit. --- end of quote --- When you consider that Kay is an adult who hasn't always had hearing loss and then think about a young child who hasn't heard perfectly from the beginning - you see what the issues are! It's just not a level playing field for any kid with a hearing loss unless they're properly aided and get services. Barbara Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 22, 2004 Report Share Posted October 22, 2004 --- Kay wrote: A mild hearing loss is educationally significant - just ask anyone who has one (like me). If I'm not sitting near the front or if there is a lot of background noise, I miss a lot and I find myself using speech-reading quite a bit. --- end of quote --- When you consider that Kay is an adult who hasn't always had hearing loss and then think about a young child who hasn't heard perfectly from the beginning - you see what the issues are! It's just not a level playing field for any kid with a hearing loss unless they're properly aided and get services. Barbara Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 22, 2004 Report Share Posted October 22, 2004 A mild hearing loss is educationally significant - just ask anyone who has one (like me). If I'm not sitting near the front or if there is a lot of background noise, I miss a lot and I find myself using speech-reading quite a bit. If your audiologist doesn't do it, ask for testing both with and without background noise. There will probably be quite a bit of a change in the numbers. You will probably be able to find some quotes you can use in your efforts to convice 'the powers that be' on this page: http://www.listen-up.org/oral/flexer.htm I actually put that page up because all too often, a mild loss is not considered much of a loss - and I know differently. ;-) Hugs to all, Kay Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 22, 2004 Report Share Posted October 22, 2004 A mild hearing loss is educationally significant - just ask anyone who has one (like me). If I'm not sitting near the front or if there is a lot of background noise, I miss a lot and I find myself using speech-reading quite a bit. If your audiologist doesn't do it, ask for testing both with and without background noise. There will probably be quite a bit of a change in the numbers. You will probably be able to find some quotes you can use in your efforts to convice 'the powers that be' on this page: http://www.listen-up.org/oral/flexer.htm I actually put that page up because all too often, a mild loss is not considered much of a loss - and I know differently. ;-) Hugs to all, Kay Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 22, 2004 Report Share Posted October 22, 2004 A mild hearing loss is educationally significant - just ask anyone who has one (like me). If I'm not sitting near the front or if there is a lot of background noise, I miss a lot and I find myself using speech-reading quite a bit. If your audiologist doesn't do it, ask for testing both with and without background noise. There will probably be quite a bit of a change in the numbers. You will probably be able to find some quotes you can use in your efforts to convice 'the powers that be' on this page: http://www.listen-up.org/oral/flexer.htm I actually put that page up because all too often, a mild loss is not considered much of a loss - and I know differently. ;-) Hugs to all, Kay Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 23, 2004 Report Share Posted October 23, 2004 In a message dated 10/22/2004 7:10:15 PM Eastern Daylight Time, kdidactiv ity@... writes: Yes thank you I have just applied for an advocate for my son and they are going to see what they can do I am just all too new to all of this and I feel as though people are running all over me with what i can't do and I need some one to say oh yes she can! , I think everyone on this list will join me in screaming to the heavens a loud " Yes you can! " You are doing the right stuff by asking questions and trying to learn everything you can. So ... keep it up, because you really can get the things your child needs. You just need to figure out how to do it. So, don't get discouraged. You're doing the right things. --Jill Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 23, 2004 Report Share Posted October 23, 2004 In a message dated 10/22/2004 7:10:15 PM Eastern Daylight Time, kdidactiv ity@... writes: Yes thank you I have just applied for an advocate for my son and they are going to see what they can do I am just all too new to all of this and I feel as though people are running all over me with what i can't do and I need some one to say oh yes she can! , I think everyone on this list will join me in screaming to the heavens a loud " Yes you can! " You are doing the right stuff by asking questions and trying to learn everything you can. So ... keep it up, because you really can get the things your child needs. You just need to figure out how to do it. So, don't get discouraged. You're doing the right things. --Jill Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 23, 2004 Report Share Posted October 23, 2004 In a message dated 10/22/2004 7:10:15 PM Eastern Daylight Time, kdidactiv ity@... writes: Yes thank you I have just applied for an advocate for my son and they are going to see what they can do I am just all too new to all of this and I feel as though people are running all over me with what i can't do and I need some one to say oh yes she can! , I think everyone on this list will join me in screaming to the heavens a loud " Yes you can! " You are doing the right stuff by asking questions and trying to learn everything you can. So ... keep it up, because you really can get the things your child needs. You just need to figure out how to do it. So, don't get discouraged. You're doing the right things. --Jill Quote Link to comment Share on other sites More sharing options...
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